Lyme-Over the Edge

Running on the Hamster Wheel--David Skidmore

2011-12-19T09:43:00.000-08:00

One thing there is plenty of room for in this world is another Lyme story! My guess is that as time marches on there are going to be a lot more stories to come. Much like all the rest of us seemingly whiney bunch, I will start from the beginning.

It was autumn, November of 2009. I was going to go on my first deer hunt with my father since I was a teenager; I am now fifty-five years old and managed to stay away from the big hunt for many years. I can remember as a kid never being all that enamored with the idea of blasting away at some poor living creature that roamed about merely looking to feed itself, but I’m sure I’m not the only son in history that followed his dad faithfully into the woods like a good hunting dog. I must admit however, I did like the whole hunting wardrobe thing and toting a gun around; it seemed like a big deal at the time.

There we were, my sister, her two children and my father surveying my sister's farm, or scouting the woodlands for signs of deer for the upcoming hunt. My nieces, not unlike the deer themselves, pranced through the woods like gazelle, flying over rocks and felled trees. I can remember just wanting to get back to the house and have a cold beer! Finally after an hour or so of this, we pinpointed our spots to wait for the elusive deer, and back to the house we headed.

With the very welcoming house in sight and still some daylight, I was close enough to my father to notice a little speck of something on his jacket; in fact as I got closer I noticed several specks. Much to my dismay, upon a more detailed evaluation, these specks had little legs and were moving! Ticks! Many ticks were clinging on for a nice warm meal. Still more disturbing was the fact that I too had been transporting these horrid little creatures back to humanity and our dwellings.

We brushed ourselves and each other off feverishly, although my sister and her two very woodland-like children thought almost nothing of the whole affair. I on the other hand couldn’t have been more aghast if I were lowered into a pit of live rats! I’ve never been a big fan of any creature that has the ability to stick you like a dirty syringe and suck out your life’s blood, and in return--and depending on the little bastard's prior host--leave you with all kinds of little parasitic wonders to wreak havoc on your body!

Having made it to the warmth of my sister’s house and that long awaited cold beer, suddenly it was all a moment of nervous laughter and a story for the grandchildren! By the way, the nervous laughter was accompanied now and then by a quick visual survey of my body with an occasional feeling about of my scalp. Now that the deer-scouting excursion was over, it was back to Brooklyn, NY where I live, for a nice hot shower!

To this day, almost three years later I will never forget being blanketed by the warmth of the shower and comforted by the thought that I did indeed leave those horrid little creatures back in Pennsylvania. Yes! I was thinking about them still! As I washed my body, my hand struck a foreign object on the back of my left arm. Now at 55 years of age and having had many showers, I am fairly familiar with my own body. This was something very new I was feeling. Whatever it was, it wasn’t budging--a mole perhaps that I had never felt before? Do moles pop up overnight? I don’t think so!

Staring back at me in the mirror was a very small black dot, but what really caught my eye was the very red, very large rash surrounding the black dot. With his head buried deep in my arm like an ostrich with its head in the sand, he, or she, was having a smorgasbord and slurping away at my life’s blood! This was going to end very quickly! I looked for and found the tweezers, got as close to his little head as I could, and very gingerly squeezed the tweezers against the sides of his head and gently pulled. His little legs writhed as if to say, "I’m not done yet!" There he was, at the tip of the tweezers and at my mercy. Like a little kid with all the meanness I could muster, I squeezed with vise-like pressure in hopes that his last thoughts might be “I hopped on the wrong guy!”

Upon giving him a burial at sea--in the toilet--I called my doctor who without examination called in to the pharmacy and requested a prescription of oral Doxycycline @ 100mg twice a day. I took this for the next twenty days.

Fast forward to January 2010, with the Flu season still annoying some, I began to come down with what I thought was just that. Two or three weeks later as these symptoms persisted, I went back to my doctor, who gave me a checkup and decided that indeed it was a lingering flu and that we would have to ride it out!

Spring had passed but my “flu” hadn’t! And in fact the symptoms we’re not only getting worse, but new ones were finding their way into the mix. Aside from the usual chills, sweating, and nausea, I was getting leg cramps with head, neck, and chest pain that would seemingly move about my mid section, and right shoulder pain. Something very weird was going on inside my body.

Among the many specialists, I was seeing an eye, ear, nose, and throat doctor for what now had become severe head and neck pain. A cat scan was ordered. I was called and told that all looked normal, but I was far from convinced. About a week later I was once again called by this same doctor and told that something had been missed, and that I had a sinus infection. I was put on a week of antibiotics. Now here is where it gets fun! I got a third call by this same doctor's office and was told that once again there had been a misreading of the films, and that I had an ominous-sounding something called “elevated brain swelling.” Without any explanation I was referred to a neurologist. I didn’t know what any of this meant, or how bad it might be, but I was happy to have something in the way of a real diagnosis which might explain what I was going through!

Did you ever walk into an office and meet someone and know immediately that you were not going to like this person? Enter my new neurologist! She should have been sitting in a meat locker, as her personality was like ice. As she spoke to me in what sounded like a very thick eastern European accent, I was convinced that she had a torture room behind a hidden panel in her office. She proceeded to inspect me without my saying much of anything other than to answer yes or no; she was not one for elaboration! She did manage to ask me what I was there for. I told her I was there for severe head and neck pain with the possible diagnosis of elevated brain swelling. Upon her physical checkup, she looked at me and said exactly what I did not want to hear. "You’re fine!" She said that upon her review of the previous MRI all was well, and she gave me a prescription for Cymbalta and sent me on my way with my tail between my legs.

Not long after, the pain got unbearable in the upper neck region, and I reluctantly went back to the original eye, ear, nose, and throat doctor who misdiagnosed me twice, or at least once. He called the emergency room without haste and arranged for a lumbar spinal tap for possible meningitis. I also told them that in addition to the head and neck pain with the flu-like conditions that endured, I was developing a whistle or hiss-like noise in my ears, or more specifically a sound that resembled a sea shell that was placed on my ear and sounded like the distant ocean. I later came to know this sound as tinnitus.

They wheeled me into a room that was quarantined and was bustling with doctors and nurses all wearing masks. I felt like I had leprosy! They began by putting a line in my arm and intravenously started a bag of Vancomycin and Ceftriaxone in the event that I did have meningitis. If you have never had a spinal tap--I have had five of them--I would hold off as long as you can on this one. I didn’t enjoy the first, and they only got worse with time and anticipation.

As fate or luck would have it, I did not have meningitis, although I would have been happy to have a diagnosis so I could be treated and hopefully get back to life! Once again, off I went to continue my quest and to find what ailed me. If ever I believed in miracles, it was a day or two after my spinal tap; I miraculously was lifted of all symptoms, every last one of them! I’m not, nor have I ever been, much of a religious person. Three years of Catholic school and rulers on my knuckles may have had something to do with that. But the day I noticed my agony had disappeared, I did say a “thank you God." Maybe two of them. I enjoyed the rest of the summer not even thinking back on what had seemed an eternity of darkness, and pain--I was cured!

Oct. 9th was a Saturday, and of all places I could have been enjoying myself, I was at work. But as I’ve always told my kids, “you do what you gotta do.” I remember sitting in my office and eating breakfast while working, and while sipping on my coffee I began to get a bit of discomfort in my left lower abdomen. I didn’t give it all that much more thought, but as the day wore on, not only did the pain intensify, it moved up into my right mid section. What now? As the day wore on, this pain began to branch out throughout my body; I started to get leg cramps, pain in my right shoulder, chest pain, and at some point the head and neck pain were back to remind me what I had been so happily missing. I was right back where I was in the beginning of the summer!

Within a short period of time, I was running on the hamster wheel again, in and out of doctor’s offices and hospitals, chasing the seemingly unidentifiable and very elusive whatever it was that plagued me!

Among the many new doctors I had encountered, given the multiple symptoms and more specifically the chest pain, I was referred to a well known cardiologist and surgeon who among many things preformed Cardiac catheterization. Because of the intense chest pain I had a little plumbing work done to take a closer look at my heart. I of course couldn’t have expected anything else regarding the results other than the one word I was becoming all too familiar with--normal! This seemingly endless and uneventful chase was getting really old, not to mention embarrassing. I began to think like some of these doctors of one disease, hypochondriac. In my mind or not, I continued to physically get more and more sick!

I can’t remember which came first, the walking of my dog and forgetting what I was doing, or the running over to Target for a purchase. As stood there with all these red jerseys running about, I couldn’t figure out where I was or what I was doing there. This was not only a new symptom, this was the beginning of a living hell. This is something that in my wildest dreams I could have never conjured up. Speaking of dreams, even they were altered to the point of trying in a dead sleep to scream out for help! This was all going somewhere that was a very dark and scary place.

As the headaches, body pain, and tinnitus continued to spiral me downward with all the neurological symptoms, I was referred to another eye, ear, nose, and throat specialist for the worsening ear sound and pain. She was a God-send, very smart, very approachable and kind. After many visits and hearing tests it was found that I had lost some hearing in my left ear, but because of the often severe head and neck pain and general decline of health, she referred me to yet another ENT. She told me that there was nothing she could do for the tinnitus.

Looking back, I suspect she had her suspicions as to a diagnosis, which she kept to herself as this was not her specialty. She told me that the other doctor she wanted me to see was wonderful and was able to do “something” with the neck that helped many? “My neck?” I wasn’t convinced that whatever he might be able to do to by manipulating my neck in the way of adjustments or otherwise would do much for all that I was experiencing. But at this point I would try anything! I made an appointment to go and see what could have been my 25th doctor.

His office was very feng shui and had a warm tone to it, from the tea offerings in the waiting area to the receptionist who was pleasant and inviting--a soothing entrance for anyone feeling under the weather. The doctor came out to greet me; he was soft-spoken and seemed, when I shook his hand, a gentle soul. We walked back to his office, and my tale of illness began to flow as if a dam were opened up. He listened carefully and with compassion. Aside from my merely telling him about my many ailments, he could see that I was a very sick person. He asked me the one question that had eluded all others for so long, “Do you ever remember being bitten by a tick?” My mind and memory, although not serving me too well, raced back to the reflection in the bathroom mirror of the little black dot with the big red circle on the back of my arm. "Yes!" I said. "It was November of 2009!”

Why did it take upwards of twenty-something doctors, including hospital visits and stays, to even pose this seemingly simple question? Even my own doctor who administered the Doxycycline for the bite never once mentioned Lyme disease. Why--when I was admitted to the emergency room and administered two very large bags of antibiotics for possible meningitis--did I miraculously shed all my symptoms for the summer of 2010? Why was this one disease so out of the realm of possibility, especially given the fact that--unlike many--I had the tick and the rash?

Having gone so long without a diagnosis--although some poor souls have gone longer--the Lyme disease had found a nice warm cozy place to thrive and do what it does best, destroy body and soul, and life!

Since seeing this one doctor who posed one of the more important questions in my life regarding Lyme disease, my health had further declined, so I was once again referred to another doctor, an infectious disease specialist. Unlike many doctors and their knowledge--or lack of it--of Lyme disease, I was lucky enough to walk into the one office in the city of someone that not only understood the disease, but was willing to go the distance in terms of long-term treatment.

Although I cannot say enough about this one doctor, I did pull off the ramp for a bit and explored others out of frustration. While in treatment with him, I developed a blood clot from the PICC line that was feeding me the much needed antibiotic Ceftriaxone, and had two more hospital stays, one of which was from elevated spinal fluid causing head pain that brought tears. Obviously none of this had anything to do with him regarding his treatment, but the one thing in life I was not given is patience. All I can say about my exit and exploration is that there are those who will find opportunity, and the Lyme community presents itself with an endless pool of those of us who will do and pay anything to seek help. The opportunists who await their prey will devour their savings, their emotions, and more sadly, their hope.

This has been a journey that I--or anyone with Lyme disease--had not planned on. But the one thing I certainly never planned on was the lack of help or knowledge in the medical community. For the most part there are a lot of awfully good people out there serving the medical community, but something is very wrong in the research and lack of funding and treatment, as there are so many opinions with no seemingly right one! Much work needs to be done.

David Skidmore, New York

Rory Pronk--His Father Tells the Story

2011-12-02T08:17:00.000-08:00

Our son’s story is a sad one, but one with a good outcome, hope and further awareness.

He contracted Bb and possibly a co-infection while working for an entire summer in an outdoor camp for inner NYC kids in the NJ Appalachians. He was 20 at the time. Being outdoors a lot of the time for both work as a geologist--and pleasure--myself, I was aware of LD and warned him about tick bites. The staff training included tick checks. But the staff nurse was not a local, and when he came down with a sinus infection in the middle of summer, put him on a week of Abx. He "recovered."

Upon return to NB Canada, school (4th year of University) became increasingly burdensome as he suffered memory and attention issues. He had been a college soccer goalie, but he could not stay active because of physical pain. Depression and even drinking small amounts of alcohol are not good for LD victims. At the time we thought he was just trying to find his way. He decided to take a term off and work for a while and go back the next fall with the same results--concentration problems and memory issues.

Then my wife and I were in the north on assignment for a year, and upon our return found him dealing with severe depression. He was in pain continually and “feeling like an 80-year old” and no one thought he was ill. He looked OK. We had him assessed at the emergency clinic. A 20 minute talk with a psychiatrist on staff will get you on a load of meds that are not really good for you and highly addictive. No testing, just a “clinical diagnosis” after a short interview. How ironic.

How does this make sense? The thing was, I knew about the disease and that it was endemic in the area where he had been, but I did not really know anything about short and long term symptoms. I knew something was not right and started researching LD and had him self-diagnosed, but did not find a doctor to confirm it. Testing through the Canadian system is inadequate as well, so that went nowhere.

After watching a W-5 episode about the disease on CTV I was convinced that I was on the right track and contacted the doctor in a neighboring province who was featured in the documentary. A phone call, a day's drive, and a one hour interview about the facts--endemic area, tick bites, progression of symptoms--and assessment confirmed our suspicions. He had Lyme. This was more than 2 1/2 years after he was infected.

He is a big man, and large doses of Abx and an anti-malarial drug were started. As predicted he did react and initially got worse, then slowly started getting better. In conversations with the doctor we decided the anti-depressants were not necessary anymore and actually blurred the symptom assessment. Taking him off those was a good decision, but also was a terrible ordeal for a few weeks as the weaning-off resulted in terrible side effects. Doctors have no problem putting people on these for years and years, but are wary about prescribing long term Abx. This is the irony of many of these cases. People are pumped full of drugs of all kinds without a proper test, through elimination and trial and error. But for some reason long-term Abx are evil?

To make a long story short, after 14 months of Abx (a different one for the last 3 months because of a suspected co-infection), anti-malarial drugs, a good diet (although I did not at the time know about sugar, alcohol, and caffeine), and supplements, slowly but surely he got better. Through this all he worked his job most of the time, because of a very understanding friend. At the end of his ordeal met a wonderful young woman whom he will marry next August. At this time he is 25 and almost 5 years past the initial infection. I would say he is 99.9% better, but we are keeping a close eye on his health. He is still dealing with losing the weight he put on during the time of depression and anti-depressants. He is active again--soccer, hockey, and walks with his wife-to-be. So THERE IS HOPE even if you have lost 5 years of your life.

I think he was--we were--lucky. He had a very strong immune system to start with, friends to help him, a doctor who chose to treat his symptoms without relying on tests but on clinical diagnosis, the right combination of meds from the start, and a mother who knows how to put together meals that strengthen the immune system. AND we prayed a lot for healing.

Since then we have talked to at least a dozen people with similar stories that we have been able to help along the path of healing. But there are friends with diagnoses like Parkinson’s who are not willing to push for that extra step to get properly tested "outside" the officially accepted channels, and I think that is a crime in itself. THEY TRUST THEIR DOCTORS BLINDLY. And there are those whose symptoms are way more complicated and/or advanced, or those who have been invaded for longer periods or already had a compromised immune system.

We are seeing some improvement in doctors who are willing to look seriously at the possibility of LD, but there are still many people in the health care profession and in the Department of Health who are not seeing the real danger of ignoring the wide-spread threat of contracting the disease. And because of this we are spending hundreds of thousands of dollars on testing and specialists without looking at the reality of Lyme disease. No wonder health care systems all over the world are in dire straits.

Rory Pronk, Canada

No Boundaries--Sarah Lamando

2011-11-29T08:00:00.000-08:00

Sarah Lamando was interviewed by the administrator of http://www.tiredoflyme.com/. The following is her story:

How did you figure out that you might have Lyme Disease?

I was a teenager when I first found out, 17 years old to be exact. I woke up one morning with a crushing, light-sensitive headache that was accompanied by flu-like symptoms, aching joints and severe muscle pain and fatigue. Immediately, my mother took me to my primary care doctor and I was tested for Lyme. Tests came back negative, so the doctor assumed it was a virus and would pass, which it did, about a week afterwards.

Three months later, however, I developed a fatigue so severe that I could barely make it up the stairs to my next class in school without feeling like I was going to collapse, and the exertion from it actually caused my heart to start skipping beats. The next day I awoke to find numerous red rings and egg sized bruises scattered all over my body. This is where I started to worry. I went back to my doctor, who seemed rather dismayed by my presentation, re-tested me for Lyme, which now came back very positive, and gave me two weeks of doxy. Surprisingly, it actually worked, and being the stupid teenager I was, the minute I felt better, I threw out the rest of the bottle, and was quite happy to resume my "normal" life. Unfortunately, in the years to come, my life would turn out to be anything but normal...

What were some of the symptoms you have experienced from Lyme?

A better question would be "what symptoms haven't I experienced from Lyme!"

My first symptom list is described above. At the beginning it was purely physical, and in retrospect didn't last very long...three months is nothing compared to how long it's taken me to recover from the later stages of this disease.

In 2002, I had my first relapse. It was simply incredible to watch how fast the disease progressed and how quickly it seemed to take over every aspect of my physical, emotional, and mental being. During this period, my list of symptoms included severe, searing pain that started in my lower back and quickly traveled up my entire spine. Once that pain reached my neck and head, my motor-coordination abilities became non-existent. I must have looked like a drunken lunatic bouncing all over the place, and running into things! I also developed extreme mood swings, aggressive, rage filled thoughts, short-term memory loss, brain fog, getting lost in familiar places, peripheral neuralgia, night sweats, horrific nightmares, and severe anxiety. Once I started treatment again, my symptoms became so bad that I developed photophobia, agoraphobia, severe insomnia, unbelievable joint pain (in every single facet), suicidal thoughts, and severe depression.

It took me six months to recover from that "bout," and afterwards, as long as I took the oral antibiotics everyday, I was pretty much okay.

September 2007 is when things really got weird. I took some very bad advice, and decided to stop taking those antibiotics that I had been on for nearly four years. Within five days my whole world changed. I started to have non-epileptic seizures, walking impairments, periods of paralysis as well as what looked like an early onset of dementia. I often did not recognize my family, could not hold a conversation for the life of me, had no sense of time or money. I couldn't even tell you what day it was. Sensory overload also became a huge issue for me at this time, so I guess you could say that while the beginnings of my Lyme Journey were mostly physical, it ultimately led to deeper Neurological and Neuropsychiatric manifestations.

It isn't uncommon for prospective Lymies to go through many tests until a positive result is found. Which numbered test finally came back positive for you?

This is actually one area that (besides that three month window at the beginning) I've never had an issue with. Although when I had my initial 2002 relapse it was my college psychiatrist who ultimately sent me to a LLMD. Luckily, before becoming a psychiatrist, she had been a pediatrician and was very well aware of Lyme and its later manifestations. Before seeing her, I had actually gone to the hospital and tested positive again for Lyme, but when I followed up with my new primary care doctor, he wasn't exactly thrilled at the diagnosis and told me to go see a psychiatrist...which I did. To read more about this, please go to my blog (linked below) and click on the page that says, "My Story." I've worked really hard to write a complete account of my experience in hopes that it will answer some questions, and give people going through something similar a chance to relate and be comforted in knowing that they're not the only person out there that has experienced this type of insanity.

How has your relationship with friends and family been affected?

I think this is actually the saddest part for me to talk about. Apparently, no one likes to be around people who are constantly sick (who knew, right?). I'm just kidding, but the reality of it is that your friends disappear along with your social life, and your family tries to relate as best as humanly possible, (that is if you're lucky enough to have them believe CLD is real). But it does really take one Lyme patient to be able to completely relate to another. This is why I'm thrilled to see how many organizations and supportive social networking sites have become available nowadays.

Lyme also can cause a ton of financial tension, and that is something that I find unforgivable in the medical community. At first, people often think it will be a "quick fix" and they take out their savings and rack up the credit card bills, but after awhile, (and I think for understandable reasons) they are more hesitant to help out. I have resorted to selling practically everything of value I've ever owned to help with the financial burden. My family have also helped me out in this way, and between selling stuff and waiting for disability, every month we seem to just get by with all the medical costs. One thing for sure though, this type of experience has changed me to the core! Losing your health and the ability to support yourself has a way of making you realize what really matters in life and what just absolutely does not. For that - I can't help but be extremely grateful.

Are you on a conventional or holistic protocol?

Right now I'm on a holistic protocol, but it took me years of going through conventional methods for me to finally understand that (at least in my case) antibiotics cannot cure me - especially at my very late stage. It can definitely keep the illness at bay, but after two years of being dependent on IV treatment. Every attempt to stop immediately resulted in severe relapses, ones in which I would wake up paralyzed and have to wait for someone to find me, carry me out of the house, and to the doctor's office to receive the IV again), I've realized that there must be another way to beat this!

What are some signs of improvement?

The mere fact that I'm off all pharmaceutical antibiotics and not paralyzed is enough to make me hope that the protocol I'm on now is working! I have also noticed that I have less seizure-like episodes, am able to recognize people and places, can hold a conversation (although "talking" is way more exhausting to me than writing), and can even start writing again (hence the blog) - which has always been a passion of mine.

What are some things you had to put on hold in your life because of Lyme Disease?

I've honestly had to put everything I at least thought I ever wanted on hold. Relationships are definitely a sore spot for me, and it often can get extremely lonely at times, but I know I cannot even think of entering a relationship until I am well again, in my opinion, it's just not fair. The thing I miss the most, however, is my career. During the years of 2003-2007 I became a Licensed Massage Therapist, Craniosacral Therapist, Reiki Practitioner, and was certified in Lymphatic Drainage. I absolutely loved everything about my job, and was quite good at it. I hope that is something I can resume once I am able to work again.

Before this disease, I was on a different path, one that held very different expectations of what I thought I wanted out of my life. Experiencing this illness has put me on an altogether different path, so in that respect, I haven't had to put on hold things I know will come to fruition once I beat this thing. I'm just waiting for the "GO" sign!

Herxing can be brutal at times. What are some of your preferred methods to reduce it?

That's a hard question to answer because it really all depends on what you are able to do while herxing. For example, while I was on IV treatment, I was able to drive, and had enough stamina to practice Bikram Yoga practically every day. It did wonders for me - truly amazing, and really helped get rid of all those toxins. Once I stopped the IV however, I was no longer able to drive, and still have very limited energy. So I do what I can; I bought a cleansing system off E-bay for $150 that I find really helps (despite all of the bad press about it). When I can, I take sea salt baths, use a detoxifying liquid herb, and take a supplement to help bind the toxins and escort them out of my body.

Sometimes though, the herxes are so bad, that all I can do is lie in bed, hold on, and simply wait for it to pass. When I do this, I at least drink water with cayenne and lemon in it to help get my lymphatic system moving. Other things I've done with success in the past are coffee enemas, mud wraps (don't neglect your body's largest organ!), sleeping in hyper-baric chambers, and using magnetic products that not only help with that dreadful "sensory overload" I have, but also increase circulation. Besides that, I guess the last thing I do is make homemade stocks and healing "tea-less" teas. You can find those recipes on my blog if you go to the page, "Healing Recipes and Remedies."

You have your own website called "A Slice of Lyme" http://www.asliceoflyme.blogspot.com/. What type of aspirations do you hope to achieve with it?

My first and foremost goal is to raise awareness. I share my story so that people who feel that they are alone going through this one "Mother" of an illness can realize that they are not. My second intention is to raise funds not only for myself, but for others like me who don't have the monetary means to get treatment. I've been there, and know how desperate people can become. How could I not want to help them!

I use blogger, and would really like to create a venue for a discussion forum, but haven't been able to find a gadget that enables that through my medium. Hopefully, it will come through though, as I'd really like to hear the thoughts, opinions, and experiences of other Lymies (besides just the commenting - although I love it when they do).

Eventually, I'd like to create a unique "healing center" and refuge for Late Stage Lymies to be able to go to. I'm definitely going to post more about this "Vision" of mine when I get all the details together. The thing that bothers me the most about this illness is that the way it presents itself often leads to isolation. People who suffer from it simply do not have the energy or means to meet others like them, and therefore feel alone and isolated. I'd like to do something about that!

Is there any advice you could give to those Lymies who feel there is no hope left?

This is a topic that is very sensitive to me. What most people don't realize is that 1 out of 3 Late Stage Lyme Sufferers will try to commit suicide at some point, and unfortunately a long time ago I was one of them. However, my Near Death Experience was the most profound thing I've ever experienced, and ultimately made me realize that "giving up" was NOT an option.

I just talked with another "Lymie" friend of mine who said, "When it comes to Lyme, there ARE NO BOUNDARIES." What that means is that unlike any other illness I've ever seen, Lyme patients (and even former Lyme patients) sincerely want to help others who are going through what they went through. It simply does not matter who you are. If you have Lyme, there are people who will literally move mountains to help you. All you have to do is ask!

There are many supportive sites on the web, even through facebook, that are dedicated to supporting people who feel they don't have any hope left. Life is different now than when I lost all hope; there is more awareness now, more support, more knowledge. I know that if I had that available to me at the time, I would have never given up. Just remember there really ARE NO BOUNDARIES when it comes to helping a fellow Lyme patient. Most of us will do anything and everything we can to help you make it back to the other side.

Sarah Lamando, New York

P.S. Name brands of medications, supplements, etc. were taken out of this post for legal reasons. If you'd like to know the names, leave a comment here and include a way that Sarah can contact you directly.

23 Doctors & 23 Opinions--Lisa Buffaloe

2011-08-23T01:00:00.000-07:00

My journey into the Lyme wars started in the summer of 1999. After a hike through the woods I found a tiny tick. Without any thought, the little nuisance was removed and life went forward. Soon a horrible itching rash developed on my back. Thinking it was only a bad heat rash, we ignored the problem.

My health began to decline, and in October of 2000 I found myself in the emergency room with vertigo. During the dizzy spells, my eyes literally moved up and down at a rapid speed much like a television horizontal control gone haywire. For a year and a half the spells came and went leaving me unable to do anything other than sit or crawl. Doctors pronounced my illness first as Labyrinthitis, then autoimmune inner ear disease. Steroids and medications helped get me back on my feet until the next round of problems began.

Over the next few years, my body went in self-destruct mode. I had kidney infections, kidney stones, hearing loss, tumors, cysts on kidneys and liver, uterine tumors, numbness, migraines, bleeding problems, eye problems, Charlie-horse cramps that lasted for hours, arthritis type pains in joints, dizzy problems came and went, nerve damage, horrible fatigue, and the list goes on and on.

Twenty-three doctors searched for reasons, and every one had a different opinion. Tests showed markers with the early stages of MS or Lupus. Six surgeries repaired areas where my body had attacked itself. Hospitalizations, numerous procedures, scans, x-rays, blood tests, and nerve tests finally led to an official diagnosis of Lyme disease in January 2006.

Once diagnosed, treatment began with IV antibiotics for thirty days. After that point, I assumed I would be well and ignored ongoing symptoms.

Fortunately, I met Natalie Nichols, who referred me to a Lyme disease specialist. For the next year, continuous antibiotics and supplements were used—switching from drug to drug to combat the ongoing symptoms. My white count plummeted and my blood thickened, which necessitated the use of Heparin blood-thinner shots to my regimen. When health didn't improve, IV antibiotics were resumed in April, 2007 using a picc line. 137 days later, a blood infection forced the removal of the line. A temporary IV line was used to fight the infection for the next month. Oral antibiotics and an anti-malaria drug were used until January 2008.

A brief respite from medications caused a downturn in health, and antibiotics were resumed mid-March of 2008. Other than fatigue and deteriorating discs in my neck, 2009 was relatively quiet health-wise. Another bleeding problem surfaced in March 2010, and an ultrasound and mammogram warranted the need for my seventh surgery.

A month after surgery, my symptoms were reasonably quiet. I continued to use supplements, monitor my health, and continue to pray for healing. Then my health started to steadily decline once again. Fatigue was building and every joint and bone hurt. Finally I had to go back on antibiotics. I'm so disappointed my health has gone back down again, but very grateful I had such a long, good season.

I give God the credit for keeping me going all these years. He is the only reason I have done so well. My strength and hope is only in Him. He walks me through the fires, cleans off the soot, and sets me back on my feet.

-- Lisa Buffaloe, Idaho

Only Half of Me--Sara Hesley: Part 2

2011-08-19T01:00:00.000-07:00

Was my immune system wrecked?

As a trained herbalist and health-conscious individual, I changed my diet, used herbal medicines as needed for the ever-growing list of ailments, and I started doing some research into what might be going on. I’d feel great for while, and then, out of the blue, I’d be slammed with another round of misery. What started out like the flu--fatigue, achy joints, stiff neck and headache--was getting progressively worse with each new episode. These episodes of assault were lasting for weeks at a time with a distinct cycle of symptoms, to the extent that I started fearing for how much more my body could take without suffering permanent damage.

Jesse and I moved to the San Francisco Bay Area in 2005. I’d written off graduate school by then because I was too sick too frequently and no longer felt like I could make a commitment to anything of significance. The chronic digestive issues were nothing compared to what was happening now. In 2006, I found myself in the ER at UCSF Hospital from the severity of the current assault. Amongst many other things, I’d experienced a temporary paralysis of my limbs. The ER doctors ran a battery of tests and couldn’t find anything. They referred me to specialist who ran another battery of tests and decided I had an autoimmune condition involving my nervous system. He surmised that I would need to take steroids for the rest of my life.

I declined and followed-up with another physician who ran another battery of tests and found nothing. To each of these doctors, I specifically noted the tick bites with the bull’s eye rash and the deterioration of my health from that specific moment in time onward. Each of them ignored that piece of the puzzle. Without another answer, it became easy for me to do the same.

Shortly thereafter, I took a position as a clinical assistant for a physician of restorative medicine in the Bay Area. During the job interview, she told me that she was undergoing treatment for Lyme disease and I shared a few of the still-scattered puzzle pieces of my experience with the same, but all of it in the past-tense. Over the previous few years, I’d learned a lot about this disease and its co-infections. I was terrified to think that this was what was happening to me. I didn’t want to believe it so I didn’t. In the throes of the assaults I knew that it was Lyme, but as I’d improve, for however temporarily, I was able to convince myself otherwise.

Now with a long commute, a stressful job, a very high rent and busy life, I knew it was only a matter of time before I crashed again into another assault. The assaults had begun to feel like a war was being waged within my body, like I was under attack from the inside out. Even when I was feeling well, my ability to do things was significantly lessened. One day I wrote in my journal, “I feel like only half of me…”

Then finally came the tipping point. This time, again, was worse than the last. And this time presented with crippling tremors and the undeniable onset of neurological involvement. For the expert I’d become at ignoring immense and constant pain, there was no ignoring tremors. There was no ignoring the look of fear in my Love’s eyes when he saw what was happening to me. My employer, the doctor, couldn’t ignore it either and she promptly ran tests of her own and referred me to a Lyme Literate MD.

The tests were positive and indicated both chronic and acute manifestations of Lyme disease, as well as Bartonella and Babesia co-infections. I knew going into treatment about the toxins and the Herxheimer reactions; but it’s truly beyond comprehension until you’ve experienced it for yourself. The whole thing, really, is quite unbelievable. I never, ever imagined that life could be like this for anyone, least of all me.

We moved back to Lexington in 2008. I was hopeful that I’d be well soon but I’m now in my third year of treatment. I was incredibly fortunate to find a physician here who would see me, in part, to report to my LLMD in California but also to provide direct, aggressive intervention if necessary. When we stopped the antibiotics last spring, I crashed again, the hardest yet, and ended up with a PICC line for intravenous antibiotic treatment, along with numerous other medications. For most of last summer and fall, I was so sick and so scared that I didn’t know what was going to happen. I wasn’t sure it was worth it.

Most of last year, 2009, was much like a bad dream, sometimes certainly a nightmare. Every step of the way, my Love Jesse, my family, and my circle of friends have surrounded me with their love and support. They’ve witnessed this nightmare but they haven’t run away. They’ve shined their Light into this darkness, kept the path lit for me, guided me when I’ve lost my way, picked me up when I’ve fallen down. My gratitude for my family and friends is immeasurable. I can’t even think of where I’d be without their circle of love and light.

As my health improves, I’m doing what I can to raise awareness about Lyme disease in Kentucky and across the Southeast US. The silver-lining of this dark cloud is that I can and will have a positive impact for someone else, some day, some how. This has not been for nothing.

Tomorrow is May 1, 2010 and I’m happy to report that I’ve been feeling well for four months. Very well, in fact. I’m vigilant with my treatment and cautious with my activities as I can feel the pain and neurological dysfunctions begin to return if I do too much. But this is the first time in a very, very long time that I can honestly say that I feel like a real person again. Only time will tell what the next chapter of this story will become. I’m keeping my fingers crossed, I’m making my prayers, and I hope that soon, with surety, I can confidently own the words of Jordan Fischer-Smith:

“Then comes the time when you start to get your life back--and it’s MAGIC!”

Sara Hesley, Kentucky

kentuckylyme@yahoo.com

Only Half of Me--Sara Hesley: Part 1

2011-08-16T01:00:00.000-07:00

I grew up in a beautiful small town in western Kentucky. I spent much of my childhood playing outdoors at my grandmother’s little farm “in the country” and, as a teenager, with a growing love for nature, I frequented the Land Between the Lakes for long hikes, picnics and camping trips. Ticks were just part of being outside. We’d do tick-checks when we got home and flush the little buggers down the toilet. They were common and no one seemed to think anything of them. Nor did anyone seem to know the potential dangers of the illnesses they carry. As creepy as ticks may be, they didn’t keep me from doing the things I loved or visiting places of beauty in nature.

As a child and teenager, I was healthy, strong and athletic. I swam every day in the summer, played varsity tennis from the seventh or eighth grade through my junior year of high school, often accompanied my father on golf outings and helped my mother in the garden. I never had a broken bone, any sort of surgery, or any memorable illness until my senior year. During the late summer of 1995, I accompanied a friend on an off-trail exploration through a forest in Cadiz, Kentucky.

At some point during our hike, I discovered a multitude of ticks crawling all over my legs, as did my friend. They were too many to count and had somehow managed to find their way past pant legs down to my ankles, and socks pulled up to my knees. Both of us were covered from the hips down with these tiny monsters. It was the first time I experienced ticks in mass numbers, so many of them covering such a large area of my body. While a random tick here or there was common, this was a new experience with a distinct sense of urgency.

We sprinted the mile back to the car, stripped off most of our clothes to get the ticks off and drove an hour and a half back home to do a thorough check. In the weeks following that day, everything seemed to be fine except for the many small red bumps that dotted my legs. No one ever mentioned Lyme disease or tick-borne illnesses because no one knew anything about them. A few months later, I got sick. I had the flu, then a sinus infection, then Shingles at age eighteen, which seemed very peculiar. But my doctor never raised an eyebrow.

I became plagued with constant nausea and loss of appetite and started to experience severe shooting pains through my body. My doctor assured me that it was just the anxiousness of graduating and moving on to college. I thought he was nuts. Because it seemed they’d made everything worse, I attributed the ongoing nausea, loss of appetite and digestive disorders to the antibiotics that had been prescribed at some point over the winter. For many years, no one put two and two together.

Who really knows what this particular tick encounter did to my body and immune system or what, if any, tick-borne illness was transmitted to me then. What’s certain is that my health drastically changed from that point forward. Nevertheless, I learned how to get by, despite the continued problems, and became a master at how to adapt as if nothing was really wrong.

My outdoor adventures continued through and beyond college as my now-husband, Jesse, and I moved to Lexington. We spent lots of time hiking and backpacking at the Red River Gorge and surrounding forests. At least nine months out of the year, we could be found canoeing, hiking or camping nearly every weekend somewhere within a 150-mile radius. On one such weekend in 2003, we visited a nearby hiking destination. While Jesse-the-Arborist climbed a tree, I took my dog for a trail-run through the woods. After a bit, the trail ended abruptly in a grassy opening in the middle of the forest. I stopped momentarily to enjoy the lovely scenery and then continued on my way.

It was few hours later when I discovered the hitch-hikers I’d picked up in the grass. Just like before, my legs were covered from hips to ankles with ticks; just like before, I stripped off my clothes and did my best to remove them. Many were still crawling; many were already attached. Another hour and half drive home. Another thorough-as-possible-tick-check under the bright bathroom lights. Another thought that I was "good to go."

By the end of the week that followed, I wasn’t feeling so hot-–mild flu-like symptoms, fatigue, headache. I stayed home from work. At one point, I felt heat radiating across my left thigh. And there it was-–a perfect bull’s eye, the unmistakable mark of Lyme. Though my knowledge of Lyme disease was still quite limited, I knew this was NOT something I wanted to have, nor was it anything to take lightly.

I called the health department immediately and told the woman about the ticks and the bull’s eye rash. She calmly asked me if I’d recently traveled to Connecticut. “No, I was hiking near Bardstown!” I told her. She confidently assured me that I could not get Lyme disease in Kentucky and that, since I hadn’t recently been to the Northeast, it was nothing to worry about. The bull’s eye rash was probably just “an allergic reaction to one of the tick bites.” When I asked if I should see a doctor anyway, I was told that doctors in Kentucky don’t treat Lyme disease.

No health insurance. No doctor. No Lyme disease in Kentucky. I decided to do an anti-microbial, immune-boosting herbal protocol just to be proactive, and it seemed to help. The bull’s eye faded, my energy returned. When I got the flu several months later, I confined myself to bed until I was well. By then, Lyme disease was the last thing on my mind. When I got the flu again a few months later, and then again a few months after that, I started to wonder what was going on.

Was my immune system wrecked?

Part 2 Friday.

I Will Beat These Beasts--Lydia Niederwerfer:Part 2

2011-08-12T01:00:00.000-07:00

How in the world was I able to afford his fee? The initial consultation for Lyme was 2-3 hours. We had one consultation. He agreed to take the fee in payments so that when I did find a Lyme Literate Medical Doctor, I would be able to see him/her. A day or two later, he called me with a referral of a doctor who was willing to see me. What a relief, and he was only an hour away. The tests confirmed my suspicions. I was found positive for Babesia, Lyme, and Bartonella.

In September 2009 I began antibiotic treatment. The doctor had recovered from Lyme and Babesia as well. He was aware of the CDC and IDSA guidelines; he knew first hand that some of us do not recover as quickly as the guidelines state, for he had experienced this himself. I am grateful for his diligence to help me become well. Although the road I traveled earlier with Lyme was horrible, I was blessed that this time that I did not experience the symptoms all at once that had caused me to become bedridden.

At first, I thought that I could not go through this again because I experienced the sensation of burning if anything touched my skin. With every breath I took, I felt the burning pain. It became very difficult for me to walk once again. I had to bring out the cane and knee braces I had once used. Oh, how I despised that! The night sweats, fever and chills were overwhelming at times. I couldn’t understand how you could be burning up and freezing at the same time. The night sweats drenched my clothes and my bedding every night.

The nerve pain and knee pains, along with the rib soreness and tenderness along my spine, would not allow me to sleep. After some of the sensitivity passed, I slept for ten to twelve hours a night and awoke feeling no more rested than I had if I hadn’t slept at all. I found myself falling asleep sitting up.

Shortly thereafter, I began getting severe pain in my eyes--as if someone was poking them with needles--and sensitivity to light. I had feared that I would lose my sight once again; it was an overwhelming sense of fear. The headaches and migraines came and wouldn't cease, all day and all night for a couple of months. Not to mention the weakness of all my limbs, which made it almost impossible for me to sit or stand. I swore that no matter what, I would never be bedridden again. I could not endure the indignity of having to be bathed and clothed as in the past. Every day, regardless of how weak I was, I took a shower and prepared to accomplish some task, no matter how small.

For a few months, every day I would experience sharp shooting nerve pains in various areas of my body, some so intense that I would fall to the floor in pain. As I sat watching television or just walked, I gasped for air. There were days the air hunger was worse than others.

What I found so difficult was the “brain fog.” I couldn’t find the right words, I forgot where I was going, I became disorientated, I could not follow a simple thought. For someone who prided herself in having a terrific memory, exceptional attention to detail, and great organizational skills, this was the most infuriating. I would take all the other symptoms combined rather than lose my mind.

The symptoms are endless: the great sense of rage or depression, the complete loss of hearing which later turned to severe hearing loss, the loss of hair, the inability to read a book, the shingle-like rash that covered at least a third of my body, the swelling of my joints, and horrendous nightmares. There are a few more that I am sure I have forgotten.

By January 2010 many of my symptoms had disappeared. However, after a tumultuous night with nightmare after nightmare, I awoke with swollen and hurting knees and I was very stiff. I found my hands a bit swollen and finger joints were sore. I also found simple tasks like typing, opening a bag of chips, or a bottle of water a bit more difficult. My fever had returned. I looked in the mirror and saw my eyes were swollen with black rings under them. How disheartening! Does this mean my recovery is still miles and miles from reach? How far will this set me back?

I wanted to scream but didn’t. I cried a tear or two but that was all. I swore to myself that I was not going to let this bring me down. I would continue to have faith and recover. Unfortunately, it just won’t be on my timetable. The more set-backs or obstacles that are thrown at me, the more determined I become that I will beat these beasts.

It is now June 2010 and I have been Lyme- and Bartonella-free for a few months. My only obstacle that remains is Babesia. I was at least 90-95% myself. My medications of conventional antibiotics and herbal tinctures with supplements had been weaned down to only four. In one weekend, that all changed. I will share my journal entry for that weekend.

As I sit here trying to get comfortable and rest, I realize that I have a wonderful husband. I recall what happened this weekend vividly. It began with an uncomfortable feeling like a bad case of heartburn, to a dull radiating pain. The pain intensifies, then as soon as it came on, it left. Then, I can see my husband yelling at me “breathe,” and unable to say a word, try somehow to show him I’m trying, he quickly grabs me and begins to hold me, with a calming voice and rubbing my back and rocking me, screams “breathe.” Then an instant later, I gasp and am able to breathe once again. Afraid to leave me, he says, “you’re burning up,” then in a second I’m ready to vomit and he runs to get me a bucket. I get sick, I’m on all fours, asking him “what’s happening to me?” Then suddenly I’m shaking uncontrollably, freezing. Then, it begins all over again, hard to breathe, burning up, shivering uncontrollably. Then, extreme headache and the feeling of blacking out overcomes me. All wanted to do was to sleep, I hear his voice, “stay awake, just a little while longer,” “stay awake” …then it was all over…

The Babs beast is responsible for my angina; my heart is showing much stress and fatigue. I have had to increase my medications once again with conventional antibiotic treatment and herbals. I am doing what is necessary to restore and revitalize it. Once I am able, in a few weeks, I will be undergoing micro current frequency treatment to eliminate what remains of the beast.

I will overcome this once again for those who are suffering and are losing hope. I will be the success story that gives them inspiration to keep fighting and go on. I will, even if it takes everything I have. The only thing that I regret from this experience is that my husband has had to endure all this too. How much longer is he willing to stick by my side? Will I also lose him as I have lost my old self? How much do we have to lose before the CDC and IDSA come to realize that their standard guidelines should not be “one size fits all?”

Speculation and Controversy

I firmly believe that all cases of Lyme do not become chronic and, if treated early enough, will recover just fine. However, should the small percentage--which is hundreds of thousands of people who do not fit that mold, and become chronic--be allowed to suffer needlessly?

The CDC and IDSA’s contention is that long-term antibiotics do more harm than good, which leads me to these questions: Should those that don’t fit the “one size fits all” be punished? Why is it that the CDC or the IDSA is not open to the idea that some require more treatment than others? There are those who believe that the chronic form of Lyme is an experiment that went awry in a lab such as Lab 257. Could supporters of the theory be correct in assuming this is why there is an unrelenting position that chronic Lyme does not exist? I don’t know.

All I know is that the ones who continue to suffer just want to be well. If it is a cover up, it doesn’t matter. All we want is to be heard and treated. There are doctors, members of International Lyme and Associated Diseases Society (ILADS), who realize that we are not all the same and are willing to help us by treating us outside of the “rubber-stamped” IDSA guidelines. Must doctors who take their Hippocratic Oath seriously be punished by losing their licenses? Must they have their hands tied for prescribing more antibiotic treatment than has been outlined?

My hope is that the chronic Lyme sufferers be heard and that we would receive as much support as other organizations for various illnesses. My hope is that when people say "well, you look good" they realize the havoc that goes on "under our skin." My hope is that the CDC and IDSA open their minds to the possibility that we are not all alike. For as we are all different when it comes to personality, we are all different when it comes to the way our body’s immune system battles Lyme. The treatment should be based on the individual’s needs, not the outdated CDC and IDSA guidelines. I hope my story encourages people--who are not familiar with Lyme and all its controversies--to become active in our quest to be heard.

Update: July 29, 2010

I had my follow-up with my LLMD yesterday. GREAT NEWS! I am not showing any signs of Babesia! That means I have been Lyme and Bart free since Jan 2010 and now I am Babs free. WOOHOO!

I guess adding the micro current frequency treatment helped get me over that nasty hump. I used it for five days straight in conjunction with conventional abx and naturals. It really kicked my butt. The LLMD thought it may have fried my heart and it took a toll on my adrenal system. I was a zombie for a couple weeks, but now I am Babs free. It was well worth it. My LLMD was amazed that I took such risks, but as long as my body was able, I continued forward. I know there are many of us who would do anything to get better short of selling their souls to the devil. Some would probably do that too.

Lydia Niederwerfer, Colorado

I Will Beat These Beasts--Lydia Niederwerfer:Part 1

2011-08-09T01:00:00.000-07:00

The Story Begins

After a gorgeous day of picnicking and canoeing, I discovered a tick buried in my shoulder. Who knew that this small insect would change my life? I went to the ER and was given 10 days of Doxycycline just to be cautious. A couple days later, I had the Bull’s Eye rash, mild headaches, minor flu-like symptoms, and a stiff neck. The standard regimen seemed to help because I felt better.

A couple weeks later, I began getting stiff knees. Besides my stiffness, I was experiencing headaches, hot flashes, chills and fatigue. I asked for another treatment of antibiotics and was refused, not only by one doctor, but many. The Western Blot and Elisa tests were defined as negative, only 3/5 bands positive with others described as IND. Despite the tick, all the early clinical symptoms and some positive bands, the doctors refused to think Lyme was to blame. It had to be something else.

After numerous tests to rule out ms, lupus, meningitis, rheumatoid arthritis, celiac disease, etc., my central nervous system functions began to go awry. Quickly, I became completely debilitated. It was as if someone poured a bucket of symptoms over my body all at once. The list was endless: severe nerve pain, one stiff hip, uncontrollable shaking of hands and arms, constant low grade fever, peripheral neuropathy, temporary loss of sight, tunnel vision, chest pains, severe pain all along my spine, flu-like symptoms, loss of night vision, loss of speech, loss of motor functions, loss of coordination, difficulty walking, numbness and tingling of head, hands and feet, arthritis, short term memory loss, loss of hair, loss of cognition, inability to hold urination, diarrhea, and severe migraines. With each breath my entire body burned. I hoped each breath I took would be my last. I became bedridden, severely depressed and unable to do any work. I had to endure the indignity of having to be bathed and clothed by my husband.

Yet, the doctors would not acknowledge the possibility of Late Stage Lyme. It had to be just a coincidence that these symptoms all began since I discovered the tick, waned while I was on antibiotics, and continued to escalate shortly after I finished my treatment. A thought was that I became re-infected with Lyme while my body was still recovering from an initial infection, and that is why I was affected so quickly and intensely. Of this I’m not so sure, for I was very careful after I found the tick earlier.

Finally, an open-minded and thorough neurologist performed an LP (spinal tap) as well as many other tests. The Lyme bacteria was present. He was surprised that I was diagnosed with rheumatoid arthritis despite the negative tests results for RA. He was also surprised that the doctors didn’t factor in the gray chalky pallor of my skin, the fact that I was quite debilitated, and many of the early clinical symptoms of Lyme which were clearly present at the onset. Immediately, an in-home IV antibiotic of Rocephin for 28 days was prescribed; my neuro followed the guidelines as were set by the CDC. By the end of 28 days there was some improvement. I was no longer completely debilitated where I had to have someone bathe and clothe me.

I still looked like a cancer patient undergoing chemo, still had gray, chalky pallor and only half my hair. I still had absolutely no night vision, uncontrollable shaking of my arms, not to mention barely being able to stand upright or walk. It was suggested that I go to Shands Medical Center, which I was told had a reputation like Mayo Clinic in the Midwest. My medical records were sent; I was notified that I would have to undergo all the tests that I had already done again because Lyme disease did not exist in Florida. Then, it was suggested by my neurologist that I see a doctor who was familiar with Lyme disease.

After signing off several medical waivers, I saw a doctor who conferred with Lyme specialists from three different states and began an agressive18-month antibiotic treatment. For twelve months, I endured all the horrible side effects of the antibiotics. In my opinion the puking, diarrhea, constant nausea, migraines, etc. were my cross to bear so that I could become healthy again. Plus, after being entirely dependent on someone else for a while, this was so much better than being completely bedridden.

After a year there was some improvement. My vision had improved a bit, the gray pallor had begun to disappear, and I had a few more good days than bad days. It wasn’t until a Chinese herbal treatment was added to the conventional, antibiotic treatment that I saw quite a bit of a difference within a week. I continued the herbal treatment for approximately another year, working with a NY doctor who specialized in Chinese Medicine and treating Lyme. This alternative route played an immense part in helping me handle a majority of the symptoms and recover from some. This was a new beginning for me; I would actually get my life back. So I thought.

It wasn’t until a few months later that I realized I was left with some residual damage. My mind was not the same. I could not recall a few years of my life. The more I tried, the more frustrated I became. I decided to continue in my financial and banking career, only to find that I could not remember some of the most basic concepts and math problems I had used over and over for years. I found it difficult even managing my budget, checkbook and investments. I was particularly proud of my grammatical and writing skills, which for some reason didn’t come easily any more. I had to relearn and practice some of those skills once again.

If the CDC guidelines set by the Infectious Disease Society of America (IDSA) allowed more accurate tests--which are available--for Lyme outside of the standard Western Blot, and if they were more flexible in giving additional antibiotic treatment beyond their set guidelines, I may never have come to that bedridden state. I may never have experienced the long lasting effects of Lyme. If more doctors were familiar in the treatment of Lyme, I may have been able to continue with my passion for teaching and informing people about their financial goals. I would have continued to work as much as I wanted to without repercussions and without experiencing minor flare-ups. The possibilities that--before I became ill with Lyme--were endless.

Six Years Later, Battling Lyme Disease Again

After almost six years of doing well, I had surgery in April 2009 and was given steroids. Steroids suppress the immune system. A simple and typical surgery ended up with several complications. I had lost complete hearing in one of my ears, and the ENT had no explanation. A simple surgery. I should have recovered in three to four days, but the days became weeks.

A week after my surgery, I was progressing poorly. After another week, the suggestion of placing me in the hospital was mentioned. I refused. My experience with the medical community left me with distrust, and I’d have to be on death’s doorstep before I'd allow anyone to take me to the hospital. I could sense something was seriously amiss. A few months passed and I refused to even consider Lyme disease again.

Some of the Lyme symptoms such as the nerve pain and stiff knees returned. Then began the drenching night sweats. Shortly thereafter, I awoke to find that I could not hear a thing. The ENT still had no explanation, and inner ear surgery was suggested. Since my earlier experience with Lyme and its many complications, I set out to look for a doctor who would consider testing me for Lyme and other tick-borne illnesses.

Boy, was I surprised--any mention of the word Lyme, and I was immediately turned away. I set out to find doctors who were treating patients with Lyme. I made a list of five in my area, ranging from three to five hours away. I came up with dead-end after dead-end. They were simply too overwhelmed with patients seeking medical attention for Lyme, or they stopped treating them for fear of losing their license. I came to the last name on the list. He was a two-hour drive from home. His fee began at $220/hour and was not covered by insurance. I was so frustrated. How in the world was I able to afford his fee?

Part 2 Friday.

Remembering a Life I Once Knew--Martha B

2011-08-05T01:00:00.000-07:00

As I sit with pen in hand, weighing upon how to give an account of my battle with Lyme, I have no recollection of a tick or mosquito bite resulting in a bulls-eye rash or flu-like symptoms. I question how I got to this place in my life. I remember a life I once knew--what it felt like to run three miles a day, freedom to socialize with friends at a favorite neighborhood restaurant, eating without thought of the biological aftermath, and living without annoying and debilitating symptoms every moment of the day. I dream of a day where I can be free of Lyme, and will find normality as I join others in living.

My journey into a life with Lyme began unknowingly at the age of 31. I was a newlywed. I married a wonderful man at St. Mary’s Cathedral in Memphis, Tennessee, on March 1, 2003. It was not an expensive wedding, but a beautiful one. Shortly after, we began to train for the Peachtree 10K in Atlanta, Georgia. We had planned it early on and had been looking forward to it for months; it would be the first race would run together as a married couple.

Three weeks before our July 2 departure, I woke one morning to find I was severely constipated, and I knew at that moment that it was not just an ordinary episode. I did all I knew to relieve the symptoms, but was unsuccessful. The symptoms stayed with me all day and all night, and were more intense than anything I had ever experienced. I felt awful, but made the trip and successfully ran the six-mile race. Once I returned, the doctor’s visits began.

I was diagnosed with Irritable Bowel Syndrome approximately eight times by different doctors, underwent four colonoscopies, was prescribed a multitude of pharmaceuticals, and was given the run-around when I mentioned other possibilities. A year later, I was lying on an operating table and was diagnosed with stage-four endometriosis, now believed by many gynecologists to be an auto-immune disease. It had adhered to my colon. Subsequently, during an eight-month period, I went through three laparoscopies, forced menopause, and more pharmaceuticals before undergoing a full hysterectomy--all of this while working a full-time job that required 60+ hours a week. I look back and know it was the strength God gave me that got me through it.

After the hysterectomy, I gradually showed improvement in my symptoms, and although I dealt with daily bowel symptoms, I adapted. I continued to work and felt 70% better than I had over the previous two years. My physician prescribed Miralax and CALM magnesium to help manage my bowel symptoms.

Three years after my hysterectomy in 2007, I began experiencing chronic burping spells in which I belched every ten minutes. One can only imagine how annoying and embarrassing this was. The three spells I experienced within a year’s time lasted up to a month each before resolving themselves. In 2008, shortly after eating a meal, I became very ill. I felt a heavy pressure in my stomach and all through my esophagus, not similar to the pressure one would feel with acid reflux or indigestion. Even drinking water exacerbated my symptoms. This lasted for seven days before subsiding.

I began experiencing these episodes more often until they were occurring after every meal. Sometimes it simply took a sip of water or couple bites of food to get the symptoms rolling; other times it took nothing at all. At the age of 37, when my average weight should have been 115/120, I had lost 57 pounds in less than six months, arriving at 93 pounds. Food had become my enemy. It was frightening to look in the mirror. I wondered if I was going to make it, and how I was going to reverse my weight loss.

In July 2009, I developed bladder pain that was ruled out as a bacterial infection, and was prematurely diagnosed as interstitial cystitis. After a year of gastroenterologists, urologists, exams, tests, labs, x-rays, medications, thousands of dollars spent, and a lot of prayer, I felt blue and hopeless.

Prayers can be answered when you least expect; a friend of mine encouraged me to visit her doctor who was able to diagnose her at a vulnerable time in her life. During my initial visit, he sat me down in a 1950’s examination chair, felt the temperature of my nose and feet, looked into my throat, and listened to my medical history. I thought, What am I getting myself into? Within thirty minutes, he was convinced I had somehow contracted a stealth infection. I was happy to have a possible diagnosis after being told by my gastroenterologist and urologist that they felt my symptoms were untreatable and incurable.

As more testing began, I gained hope. Then came the verdict. My Lyme IGeneX test results came back questionable, but because of the number of bands that were positive, my doctor was suspicious that I may have contracted Lyme. He sent me to an LLMD near our area who clinically diagnosed me as having Lyme. A second test came back positive for Lyme-fighting antibodies.

Lyme does not discriminate, nor is it selective; it feeds where you are weakest and attacks. My endocrine system was where it chose to settle. My LLMD started me on antibiotics, but seven months later I had not made progress, and we discontinued antibiotic treatment. It was then that God led me to a naturopathic doctor who practiced four hours away. A month after my initial visit with this doctor I found out that the health department closed down my LLMD's practice for failing to adhere to the four-week treatment the CDC allows.

In May 2010 I packed my bags and, with my friend, headed to San Angelo, TX for my initial visit with the naturopathic doctor. I am not going to deny that I was in a distressed state—I was desperate for answers. At 9 a.m. we walked into a small dark, but warm-natured clinic. What I learned there, I believe, will play a significant role in how I treat myself: understanding how the immune system and digestion go hand-in-hand, the importance of hormonal balance in organ function, and how we need to treat our whole self in order for our immune system to do what God intended it to do—to heal.

I finished my final lab tests requested by my naturopathic physician and received the results on June 25, 2010. I have many issues to deal with, hormonal imbalances, pathogens, bacteria, allergies to milk, soy, eggs, and gluten, possible roundworm, and fungal growth. You would think that I would be distressed by what I see on my reports, but I am actually relieved. Finally, a test that came back positive! I am eager to continue my journey as I begin alternative treatment for Lyme. I believe this journey will make me stronger, and one day I will find the freedom that I desperately crave. God is with me, and I believe that one day I will be healed.

Martha B., Texas

Unbalanced--Randy Gibson

2011-08-02T01:00:00.000-07:00

My ordeal with Lyme Disease began when I was infected in October 1989 on a trip to New York. Unfortunately I was unaware I had been bitten by a Lyme tick, though I returned home to Twentynine Palms, California with a rash on my forearm. We had never heard of Lyme disease at this point and it was nearly two years later that we would hear about it.

At first I had flu like symptoms and as a pastor had to struggle through the Thanksgiving and Advent season. I had assumed that I had a bad case of the flu and would just have to get by till it passed. I was terribly worn down by January when I first saw a Doctor. He too said I just had the flu and to take it easy.

A couple weeks later I went back with severe chest pain and after an Xray he said I had possible pleurisy and gave me some antibiotics. I had some improvement but was still not back to normal. I was scheduled for a 6-week visit in Argentina in April with the Rotary Club and made that trip with a relapse in the third week. I was staying with a doctor in Buenos Aires who gave me more antibiotics and I felt better in a couple of weeks.

That lasted until June when the most incredible headache I had ever had hit me like a ton of bricks. I ended up in the ER and had every test run. Blood tests showed ongoing infection, but none of the usual culprits. They again put me on oral antibiotics and sent me home. I began to feel better, but once again symptoms returned with the headaches untouched by any meds. I had new found respect for migraine sufferers.

Unable to get a definite diagnosis and definitive treatment, with my strength and vitality gone, I was forced to go on disability leave from the church on February 1, 1991. The hope was that I would be able to rest up and beat whatever it was that was afflicting me.

About this time I was tested for Lyme because my doctor read a journal article and he said it rang lots of bells. It was now 18 months since infection. When it became apparent that I was not going to be eligible for appointment to a church in June of 1991 my depression became severe.

I had been to over two dozen doctors with no breakthroughs. When I was diagnosed with Lyme disease I had doctors arguing back and forth whether they "believed" that Lyme was possible in California (as if no one ever travels to endemic areas). I asked if I could see a psychologist or counselor and was told by my doctor that the medical director refused to refer unless a patient had a gun to his head.

I very matter-of-factly told my doctor that I had a gun and I would point it at whomever I needed to in order to get the care I needed. I later learned that my doctor left medicine, in part, because of how helpless he had felt within the HMO system to access care on my behalf. My wife was told by the medical director of the practice that I was "unbalanced." (We all knew that... Yet, I was no longer my usual smiling "unbalanced" self!)

After Pam asserted that a mental health professional should make the determination of my mental state we were finally referred to a psychologist. She determined that my state of mind was such that I needed in-patient treatment. We arrived at her office with bag packed only to be told that the medical director was referring me to a psychiatrist for a second opinion before he would authorize hospitalization.

At this point I was referred to a very compassionate psychiatrist, whom I still see to this day. Time and again, the HMO has refused to pay for the care I receive from him, but we pay out of our own pocket when that occurs. Because the one thing we have learned is that continuity of care with a principal physician "advocate" makes a big difference in the "system."

This doctor advocates for me with my primary care doctor and the HMO and with 20 years of history they cannot rebut his expertise in my case. They try to break that chain of care by denying payment, in order to save themselves money. Fortunately we have the means, but how many others have suffered needlessly because of the broken system here in California and elsewhere?

Believe it or not, I've even had insurance company private detectives follow me with cameras as I took my kids to school in the mid '90's. I saw one of the videos in the early 90's; I think they try to prove you are not really sick. It backfired I think, as I was quite clearly impared on the video.

About this same time we were referred to an infectious disease doctor. She had done her work at Yale and only just recently come to the desert. She had first-hand experience with Lyme. It was she who helped us backtrack to our trip to the Norman Vincent Peale Center in the village of Pawling in Duchess County, New York in October of 1989 and recall the telltale erythema migrans rash we noticed after our return. After years of being told by medical professionals, "We don't have Lyme in this area," we finally knew when this all started.

Nuclear brain scans and brain function tests at UCLA confirmed brain infection and permanent damage. So, I guess in a sense they were right and I was "unbalanced." Had I walked in to the doctor with a heart condition or diabetes I would have been treated. But, Lyme was a disease the medical community was and still is at war about.

It seems there are two extremes, on one side are those that say it is easily cured with oral antibiotics and on the other side those who believe that untreated patients will later require long term I.V. antibiotics sometimes with no clear cut resolution of symptoms. I went through three different month long courses of I.V. antibiotics at home, and one when I was hospitalized in Lancaster, California as well.

Over the years we also found a terrific doctor, a 200 mile roundtrip from Hemet. He is Swiss, a graduate of the Pasteur Institute and willing to actually “practice medicine” by hypothesizing new approaches. I received regular injections of B-12 and testosterone and that didn’t include all the pharmacological treatments. He brought us great improvement in my symptoms.

Then in 2003 we were at a family reunion on a family farm on Kent Island in the Chesapeake with my wife, Pam’s family. When we returned home, my ten year old son Christian came to me and said he was feeling achy all over and very tired. I felt his forehead and he was feverish. For some reason I was prompted to say, “Take off your shirt…” I knew that Lyme was a problem on Kent Island and there was a possibility of infection. But now, as he removed his shirt he revealed three erythema migrans rashes from his waist to his shoulder.

Erythemia Migrans (bullseye rash) on Christian's left shoulder:

I now thank God, I knew what to do! I took him to the pediatric urgent care. She didn’t know what she was looking at, but I did… I told her it was erythema migrans from a Lyme tick bite. I told her that I knew it was a mandatory reportable illness and required photos with measurement of the rash to document the case. She left the examining room and made a phone call to the county health department. When she returned she said, “You know your stuff.” She prescribed a course of antibiotics for Chris and he has never had any further symptoms.

I share this just to say, “If the only reason I was infected with this disease was so I could spare my son the years of grief it has brought me, then I would willingly go through the experience again.” Over the years, I’ve become a resource to many people who were also infected and received late diagnosis. I've also urged others who had a current erythema migrans rash to get to a doctor immediately. So, I guess in spite of the tremendous downside of this chronic illness and its adverse effects on the quality of life, because of my own experience, I have been able to help people. For that, I am very grateful.

Randy Gibson, California

Another Battered Soldier--Holly Heisey

2011-07-29T01:00:00.000-07:00

I’m twenty-four and I’ve been sick since I was ten. I got sick on the first day of fifth grade, and nobody believed it wasn’t because I didn’t want to go to school. A month later my parents pulled me out and I was homeschooled. I went through countless doctors, and that’s terrifying when you’re an adult, let alone ten. I found a nutritionist who helped me get well enough to go back to sixth grade, but by then I had many allergies and physical weaknesses that kept me from really fitting back in.

I stayed mostly healthy until eighth grade, when I got sick all over again. I had to leave school in the middle of the year. I was having panic attacks (of course it was all in my head!), short breath, vertigo, and I always felt like I was going to be sick or pass out. Another round of doctors ensued, one of whom wanted to admit me to a mental facility because he was convinced I was suicidal. Tell that to a fourteen-year-old.

I finished eighth grade at home and continued to homeschool, but I also continued to get worse. Finally, my family found out our home was infested with stachybotris, a deadly toxic mold. We moved, and we have nothing today that we owned before fall of 2001. It was a miracle that we got out relatively unscathed. We thought all our health problems were over.

We joined a church, and I joined the worship team. I loved it. Then I started getting sick again. I was too nauseous to go anywhere, too dizzy to sleep in any position but sitting up. It got so bad I spent nearly a year just sitting by the toilet. I’d often sleep in the bathroom. I’d just turned sixteen. I couldn’t go out and learn how to drive. I couldn't even think straight.

Finally, a doctor tested me and diagnosed me with Lyme. It was anticlimactic but the freshest air I’d breathed. I wasn’t crazy! I wasn’t making it up for attention. And there was a way to treat it. I was fortunate that the doctor who diagnosed me knew what Lyme really was. He put me on oral doxy and I stayed on it for two years, but didn’t get better. He put me on Mepron and I knew another kind of hell, hallucinating that I was awake when I was asleep and vice versa. I didn’t really have friends during this time. Everyone I thought was a friend didn’t know how to deal with my pain and so they stayed away. I didn’t leave the house except to go to the doctor.

I didn’t start getting better until I stopped taking antibiotics and started taking mega doses of probiotics. I got a lot better within three weeks, and stayed on the probiotics for several years. I’d lost too much school and by that time I was nineteen, so I dropped out and got a GED. I’d been in the gifted class when I was younger. To have to drop out and have a GED on my record was hard. Not to be able to think as sharply as I could at the age of nine was even harder.

When I was twenty-one I got my first job as a webdesigner, and the stress of it triggered the Lyme again. I went downhill until I got three months of IV Zithromax, which helped some symptoms, but created many others. I didn’t have medical insurance because I had no job. That was a year ago.

Now, I’m barely maintaining. I can’t drive because of the vertigo. I’m a novelist, but I can only write for short periods of time. I’m an illustrator, but I only have a small amount of energy to complete each project. I have so many food allergies that my daily meals consist of maybe ten foods and combinations thereof. I get a five-day migraine every time a storm comes in--and storms come in often where I live. I have TMJ so bad my teeth don’t even touch anymore. I’m looking at another round of treatment, but am sick with anxiety over the stress involved with it.

I used to dream of being an actress, but now I’m allergic to makeup. I dream of being a published novelist, but I have to tread carefully to avoid stress. I was a pastel artist for ten years, but now I’m allergic to the chalk. I used to play the hammered dulcimer well enough to perform, but now it hurts too much to play.

I can’t support myself, and I look healthy. I look good, don’t I? Everyone I don’t know thinks I am fine. But the Lyme under my skin tells a different story. The Lyme Wars have another battered soldier.

Of course, I’ll never surrender.

Holly Heisey, Pennsylvania

A Series of Miracles--Victoria Bylin

2011-07-26T01:00:00.000-07:00

"Something terrible happened to you.”

These are not words you want to hear from an ophthalmologist. At the time I was sitting in his fancy chair in a dark exam room, my eyes red and hurting, and my vision distorted in the way of pebbled glass. I had no idea at the time and neither did the ophthalmologist, but this was the beginning of my encounter with Lyme Disease. By a series of coincidences--I’d call them miracles--I was blessed to be diagnosed early and treated successfully.

My Lyme ordeal began while I was working at the computer. I blinked and thought, “I need new glasses.” A few moments later I looked in a mirror and saw that both eyes were bloodshot. I figured I had conjunctivitis and met a friend for lunch as planned. By the end of the meal, my eyes weren’t just red. They hurt every time I changed my focus. That evening I developed the strangest fever I’ve ever had. It spiked at 103 degrees and then disappeared.

I saw an ophthalmologist the next morning. He diagnosed anterior uveitis and started me on steroid eye drops and dilating drops. He suspected the problem had been caused by exposure to cleaning chemicals, but that seemed unlikely to me. I’d cleaned the bathroom a few days before, but I’d used the same products I always use. When my eyes improved only slightly with treatment, the ophthalmologist referred me to my regular doctor for blood work. Anterior uveitis can come on for no reason, or it can be related to autoimmune disease.

By now I was feeling sick. My knees ached. I had stabbing pains in my neck. Fevers came and went. I couldn’t think clearly. I tired easily. I developed a Bell’s Palsy-like facial numbness. Something was clearly wrong, and my family doctor was on vacation. This is where God opened a door. I was working for a dermatologist at the time. She stepped in and wrote the orders for blood work. By an amazing coincidence, she consulted with a second ophthalmologist who said, “Be sure to check for Lyme.”

Sure enough, the blood work came back positive for Lyme Disease and I was started on antibiotics. There were good days and bad days until I had another miracle. I’d been on Minocyclin for ten days when I got the call that my mom was in the ICU in Los Angeles. I was in Washington DC. She had severe COPD and I knew this was the end. I had to get on a plane no matter how I felt. I went to sleep with a prayer on my lips, and I woke up feeling normal. My mom passed away five days later with her family around her. My symptoms never came back.

When I look at my Lyme experience, I’m extremely grateful for an early diagnosis. Only one doctor thought, Lyme, and he wasn’t even someone I’d seen. It was a coincidence, a blessed one, that led to my diagnosis. Not even the Infectious Disease doctor I saw at the very end of the treatment would have suspected Lyme with my eye symptoms. I never had a rash, don’t recall a tick bite, and had eye trouble before the other symptoms started. On the other hand, I lived in northern Virginia across the street from a park where deer grazed, and I later learned my neighbor also had Lyme.

Education is everything with this disease. When I returned to the first ophthalmologist, he told me about another patient who’d presented with anterior uveitis just like I did. This time he tested for Lyme. Sure enough, the blood work came back positive and she received early treatment. She benefited from my experience, and I hope other Lyme sufferers do too.

Victoria Bylin, Kentucky

I Will Make It Through--Tiffany Gonzalez: Part 2

2011-07-22T01:00:00.000-07:00

What I saw and heard next changed my life. The news segment was about a documentary movie called Under Our Skin. They were saying how all these people were misdiagnosed for years, and eventually found out they had Lyme Disease. I couldn't believe my ears! While watching, I felt an instant connection with these people. They sounded like me; our stories were so similar. I felt like that was me on the TV--but wait--I had tested NEGATIVE for Lyme in the past.

The next day I couldn’t get the news segment out of my mind. I was ridiculously giddy. My naive self feels stupid about my excitement now. If only I knew what I was in for. I did online searches for the movie and looked up Lyme Disease in Chicago. I found the wonderful ChicagoLyme website and called their contact number. I left a voicemail for the woman, and didn't really expect a call back. No one believed me before, right? Why would someone call me back? Well, I got a call back from Lauren within a half hour. Wow! It turned out she was in the news segment. Her whole family has Lyme Disease; she lived right here in the suburbs. She directed me to where I could go for the much more accurate test called a Western Blot Blood Test done by IGeneX.

That day, I sent out a FB message and email to my friends, inviting them to come see Under Our Skin with me. No one responded. Who can blame them? They didn't know anything about this "Lyme" thing, and it didn't affect them, so why should they care? I get that. I do. At least my little sister Adriana came with me. Thank you! We saw the movie and I think I sobbed through most of it. I felt like the people on the screen were telling my story, without even knowing me. It was a crazy experience.

I went for my Western Blot test and waited a month for the results (that's how long it takes). I had prepared myself for the grueling results and expected them to be positive. I had all the symptoms. Well, my doctor read--misread--the results and told me they were negative. I cried. I cried so much. I was glad I didn't have this horrible disease, but then what was wrong with me? I left with my bittersweet answer and never felt more defeated. Now I was depressed.

About three months later, I went to the Lyme Support group to see if I could sell some "Awareness" jewelry. Lauren heads the group and asked to see my Western Blot results. We went through them together and her face went blank. She just looked at me with this face of “uh-oh,” turned to me and said, "We need to talk to Dr. ***** right now and you need to see a Lyme Literate doctor right away." I started to shake, had a minor panic attack and walked out of the room. The support group is in the same office as the doctor who ran my Western Blot.

After re-reading my results, Dr. ***** pulled me into a room, sat me down, and told me she was so sorry. She had read the results wrong and I was in fact POSITIVE for Lyme. I was bawling at this point and just wanted to collapse. I could hardly breathe and for a moment, really wanted to die. She was crying too and was very apologetic. It was surreal, sad, and stressful. Was this really happening? Or was this another bad dream? I hold absolutely no ill-will for this doctor. It was a mistake and although I was angry for a moment at what was happening, I forgave her right away. I love her! She has been a blessing in my life.

Now, I had to come back to terms with the results being positive. But this time, I had a huge amount of support around me. I had new friends who would be there to help walk me through it. I was on solid ground, even though it felt like quicksand. This was a bittersweet diagnosis, because as much as you want an answer, this answer told me I’d be screwed for a very long time--possibly forever. The “Old Tiffany” probably wasn’t going to come back, at least not for a long time. I was going to be the “Always Tired, Always Hurting, Always Home, Boring Tiffany” for an indefinite amount of time.

My friend helped me get in with her LLMD (Lyme Literate Medical Doctor). I got an appointment two weeks later with his PA. Do you have any idea how amazing that is? My doctor has a 400 New Patient Waiting List. I was very lucky, and I've been in treatment since October 2009. I’m already on my third protocol for treatment.

Although I probably got the Lyme from the tick bite, I could’ve also gotten it from a horsefly bite or other insect. I used to go up north to Land ‘O Lakes, Wisconsin where I had been bit many times by many little punks.

Lyme disease is an infection caused by Borellia Burgdorferi, a type of bacterium called a Spirochete carried by ticks, fleas, deerflies, horseflies, and mosquitoes. Lyme disease has three stages, and at any stage Lyme disease is very dangerous to somebody’s health. Stage One is known as the early stage, Stage Two is called early disseminated, and Stage Three is called Chronic Lyme. Because it "hides," most people take years to get the proper diagnosis and it ends up being too much, too late. Mine took six years.

Along with Lyme come a lot of “co-infections.” The co-infections are what make most of us Lymies really sick. They are called Ehrlichia, Babesia, Bartonella and some others. There are parasites as well, which I also just tested positive for. Lyme and its punk friends may be caused by a little itty bitty insect, but causes so many big problems. It’s led me to Hashimoto’s Disease (thyroid disease), endometriosis, ovarian cysts, Reynaud’s, daily migraines, GERD, anxiety, and a ton of other common Lyme issues.

As you can imagine, it’s a tough disease, and insanely hard to treat, making you feel like you’re going insane! It’s hard, it’s REALLY hard. There is no known cure, and no one way to treat it. Most of my Lymie friends are on months of antibiotics, and most get them by IV. Unfortunately, Infectious Disease Guidelines say there is no such thing as Chronic Lyme Disease and believe it can be cured with two weeks of Doxycycline antibiotic. It’s very frustrating and can leave many of us Lymies feeling hopeless. I go back and forth with those feelings--depends what day it is. Because of the ISDA’s ridiculous guidelines, our treatments are not covered by insurance. My bill with my doctor is already over $2,000 and growing. That is all out of pocket plus my medications and supplements that insurance won't cover--or partially cover. Just one of my medications, Mepron, costs me $230.

I try to sell my jewelry to help pay for the medical costs. But even that's hard, because my hands hurt and cramp too much to make more jewelry. It's a catch-22.

One of the closest “Lyme Literate MD’s” is in Fond du Lac, Wisconsin . I drive three hours each way to see him. I just got diagnosed in October and have been told I have at least another year+ of treatment. Right now I take more than 45 different medications, supplements, and shots, in hopes that one day I will be at least a little better. For now, I mostly stay home and live life vicariously through online friends, wishing I could do what they’re doing. Wishing that I could go out for at least one night of fun with friends or family, and not be laid up in bed the next day for over 17 hours. I have hope, I have strength. Even though it may not seem like it at times, I will make it through.

Tiffany Gonzalez, Illinois

I Will Make It Through--Tiffany Gonzalez: Part 1

2011-07-19T01:00:00.000-07:00

In the summer of 2004, I was bitten by a tick. I was told by my doctor’s office that I had nothing to worry about because the tick hadn't been in me long enough to do any harm. Usually the protocal is 24 hours; if it's in you for less time they THINK you won't have a problem. They told me to keep an eye out for the classic "bull's-eye rash." If I got that, call them immediately. I never got the rash, so I didn't worry.

Not too long after the bite, I started with horrible headaches, abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue. Neurologic and cognitive issues became out of control. Things got much worse after a bad roll-over car accident I had in 2006, jolting my entire health system out of control.

In the summer of 2009, I started forgetting what I was saying in the middle of every conversation. I started making myself talk really, really fast, just so I wouldn’t forget what I was talking about. My throat felt like it was closed up. I'd choke for no reason. I began dropping things, too. My hands twitched like crazy and I would sit on them all the time so no one would notice. They also began to cramp up and close. I would make myself hold large objects thinking that I could prevent the joints from wanting to close up. I had difficulty holding the steering wheel. My thighs trembled all the time and my knees would give out.

I had been at my job for four years at this point, and I knew my duties inside and out. I could do my job with my eyes closed; however, I would get confused doing something as simple as checking in a patient. I would get frustrated with myself all the time. Dyslexia became more common for me. I had anxiety often, and over the smallest things.

My fatigue was so bad I would sleep in my car at lunch, or go home and take a half hour nap. I couldn't (still can’t) wake up in the mornings, and when I do, it takes my body forever to loosen up. I tend to walk like an old grandma, and my ankles don't bend. Really, I thought I was losing my mind. I started to cry often at the loss of "myself" and not being able to do a thing about it.

I went as far as letting my doctor give me injections in my wrists, hips, lower back. They were excruciating and I’d cry the entire drive home. Was this really my life? I eventually stopped the treatment when they wanted to do injections in my neck. No way! On to the next doctor please…

In six years I had been to over ten doctors trying to find answers. Most of them told me nothing was wrong with me. I had so much blood work that I’m surprised I’m not anemic from all the blood they took. My test results were always in the perfect range. Eventually, they tested me for Lyme Disease but the test came back negative (I now know that 70% of the tests show false negatives).

Over time I was sent to see a sleep doctor, neurologist, gynecologist, psychiatrist, someone for my stomach, etc., to address each of the issues. For the longest time they all kept saying nothing was wrong. One said I was just depressed from the car accident I had, and they told me my aches and pains were a result of the depression. “Here, take this Cymbalta. It’ll help make you better!” Ick. That didn't work and I left my doctor wondering if I was really going crazy.

How can I be wrong about what I felt and what I was going through? I trusted the medical community, but I was so confused. That in itself can lead you into a depression. Eventually one of my doctors listened a bit and acknowledged that I did have true muscular pain and joint pain. He diagnosed me with Fibromyalgia and Chronic Fatigue. Finally something more than the usual “There’s nothing wrong with you” diagnosis.

Lyme is usually misdiagnosed as Parkinson’s, arthritis, MS, lupus, Fibromyalgia, gout, ADD, Epstein Barr virus, Lou Gehrig’s Disease, Chronic Fatigue, and many others. I knew there was something more to just having Fibromyalgia, but how could I prove it? How could I prove what I had--and felt--was real? How could I make others understand that I wasn't just being lazy, and that my fatigue was beyond my control?

I had been working out with a trainer, lost weight, and was on a healthy path. During that time I broke down at the health club because I got to a point where I could do less and less. Eventually I could only walk on the treadmill, but then that became too difficult for my joints. This was not a weight issue. I know it's hard for some to believe. My diet was great. I was on a good track. So why was I getting worse?

Last summer, while in the midst of my worst symptoms, I was watching the news. Those who really know me know I love Channel 7 News. I never change it. For some bizarre reason I didn't like their "Special Segment" and changed the channel to 5. Must’ve been a God thing--I was just flipping through--because I heard the words "Fibromyalgia, Chronic Fatigue, Parkinson’s, etc." I immediately turned up the volume, and what I saw and heard next changed my life...

Part 2 Friday.

Lyme's Hidden Gifts--K. C. Smith: Part 2

2011-07-15T01:00:00.000-07:00

At seventeen I fainted at a funeral, and it had nothing to do with the funeral. It was 100+ degrees out, and it was humid. But it is strange to be only seventeen, and fainting in this great big crowd of 80- and 90-year-olds. Amazing Grace will never sound the same again--they were singing that as I was fighting to keep consciousness. What’s worse is that I succeeded. If I ever faint again I won’t fight it. I don’t think it can possibly hurt as bad as that struggle of mind vs. body to hold on and stay standing and control how you go down. You have to just let it go.

I still loved Bocelli’s music, and I was learning to cook Italian. I loved the whole Italian culture now. Before this I had only cooked stuff that came as a mix in a bag. But I learned I was a good cook and that I enjoyed it, despite the pain in my wrists. They would go numb after enough work. The pain would hit the next day or the day after, but it would be numb for a while so it was well worth it.

We were still making soap. I was having allergic reactions to the artificial fragrances we used to make the soap. We had also put a backyard garden together. Most the plants died that year. We aren’t vegetable gardeners, but I did so much shoveling to make that garden, and I went out there to tend to it. I was the only one who did much gardening. I was hoping that growing our food would be my way to change things.

At eighteen I was sick with my second sinus infection in the fall, a couple weeks after my birthday. Mom was on her annual “Let’s change the kitchen around on Thanksgiving week!” kick, and I was too exhausted and out of breath to help out except for the little stuff. I was clearing a bookshelf, and Dr. Doris Rapp’s book Is This Your Child? fell onto the floor. I picked it up and was out of breath, so I sat down and skimmed through. I read the page on yeast allergy. I went to mom and said “Look at this; this is our problem!” I’d been reading Mercola fervently for a year and the answer hadn’t clicked. But the single page of Rapp’s book was the first puzzle piece I could do anything with.

So we started on the anti-yeast diet on Thanksgiving Day, and I led the battle. The little bit of energy I had all went into cooking and drill sargeanting my sugar-addicted family. “Don’t feed the yeast colony!” I had an answer to something, and I was going to get to the root of the problem. This diet helped me tremendously. In a few weeks I had read the tome by Dr. William Crook on yeast, and I was cooking every meal, and making everyone take their goldenseal.

In January, I was eighteen, and we finally took a trip to my LLMD’s area. We set up appointments for the whole family. Why not support this nice doc, huh? Most of the family was fine--it was me who had the obvious problem. I have one brother with Lyme as well. We focused on him for a year or so, but he’s not good at following orders. Thankfully there have been some major improvements for him. My mom and the rest of the family were over their yeast problem. I was the one who still had yeast to battle, and mono on top of it. It was there that I learned mono can be chronic.

I’ll never forget that day. My doc looked at me and said, “I don’t know how you do what you do…” I probably just grinned and said something like “Well, I’m Scots-Irish.” He also had to be careful about how to say that I had Lyme. He had to help me get the yeast and mono under control before touching the Lyme, which often is hard to explain to a patient who is eager to get all of this stuff dealt with NOW. That was not the time for Lyme. He just said my joint pain was from a bug bite.

My only question was why ticks seemed to prefer certain people, mosquitoes liked other people, and fleas different people. Ticks liked my brother, and mosquitoes and fleas liked me, and it was a different combination for each family member. He said he didn’t know the answer, and said I could look it up and email him. So I looked everything up, wrote him a little paper citing my sources, and emailed asking for another project because I liked it so much. It turned into an internship one year later!

There is also a really good chiropractor we began seeing. This chiro is great at giving adjustments suited just for what your body needs, and knowing what supplements a person needs. His recommendations for me have been consistently accurate and benefit rich. We had remodeled our kitchen in June, in three weeks. I was suffering badly from the chemicals, loss of sleep, and bad diet induced by the craziness. Then we immediately went on a trip for a week to a place that served what I swear is plastic food. I got back home and felt like I was going to have full-blown mono again. Then the chiro said to use a homeopathic for the yeast, and be sure to continue the homeopathic for the mono as well. In three weeks the yeast and mono were down to being a non-issue.

Not long after I was doing well clearing up the yeast, in early July, we had a French exchange student come and stay with us, and my friend also came for a week. I hadn’t been feeling the best in my abdomen, having those "take you to the floor” type pains. I had one while swimming that didn’t go away. Mom fussed at me for not standing up straight. I hurt so bad I couldn’t stand up straight. I couldn’t stand straight for a week. I continued in pain and had more frequent bouts that felt like they would take me to the floor. One time they did. After that I was standing even more bent. I looked like that shot of Mandy in the Under Our Skin film where she couldn’t stand up straight.

Mom called the chiropractor because at this point she really was worried this could kill me. (Her aunt had died at 16 or so of some “female” disease.) The chiro sent me a homeopathic remedy. After taking that, in a few hours I was standing straight again, and had healing-type pains--mild, pulsating, warm pain. It took a while for my body to get rid of the junk, but the remedy got me there. I think the chiropractor saved me not just from the ER, but likely my life as well.

After that I thought I MUST be well. I was a little offended at first by Schaller’s attitude in his writing on why Lyme treatments fail; but I know he has the right to believe (among many other good things), that we have poor judgment about when we are better. We think improvement = cure, but it doesn't! With each little thing I’ve thought “Ok, I’m cured now! I can live my life.” Thankfully only once did I get truly sick again before realizing my error. I, in my Lymie brain, thought I was cured--still with joint pain and brain fog. I went to spend a week with my friend during her second year of college. It was fun, but proved to me that I was still sick.

I had a couple weeks to recharge from that experience before I saw my LLMD again in August. This is when he told me I had Lyme from the bug bite I must have gotten. The yeast and mono weren’t an issue anymore. We could now focus on “Lyme and Co.” It was really no big deal to me. I just took what he told me to, and was going to see him in January of the next year. I did great on the things he had me start doing. The picture was really simplified; we could address Lyme now.

I went home and didn’t bother with research. I herxed a week after I got home, and wasn’t scared by it. It was like I knew that would happen, and was ok with it. I knew I had this internship coming up. I could ask the doc all my simmering questions then, huh? Despite being told otherwise, I thought I was cured as soon as joint pain and brain fog were down a little bit. I stopped taking stuff in early December. I thought that at nineteen I was done with Lyme. I probably was told something different, but I hadn't listened to that part.

I felt good from September till mid-January, about two weeks into the internship. I even had my first painless menstrual cycle. Then I picked up a virus at the clinic and felt completely wiped out. I didn’t feel bad for long, because they took good care of me. I knew enough about Lyme now that I had to conquer this thing. I did wonderfully, keeping up with the internship and half-herxing most of the time! A couple times it tipped over a little far, but I still didn’t miss a day.

When I say herx, I mean feeling really slow and icky. Thankfully my only big neurological symptom was brain fog, and one herx when I went and lay down after getting home. I cried because I hurt so bad, and my heart gave me pain and skipped a beat. I could muck through that because I’d lived with brain fog and had learned things anyway, for years. By the end of the internship, I was feeling GREAT. I’d come to help others and learn, but God blessed me with good people there, and I got help too. It was truly the great feeling that I had never experienced. That feeling was something I became used to, but I was very thankful for it.

Once I got back to NC, I applied for a job and got it. I began planning for the schooling it takes to get a doctorate in naturopathic medicine from an accredited school.

In a way, Lyme has been God’s way of giving me a definite direction! Always search for Lyme’s hidden gifts, and trust fully in God. Our contentment must be in Jesus if we want to get through this!

I got bitten again in May’09 and was in a 30 mph rear-ender in the same week. I got a rash from that bite. Lyme became a new beast. I continued with my natural stuff and a not-as-perfect diet, and actually did ok (though not like I was before my last tick bite), until October.

It helped just to ask my LLMD what to do, and I went to see a naturopath in June. He also had me on enough to keep the Lyme from attacking badly. I think that stuff would have been more successful if it weren’t for my working in a store and then adding college in the fall semester. I kept the part-time job until mid-terms, but resigned when I was tired of feeling bad every time I went home after work. I hurt so bad, and felt crushed emotionally. I would get home and just cry. I crashed, hard, on finals week. It is a miracle that I left with A’s. I spent the next two weeks in bed.

It has taken a few months, and two more visits to my LLMD, but I know I’m back on track to getting well. I’ve had a few spells of better functioning in school like I did before I got sick last semester. I just got a job. It is something that is a perfect job for a Lymie trying to recover. Being reinfected and having whiplash made Lyme a very different beast, but I’m learning not be afraid of the way it behaves.

Lyme is a journey, and I will get better in God’s perfect will. I know it is possible! This experience will help me better understand patients when I’m a practitioner. So many blessings have come out of it. I think if someone asked me if I had the choice of life as it is now, or life without Lyme, I would choose exactly the life I have.

I'm twenty years old now, and I’m not completely recovered. But I've come a long way.

K. C. Smith, North Carolina

Lyme's Hidden Gifts--K. C. Smith: Part 1

2011-07-12T01:00:00.000-07:00

My Lyme symptoms started when I was nine, but I wasn’t diagnosed until I was eighteen. I believe it takes having the wrong internal environment for Lyme to even set up shop, a degree of a weak immune system to begin with.

At nine I had some lymph nodes in my neck swell up and stay swollen for months. They itched. I couldn’t keep from scratching those lumps under my skin. We went to the pediatrician, and he assured mom it wasn’t cancer and sent us home. I began getting headaches, and was suddenly sensitive to every storm, coming, and going. Mom told me that I must have bad sinuses like she does, along with her sister and her mom. "It's normal; you're just starting into the pain of it a little young."

By the time I was eleven I was having migraine headaches sometimes. We also began making homemade soap with all the artificial, industrial strength fragrances. I was the scent mixer because my whole family knew I smelled everything really well, had good “scent-taste,” and wasn’t at risk of sticking my nose in the oil to smell it. Occasionally it would give me a headache, but not that often. I chugged along, thinking life was normal.

Abdominal pain was a regular thing. I never considered it a problem, just said, “Ow.” Like most kids I was told, “Stop whining.” If your parents don’t think a heartbeat of it, it mustn’t be a problem--right? I was becoming resistant to the Aleve that the pediatrician had told me to take whenever I got a headache. Aleve was the only thing that used to touch it. Tylenol and Ibuprofen didn’t do a thing, and pre-adolescents can't take aspirin. Those headaches were common. I remember crying because they were so bad. The sounds of electronics invariably set them off. As a kid I hated talking on the cell phone, and had no reason that I knew of! I remember always being cold. I was so cold on some days that I would wear sweaters in the middle of summer.

I remember how my first menstrual cycle went. When I think of it now, I see the Lyme and hormonal extremes. For two or three weeks before it I felt AWFUL. It was summer, and I was lying on the sofa. Then, the day I had my first cycle, I felt good. I cleaned the whole house and organized a bookshelf. Mom was amazed. Then I had to use the bathroom and learned--as some would put it--that I was a woman.

Within an hour the cramping began. I don’t remember how long that lasted, but it was as if the pain inside was a rope trying to pull me to the floor. My cycles were pretty regular for several years. But the pain in my pelvic area, at any time of the month-–it did not correlate with ovulation–-would be like someone stabbed me with a knife; it would tear and be so sudden that I would go to the floor sometimes, as if I had been pulled down. It wasn’t the same as the summer diarrhea pain I got. That was something I also grew accustomed to.

By the time I was twelve years old I was having pain in my joints, especially my right wrist. I was better than the weatherman at predicting the weather. I would go out and play, but I'd have to rush inside because the heat gave me diarrhea with cramping. Down in the south, you don’t talk about the bowel stuff, especially as a kid–-it’s not very attractive. I was always content to study, and wasn’t the most physical of kids. I did everyone else’s chores, but wasn’t good at doing my own!

When I was about thirteen I started going into my room and having a crying spell for fifteen minutes every single day for at least year. It was just to cry--I don’t remember any good reason. I got sick of my crying and dried it up after a year. I said to myself, “If I don’t have a reason to be crying, then it’s wrong for me to be having pity-parties.” Maybe that was depression. I remember having nights that I couldn’t sleep, but thankfully this wasn’t too often. My dreams were always tense, with strange nervewracking twists in the story. All I heard was that this was the nature of dreaming. I often startled awake in chills, and an inch off my bed, when I dreamed I had slipped off the steps. This dream continued until I was nineteen, and I still have it occasionally.

When I was fifteen or sixteen I basically slept through the entire winter. I remember trying to sit down to read something, or listen to some audio program, and next thing I knew I had been asleep for hours. I wore three layers of clothes and was under two heavy afghans and was still cold all winter long. That was the year I didn’t play out in the cold at all.

Thankfully I don’t remember too much awful stuff, but I don’t remember much at all. I just remember that we were listening to the Audiobook of C.S. Lewis’ Screwtape Letters. Needless to say this produced some horrifying dreams. When I was awake I would be warmer after having slept, and I didn’t really want to go back to sleep. But I would inevitably drift off again. I did have spells of needing to run up and down the stairs--yes run--but it was at strange hours like 11 pm, 1 am, 3 am. It happened only a few times when the sun was shining.

At fifteen, I thought it was completely normal to live five days out of seven with a migraine headache--light, smell, and sound sensitive. It would make me throw up about once a week. Every time I stood up I had to catch my balance because I would get lightheaded and my vision and hearing would fizzle most of the way out and then come back.

By this time I was nicknamed “super-ears” by my brothers who wanted to play video games or watch a little TV while my migraines would make me vomit. I’d be screaming for them to turn off the TV, and it was downstairs and across the house, on volume 1. I was told I was being oversensitive and to be nicer to people. I just shut up, but still would fuss sometimes. I didn’t feel good enough to scream too much.

I could drown the world out with classical music, and I could play my flute. Actually, holding the flute relieved my wrist, but the need for breath was a slight challenge until I had a good enough diaphragm to compensate for the lightheadedness. Then I discovered opera, and Andrea Bocelli! I listened to his music constantly-–it was definitely obsessive.

Aleve did me no good for the pain, anywhere. I didn’t really complain about anything but my wrist and my head. Somedays I would lie in bed and feel as if someone had beaten my head against a brick wall, smearing it against the brick, trying to grind to the bone. If I wasn’t just about to vomit, only Andrea Bocelli’s singing could ease my pain. If I was going to vomit I was in for several hours of pure misery, knowing relief would only come after losing my lunch. I did an awful lot of writing on his forum back then. I didn’t know why it touched me so much. I thought my level of pain was something everyone dealt with. If mine was normal, I didn’t know how others survived “real” pain. But that was something I just “knew” and never thought about.

I was so sensitive to hurricanes that if they were 600-800 miles away I invariably lost my voice. The sinus pain was extreme--those days of lying in bed, feeling like I was being tortured by the mafia. (Now I know it was some secretly renowned Nazi scientist who was inadvertently torturing me. See Lab 257. Ha ha.) I couldn’t wait for the hurricane to get here so I could feel the relief. I remember waking up and telling mom “Katrina just went from a 3 to a 5--I promise you!” It felt so horrible. She checked the radar and the news, and everyone was talking about how strange it was that Katrina had gone from 3-5 overnight. I knew it! It was miserable. What’s horrible is that the pain let up some when she hit land. Made me feel kind of guilty, but oh the relief!

I still managed to get my schoolwork done; it was a kind of distraction. I always have been very study-driven. I also delved into studying Italian. I wanted to understand the beautiful language that I had begun singing along with.

Thanks to the sinus issues and using my diaphragm for playing flute, I was sixteen and could sing not just a decent alto, but sing right along in Bocelli’s voice range. I wanted to sing soprano but heard the tinny quality of my voice and couldn’t stand it. My brothers got sick of it too. They told me to sing in Bocelli’s octave, for everyone’s sake. I would spend time in my room a lot. On some days I could zone out of all the noise that was killing me, or overwhelm it with my music. Other days I would watch something on TV with mom.

We got wrist braces at Wal-mart for my right wrist. It would swell at random times, and I'd be in such pain. Both wrists were too weak for me to open a container on my own. I thought that was normal too; after all I was the only girl in the family. No muscle sister to compete with. Despite all this I took drivers' ed and did decently well. OUCH on the wrists! This was also the year I got interested in health. Surprisingly, that is all thanks to my now-LLMD. He came up to our church and gave a lecture on how to stay healthy. I took six pages of notes for a 45-minute lecture! I’m in college now and to date haven’t taken notes that extensive. I began reading health stuff like crazy and I wanted to change our diet, but my family wasn’t for it. It was “too expensive” to change. But the time would come.

At seventeen, I fainted at a funeral...

Part 2 Friday.

Be Your Own Advocate--Angela Coulombe

2011-07-08T01:00:00.000-07:00

In August of 2007 I had just completed three things on my life’s “to-do list."

1. Kick through a solid 1/2″ piece of pine to obtain my brown belt in Tae Kwon Do

2. Appear on stage in a solo dance performance

3. Run the Beach to Beacon, a 10k race (which I had completed in 54:51.8 wah-hey!)

On top of a full-time job and raising two boys, I’ve always been a bit of an athlete; as a child I did gymnastics, tennis, dance, any sport going. As an adult, I ran, went to gym regularly, attended dance class and participated in TKD three times a week. I’d always been physically fit, cherishing this as my link to sanity and well being.

First Signs of Lyme Disease

The day after completing the Beach to Beacon, Aug. 4th, 2007, the area surrounding my right knee started swelling. Having injured my right knee several years earlier in another running incident, I thought, “No big deal. With a couple weeks of OT and rest, I’ll be fine.” I started therapy but after three weeks the swelling hadn’t gone down. During this time, I also started to notice that my shoulder joints were becoming sore, and it was difficult to sleep on either side due to the shoulder pain.

The OT’s were baffled as to why the swelling in my knee, now very noticeable even through trousers, wasn’t getting better. They scheduled an MRI. The pain in my leg fluctuated from highly uncomfortable to completely unbearable. I had been on Aleve and ibuprofen for weeks without it touching the pain or swelling, and I hoped the MRI would finally pinpoint the problem.

The MRI showed no major injury, just unspecified inflammation. It was now September, and my boys were back in school. At this stage all my joints were sore. To top it off, I seemed to have come down with a stomach bug or some kind of “flu,” as I felt run down, constantly tired, and sick to my stomach. I started to have bad headaches.

The breaking point came one Saturday morning in mid-September. After bed hopping most of the night before, trying to find the best mattress in the house to sleep on, I settled on the bed in the spare room. By this time I could barely sleep for more than an hour at a time at night, needing to roll over to alleviate pain in either my shoulders, back, or hips. The phone rang at 8 am that Saturday morning, I tried to get out of bed to answer it but couldn’t. No matter what I did I could neither push myself up on my elbows to get up, nor swing my legs around to get up. I was in so much pain I had to scream to my husband to come get me up.

Now I knew things were seriously amiss. It was the weekend and I didn’t want to go to the emergency room, so I decided to ride it out until Monday. Then, out of nowhere, a huge, ugly red ring appeared on my upper arm. I had no idea what it was and had never considered Lyme. I knew next to nothing about the disease or how it was transmitted. As I felt my whole body falling apart, I thought, "Geez, what now?"

The Lyme Diagnosis

My primary care physician (PCP) quickly suspected Lyme but wanted to have it confirmed by an infectious disease (ID) specialist and some blood work. When I arrived at the ID doctor’s, he confirmed the initial Lyme diagnosis, told me I’d be absolutely FINE after three weeks on antibiotics, and sent me off with a prescription. Three weeks later I was anything but fine! I was more sick than I’ve ever been in my life and could barely move. I could no longer raise my arms up over my head, dress myself, move my neck or head from side to side. September passed into October. I tried not to dwell on the fact that just two months prior I was a top athlete now reduced to a near invalid.

I phoned my PCP back and explained to her that I thought I needed more antibiotics and described what was going on. She told me I had to go back to the ID doctor as he was the one who diagnosed Lyme and had prescribed the antibiotics. Feeling hopeful that he’d be able to help me, I phoned him. I explained that I felt even worse than before, was more of an invalid than before, and asked what he thought I should do. Then he dropped a bombshell. He said, “What you are experiencing now has nothing to do with Lyme; we all have aches and pains, and you are simply experiencing the effects of old age and arthritis. (I was only 43 and none of my blood work showed anything arthritis-related.) You don’t need anymore antibiotics!” Reeling from the shock of what I had just heard, I tried to explain that I found the arthritis pretty hard to believe, as I was so physically active two months before. Heck, I ran a bleeding 10k race! That was a waste of breath; he had already hung up on me.

I never felt more alone in all the world as I lay on my couch in disbelief and shock, wondering what the heck I was going to do next. I knew my PCP and this guy weren’t going to help me get better, but I had no clue as to how to help myself.

I could go on and on about the pain, misery and fear I went through, how it affected every aspect of my life and the life of my family, but that’s not the point of this project.

By a stroke of pure fate, I was given the name of a doctor who could help me. I started seeing this doctor in mid-November, 2007. In my naivete, I expected to get well in a month--or possibly two--once I started treatment. What I wasn’t prepared for was the long year and a half ahead of me. Suffice to say, it was an interesting journey, filled with ups and downs and interesting discoveries, even things I had to laugh at. Once I was detoxing in a dry sauna and thought, "I must multi-task, saunas are boring. I’ll just read a bit!" I brought a book, The Road to McCarthy, by Pete McCarthy (a truly fantastic book I wholly recommend) into the sauna to read. This copy belonged to my husband. I noticed the book seemed to have some loose pages. It took me a while to comprehend that it was the heat of the sauna melting the binding, causing the book to fall apart. I again had to laugh at my naivete and stupidity!

Hope in the Face of Lyme

My whole purpose in writing this is to give hope, so here is my statement of hope. After going from being incapable of dressing myself or getting upstairs on my own, going through detox strategies, etc., it has now been fourteen weeks that I have been off all Lyme meds. So far so good. I am back to most of my "pre-Lyme” activities--Tae Kwon Do, dancing, and running, my life saver! In fact, I have been training to run the Beach to Beacon again, can run four miles at the same pace I did prior to Lyme (and I’m two years older), and I’m almost running a single mile faster than I have since I started running as an adult!

Deriving Hope and Inspiration

First of all, I just knew the infectious disease doctor was WRONG! How could I have become arthritic to the point of being unable to get out of bed unassisted in the course of a month and a half when none of my blood work showed any signs of rheumatoid arthritis? As an athlete, I knew my body. I knew the difference between a muscle ache and a torn ligament! I knew what was going on wasn’t “old age!” So my hope, the one I clung to during this time, was to prove the ID doctor wrong and to one day run again and participate in the activities I so enjoy.

After receiving prolonged treatment, I was able to return to the gym in February of 2008. I once could curl 20 lbs easily. Now I had problems lifting just 4 lbs for months, but I hung in there because at least I could lift 2 lbs in each hand and saw that as real progress! The encouragement of my family was crucial; every day they saw small improvements and brought these to my attention. Where I once couldn’t squat down to pick up something off the floor, by July of 2008, I could. Though I felt like I couldn’t run again, my curiosity got the better of me and I tried to run a mile on a treadmill in the basement. I ran my first mile in Feb 2008 in--drum roll--45 minutes. (I could have walked it in the same time or maybe faster?)

That alone inspired me to try every day to improve on that time. By March I had the mile down to 35 minutes; by June, I could run it in 10 minutes! Seeing that I could actually regain what I had lost gave me tremendous hope and inspired me to strive to do more. I don’t think I would be where I am today without the support group of people I had not previously met--or might never have met--had it not have been for Lyme bringing me to them.Their selfless sharing and reaching out sustained me throughout. I also clung to the idea that something positive would have to result from this experience. By sharing my story and other people's stories, I hope to give others in my situation a glimmer of hope and educate others about the effects of chronic Lyme.

Life Changes and Modifications

Granted, my present-day well-being has come with a price. I’ve had to modify my lifestyle to maintain this state of well-being. I can no longer have late nights, excessive stress, or “over do” it on a continual basis. I now realize that when I’m tired, I need to rest; when I’m stressed, I need to let go; when things are out of my control, to say “c’est la vie” and let it stand at that. I’m learning to live with Lyme but not let Lyme become my life.

My message of hope to anyone out there is to believe in yourself, trust your instincts, and when in doubt, seek a second opinion. Educate yourself, be your own advocate and above all, don’t settle for a diagnosis you know in your heart is not right.

I have now been off all Lyme meds since April 2009. I’ve celebrated my 45th birthday. My one wish for 2010 is to train for a marathon to raise awareness of long-term Lyme Disease, and how the effects can be managed by long-term treatment.

April 2010

I GOT IN! I’ll be running in the New York City Marathon, November 7, 2010 to raise awareness about long term Lyme Disease. I have never run more than ten miles in my life, so this should be exciting, but someone has to do it!

Update, November 2010

I DID IT! Follow me on Twitter http://www.twitter.com/lymerunner or http://www.lymerunner.com/ for more details of my marathon experience.

Angela Coulombe, Maine

Stymied--Annie

2011-07-05T01:00:00.000-07:00

The first time I thought I had Lyme Disease was in September of 2007. My family and I had come home from our final outing to our camp in Tunbridge, Vermont. We had just passed papers, and the new owners let us stay at camp that night since we also went to the Tunbridge Fair. We slept on the floor on air mattresses and I remember waking up with a sore eye. This was not unusual since I had been having eye infections on and off for a couple of years. The day after we got home was Sunday; my eye looked worse. I felt like I was coming down with something. By nightime I felt okay, but my eye was worse and my other eye was starting to turn red too.

On Monday, September 17, my eyes were worse so I made an appointment to see my PCP. She was out of town but I did get a substitute doctor, which was encouraging, since I am not crazy about my PCP.

The doctor wasn't sure, but felt the eye problem was viral since there was no pus. I also discussed the off-and-on bouts of diarrhea I had during the summer months of 2006 and 2007. We though it might be gall bladder related since it didn't have the characteristics of IBS. I went to my optometrist and he thought I had a viral episcleritis infection. He told me to use hot compresses on my eyes. Ironically, he had spent several years fighting Lyme disease.

That night I got ready for bed and noticed my right heel was sore as if I banged it or something. By next morning both my heels hurt. Throughout the day things went from bad to worse as the pain spread thoughout my feet and toes, up my leg to my knees. My ankles were very swollen and felt sprained. I also had a weird rash and bright red skin covering the tops of my feet.

By the next day there were splotches of red on my legs and they hurt to the touch. My elbows were now sore too. The soles of my feet had red blotches and my toes looked like sausages that were ready to burst. I could not walk; my feet were in excruciating pain. I did not feel sick like I had a cold or flu. I went back to the doctor. He didn't know what to make of it and had me tested for ANA and Sed, rate thinking I may have Rheumatoid Arthritis or Reactive Arthritis. Also while I was there my feet turned dark blue, exhibiting Reynauds which I never had before. My blood pressure was extremely low.

I was scheduled for an abdominal ultrasound. I needed something for the pain so I could function, and ibuprofin was out of the question. I had taken so much of it earlier in the year for a ruptured lumbar disk that it now made me sick. We decided to try Celebrex. I found that although it took a while to work it did make it much easier for me to walk and I could function for at least half the day.

The next day, Sept 19, my feet were even worse. On the side of my left foot was a semicircle rash that to me (and no one else) looked like half a bullseye. There was no sign of a tick or a tick bite but I really felt as if I had come down with something strange like Lyme disease. Although I had small red rashes on both legs this was the only rash that was itchy. I took photos of it. I noticed that for the first 3-4 hours of the day my feet were in excruciating pain but not quite as bad as the day progressed. This became the standard for me. When the Celebrex kicked in I got dramatic relief.

The next Monday, Sept 24, I had my ultrasound and went back to the doctor. I know I had more rashes and symptoms. My bloodwork had come back normal but he had me get more bloodwork and a Lyme test. As little as I knew about Lyme at that point, I knew the test was worthless. He gave me a three week prescription for Doxyclyclene and told me regardless of the test, if it were him, he would start the abx. I started the Doxy that night.

The next morning I noticed my arches hurt more and the base of my toes hurt.

The next day my feet were so swollen I could only wear slippers. I went back to the doctor and he told me my bloodwork was still normal. He was stymied and offered me prednisone which I declined since I go psycho on it.

Friday my blood tests came back normal. My ultrasound showed a normal gallbladder but enlarged ureters on my kidneys.

By Sept 29 my feet weren't as swollen or sore but I felt exhausted and mildly flu-ish. The next day my eye started to get red again. My eye doctor thought it was episcleritis again. I had an existing appointment with my dermatologist for an eyelid problem from the previous year, and he looked at my feet and what was left of the rashes. He said that he did not think it was Lyme but just in case, I should have an extra week of abx. He gave me samples of Doryx which is timed-release Doxy. By then the Doxy had been causing nausea so the Doryx was a welcome change.

I called my Cranial Osteopath's office to find out if there was a Lyme doctor less than an hour and a half away. Much to my surprise and delight I found out my Osteopath was also a Lyme doctor. I already had my monthly appointment coming up. When he saw me he said he couldn't confirm or deny Lyme in me as nothing was really typical. He gave me the IGeneX lab kit which I brought to Labcorp. On the evening of October 31st he called me to tell me I tested "very positive" for Lyme--even CDC positive.

He started me back on Doxy from the local CVS but with a mail-in to Medco for three months of double dose Doryx. Medco gave me a hard time but my LLDO spoke with them by phone and I was eventually able to get the Doryx. The Doxy was making me so sick to my stomach I almost couldn't keep it down. It made me salivate so strongly that I had to stay by a sink.

Prior to September 2007 there had been major stress and traumas dating back to May of 2006. On that Mother's day there was a flood of biblical proportions in my neighborhood. My neighborhood is surrounded by an oxbow lake. The last major flood had been in 1987 but this one was much worse. The main road that connected the neighborhood to the rest of town was under twelve feet of water. Twelve of my neighbors had homes flooded but mine remained dry as I live on the highest point. We had to evacuate as electricity and water were cut off. We stayed in a hotel from Sunday through Thursday when the water had receded enough for utilities to be turned back on.

Thursday night I experienced a weird visual disturbance in my right eye. My eye doctor referred me to a retina specialist and I was told I had a detached vitreous. Around this time I started having problems with my eyelids flaking and peeling and my eyes kept getting minor infections. I also started having bouts of diarrhea that didn't correlate to my diet. The diarrhea calmed down by winter but in January of 2007 my L5-S1 disc ruptured and a large chunk landed on a nerve root. It left me with a gimpy left leg and pins and needles in my left foot. In February an MRI confimed that I had bulging and herniated discs as well as spondyliosis of the L5 vertebra.

I was put on a Medrol dosepak which is a six-day prednisone pack. Two weeks after taking the prednisone my right eyelid swelled up so badly that my eye was almost shut. After making the rounds of several doctors, my dermatologist diagnosed eczema and prescribed a very mild cortisone ointment to put on my eyelids. This seemed to do the trick and my lids stopped flaking and swelling. I had my back surgery two weeks later in March where the chunk of disc was removed, the herniated disc material was removed, and the side of my L5 vertebra was shaved as it had been pressing on a nerve for 30-40 years. According to the surgery report, a hefty dose of prednisone was applied to the area before closing me up.

In mid-April we had another flood that was not quite as bad as the one in 2006 but still bad. The access road was under eight feet of water. We could not evacuate and remained at home for four days until the water receded.

June 2007 was traumatic as my Dad had to have emergency brain surgery and died five days later. A few weeks after that my sister was visiting from New York. Whenever she visited we put our cats in the cellar because she had a rescued Pit Bull who always wanted to eat cats. This arrangement worked successfully for eight years. Only this time my husband accidently opened the cellar door and my cat Ben came upstairs. In less than a second the dog was across the house trying to eat my cat. Somehow the cat was saved but was in terrible shape. After countless emergency hospital visits Ben's hind leg was amputated and he started to mend fast after that. A few weeks later we went to Tunbridge for the last time to pass papers on the camp. Although I didn't want to sell it, I knew neither my husband nor I could keep up with the maintenance on it.

In retrospect, I believe that the current Lyme infection really started during the 2006 Mother's Day floods. The ensuing traumas and prednisone doses probably encouraged the Lyme to multiply until I had full-blown disseminated Lyme Disease.

I also believe I may have had tick-borne illnesses dating back to 1991 when we had an abundance of ticks that spring. I found attached dog ticks on both my daughters and me. My PCP told me not to worry since they weren't Deer ticks. Within a year I was diagnosed with Fibromyalgia. In Septmember of 1998 I came down with a strange virus after a weekend at our camp. I had a very sore throat and a fever of 104, which was high for me. A few weeks after the virus went away I started having weird symptoms. My resting heart rate was 150 and I just didn't feel right. I was dizzy or lightheaded, my eyes hurt and I had unbelievable heart palpitations.

I was diagnosed with subacute thyroiditis but my PCP didn't want to do anything about it even though I was severely hyperthyroid. I finally went to an endocrinologist but by then I was hypothyroid and had to go on thyroid medication. A few months later I developed tinnitis. Between 1992 and 2005 I had many episodes of neck spasms. I have had lower back problems for most of my life so I can never be sure if my back pain is anatomical or caused by Lyme Disease.

Annie, New Hampshire

Living on Prayer and Team Work--Jessica Sundeen

2011-07-01T01:00:00.000-07:00

My name is Jessica Sundeen. I am 29 years old and a single mom of three wonderful children. I've been suffering from Lyme Disease and Bartonella for almost nine years.

I was finally diagnosed in September 2007 after seeing numerous doctors, neurologists, chiropractors, physical and massage therapists, and several E.R. visits. Through all of these consultations, I was prescribed numerous medications that were harmful and unnecessary, and was diagnosed with many disorders that were not valid.

I moved to Grand Rapids in August '07, and I couldn't bear the symptoms anymore. I couldn't get out of bed. I couldn't get on the floor to change my son's diaper. I knew I had to take care of my children, so I worked full-time as a Pharmacy Technician. I finally got the answer to my problems in September, though I didn't know what the future was going to be like. I thought I could just take the antibiotics and be cured. I was wrong.

The last years have been a nightmare. I'm still scared of the unknown. I've had numerous doctor visits, spinal taps, blood patches, blood work, brain images, trips to the E.R. and operating room, hospitalizations, PIC lines and Hickman ports. I've had comas, stroke, dementia, terrible fatigue, seizures, tremors, heart palpitations, Bell's Palsy, joint pain, muscle pain, tremors, migraines, elevated temperature, neck pain, back pain, tingling, numbness, stabbing pains, anxiety, buzzing in my ears, vertigo, ear pain, and fainting.

I have difficulty thinking, and issues with absorbing new information. I get lost all the time. I have word block and mood swings. It hurts to sleep. My liver, kidneys, and bladder shut down, and my lungs are depleted. I've been through the removal of my gall bladder, and I've been through malpractice. I have sensitive skin, broken capillaries, inflammation and nausea. I take two IVs a day and around 25 medications a day. In March of 2010 I was back in a wheel chair. My kidneys, liver and GI tract aren't doing well. We changed ABX IVs and other oral meds and and it's taking everything out of me. These are all the things I go through because of getting bitten by a deer tick.

I have been denied treatment by Duluth, Mayo, and other hospitals and clinics. I've had four doctors quit on me because they knew they couldn't help the stage of Lyme I have. For treatment I travel 900 miles round trip to see a Lyme Literate Doctor who can help me.

That has given me hope.

I never thought I would make it this far. What keeps me here each day is the power of prayer, keeping the Lord with me, looking at my children, being stubborn, determined and strong, and having a wonderful support system.

Unfortunately, in March of 2010, my 8-year-old daughter Jaiden was diagnosed with Lyme. I'm thankful that because of my knowledge of Lyme I argued with the doctor to get her tested through IGeneX, and that I know she has Lyme. He said, "It's most likely growing pains." Well, I proved him wrong. He is a wonderful pediatrician, but that goes to show you that the medical field has little knowledge of this disease. She will be doing ABX for an estimate of one year. She's been herxing and having a hard time. She's in lots of pain, but she's a tough girl.

In March I was put into a wheel chair due to my organs shutting down, tremors, seizures, passing out, weakness, and pain.

I'm thankful that my 10, 8, and 4-year-old understand and work as a team for our family to get through each day. We live on prayer and team work, and live each day like it's the last.

I'm now working very part time as an end of life nurse. I have deep compassion for my patients. Because I've been mistreated many times by medical personnel, I give my patients the love, listening, and understanding they need. My patients and their families tell me I'm a favorite!

Please keep my children and me in your prayers. I'm sharing my story not to get pity but to raise awareness. God bless you and your families.

Jessica Sundeen, Minnesota

I Will Not Be Forever Broken--Alyssa Knapp

2011-06-27T01:00:00.000-07:00

I started typing this many times but usually ended up deleting after the first few sentences. I have a hard time opening up and sharing my story, so please be kind if I make a few mistakes. I am 35 and I have Lyme.

I've always known something was a bit off. Through my twenties I struggled with many emotional difficulties--my emotions were all over the place. I figured I was just young. I had always been told I was over-emotional and too sensitive. I drank too much at times because I couldn’t keep my head clear. I did things that never settled well with me and seemed out of character, but I couldn’t remember who I was exactly. I was slowly losing touch with me.

In my late twenties the migraines began--blinding, pulsating migraines. So I started taking pills to help with the pain. The allergy problems started to creep in, and they gave me more pills for that. There was a bad bout of knee pain and I was sent to the orthopedist. They couldn’t find anything, so gave me some steroids and suggested exploratory surgery. I declined. It finally went away. My knees would grind when I walked up the stairs; I would get tired after putting in too many work hours. I figured I was getting older. I was slowing down--at 29.

At 31, things started happening fast. There were days I would cry for no reason. I called the doctor and asked if my tear ducts could be broken. She laughed and said I was suffering from depression. After repeated attempts to explain that I was not depressed, that something was wrong, she handed me a scrip for an anti-depressant. I didn’t take that.

I went on a date and thought to myself, “I am all tingly and dizzy. I must really like this guy.” We went out a few more times. One night after a drink I was walking down the path and my legs crumpled beneath me. I shrugged it off, thinking maybe I had just tripped on something. The allergies were getting worse, the doctor visits more frequent. I was coming apart at the seams and my doctor wouldn’t listen. My mother knew something was wrong.

Then the petit seizures started. I didn’t fall to the floor and shake--no--that would have been recognizable. I got a strange sensation through my body and the world started going gray. My hands would tremble and I couldn't speak. I could hear people calling my name but I couldn’t respond. I would come out of it and gasp for air and heave giant sobs, begging my mother to help me. She went with me to the doctors, again. Are you depressed? Pregnant perhaps?

Mom stepped in and they referred me to a neurologist. In the meantime I was losing my strength. I needed my mother to help me walk to the car; my right leg was dragging, my hands were curled in fists that I couldn’t open. My vision was declining daily, I was hunched and unable to sit up, I had sharp electrical pains shooting down my legs. The simplest tasks of washing my hair or pouring a drink were unmanageable. I had difficulty chewing and swallowing my food, to the point that sometimes I would have to take the food back out of my mouth so I wouldn’t choke. My body was shutting down.

My neurologist order an MRI and a spinal tap, ASAP. Someone finally was taking this seriously! He recoginzed that my slurred speech, gray skin tone, and extreme muscle weakness were problems. I slowly and painfully got through the test. The nerves along my spine had swelled out around my spinal column, making my spinal tap dangerous and painful. He called within two hours of the tap. I needed to come back to his office right away.

The MRI result was in, too, and showed multiple white spots on my brain. My cerebral spinal fluid had a very high white cell count. The next day my life was changed forever. I was diagnosed with Late Stage Central Nervous System Lyme with Brain Infection (Meningits/Encephalytis). I was relieved to have an answer--and my doctor was afraid for my life. There was nothing humorous when I said, "I feel my body dying." It was.

I was referred to an Infectious Disease doctor. I was told he was very good, “Head of the hospital.” He saw me right away, took one look at me and replied “There is no way Lyme can make you this sick. We need to test for HIV and various other diseases.” The blood was drawn, my IV was started, round the clock care was decided upon. Keep me home and comfortable with my family. The blood tests came back, and wouldn’t you know. Clean as a whistle! The good doctor shrugged, said one month of IV antibiotics would cure me and that I would just be sick for a few years. There was nothing they could do.

We found my LLMD days later. I spent 2 ½ years being treated for Lyme, Bartonella, Babesia, and Ehrichliosis. It has been a long, torturous journey, and I do believe that hell lives right here on earth with us.

Today, I have been antibiotic-free for six months. I still get sick. I still have some funky days. I have my life though, and I have found new friends to replace the ones that walked away from me. I have my family and my sense of humor. I can walk, talk and work from home. I still have to pace myself but I am working on that. I go to physical therapy for full body reconditioning, and I am getting stronger. I talk to a therapist who gently guides me away from my fear of death and illness, who helps me understand that I will not be forever broken, and that I will get to live and maybe even love again. I am learning to forgive myself and my body.

Alyssa Knapp, New York

Happy to Be Living Again--Heather Levine

2011-06-24T01:00:00.000-07:00

Looking back, I think I’ve had Lyme my entire life. On and off during my high school days I suffered from major depression and depersonalization, but never knew that was a symptom of Lyme. I am honored to share with other Lymies my story, my experience, the valuable information I discovered on a daily basis, and my recovery. I currently have almost no symptoms and am happy to be living again.

I attribute my success to God, my friends in the Lyme community, and Perry Fields. I want to encourage as many Lymies as possible, and let you know that you are not alone, and we are in this together.

When I was younger my family bounced around between New York City and Connecticut. I went into the woods all the time as a little girl, but I don’t remember ever getting bitten by a tick. I loved the outdoors. The weird part for me was that I had no physical symptoms.

When I was about twelve we finally moved back into New York City. During my teen years I suffered from major depression and anxiety. Everyone in my family felt it was abnormal for a girl of fifteen to be so anxious all the time. I later developed an onset of depersonalization for about a year and then it went away. Depersonalization is really scary. You’re completely detached from the world emotionally and feel as if you are on another planet, or possessed. But the strange part about that--looking back--is that it went away all of a sudden.

Later I attended college in Pennsylvania. I struggled with some bad times of severe depression, but like most Lymies I was bounced around from therapist to therapist. Seeing a therapist actually became a normal occurrence for me. I attributed it to being from Manhattan. Seems like everyone in New York has a lawyer and a therapist!

I think my life took a turn for the worse when I started law school. It wasn’t so much the curriculum, but the stress. I was living in Miami at the time, and doctors were baffled by my symptoms. I remember getting really bad headaches. I once passed out in a car dealership. I was holding my head and asking to be rushed to a hospital. As usual the tests came out fine.

They put me on all sorts of medicine for my headaches and depression. Later, towards the end of law school, my symptoms got really bad. I remember overnight the severe depression turning into immense anxiety. It was horrendous. I walked into work and I knew something was wrong. I was scared of people; sounds became too loud and knew I had to take some time off work.

That time off was horrible. My anxiety got worse and worse. I started staying in my house for weeks on end. Weeks turned into months. I ordered several tapes from Lucinda Basset and walked around the city saying to myself, “I am fine,” “I am good,” “I am special,” but that didn’t work. I knew how hard it would be to get out of this. That summer I tried to take the bar exam but I was so anxiety-ridden that I couldn’t even leave the house. I soon became addicted to Xanax, and my doctor prescribed it like it was candy. I needed it every second. I couldn’t live without it. Later that summer, my anxiety turned into depersonalization. I wasn’t sure if the depersonalization was a way my body protected itself from immense anxiety, but I knew I needed help.

I struggled with addiction to Xanax and knew I couldn’t be alone. I didn’t trust myself and what I was going through. Life became completely unmanageable. I walked around the city feeling like I was in a dimension beyond this dimension. I couldn’t feel anything and I was emotionally numb. The world as I knew it was gone. I felt like I was away from the world, in another dimension, and couldn’t go back.

Soon my depersonalization turned into derealization. This was more of a visual problem. Again, doctor after doctor kept giving me pills and said that I was just depressed. I went to the top psychiatrist saying, “Please help me, I can’t feel anything. Doctor, I can’t even feel this chair.” He gave me pills and told me it would get better if I just started dating. I stared at the pills, and later because of my addiction I knew I had to flush them down the toilet. There had to be another way. After much prayer, God put an angel in my life. She said it sounded like I had Lyme. I kept telling her that I felt like I was “high” all the time--almost like I just smoked marijuana or was drunk, and I hated drugs. I was such a lightweight in college. I just wanted to be back in the world. “Please God, please help me.” Later that year I had a Lyme test and it came out positive.

I took a test that showed how damaged my cognitive skills were. I couldn’t add or subtract numbers anymore. I thought this was crazy because I was a math geek in college! I cried during that entire session when the doctor asked me questions. I think I even stopped the test because my heart was so broken. What was I to do? Here I was, having graduated law school, and I couldn’t even read or add simple math. It was devastating. How was I going to pay back loans? That walk back to my friend’s apartment/couch was the longest walk home. I walked through the park and looked around at all the Manhattan mothers playing with their children. Was I even living? I sat on a bench with my head in my hands and sobbed. This was a normal day in my "groundhog's day" life.

On July 1, 2009, I sat in the doctor’s office getting my antibiotics, and I started telling the doctor I was relapsing again. I told him about horrible brain fog, derealization, heart palpitations, hotness in the back of my neck, hot and cold sweats, tingling in my hands and feet, migraines and exhaustion. He said this was normal, and then the nurses came into the room to take my blood. They were laughing and talking about what they were going to do for July 4th.

Tears welled up because I couldn't remember the last time I went out with friends or had a life, for that matter. They were also laughing at me because my veins were too small and it was hard to inject me with a needle.

That drive home from the doctor's office was the worst day of my life. The words from my doctor that “I might have this for the rest of my life” made me want to drive my car off the road. If he knew how I felt he wouldn’t want to live either. Thankfully, I was able to drive that day because my family was tired of taking me to doctors, and tired of my being sick.

A couple of weeks later was my birthday. I was broke--really broke. I knew it would take a lot of money to get me out of this. I sat in my room alone on my birthday, with no friends. Just me and a candle. I sat there holding the candle, praying to God to give me money for treatments, to give me hope, and to be there for me through all this.

After I blew out the candle, I ran to my computer and bought myself my first birthday gift, an infrared sauna from Promolife. It was perfect because it rolls up like a blanket, and here I was sitting on my friend's couch. As I clicked the button to pay, I had one eye open and was shaking. "Okay I can do this. I’ll just pay it off when I’m better." It’s funny, but I have been saying this with each treatment, and have actually been able to pay it off six months later! The power of God is amazing!

That day I knew I had no choice but to seek help and get on the right track. I started talking to Perry Fields and seeing alternative healers. Going off antibiotics was scary for me. I won’t lie. It wasn’t an easy task, but I just said, “I’m dying anyway. What difference does it make? Let me try this for six months.”

Every day for six months now I have pretty much been my own doctor. I get up and have a routine. Routines are SO important with this. It was important for me to just keep going. Even though some days I had setbacks, I prayed that what I was doing was right for my body.

Every day for the past seven months I've taken vitamins in the morning, minerals and aloe. I incorporated vitamin C IV drips, ozone water (sometimes I would drink this with my vitamins), Biofeedback machines, Salt C protocol and many others, including a parasite cleanse.

I can’t believe I'm living again. I have dreamed of this for four years. Lyme has manifested itself in me in some pretty weird ways, but I know everything happens for a reason. It’s strange, but I almost don’t want to take back my Lyme. I’m so grateful today, and hope my story will bring hope to people when life seems hopeless. My dream is to have a rehabilitation center for people with Lyme, to open up a spa or rehabilitation center--a place for Lymies to call home. It was everything I wanted when I was sick and alone and my family couldn’t understand this disease at all.

I found comfort during those bad days by talking to other Lymies. I’m crying as I write this because it was so awful. Please remember no matter how bad it gets, there IS hope. You guys are my family. You have saved me, and I wouldn’t be here today without the help from the Lyme community. God Bless You all!

Heather Levine, California

It's All In Your Head--Ashley Bouck

2011-06-21T01:00:00.000-07:00

I was asked to write my story of Lyme, but I really don't know where to start. Do I start the first time I was bitten by a tick, at age 10? Or do I begin when I first started to get symptoms at age 25? I think I will begin at 25; that will be easier for my Lyme brain to remember. Here’s the short version of a very long story.

One of the weirdest of my symptoms is my total inability to regulate my body heat. It can be freezing outside and I’m sweating, and it can be a tropical day, and I’m freezing. One of the first things I consciously noticed was my body heat dilemma. I vividly remember lying in my bed, when I lived in Spokane, in the middle of summer, freezing. Now, if you’ve never been to Spokane, you know it gets mighty hot there in the summer. It’s a temperate Ponderosa pine desert, for lack of a better description.

On this particular day, it was about zero humidity and about 95 degrees F out. I was lying face down on my bed, with a sheet, two blankets and a comforter over me; my arms pulled in to my chest, and my trusty cat, George, lying on my back. I think he always knew something was wrong; after all, we were two of a kind. He had the feline version of HIV and I had taken care of him for years. My sick kitty was now worried about his sick human, curled perfectly where I needed him to keep me warm. I was shivering, so cold it hurt, in 95 degree weather. I knew something was wrong, really wrong, but according to the doctors, nothing was wrong with me. How can nothing be wrong when I’m freezing and it’s Africa hot out? Preceding the chills were severe hot flashes, lasting hours, and making me so nauseous I would sometimes vomit. I knew if I got hot, the cold would follow. I still get these episodes. I told doctor after doctor that something was wrong, and was brushed off. One even laughed in my face and called all the nurses over to laugh at the 25-year-old going through menopause.

So, I gave up. I didn’t go back to the doctor for two more years. My symptoms got worse. I was tired and dizzy. Hot, cold, nauseous, dry skin, itchy and sick all the time. I had had unsafe sex when I was younger, and HIV came to mind. Crap. I got tested--negative. "Are you sure? Test again." Negative. What the hell is wrong with me? One person gets the sniffles around me and I’m sick for a week! I’m so tired, I hurt, what is wrong with me? I can’t concentrate, can’t think, so tired, so tired. Ignore it! There’s nothing wrong with you! It’s all in your head! Don’t go to the doctors, they’ll just laugh at you, tell you you’re a freak. It’s all in your head, there’s nothing wrong with you.

I went through Forestry college with undiagnosed and untreated Lyme disease. When I started, I maintained honor roll. For three years, my grades didn’t drop below a 3.5 (4.0 is the highest you can get). Then, late junior year, I crashed. The Lyme caught up, only I didn’t know what it was. Nothing was wrong with me. I was in so much pain. Muscle pain, joint pain, my skin burned or froze, neither one was very pleasant. I was so tired, and my ADD got so bad that I couldn’t think of one thing at a time. It was like an angry mob was screaming in my head. So many voices! My grades dropped to a 1.8. 1.8! I’d never gotten a D in my life! Now, D was my average. I was flunking out of college, and I was almost done. I couldn’t let this happen! I needed a 2.0 to graduate. I did it, barely, with help from every dang teacher and counselor I could get help from. The day I got my degree, I had a 2.01 GPA. Crap grade, but it was passing, and I was dying. Always sick, always tired. I trudged on. Because nothing was wrong with me.

I graduated with a degree in Forest Resources, and went to work. Great job, very physical. I was in pain all the time. I worked through it. So tired. So painful. My co-workers would go out after work, and it was all I could do to drive home after work and not crash the car. They stopped asking me to go. I couldn’t. If I wanted to go out, it had to be on Saturday night, and I couldn’t do anything Saturday. If I wanted the energy, I had to store it up. If I went out, I didn’t even get dressed until a few hours before I left. If I did, I would end up doing something else and not have the strength to go out that night, and I would have to say I couldn’t go…again.

Long story short, I went to Wisconsin to participate in the AIDS Walk there with my friends Bob and Teresa in 2009. They introduced me to their friend Della. Della saved my life. During the walk I was in pain, and dizzy. I was so dizzy I held on to Teresa so I could continue walking. I felt like an idiot. There’s nothing wrong with me! Afterwards, we went to lunch and I was rubbing my legs when Della asked what was wrong. So I told her. My legs were on fire. They felt like boiling hot water had been poured over them, and they hurt. Rubbing them helped. Della gave me a couple pamphlets on Lyme and made me promise to get tested. Della has Lyme disease and recognized one of her own.

When I got home, I went to the doctor and did the lab tests. $700 worth of blood tests, which aren’t covered under any insurance. Not that I have insurance anyway. The doctor called me in and said the lab tests confirmed her prognosis. I had “glaring” Lyme disease. Old antibodies, new antibodies and almost every symptom on the charts. I was off the charts. How was I still alive? I’m healthy…except for the Lyme. That’s the only thing that kept me alive. Parents who taught me to eat right and pay attention to my body, my drive to keep pushing no matter what, and a physically demanding job--those kept me alive. The same vocation that probably gave me Lyme saved me by forcing me to be healthy. I love my job and will keep doing it.

So now, I take up to 18 pills a day, plus anti-inflammatories when needed. I take a liquid multi-vitamin because the pills make me even more nauseous than I already am. I am on a gluten free, high fructose corn syrup free, sugar free, soy free diet. I shouldn’t eat soft fruit or drink fruit juice either, because of the sugar content, so I don’t. I can eat meat, fish, eggs, dairy, green veggies, avocados, tomatoes, brown rice, nuts and quinoa. I’ve gotten very inventive with my food; I’ve learned a whole new world of cooking. Most things that are pre-made have something in them that I can’t eat, so I HAVE to cook. I don’t have a choice.

I will have Lyme forever. I don’t have the kind that can be cured; it’s in my tissues and my blood--it’s in everything. If I have children, it will pass on to them, so I have made the decision that I will not have children. I may be able to pass Lyme to my partners. I will tell my partners that the evidence of Lyme being an STI is inconclusive, so that my partners can make up their own mind about it. I will tell my story to anyone who will listen, and the story of Lyme. I founded a non-profit to help fund my speaking. My first venue is at the University of Washington to my fellow Forestry Students. I will fight, I will survive and I will live because a tiny bacterial spirochete, in its quest to make me weak, has made me strong.

Ashley Bouck, Washington

A Laundry List of Symptoms--Kim Trick

2011-06-17T01:00:00.000-07:00

Hi, my name is Kim. I’m a 27 year old Christian woman living in New York City with a heart for hurting people and a love of whole, natural, healing foods.

For most of my life I suffered from a laundry list of ever-changing and ever-increasing symptoms that kept me constantly feeling under the weather. I experienced extreme exhaustion, constant muscle and joint pains, chest pain, severe headaches, rashes and hives, chemical sensitivities, frequent sinus, kidney, and bladder infections, digestive issues, anxiety and panic attacks, sleep disturbances, and eventually tremors, drooping eyelids, memory loss, and problems with word recognition, among other symptoms. At best I felt “not so well” and at worst I felt downright miserable.

I spent years trying to find an answer as to why I was feeling so ill all the time. I was diagnosed with food allergies, irritable bowel syndrome, fibromyalgia, Chronic Fatigue Syndrome, arthritis, anxiety, chronic migraines, endometriosis, and several other conditions. It was overwhelming. How could one young girl have all of these issues and still be told “there’s nothing wrong?” I now know these were symptoms of the real illness I was fighting.

After graduating from college, my health began to plummet quickly. I didn’t have health insurance, but I couldn’t afford to stop looking for an answer. Most of the doctors I saw knew something was wrong, but they had no idea what was causing the constantly changing symptoms I was experiencing. I began paying out of pocket for visits and tests, going so far as to pay for an operation in late 2006 to treat a tissue disorder I’d developed from a weakened immune system. All of this added up to major medical bills but no real answers.

In January of 2008 I was finally diagnosed with late stage Lyme Disease and its coinfections Bartonella and Babesiosis, with the possibility of Erlichea hanging around on the side. These systemic and chronic infections were the cause of all my previously unexplained symptoms. Who knew a brush with a cute deer during my days as a kid in rural Ohio could lead to such pain? I quickly learned that Lyme is a tick-borne bacterial infection that, if not caught early, often becomes a systemic and chronic illness attacking multiple organs and eventually working its way into the neurological system. To make matters worse, the medical community is still learning about this disease, and it is often very difficult to diagnose by standard tests. As a result, many people suffer with misdiagnosis and pain for years just as I had. In my case, Lyme was the catalyst that set many of the other imbalances in my health into action and caused me to feel ill for all those years.

Getting my diagnosis of Lyme Disease and the coinfections was one of the greatest things that ever happened to me. I finally knew what kind of opponent I was up against. From early 2008 through early 2010 I channeled most of my time, energy, and resources into overcoming the infections and bringing my body back to health with a fantastic Lyme Literate Medical Doctor (LLMD) and a team of great physicians, physical therapists, friends, and family members.

While it hasn’t always been an easy journey towards health (at times it’s been downright hard, scary, and expensive!), it’s been an incredibly rewarding one. I quickly learned that with a systemic illness like Lyme, beating the infection would only be half the battle. If I didn’t make some big, sweeping changes to make sure that I was eating right, sleeping right, living right, and thinking right, all the medicine in the world couldn’t put me back together again. Working towards wellness meant that I would need to reevaluate my priorities and learn to simplify, slow down, and live with less to value what’s truly important in life, and I’m grateful for these changes in my life.

In January of 2010, after two years of aggressive antibiotic therapy combined with vitamins, supplements, lots of PRAYER, and healthy living, I hit “remission” and am feeling better than I’ve ever felt in my life. I’m incredibly grateful to be where I am today, and I’m excited for what the future holds. I feel like I have a new lease on life, and I want to make this one count for all it’s worth.

Kim Trick, New York

Never Give Up--Carisa Gorak

2011-06-14T01:00:00.000-07:00

I’ve had Lyme Disease since I was eighteen years of age. I went undiagnosed until 2007. That is fifteen years of being undiagnosed! I now have Chronic Lyme Disease and I am totally disabled because of this disease and I am 36 years old. I am a mother of three and married to a wonderful man. (He knew I was sick when he married me.) We live in Wabasha, Minnesota. For those of you who do not know where Wabasha is, it is about two hours south of the Twin Cities. (Wabasha is also known for the movies "Grumpy Old Men" and "Grumpier Old Men.")

Most people know me as @MNTwilightMom on Twitter.

The Month of May was Lyme Awareness Month. "Paint May Green." This month is important to so many Lyme sufferers out there. This is how we speak about our illness. We don’t speak out to gain attention or gain sympathy because we don’t want that. Honestly, we don’t want your sympathy; we want to share our stories with you. We want to teach you how to be safe outside. Lyme Disease is REAL! This Disease DOES EXIST. It affects thousands of lives everyday.

We the people who suffer from Lyme Disease love the month of May, because this is the month that we can scream and shout, share the “good” with the “bad.” This is our time!

My story started back in 2002 when I woke up one morning and I could not move. I had such pain radiating through my body that I could not move off my bed. I realized within a few minutes that I could not feel my left leg; it tingled all the way down to my toes as if it were asleep. This was very strange. I went to sleep the night before just fine without pain. Why did I wake up this way? What the heck happened while I was sleeping? The only good thing about this whole situation is that this day was my day off. I managed to crawl out of bed and slither my way to the bathtub and run some very hot water, thinking that this might help. Somehow, I managed to get myself into the tub and lie in the hot water until I could at least feel my leg again. I could not even tell you how long that was.

I ended up calling my family doctor to see if I could get in to see him, because this was not normal. I couldn't explain to the nurse what was happening. I was able to get in to see him and all the normal tests were done: X-rays, MRI, CT-Scan, blood work, and the normal look over, push, poke, does this hurt, tell me what happened, stretch this way, and stretch that way. I figured something would show up, but everything came back normal. I sat there and cried. My doctor did believe me that I was in pain, so he gave me pills to help with the pain and inflammation. Great, but it did not help; I was back in his office within a week.

This went on for the next four years, seeing other doctors and specialists, being sent by specialists to other specialists, being sent to hospital after hospital. I live in Minnesota, so I even went to some of the "best hospitals" in the world. I traveled across state lines and saw their specialists and they sent me to their specialists. I can guarantee that I saw 200+ doctors in four years.

I was told many things by many doctors. Many specialists said I had the following: MS, lupus, Lou Gehrig's Disease, cancer of the liver and lungs, kidney failure, possible tumor in my brain, Bi-Poplar, CFS, fibromyalgia, CRPS, dementia, early stages of Alzheimer’s, restless leg syndrome, rheumatoid arthritis, and my list goes on. I never knew if I was dying or living.

On top of being told I had all these diseases or disorders, I was also told by a variety of doctors and specialists that I was, "faking it," "wanting attention," "trying to get sympathy because I was a single mom with two kids," "wanting to use our welfare system, like all the other dead beats." I was even told, "You're just fine, go out and find a man, get married and live life." But this one is my favorite. “You’re a very pretty woman, STOP feeling sorry for yourself, go out, exercise, go out with your girlfriends, drink, be happy, because NOTHING IS WRONG WITH YOU!"

I was at a certain hospital waiting for hours to see a "specialist," (he was supposed to the best in the world) and my appointment was at 8:00. I finally got in around 12:00 pm to see him. When I walked into his office, he looked at me, looked at my chart and said, "You are fine, your tests are fine, stop faking, you're healthy as a horse! You look great. I wish I looked as great as you, so leave my office so I can see some people who are really sick and really need my help, because you are NOT one of them!" He got up from his chair, opened up his office door and left me sitting there by myself. His nurse came in and said, "Ok you are done now, you must leave!" (This happened at our famous #1 hospital in MN.) It cost me $12.00 to park there and this is what I got for my whole day there....NOTHING!

After that wonderful visit, I became depressed and started to doubt myself. I stopped seeing doctors and specialists for about one year. I thought, "Maybe I was imagining all these symptoms, all my pain, maybe I'm making myself sick!" But within that year, I became worse. My pain never went away, my symptoms never went away, and I became very sick.

Than one day it hit me. I realized that I needed to find someone, somebody to believe me, and I needed to find someone fast or I was going to die. I thought and felt like I was going to die. What would happen to my kids? Where would they go? If not for me, then I have to do it for my kids. So once again, my journey started to find that miracle doctor who would listen to me and hear me. That is all I wanted. Was that too much to ask?

As it is said, "A miracle will happen when you least expect it!" I happened to be watching a television show that evening. It was "Mystery Diagnosis." Having watched it in the past, I knew what it was about, but this one was a new show. This show saved my life and opened doors for me--it was on Lyme Disease. They had a story about a young girl who could have been me! I started to cry (I hardly cry at TV shows). This young girl had everything I had. It was as if I stood at a looking glass and saw myself through it, but it was on TV.

I live in Minnesota, and ticks are everywhere. How dumb can I be? Is it really that easy? Why hadn't all those "DUCS" (doctors and specialists) thought about Lyme disease? They are not much better than me, for not thinking of doing a Lyme test. I cried through that whole story; it was a turning point for me! A door opened up and said, "Walk in, this is your time."

I called my doctor the very next morning, but I could not get in until the end of the week. That whole week I was the happiest I had been in four years, thinking, "This is going to be easy. Go in, get the blood test done, get the results back, get medication and I’m cured."

Boy was I fooled! When I went in to my appointment and told my doctor what I saw on TV and what I wanted him to test me for, he basically laughed right in my face. I could not believe it. One minute I am on Cloud Nine; the next I am right back were I started. After about 30 minutes of being in his office and refusing to leave until he performed the Lyme test, he agreed to do it. But to my disbelief, it came back negative. I was in total shock. I didn't understand. How could that be? I had all the symptoms and signs of having Lyme disease. How can this one simple blood test come back NEGATIVE? My doctor looked at me and said, "I told you it was a waste of time!” I walked out of his office and cried all the way home.

I called his nurse back and asked for a repeat test; my doctor would not do another one for another two weeks. I was so angry I hung up the phone and cried. I was just shattered. I had thought that this was my answer to everything. I ended up having eight Lyme Disease tests done and they all came back NEGATIVE.

That’s when I started my own battle. My battle against doctors and specialists. If they are not going to help, I’m going to help myself. The hell with them!

That was the day I started my own search for an LLMD (Lyme Literate Medical Doctor) and my own Lyme Disease database. I wanted to know everything about this disease. So, when I went back for another blood test, I had all my ducks in order and I had facts in hand. I was going to be prepared this time and I was not going to take any crap from anybody. Especially from a doctor or a specialist who thought he knew more than I did. I didn't care how long he went to school for, or how much he thought he knew. It didn't matter, because I was going to have proof that I had this disease and he was going to listen. I wasn’t going to leave anyone’s office until he did what I wanted.

Well, let's just say that all my research, papers in hand, documented proof that I showed these DUCS, and check-off list of symptoms did not un-nerve them or affect their decision at all. I still couldn’t find a DUC who would test me again for Lyme disease or even believe I had it. These DUCS were stubborn ones and I was getting nowhere with them. I fought so hard for so many years that my skin was getting tougher. I was learning how to fight harder and I wasn’t fighting nice, anymore. If I didn’t succeed with one DUC I went to another and another. I did this for about another six months until I found an Angel.

About two months after seeing that last DUC, I ran into an old neighbor who told me about a doctor that she works for who is a "DO" (Doctor of Osteopathic Medicine). She told me to give him a try; he does treat a couple Lyme patients, and maybe he can help me. He is really good, she stated. After all this time, I had my doubts about all DUCS but, hell, what did I have to lose? Nothing.

I made an appointment to go see this DUC and my first appointment was three hours long, WOW! I was impressed…so far. He took notes, listened, and even took my research papers that I brought in with me on Lyme disease. It explained why I knew I had Lyme disease; by this time I knew I had Chronic Lyme Disease. It had been four and a half years since my first symptoms appeared, and I was on no medications except pain meds.

By this time, it was about the middle of April, 2007. I re-married in October of 2005, to a great guy who married me regardless of my unknown illness. (Even though we both knew what I had.) I have two children; he has one, so together we have three. We moved, bought a house and I was finally on the right path with the right doctor (he is not a DUC, he is my Angel!) and hopefully we could start getting the answers to what we already knew.

My new doctor tested me for Lyme disease in June of 2007 and sent the lab tests to IGeneX. They came back POSITIVE. They were so positive that the doctor had never seen such high numbers on a Lyme Test. I know that doesn't sound good, but I was so happy, I cried. I don’t mean a soft cry--I cried hard. Not that the test was positive, but that my fight was over. I'd been fighting for four and a half years, and my five-year mark was coming up for a diagnosis. Doctors and specialists telling me I'm crazy, me thinking I'm crazy, family members thinking I'm just making things up, others looking at me and thinking, "What's wrong with her, she looks fine. She doesn't look sick!"

I am sick! I may look fine, but I am NOT. And it’s NOT IN MY HEAD!

They started treatment in August of 2007 with a Pic-Line, but that only lasted until November because of blood clots, and then they inserted a port within the right side of my chest.

I have been on five different kinds of IV medications because my body has built up immunity to the medications and they stopped working. I have to be on a nausea medication because the IV medication makes me so sick that I cannot keep food down. I do IV meds five days a week for two and a half hours a week.

Within the last three months, I have noticed my hair is falling out; I have had cysts removed from both of my eyes twice now. Lyme Disease has been gracious enough to affect my body in all ways possible--my speech, train of thought, remembering, standing, walking, working inside or outside the home, normal day-to-day duties (housework), and these are just a few.

My LLMD thought I might have a Co-Infection, maybe two, and the test came back positive. This just means that I get sick more easily and my immune system is completely shot. Lyme disease has turned into Full Chronic Lyme Disease with Neuro Lyme Disease. This means I now have slight brain damage that affects certain areas of my brain. Last winter I needed a cane to help me walk because I couldn’t walk by myself. Thirty-five years old and walking with a cane. That killed me when I had to use it for the first time; I cried the entire time.

My disability finally went through this February. I had to hire an attorney last fall to help me fight. I could not take my case any farther without one. When I went to court for my final hearing to hear if the judge decided for me or against me, the judge said this is the worst case of Lyme Disease he has ever seen in his six years of doing disability cases. He hopes that soon there's a cure, or our doctors wake up and realize this disease is real and affecting our young and old people. He apologized for the suffering I had to endure and the fight I had to go through just to get diagnosed. He said, "That shouldn't happen in the 20th Century with today's medicine and research!" Inside I was jumping up and down.

Update: As of today, May 2, 2010 I am on no medications. My body rejected the last medications I was on because of an illness I had about a month ago. My doctor and I are working to come up with a new medication plan for me. I’ve been without Lyme Disease medication for about a month now and it’s been a long road. My mornings are rough and my nights are rougher. The pain varies with the weather, on how cold or how warm it is. I go in to see my doctor every month for checkups and every six months to have my lungs and kidneys checked, and have MRI’s and a CT-Scan done to make sure everything is still in working order.

Remember, do not ever give up!

Carisa Gorak, Minnesota

A Work In Progress--Renee Dahlen

2011-06-10T04:00:00.000-07:00

Sometime in 1984 I woke up one morning with an engorged tick attached to my chest. We were living on an acreage in central Minnesota at the time. Our home was surrounded by woods and a meadow--a haven for ticks. But Lyme was not on our radar, so my husband just removed the tick without a second thought. I developed an infection and redness in the area, but we just used alcohol to treat it. Unfortunately, that tick gave me Lyme Disease, and the co-infections Ehrlichia, Bartonella, and Babesiosis. It was one nasty tick. We had no clue that I had Lyme. It went undiagnosed for 23 years.

In 1985 I began to have major symptoms of arthritis, intense pain, and fatigue. I was diagnosed with arthritis of the bone by a rheumatologist and put on anti-inflammatory drugs which I took for a short period of time. I was also put on thyroid medication for autoimmune thyroid disease. At this time I was also having episodes of internal shaking--not tremors--but my whole body shaking and vibrating inside only. It continues as one of my most persistent intense symptoms today, a neurological symptom that is common in Lyme sufferers.

Symptoms of pain, fatigue, weakness, reactions to some foods and certain chemicals, and internal shaking continued to wax and wane in intensity until March of 1991 when I came down with what felt like the flu,which never went away. I was mostly bedridden for 9 months with severe pain, exhaustion, heart symptoms, anxiety, weakness, flu symptoms, pain, stiffness, and more. I saw a local doctor who told my husband Joel that the blood tests proved there was nothing wrong with me--he actually wrote on my chart that I was “a menstruating female” and that was the cause of all my problems. I will not repeat what Joel told him.

We went to Mayo Clinic in July of that same year and the team of doctors I saw gave me conflicting reports. The rheumatologist told me I was extremely sick and to keep seeing a specialist because he felt it was just a matter of time before I would be diagnosed with Lupus. The internal medicine doctor wrote in my report that I had some kind of Chronic Fatigue Syndrome and if I would learn to manage my stress (according to him--my 7 children, foster daughter, and being a pastor’s wife) and get into therapy it would all go away. I went through a battery of tests, but I was never tested for Lyme.

I did go back home and go into therapy because I wanted to make sure I did everything possible to get well. The therapy was helpful, but after several weeks of therapy the therapist told me that I was “really sick” with a physical illness and not to give up trying to find the answer to my health problems. This was my first positive medical affirmation that I had a real disease.

After seeing a chiropractor for several months, I began working with a European trained doctor who practiced as a naturopath. For over 7 years she worked with me using homeopathy, herbs and vitamins, acupuncture, and allergy treatments, bringing my health levels back to about 50%.

Then in 1999 we moved to a beautiful home on the edge of a town in Iowa where the woods were only a few yards away. We had oak trees in our yard, and the deer, mice, and chipmunks loved the acorns. It was nature at its best while still living in town. Unfortunately, it is believed I was re-infected sometime in 2001 by another Lyme tick--more than likely brought in by one of the visitors that enjoyed our yard so much. Shortly after, my health took a nose dive, and I ended up homebound and bedridden a lot of the time. I became reactive to chemicals, wood smoke, molds, and more foods, and after discovering that the foundation of our home was constructed from treated wood which I was reacting to, we made the difficult decision to move from our dream house. We moved to our current home in the fall of 2004 and it is from here that I view life mostly in isolation, from my sofa sanctuary.

I need to add that last year my husband was diagnosed with Lyme Disease also. It is believed he was infected after we moved to our home with all the oak trees where I was re-infected. Not one doctor tested him for Lyme when he became so ill he had to stop working for a period of time. Mayo Clinic diagnosed him with Post-viral Syndrome and Sleep Apnea. He became so sick last year that he had to go on disability. Recently he has been able to work 15-20 hours a week IF he naps 2-4 hours a day and sleeps 8-9 hours at night. Treatment continues for him.

Over the years I saw neurologists, rheumatologists, internal medicine and infectious disease doctors, and cardiologists without much help. My health continued to spiral after my naturopath moved out east. By 2004 rest and isolation were my coping tools, but did not improve my level of function.

In 2006 a friend I had met through a newsletter I published was diagnosed with Lyme Disease. She had been getting treatment for CFS for nearly 20 years and was also homebound and very ill. When the specialist told her she believed she had undiagnosed Lyme, she saw a Lyme specialist in New York who diagnosed her with Lyme. She was sure that I also had Lyme. At first I did not believe her, but she and her husband did not give up on their quest to talk me into being tested. I put it off until March of 2007, when I woke up in the night with what I thought were insect stings all over my body. Thus began my journey with neuropathy--the most challenging symptom I have ever had to deal with. Along with finding air, touch, clothing, and high levels of stress causing burning, stinging, pins and needle feelings all over my body, I had a thirst I could not quench and dropped thirty pounds in a short time. This new medical crisis caused me great distress. With my emotional health at the breaking point I went to my local doctor for help. She told me there was nothing more she could do for me and I would just have to cope with the neuropathy. In hindsight, her response was a good thing. With my friend’s encouragement and my local doctor's dismissal, I shifted gears and began looking for a specialist who could help me.

My friend’s doctor in New York was willing to give me a list of Lyme Literate doctors who were within driving distance, and I ended up going to my current LLMD because she was so close and also treated people for CFS/ME and MCS. I did not expect her to find Lyme, I just desperately wanted help with the neuropathy. In May of 2007 Joel made a bed for me in the back of our van and I rode lying down to her office just three hours away. My first appointment with her took four hours. She examined me, went over all my history, and took 19 vials of blood. We received a thick pile of test results in the mail, and I can remember being shocked as I read my diagnosis: Late Stage Neurological Lyme Disease.

I began treatment in July of 2007. I have been on antibiotics for nearly three years now, and my progress has been a slow walk--a journey that I believe will take a very long time to complete. My hope is that the Lyme will eventually go into remission but due to my inability to take large doses of antibiotics, and my recent journey with Uterine Cancer that caused a huge setback, I know that the battle with Lyme is one I cannot conquer alone. I will continue to do what I can to improve, follow my doctor's advice, and hope for the best. I am practicing surrender on a daily basis, making an effort to live in the moment from my sofa sanctuary. Some days I succeed, others are not so good! I am a work in progress, BUT, no matter where I find myself on any given day, God is in the center of it and I can trust His plan for my life. A great hope-filled quote is, “Today is a new day--another opportunity for a miracle!"

Renee Dahlen, Iowa

Too Many Skeptics--Jim Strahan

2011-06-07T01:00:00.000-07:00

It could never happen to me, the picture of health and never in the hospital. At 6’2” and 190 Lbs., I had lots of exercise including hiking, biking, skiing, surfing, and traveling. My diet that was moderate with fish and meats balanced with fruits and vegetables. I ran my own company and lived in Palm Beach County Florida.

In the summer of 2006, my doctors at the VA (I’m a veteran) insisted on giving me statins to lower my cholesterol. Within 3 months my life went downhill seemingly overnight. I went from riding my bike 80 miles a week and walking five miles on the beach to a virtual coach potato. Unknown to me and to my VA doctors and private doctors, Lyme Disease had set in. Symptoms included sore muscles and joints and extreme fatigue. This wasn’t simply “sleepy” tired; this was bone tired, and at times it was even difficult to sit up straight. As if someone had drained most of my blood. It is both physical and mental fatigue.

It was not clear when I was infected. The bull’s eye never appeared. Very mild Lyme symptoms have been with me for many years. Could the statins have lowered my resistance to the bacteria and allowed them to take over? It is still a mystery.

To make things worse as far as a diagnosis, the symptoms would subside for 30 to 45 days then come back strong again. In 2007 I went to Maine for a week and hiked, went to fairs, and traveled the country side. Later that month I was a couch potato for over a month, not able to much more than cook, eat and rest.

Untreated for five years, the Lyme began to affect my nervous system. My speech, thought patterns, concentration, and memory were impacted. It caused joint pains, ringing in the ears, burning feet, and atrial fibrillation--two trips to the hospital. It became an extreme effort to go to the store, work on the computer, maintain friendships, or deal with any stress. A simple act of going to the store required resting in the store after the walk from the parking lot, resting on the cart during the shopping and resting at home for several hours after the trip. Working was limited as the mental disorientation made it difficult.

During times when my symptoms were strong, most of my time was spent lying down, not sleeping, but resting. This allowed the body to regain some of its strength and energy. During these periods the reality set in as to how much of my life I had lost. I became isolated from most of the world and lost contact with so many friends. They just didn’t understand how complex and comprehensive the illness is and how difficult it is to fight. It overtakes the whole of you. As of mid-2011, there are still many skeptics among family and friends and I try not to talk about my illness. It is a handicap that is not recognized as such. I wanted to get one of those handicap cards to hang from the mirror in my car but that would be admitting it’s permanent.

Physical and mental fatigue associated with muscle soreness and joint pain were the first symptoms. Confusion, lack of concentration, and the inability to deal with stress came later. Most of my family and friends thought it was a mental disorder. The fluctuating periods of mild symptoms and strong symptoms led family to believe that it was a bipolar problem. At the insistence of family and a family doctor, I went on anti-depressants for eight months with no impact. They either believed I’m nuts or just couldn’t accept it; either way they were of little comfort.

Dealing with the pain, mental and physical fatigue, and all the other symptoms was very difficult. The mental pain from the fatigue and the loss of your life’s activities has to be the hardest to deal with. Going through those issues alone while your whole world thinks you are insane is the most extreme situation a person can endure. If there was an easy way out, like a Dr. Kevorkian living next door, I may have considered that option.

The VA did lots of tests to determine the cause including a Lyme test which had a negative outcome. I requested a more precise Lyme test but the VA doctor in charge of infectious disease refused to go further. I fared no better with my private physicians. With few documented cases of Lyme in Florida, most doctors are not Lyme literate.

Finally, in November 2009 I met a person at a business seminar who had similar issues and he told me it may be Lyme. I'm from Florida and there are few Lyme literate doctors here and few people who know about it. I researched the disease and found a doctor in Maryland who has been treating me since January 2010 with antibiotics and supplements. The strategy is low dosage to begin and high dosage later. The symptoms got worse but now I have more good days than bad. Some of the bad days are the worst I ever had but at least there is a light at the end of the tunnel.

Jim Strahan, Florida

The Disease From Hell--Kacy Henry

2011-06-03T04:00:00.000-07:00

When I was four years old, my family and I took a camping trip to Arkansas. When I returned home to Louisiana, I had over 50 deer ticks on me. We thought they were freckles at first. I got the bullseye rash, muscle and joint aches, etc., and my parents brought me to my pediatrician. He and his assistant pulled all 50+ ticks off of me with tweezers and sent them off to a medical lab at Texas A&M to be tested for Lyme. The test returned positive, as did the Lyme test they did on me. The doctor refused to treat me for Lyme's Disease, and I never received treatment. After six months, I received about a week's worth of antibiotics for a virus, which seemed to help for a little while, but then things got bad.

At five years old, I wound up in the hospital with viral spinal meningitis. I had never come in contact with anyone with meningitis, and no one I knew became sick with it. Until now, we never knew how I contracted it (Lyme Meningitis). The years following consisted of hundreds of ER visits, infections, viruses, colds, strep, the flu, Strep B in my urine, kidney infections, chronic UTI's, muscle aches, joint aches, migraines, etc.

At six years old, I was seeing a pediatric neurologist for chronic migraines. Whenever I got a migraine, it would last for weeks. Nothing helped. I would take a bath, and then bundle up in a towel and lie on the hard tile floor in complete darkness and try to sleep it away. No child should have to know that kind of pain. A six-year-old child should not know how to say "Pediatric Cardiologist," know what it is, know how nurses insert an IV, and know multiple names of medicines.

Somehow, I managed to keep up an active life. At four years old I was certified for snorkeling. Then, I joined our local swim team. I was the first kid that young to do so, and I also pioneered a novice group. I took dance, karate, fished, hunted, loved to write, and I was an honor roll student in school.

With the meningitis, I missed out on nearly my entire year of kindergarden. Instead, I was placed on a program called "homebound." The teachers from the school came directly to my home and taught me. Little did I know when I met my teacher that I would be with her until my junior year in high school.

Ever since the meningitis, I've been on and off homebound due to attendance issues. All of my absences have always been excused by a doctor's note and I've always made up and kept up with my work, but it never mattered. I'd always end up back on homebound for being sick too often.

Now I'm 17 years old and going to be a graduating junior this May. The only reason that I'm able to graduate is my mom. If it hadn't been for her fighting with the school board, helping me keep up with my work, and helping me persevere, I would have never had this opportunity.

About five months ago, I had surgery to have a port inserted for long term antibiotic use at the request of my Lyme doctor. After the surgery, I experienced excruciating muscle spasms. The muscle that they had sewn the port into was very inflamed and you could see it jumping from across the room. Upon arriving at our local ER, the ER doctor told us that I just needed to get over it and that he couldn't give me anything for pain because I had been sedated earlier that day. With no one helping us, my mom and I drove over two hours away to Alexandria, where I had surgery. They admitted me into the hospital and kept me on a morphine pain pump to control the pain.

Two months ago I woke up with pain in my side. It wasn't that bad at first, so I just took some medicine and went back to sleep. By seven o'clock that evening I couldn't walk. The pain was so intense that I couldn't stop screaming, I was puking the Miralax I had taken (before it got that bad I thought it may have been constipation), and I was so weak that my boyfriend had to hold back the recliner that I was sitting on. After being in pain all day and finally at my breaking point, my parents called an ambulance.

The ambulance came and they assessed me and put me onto the stretcher. They had to lift me up by the blanket I was sitting on because I was so weak, and they got me into the ambulance and started an IV. My mom had told them that I was having chest pain (the pain was radiating to my chest), so they administered nitroglycerin. It only took the edge off the pain. Then I started vomiting. They administered nausea medicine through IV. I remember when I was puking I wet the stretcher and all I could do was apologize.

When we reached the hospital, the nitroglycerin was starting to wear off. The pain began again, and so did the yelling. When I asked for pain medication, the ER took over an hour to order it from the pharmacy and administer it. The pain medicine they gave me did nothing, so I had to wait for stronger pain medication. While I waited, the nurses kept telling me to be quiet or I'd wake the babies in the ER. I couldnt stop yelling, the pain was so intense. After an hour, the ER doctor came in and through my yelling, I heard her say that they were going to discharge me. When I tensed up and tried to tell her "no," the pain intensified and the doctor lost patience with me. I told her I was not leaving until we knew what was wrong. Her reply was, "We don't have an ultrasound tech on call tonight, you'll have to come back tomorrow."

I refused to leave. The pain was so intense, I knew something had to be wrong. Finally, the doctor gave in and called in the ultrasound technician (they had done no other tests besides blood tests yet). In the ultrasound room, the technician kept asking me if I was sure I wasn't pregnant. After a urine pregnancy test, a vaginal exam, and a blood pregnancy test, the doctors finally told me that the ultrasound uncovered massive amounts of fluid throughout my chest, abdomen, and pelvic area. They had thought it might be an ectopic pregnancy at first, but after tests proved I wasn't pregnant, they realized that it was blood. I finally got morphine and the pain lessened. Next was a CT scan with contrast by IV and enema.

Finally after testing and several rounds of pain medication, the doctors realized that I had a massive ovarian cyst that ruptured, causing internal bleeding throughout my body. They prepped me for emergency surgery, and the next day I had a laparoscopic procedure and made it through fine.

During my surgery, they noticed that my gall bladder was enlarged. So, a few weeks ago I underwent a HIDA scan (gall bladder function test). This test revealed that my gall bladder was only functioning at 32%. I had surgery two weeks ago to remove it. While I was in the hospital, they said the duct to my gall bladder was sealing off and they don't know how it was functioning at all.

Now recovering from my gall bladder surgery, I'll be having a surgery in a month to remove my port. I had bronchial spasms and my Lyme doctor doesn't want to take a chance with it. My friend--who has had Lyme for the same length of time, and who has a lot of the same symptoms--and I call Chronic Lyme's Disease "the disease from hell."

The only other medical condition we can compare with it is cancer. There are common misconceptions about where Lyme's Disease is found, and what it can affect. The truth is that Lyme can be found everywhere. In the North, South, East, and West. Chronic Lyme's Disease affects every tissue, every muscle, every organ in the body. Lyme is not something to play around with, and it destroys lives.

Kacy Henry, Louisiana

Congratulations, You Have Lyme--Lisa Schultz-Hilton

2011-05-31T04:00:00.000-07:00

I used to work in healthcare. Since I was little there were two things I was interested in, the paranormal and helping people who were sick. I went to school to be a medical assistant but didn’t like working in the doctor's office. I liked taking care of people long term. But this disease took every dream away from me. Now I feel like a big burden on everyone!

The first time I got sick was at a mall, and my heart started pounding. I felt like I had the flu, and my friend took me to an emergency room. They told me it was a panic attack. Well it never went away. I would go to the emergency room daily, sometimes more than once because of my heart racing or palpitations. My head felt funny and I couldn’t focus. Eventually I didn’t leave the house for three months. I thought I was going crazy. I was hospitalized for a couple of days. My doctor said I was dehydrated and looked sick. Several tests showed nothing, except an ultrasound on my heart showed “possible” mitral prolapse.

In 1992 I moved to a new house but was always restless. I couldn’t handle working. I felt nervous, like something was wrong, but doctors still couldn’t find anything. At this point doctors had me on several meds from Ativan to Prozac. Nothing helped, and most anti-anxiety drugs made me feel even worse.

In 1993 I moved to Arizona and joined a panic disorder group. Heartburn started, really bad. I kept going from doctor to doctor. A charcoal swallowing study showed acid reflux and hiatal hernia. My neck got really stiff. I had a fever and started hallucinating that the room was made of dots. I got big hives up and down my thighs, which lasted for about three months. Doctors gave me steroids and diagnosed me with Desert Valley Fever and later a Black Widow bite. Later tests showed negative for Valley Fever.

I was trying to go to school to be a medical assistant. I did well, but an ambulance had to be called because of my shaking spells and almost fainting. I got a job at a doctor's office. I still had hives on my legs and I kept getting fainting spells. The doctor I was working for thought it was because blood bothered me. It wasn’t. I felt like I was dying. My marriage fell apart and I moved to Wisconsin to be with my sister who was also going through a divorce. At this point I was completely irrational. My husband was the nicest man. I couldn’t explain why I wanted a divorce--just that he deserved someone not sick who could be a “wife” to him.

1994-2004 I still thought I was having panic attacks, and I started having chronic yeast problems. Also at night I would hallucinate that spiders were coming down on me from the wall. I gave up on doctors for awhile and started drinking. It was the only way I could go out with friends without having panic attacks.

2004-2006 I noticed that when we all went out drinking, my friends would be sick a couple of hours in the morning. I would be sick for days. I couldn’t stand up or my heart would feel like it was pounding out of my chest, and I’d start going into a tunnel. I started going back to doctors who tested me for diabetes many times. Eventually I got a job at a nursing home. I noticed I was having a hard time holding a fork while eating. I started getting a "shock" feeling. I’d just be sitting there and all of a sudden I’d hear a loud click and feel like everything went white, and I felt a shock run through my body. It was crazy. I was scared to tell anyone.

I was also working a second job at a home health care company. I was being trained to be a director in the office while still working in the field. One day I was taking care of a lady, and her walker started getting ahead of her. When I reached out to try to stop it, I couldn’t feel my hand. In the next week that numbness moved to my right leg. My knees began to hurt. At the office I couldn’t concentrate; I’d answer the phone and forget the name of my company and go totally blank.

I’d also get lost when I was driving. One time my daughter was in the car with me and she said, "Ma, what are you doing?" I looked up and I had pulled into someone’s driveway. I was just sitting there, not knowing why, or what I was doing. I was so scared. How can there be nothing wrong with me? I started going back to emergency rooms. One time I went two days in a row. I couldn’t walk and could hardly stand up on my own. My Mom had to take me. I felt like my legs were full of lead. I had a doctor twice who said to me, "Stop being a baby; go home and drink a Pedialyte." She handed me a Pedialyte and walked out of the room.

Finally in 2006 my family doctor asked me if I’d ever been tested for Lyme. I said I didn’t know. A week later her nurse called me and said, "Congratulations, you have Lyme Disease. There’s a small chance you won’t get better." She told me there was a prescription of Doxy waiting for me at Walgreens. I was so scared to take pills at this point because of all the crazy meds doctors had put me on in the past. But I was excited at the same time, because for the first time in 15 years I had a diagnosis. I wasn’t crazy! Little did I know, this was just the beginning. After a couple days on Doxy I started twitching. I couldn’t do anything--it was so embarrassing. At work I wore a trench coat to hide it from my co-workers. I called my doctor and after a day her nurse called me back and said try Benadryl. They knew I couldn’t take that already.

Someone referrered me to a new doctor in town who had treated some people with Lyme Disease. Big mistake. This guy turned out to be a partner of the original doctor who diagnosed me--who eventually refused to see me for getting a second opinion. He treated me so badly. He sent me to a neurologist and an ID doctor, but first handed me a card to a psychiatrist and patted me on the head. He said, "You have too much going on. I’m going on vacation for three weeks." I couldn’t believe it. The neurologist he sent me to said to me right off the bat, "You don’t have Lyme. Why do you think you do?" When I told him I had a positive test, he called the other doctor and yelled at her right in front of me, my sister, and my mom. He also told me that I manifested symptoms from reading about it. The ID doctor he sent me to just said I had weird symptoms for even Lyme disease. He redid the Western Blot and said it came back negative. Even though I tried to get copies they won’t send me a copy of that Western Blot.

Now I have an LLMD. Antibiotics helped me get back on my feet but I’m still sick every day. My memory is shot. I have no problem-solving skills. I’m shaky and faint. Mornings suck! I can hardly work. My jaw pops when I try to open it, and my shoulders hurt. I have restless leg syndrome which makes it impossible to sleep. I’m applying for disablilty or SSI. I have already been denied once. I have just started taking IRT classes. This disease took away my whole life as it was. But on the positive side, it also helps me to remember what’s important--my kids and my new husband. And my dogs that never leave my side, especially when I’m sick!

2009~ I'm still sick. I question everyday if I have the right diagnosis since there are no accurate tests, but all docs have found other than Lyme is bulging disks in my neck through an MRI, and nerve/muscle damage in my arm through an EMG. I just keep getting worse. Now am on disability and am homebound. I gave up driving. I'm seeing a second LLMD. I don’t want to give up hope, but now I can hardly walk or lift my right arm. My head feels too big for my neck, and I have spasms and burning pain, and tightening in my muscles that is hard to explain. My balance is off; my vision is blurry in my right eye. My stomach does stuff I can’t describe. I have weird symptoms day in and day out. Doctors just look at me like I’m nuts.

For the first time depression has set in, and to make matters worse, my husband and daughter are starting to show signs. My husband had a seizure at work; he has weak legs and arms, numb arms, depression and anger issues, and bad muscle spasms in his back. His knees hurt severely. Physical therapy had not helped either of us. Neither do pain pills. My daughter is getting joint pain in her knee and elbow and is showing other symptoms too.

Lisa Schultz-Hilton, Wisconsin

God Doesn't Make Mistakes--Kari Hazewinkel: Part 2

2011-05-27T04:00:00.000-07:00

My body was broken, my spirit was wounded, and there were no answers. My dear pastor in Pensacola, Pastor Schettler, came over one day, and we all got down on our knees, and took it to the Lord in prayer. The Lord promised us that when we pass through the waters, He will be with us. And through the rivers, they shall not overflow us. And when we walk through the fire, we will not be burned.

A couple months later, Mom found a naturopathic doctor in Texas. She was knowledgeable on Lyme disease and she worked with a neurologist. He is a brain surgeon who is also one of the top Lyme Disease specialists in the country. Mom and I flew out to Texas in February, 2005. We planned to just be gone ten days. We were gone two years.

My Dad had to eventually bring me more clothes and my dog, Gizmo. I was not going to live in Texas without Gizmo! He was one of God's priceless gifts to me during my affliction. He was such a little trooper; he never left my side. My days were filled with so much pain, but he still managed to make me laugh every day. God sent me my little Gizzy for such a time as this. A few more of God's gifts to me were my parents, my brothers, and my very best friends Mari, Melissa, and Alan. Their support, their humor, and their faith have been a lifeline. The Lord has surely made a way for me to pass through this affliction. (Gizmo passed away three years ago. A piece of my heart died with him. He was 16 years old. He was the sweetest little thing God ever created. He never got to see me well. . .)

The first week in Texas, one doctor sent me to the hospital. He then sent me to a GI doctor to have my gallbladder taken out. It was diseased from the Lyme infection. I had been having gallbladder attacks for about a year. And since I was in such a weakened state, I had to be hospitalized for 4 days after the surgery.Then a few months later, the doctor realized I was too sick to tolerate the antibiotic program that is protocol for Lyme disease. I couldn't even tolerate the herbs or supplements given to me by the naturopathic doctors I saw in Texas. When I was 29, after two years in Texas, and having been treated by nine different doctors, Mom and I went home. I was still very sick, but the doctors had done what they could. The battle continued.

But during our stay in Texas, Dad had taken a new job as the wrestling coach at Marion Military Institute in Marion, Alabama. He packed up our house in Pensacola by himself and bought a house in Marion and unpacked by himself. My Dad has been a tremendous father in all this. Willing to pay any price to get me better. My Mom has been my rock. She has been my greatest doctor and advocate! It is because of them that I make it through each day! In the nineteen years of watching their daughter suffer, my parents have never become bitter toward God or turned against Him. They have kept their eyes on the Lord and have lived honorably in this hardship.

Even my brothers, Robert and Nathan, have continued to walk with God. It has been extremely difficult on them having to watch their sister suffer. Robert calls almost every day and the first words out of his mouth are, “How's Kari?” Nathan tells me all the time to keep fighting and not quit. They have been my most faithful prayer warriors. And now my brothers are training their children to pray for me. My nephew Steven and my niece Katie ask me all the time if I am better yet. When they see me that is one of the first things they ask, and then they tell me they are praying for me.

In November, 2006, Mom and I went home to Marion. Our first year in Marion was a nightmare. Not only did I have to be hospitalized for three days in Demopolis for getting violently ill again, but Mom also got deathly ill. She had a life-threatening gallbladder infection that turned gangrenous; also, part of her liver turned gangrene. She had to be transported to Birmingham and given large doses of IV antibiotics, and was hospitalized for five days.

I continued to struggle with my illness. The pain in my stomach, spine, and legs was unbearable. And I was still eating only baby foods and soups. I was still continuing to go downhill in my health, and so again Mom and I researched and found a doctor in Pennsylvania. The doctor tried some different medicines and treatments, but he didn't understand about Lyme disease—how to kill it or how to recover from it.

I have estimated the number of doctors that I've seen these past nineteen years, and it comes to around ninety. The number of states we have lived in for this disease has been seven. The amount of money we have spent on this disease has been around $800,000. One of the antibiotics I had to take for Babesia (a co-infection of Lyme disease), called Mepron, cost $800 a bottle. I had to go through three bottles. So that comes to $2,400 just for one round of medication. In Texas, I had thirty-eight lipid IV injections, which totaled $10,000. I am so thankful that my Heavenly Father owns a cattle on a thousand hills!

All these years my Mom and I spent hours researching not only Lyme disease but also everything there is to know about the human body and how it functions. And I kept reading the importance of enzymes. I discovered that enzymes are the LIFE of the body and are responsible for every chemical process that occurs, from breathing to supporting the immune system. Enzymes do the work required for all life processes. Providing the body with enzymes and the proper nutrients, gives the body what it needs to heal itself under any circumstance.

So, I was burdened to go to an enzyme therapist. By the Lord's leading, we found one in Florida. In December of 2008, Mom and I flew down there for four days. In his clinic, he did some tests on me and also did some work on my spine. I got violently ill that night and ended up in the hospital early the next morning. Since I was so sick, had a fever, and my liver enzymes were elevated again, the hospital physician did not want to release me. But we had a plane to catch to come back to Marion, so I had to sign an Against Medical Advice form, and we left.

The doctor realized that my nervous system had crashed from being assulted by Lyme disease for nineteen years. That is why every little thing all these years made me so violently ill, and why I couldn't tolerate food, antibiotics, lights, noises, or even being out in public. He suggested I seek help from his colleague in Tennessee, who is also an enzyme therapist as well as an acupuncturist.

On December 15, 2008, we were in her clinic. The first week of taking her enzyme formulas and getting spinal adjustments, my stomach already felt better. I was dying, and the Lord in His mercy, used her to save my life.

In January 2009, Mom and I moved to Tennessee to be near her. We couldn't afford the rent for an apartment. But the Lord undertook for us in a marvelous way. He provided a home for Mom and me to live in for free. A soldier in the Army, Sergeant Jamey Stephenson, had orders to go back to Iraq, so he let us live in his house. It took about six months for her to stabilize me. She was then able to put me on a formula called TRMA, which has the enzyme Protease in it. Protease is an enzyme to kill the Lyme pathogens as well as other pathogens in the body. It works slowly, so I am able to tolerate this Lyme medicine. In October, 2010, mom and I moved back to Marion.

Over the last two years I have seen some improvements in my health. My stomach is healing, my kidneys are functioning better, and my immune system is stronger. However, there is still much healing that needs to be done in my body:

--The Lyme bacteria in my cells, blood, and organs, still need to be killed
--I still have severe leg pain and chronic fatigue
--I still can't sleep at night
--There are still toxins, inflammation, and dehydration that need to be addressed
--My common bile duct is still congested, causing pain and constipation
--I still need four prescription pain killers every day
--I am still underweight

But our biggest concern is the brain injury caused from the numerous vaccinations I received as a child, and from the Lyme infection. I have recently begun consulting with three other practitioners who are very knowledgeable on treating brain injury and repairing the blood-brain barrier. So, my fight against Lyme disease continues.

This is not an easy road that I have been called to walk. This disease is frightening and painful. Many days I am flooded with despair, and many days I WANT OUT! But I am determined to trust God in this; believing that He has a purpose for this suffering and that He is NOT going to waste my pain. I will continue to embrace Him every day, and find comfort knowing that He is the WAY, the TRUTH, and the LIFE!

I want to share three treasured verses that I cling to in my suffering:

And we know that all things work together for good to them that love God, to them who are the called according to His purpose (Romans 8:28). As a child of God I believe His Word. ALL things work together for good. And if I never know the purpose for my suffering here on earth, I will surely know it in eternity.

For I know the plans I have for you, declares the Lord, plans to prosper you. . .plans to give you a hope and a future (Jeremiah 29:11). In all my years of suffering it has been such a comfort to me knowing that the Lord has a plan and a purpose for my life. God doesn't make mistakes! Most people can't see any value to suffering. That's because they don't have eyes of faith. As a Christian, there is much value in suffering. Earthly value, but most importantly, eternal value.

. . . we also glory in tribulation, knowing that tribulation produces perseverance; and perseverance, character; and character, hope (Romans 5:3-4). This trial is helping me develop strength of character, and devotion to Christ. It is helping me obtain a deep spiritual growth and love for my Savior. And, it has forced me to seek God with my whole heart! Someday, if God wills it, I will be completely well. Until then I am going to run with perseverance the race that is set before me.

Kari Hazewinkel, Tennessee

“Father, with happy committal I give you my life. Do with it as it pleases you, only give me great grace to do for the glory of Christ Jesus, whatever comes to me, in sickness and in health.”

--Missionary Jim Elliot

God Doesn't Make Mistakes--Kari Hazewinkel: Part 1

2011-05-24T04:00:00.000-07:00

I want to begin my story with my salvation, because that is the most important thing that has ever happened to me!! I received Jesus Christ to be the Savior of my life, on Easter Sunday night, when I was 7 years old. Then when I was 11, I surrendered my life to Christ.

When I was 13, in 1991, I got bit by a tick on a camping trip up in Minnesota, where I grew up. That was a significant moment in my life because I believe that is when I was infected with Lyme disease. Shortly after that camping trip, our family moved to Pensacola, Florida. My Dad got a job coaching wrestling at Pensacola Christian College. Six months later, in January of 1992, I became ill. I was 14.

My first symptoms were intense fatigue and feeling like I had the flu. We thought it was mono, but the blood tests came back negative. As the intense fatigue and flu-like symptoms continued, I also developed severe leg pain. I could no longer walk without pain. Over the next 2 years, I found no help and no relief from the numerous doctors that I saw. They prescribed different drugs, ran tests, and did treatments on me. Everything from steroids to cortizone shots. I was in and out of hospitals. I only got worse and the medical bills got bigger.

When I was 16, I was admitted to the hospital for a week of tests. At that time I was diagnosed with Reflex Sympathetic Dystrophy (RSD). We found out six years later that this was a misdiagnosis.

During one of the tests that week the doctors made a medical mistake. The test consisted of inserting a catheter into the main artery in my lower right abdomen to send dye down my leg. However, something went wrong and I stopped breathing during the test. I remember them yelling at me to breathe. After the test was complete, I found that my whole lower abdomen and upper right leg were black and blue. They pulled out the catheter too quickly causing injury to the tissues and muscles. I had severe pain in that area and I limped for two months. When I got home from the hospital, I showed my black and blue area to my best friend, Suzie, and she burst out crying.

The doctor who diagnosed me with RSD prescribed three options for treatment: a sympathectomy (cutting nerves in my legs so I would not feel my pain), implanting a morphine pump in my spine, or epidural nerve blocks (which carried a risk of paralysis). My Mom did not have peace about these treatments. We praise the Lord that He intervened and burdened Mom to not pursue that path.

The Lord led Mom to find a naturopathic doctor. She taught us the importance of nutrition and supplements for wellness. She also did iridology and reflexology on me. She was a great help to me over the next year. However, there was no improvement in my symptoms.

I was home schooled off and on my junior high and high school years. My younger brother Nathan was very worried about me. When he was in the seventh grade he didn't want to leave me so he stayed home and homeschooled with me. He was willing to give up his Cross Country sport, which he loved very much, to stay home and be with me. He sacrificed his sport for his sister. That is a huge sacrifice for a junior high boy! I believe the Lord blessed him for that because our school (through much persuading by Mom) allowed him to still participate in Cross Country.

My Junior year of high school was the worst. I was in full body pain, burning nerve pain in my legs, arms, hands, and feet. And I still had the chronic fatigue and flu-like symptoms. Many nights, my family had to massage my arms and legs. My brothers would each take an arm and my parents would each take a leg, and they would massage until the pain level decreased enough so I could make it through the night.

Throughout all these years of terrible pain, confusion, and fear, the Lord always directed me to verses that would uphold me. Such verses as, What time I am afraid I will trust in Thee.

The Lord will strengthen [her] on [her] bed of illness. It is good for me that I have been afflicted, that I might learn Your statutes.

In 1996, after five years of struggling with this disturbing illness, the Lord helped us find a homeopathic doctor in Colorado. The summer before my senior year, Mom and I flew out there and lived with her for five weeks. Through her help with homeopathy and spinal work, I was able to go back to school my senior year and graduate with my friends.

When I was 19, I went to Pensacola Christian College. In October of my freshman year, I became worse again. The pain spread to my whole spine causing increased symptoms, like weakness, spine pain, headaches, fibromyalgia, and Temporomandibular joint disorder (TMJ). The Lord helped me to find a homeopathic doctor to help me get through college.

Before my senior year, my friend and I went on a missions trip to Japan. We helped a missionary family for one month. The missionary was Dan Gardner, a former wrestler of my Dad's from Pillsbury Baptist Bible College in Owatonna, Minnesota.

This was a huge miracle! In the midst of my illness, the Lord gave me the strength and endurance needed to accomplish all the mission work. Going to Japan was a wonderful experience and privilege that the Lord allowed me to have. It was my heart's desire to be a missionary.

When I was a senior, this disturbing illness got even worse. It had effected my whole body, and again I had an increase of symptoms, like joint paint, neurological problems, nausea, and gastrointestinal pain. It took me four and a half years, but through God's strength, I was able to graduate from college in December, 2001.

I knew I couldn't work after college because I was in terrible pain, and felt very sick, but a few months after I graduated, I was bored and restless. So I got a job working in the Secretarial Department at Pensacola Christian College for the next two years. Those years were the best and worst two years of my life. I loved my work and made some very close friends. But I was so sick. I was in the hospitals and on medical leave, off and on during those years. I had to take eight prescription pain killers a day, and I was still on the hunt for a doctor who could find out why I was so sick.

From 2001-2008, I had several incidents of becoming violently ill due to the toxins overloading my kidneys. I would get extreme stomach pain, break out into a full body sweat, have diarrhea, and start vomiting for hours. Also, my liver enzymes would elevate, indicating inflamed or injured liver cells. My Mom and Dad would have to take me to the Emergency Room. Each time I was given the same protocol to get me through it: an IV drip for severe dehydration, IV Zophran for the nausea, and morphine or some other narcotic for the pain. Then the doctor would always admit me into the hospital.

During the very dark days of this affliction, God whispered to me. He whispered from Heaven, “Will you trust Me?” I would bow my head and cry, “Yes, Lord. I will trust You!” I was reminded that my times are in His hands!

When I was 25, in 2003, my doctor in Georgia, suggested I get tested for Lyme disease. I got tested and it came back positive. This was it! The turning point in my illness. Finally, after eleven years of searching, we found the answer—Lyme disease! However, as we soon discovered, no one knew how to treat Chronic Lyme disease. Let me add here again that I believe I contracted Lyme disease from the tick bite I got when I was 13. The question we continually ask is, why couldn't my immune system fight it off? Lots of people get bit by ticks and they don't all get Lyme disease. My best guess is that some questions in life we will never know the answers to. As a Christian woman I am comforted knowing that the Lord knows all the answers. Some He reveals in His time; some I will wait until eternity to found out. Anyway, at the time of the tick bite my immune system was in a weakened or stressful state. My body was going through puberty (development of the hypothalamus, pituitary, and adrenal glands). I also had received a round of vaccinations, which were required before I could attend the new school in Florida. I believe this was the main culprit that broke down my health. My body was overwhelmed and could not handle the Lyme pathogen.

On September 11, 2003, Mom and I flew up to PA to see my first medical Lyme specialist. He put me on some very strong antibiotics. This was the first time of taking antibiotics for Lyme disease. They made me much sicker and they caused increased stomach pain. Again, I was put in the hospital for 1 week. The GI doctor who treated me found that the whole lining of my GI tract was inflamed. After a few months of recovery, we decided to find a different Lyme doctor closer to Pensacola. We found one in Alabama.

He ran another Lyme test on me right away, and was shocked at how high my Lyme infection numbers were. He also tried some very aggressive antibiotics, but I was in such a weakened state and my digestion, elimination, and lymphatic systems were not functioning properly. That is why I could not handle antibiotics. I became worse again. I couldn't eat, I was in extreme pain, I was too sick to get out of bed, and I dry-heaved every day. I had to carry a towel with me every where I went in case I threw up. The doctor didn't know what else to do for me. All he knew to do for Lyme disease was antibiotics. My parents and I began to sense his frustration and knew we could no longer continue with him. A few weeks later, in August 2004, I had to be hospitalized again. I still couldn't eat. I ate only a little baby food. I lost 33 lbs in three months. I realized I had to quit the job I loved very much.

I felt deep despair during this time. My body was broken, my spirit was wounded, and there were no answers...

Part 2 Friday

A Lot of Life to Live--Kim Christensen

2011-05-20T04:00:00.000-07:00

My name is Kim, and I’m a twenty-something, ex-vegetarian, gluten-intolerant, vegetable-loving, creative spirit Lymie living in Minneapolis, Minnesota. I’m a natural health junkie and whole foods, sustainable living devotee. I love to cook, I love to write, I love to share knowledge. I believe in the innate ability of our bodies to heal. I believe in the power of the human spirit. I believe that despite all the sad and nasty stuff going on in this world, there is more beauty and joy than we can ever imagine. And I believe we each have the ability to make choices that ensure health and vibrancy for the future. There’s a lot of life to live, and ultimately we’re each in charge of how we live it.

I was overweight, struggled with persistent acne, eczema, hives, seemingly snowballing food, seasonal, and environmental allergies, constant stomach aches and digestive issues, depression, and nasty, recurring sinus infections. After receiving the first and second Gardasil vaccinations, all these issues seemed to amplify, leaving me debilitated with stomach pain and irregular digestion, suffering rapid weight loss, an absent menstrual cycle, and a host of other symptoms from poor coordination to hair loss, lethargy to vision problems. Since all my blood work, endoscopes, and CT scans came back normal, save some mild esophageal damage from acid reflux, my general practitioner suggested I stop eating acidic foods, and attributed the rest of the symptoms to IBS, stress, my running program, and too much caffeine. She said I was fine. I knew I wasn’t.

As I worked with a naturopath, acupuncturist, and other healing professionals to address Candidiasis, detox from the vaccine, intestinal parasites, heal my gut, and support my whole self, many things improved. I learned how to cook amazing food free of all the allergens that plagued me. I gained back weight, gained back energy, and gained back my sparkle and joy. Health issues I’d had for years – acne, terrible seasonal allergies, eczema – seemed to melt away. But despite so much improvement, I suffered cycles of recurring symptoms regularly. I started developing increasingly severe joint pain, fatigue and headaches. I noticed neurological issues and heart palpitations. I knew something else was still out of balance.

In the summer of 2009, things really started flaring up, and I got more concerned. My cousin had recently been diagnosed with Chronic Lyme Disease, and she expressed concern that my symptoms sounded like Lyme. Frustrated and desperate for answers, I decided to take her advice; I ran a Western Blot test for Lyme Disease through IGeneX, a state of the art testing laboratory for tick-borne illnesses.A few weeks later, on November 2, 2009, I got my answer. I have Chronic Lyme Disease.

The diagnosis was frustrating, saddening, relieving, and liberating all at once. All those symptoms I had for years actually stemmed from a common issue – a full body infection of B. Burdorferi, the bacteria that causes Lyme Disease. My test results, health history, and symptomology were a perfect fit; I finally had my answer. I knew the road to recovery would be long and hard, but at least I finally knew what I needed to do to recover. I don’t know when I got bit by the fateful tick. It could have happened on so many occasions; my childhood summers were spent in the Northwoods of Wisconsin, at rustic summer camps, and camping and canoeing with my family. I ran through the woods, lay in the grass, and played in the brush. In college and as an adult I still do the same thing. I’ve picked more ticks off my body than I can count; I guess one got past my nightly tick check.

But really, it doesn’t matter when I got bit. All that matters now is what I choose to do with this knowledge.

In a weird way, I’m grateful for this experience. It has taught me to be mindful, be patient, and have faith in the power of positive thinking. It has solidified my belief that natural healing is possible and attainable. I learned to become an advocate for myself, listen to the deep intuition of my body, accept my own limitations, and nurture the hope that lies within. But it has also been the most challenging, most frustrating, most spirit-testing experience I have ever endured. I’ve been scared out of my mind, and I’ve felt more sadness than I thought possible. I have plenty of bad days that crush my spirit, and I have to pick pieces of myself up, dust them off, and put them back together.

Sometimes I feel really sad and angry, and miss things about the life I once knew. But then I remember that while I’ve left a lot behind, I’ve gained more than I could have ever imagined. I’m still here, and stronger and wiser that ever. I know myself better. I live a richer, fuller life. I am grateful for health and life in a way I never fully understood before, and now truly believe that I deserve to be happy and healthy.

Kim Christensen, Minnesota

Taking Back Ground--Sheri Salatin

2011-05-17T04:00:00.000-07:00

Lyme Disease - the silent pretender and invisible enemy. Rarely deadly in and of itself, but leaving its mark just the same. It terrorizes body organs and leaves muscles weakened and writhing in pain. A bacteria which dons the robe of a virus, Lyme is a spirochete that drills its way through every cell of the body. It has the ability to transform and mutate into many various forms, hiding its ugly face from antibiotics. Its favorite mode of transportation is the insignificant deer tick, which is about the size of a period at the end of a sentence.

August 6, 2009

Mr. Borrelia came to visit early one morning while I was gathering clippings from my flowerbed for my sister's wedding. He was riding on the back of a spider rather than his usual vehicle and he failed to leave the target mark of alarm on my arm. He brought friends and set up house.

Two weeks later, I crashed into bed with the flu, a first for me. A week later came the sinus infection, the bladder infection and then the kidney infection. Two months down the road, I was admitted to the hospital with heart problems and blood pressure instability. Fainting every time I stood for more than five minutes and headaches bordering on migraines fast became a way of life. My church family swooped in for a rescue with prayers, meals and cards, lending support in the way only they could.

By Christmas that year, I was on a heart monitor. Blood tests and stress tests were run and nothing was found. "You have soldier's heart," (en.wikipedia.org/wiki/Da_Costa%27s_syndrome) the cardiologist told me. "The worst case I have ever seen. We have no cure for it. You need rest."

Soon breathing became difficult. My chest ached and burned, pleading for air. The motion was made, but suffocation still felt imminent. Beta blockers were prescribed to steady the rate.

My legs flamed with fire, making my whole body shake, and the pain grew so bad, nausea followed. Stairs, which at one time presented no obstacle, became impossible to climb in one motion. Natural childbirth was preferred over the agony of daily life. Narcotics were prescribed for the pain.

Then my mind grew old and feeble. I forgot best friends' names and quit driving altogether when I could not remember how to get home from town. Dinner preparation took everything in me. The oven would be turned on, only to be forgotten. My children were crying for their mommy to come back to them. We were surviving, but not living. Mr. Borrelia had stolen my life.

I consulted doctors, chiropractors, herbalists and naturalists. All had suggestions, but nothing was working and my list of symptoms increased:
Persistent swollen glands
Sore throat
Fevers
Joint pain or swelling
Back pain
Joint stiffness
Muscle pain and weakness
Muscle twitching
Mental confusion
Difficulty with concentration or memory
Difficulty with speaking or reading
Mood swings
Irritability, depression, or panic attacks
Tremors or seizures
Headache
Light or sound sensitivity
Blurred vision
Ear hum or loss of hearing
Vertigo or poor balance
Lightheadedness
Hair loss
Dire need to sit or lie down
Tingling, numbness, or burning
Neck pain
Extreme fatigue
Trouble sleeping
Excessive need to sleep
Unexplained change in weight
Bladder dysfunction
Stomach problems
Heart palpitations
Sore chest wall
Breathlessness
Night sweats

This is only a list of symptoms I experienced, there are more to Lyme Disease. (http://www.lymenet.org/BurrGuide200810.pdf)

March 4, 2010

Arizona boasted of a small town nutritionist. My dear friend Melissa lived there for years before her move to Virginia and she gave me the first glimmer of hope. With nothing to lose and the full support of my husband, I flew to Prescott, Arizona. This nutritionist had a theory that I would soon put to the test. She believed in the immune system.

"If we can get your immune system working at its very best, it will take care of the Lyme on its own."

She hooked me up to her Asyra machine (http://www.asyra.com/index.html) and it spit out a report of everything that was not part of my own DNA. She then formulated a plan of attack against the Borrelia family and friends. Using diet and enzymes, she focused on my liver, cleaning it out and supporting it to begin filtering properly.

After three days of the diet and enzymes, I was functioning without the pain medications. The fire in my legs and joints had dulled to a slow burning ache rather than the previous bonfire.

Sixty days later, my mind began to clear and I started to feel alive once again. Another visit to the nutritionist and good news was met. My liver was clean and functioning once again. I was her miracle child. We tested Polyface (http://polyfacefarms.com/) meats on the machine and behold they were working extra duty to clear the toxins.

Another diet with lots of Polyface meat and different enzymes were prescribed and each organ vacuumed the remains of the Borrelia family out of their home.

March 1, 2011

Still battling on the front-lines against Lyme. However, the pain and forgetfulness is a distant memory. My heart has been weakened but the effects of Lyme are only felt under stress and exhaustion. I continue to avoid certain foods and take enzymes to support my immune system.

Today I am on the mend, taking back ground every day, refusing to give up. Praising God for the lessons and His incredible healing touch. Using food as He designed, the body can be fully enabled and rested.

Sheri Salatin, Virginia

"He is no fool who gives what he cannot keep, to gain what he cannot lose." --Jim Elliot

Every Day I Feel Like I'm Going to Die--Brooke Linville

2011-05-13T01:00:00.000-07:00

I was bitten by a tick when I was ten. It's the only tick bite I remember, though a large number of those with Lyme don't remember a tick bite. There's no way to know if this bite or another was the culprit. I do remember a rash on my hand the summer I was pregnant, and I now wonder if it was from a tick, but there is no way to know. I always had weird medical things happen as a kid though, so we have wondered if maybe it's been dormant for many years. Your immune system has an amazing ability to keep things in check (even if you've been given a taste of that forbidden formula). And your immune system is amazingly susceptible to stress, which arrived on my, well, ashy, crumbling doorstep when I was eight months pregnant.

I had Kellen and went into my six-week checkup, where they did a pap, which came back abnormal (yeah, my fall pretty much sucked), and gave me a flu shot. Four days later (and four days after returning to teaching) my face stopped working. I was home nursing Kellen (or trying) and tried to smile at him, at which point I realized I couldn't move the right side of my mouth. Earlier in the day I had noticed that it felt like I was talking with braces on, like my lips were having to make way for an obstruction on my teeth, despite not having had braces in well over a decade. That morning I drank orange juice that tasted dull as well as had a Starbucks sandwich that made me question their place as a food establishment. It turned out that my taste buds were not working on the right side. After I finished nursing Kellen I decided to go back to school to finish teaching. I was really scared but didn't want to deal with it at the moment (because the only two options I could think of were a stroke and brain cancer). As I was driving down the road I lost my ability to blink my right eye. I turned around, and we went to the hospital.

The good news is that it wasn't a stroke or brain cancer, though the way the Dr. told me it was "just" Bell's Palsy made it seem so benign--as though I hadn't just lost full functionality of one side of my face and now looked like this:

"Are you sure nothing else is wrong?" I asked the ER doc. I just couldn't fathom that the nerves in my face would stop firing just because they felt like it. The doctor assured me that nearly all cases of Bell's Palsy are spontaneous and have no other underlying cause than a small virus. (Had I lived in the Northeast, it is likely I would have been tested for Lyme then, as Bell's Palsy is common in Lyme and the first symptom of it moving into your brain, when things get really dicey.) They gave me anti-virals and steroids. (It was because of this I stopped breastfeeding.)

Dan and I decided to head down to San Diego. I had taken a leave of absence from work because I was overwhelmed. The stress of our house burning down in a fire and the rebuild was compounded by this new development, and I knew that I was spread too thin. It has always been hard for me to walk away, and while it was sad, I am proud of my ability to say, "I can't." We left the day after Thanksgiving, a trip that was nearly thwarted by an incredible and overwhelming sense of anxiety. I couldn't sit down at all because I felt so antsy and uncomfortable. It was one of the only times I've ever had the urge to scrub a floor. It's unknown if this was a natural progression of the Lyme or because I had been prescribed Zoloft to deal with the PTSD. It's been posited that SSRIs (selective seratonin reuptake inhibitors) may actually exacerbate Lyme symptoms in some people (many also find them helpful).

That was also the day that the dizziness set in, and it's kept a firm hold on me for over a year. I spent the entire trip in San Diego sleeping. When I wasn't, I was scared. I truly thought I was going to die but was afraid of going to the ER because I didn't want them to think I was crazy. I wish I had gone while in California.

I made a deal with myself that I would make an appointment with my neurologist in January if I was still sick after Christmas. I scheduled an appointment. That week I woke up and felt fine, nearly canceling the appointment to see the doctor. At that point my being dizzy was the biggest issue; it was debilitating and frightening. The symptoms came back strongly the day before I went to see the Dr. It would be the first of many cycles but also the clue that led another doctor to Lyme disease nine months later.

At first I was diagnosed with Benign Positional Vertigo, which is caused by ear crystals shaking loose. The test for this is tilting your head back to see if it gets worse. It did. But the exercises didn't work. So an MRI was ordered. While I passed the muscle tests with the neurologist and chiropractor I was seeing, I dropped things a lot (more than normal), so I worried a lot about MS, especially because I was told that mid to late 20s was typical for age of onset. With every click on the MRI machine I just hoped that I didn't have MS and if I did that the test showed it. I didn't want to be sick, but I also wanted an answer to why I felt so badly.

At the neurologist's office I brought a huge symptom list with me and detailed exactly how and when I got each symptom, which showed a clear cyclical pattern. I had a history of migraines, so my neurologist said it was either migraines or Lyme. I started meds for migraines and physical therapy for my dizziness. I was tested through IGenex and eventually received an official diagnosis from those tests. I also had a yeast problem and probably bartonella.

Every day I feel like I am going to die.

It's pretty difficult to sleep at night when you are afraid that you won't wake up in the morning, leaving your 18-month-old motherless. And in the "capable" hands of your husband who, when it's his night to make dinner, relies on boxed Mac and Cheese. Without me he'd probably revert back to Kraft, leaving organic Annie's behind.

Neurologic disorders are their own beast, I think. The symptoms are literally all in your head, and yet you feel them everywhere. My feet tingle. Sometimes I can't stand the feeling of pants on my legs because my nerves are hyper sensitive. My hands go completely numb some nights. Just a minute ago I was pretty sure that my tongue had stopped working and that maybe I was having a crazy allergic reaction. When I touch the skin of another person, sometimes it feels like it's burning.

I've been to the ER too many times this last year. At first it was chest pain, which was treated with Ativan. Turns out I have chest wall inflammation. Advil was much more helpful than the anxiety drugs, but I'm a woman so must be "crazy." Then I went to a doctor for what felt like the flu in the height of the swine flu outbreak. She listened to my heart, which had become tachycardic. She thought I was having a thyroid storm. Nope. Just Lyme disease. (It would have been helpful to know it was Lyme then.)

Lyme is also extra special because it causes psychiatric changes. Remember IRENE from the Real World? Don't you wish you were my husband? I swing between uncontrollable anger to lying on the floor thinking about death. Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn't figure out why there were links to suicide prevention lines. I get it now.

And then there's the memory deficits. I've always had a really sharp memory. My mom hates me for it. Pray that your children don't remember every phrase you ever uttered to them! I'm also a word freak and can play some serious Scrabble. But now, I have trouble remembering the word for "countertop" (yep, happened the other day). I don't know how to spell things. And I often just stop in the middle of a conversation unsure of what we were talking about or what I was saying or what I want to say next.

My stomach hurts. My knees ache. I lose my sense of taste sometimes. I can't sleep, and yet I'm profoundly exhausted. I get night sweats. Bright lights bother me. And low lights bother me even more. I feel jittery and can't sit still. But I'm too tired and sore to move. And I constantly feel like I've just gotten off a Tilt-A-Whirl, that's how dizzy I am.

This is my life. I don't tell you this for sympathy. I tell you because it's real.

Brooke Linville, ID

A Decade of Symptoms--Suzi Overstreet

2011-05-10T01:00:00.000-07:00

In the Spring of 1999 I was first exposed to Lyme (so the doctor thinks). The bite was on the top of my head, and when I went to remove the tick I was not able to get the head. In fear of Lyme Disease or infection I went to my doctor immediately to get the tick removed. What a process. It took 3 nurses and a doctor to scrape my scalp in an effort to remove the tick's head. I didn't notice any symptoms for about 6 months.

My husband and I were married in October of 1999 and soon thereafter I started having severe stomach problems. I was sent to the hospital a few times for extreme pain, and the diagnosis was pretty grim. I was told that I had a very severe case of Endometriosis and that it would be potentially difficult to have children. That diagnosis was very difficult to hear.

I began to work for a chiropractor in the Spring of 2000, where I was given consistent adjustments. The x-rays showed severe misalignment of my neck to the point where the vertebrae were bending the wrong direction. The x-rays also showed Scoliosis progressing in my lower back. The adjustments helped my pain tremendously.

As the year went by my stomach continued to be the major issue. In the winter of 2001 the pain in my stomach started to worsen. I was once again sent to the ER, with concerns that it was my appendix. Test proved otherwise and again it was a big mystery.

I became pregnant in December of 2001 but miscarried within weeks. I became pregnant again not too long after but suffered during the entire pregnancy with terrible morning sickness and back and neck pain. I figured these ailments were just part of the day by day hormonal changes in pregnancy so I took no concern for them. My son was born in October of 2002. I seemed to recover very quickly from the birth and my stomach issues faded a bit. However, the pain in my back and neck continued to worsen.

In 2003 I started having problems with my wrists. They said it was carpal tunnel. Later tests showed multiple cysts in my right wrist, making it very difficult to perform every-day tasks. My doctor prescribed a few different anti-inflammatory medications, but it didn't seem to make much of a difference for me, so I stopped taking them.

In the summer of 2003 I became pregnant with my second child and again suffered tremendously with terrible morning sickness for 7 or 8 months out of the entire pregnancy. By the 8th month, I broke my tailbone and was bedridden for the majority of the last month. The birth was quite easy except for the 33 hours of labor. I recovered quite well with the exception of the broken tailbone, and I still suffered from severe pain in my neck and back. I started thinking of some alternative ways to relieve my pain.

In the early months of 2004 I noticed a terrible sore behind my right leg. It started as a dry patch of skin but eventually became very oozy. I went to a dermatologist, and they couldn't figure out what it was and left me with no answers. Soon after, I started getting a rash on the insides of my elbows and behind my knees. I took one more trip to the dermatologist and was sent home with a steroid cream. The cream did not work and the sore and rashes lasted a good 2 years.

I again started going to a chiropractor for the pain in my back and neck. I received some relief from it all but it would always return with a vengeance. My doctor then prescribed Percocet for the pain. I continued with chiropractic care and some massage therapy sessions. I didn't take the Percocet.

In September of 2004 my five-month-old (at the time) son was diagnosed with a severe case of RSV and was in the hospital for over a week.

In 2005 I found that I had been bit again by a tick which ended up in an infection (Celulitis). It was extremely painful. A full month's dose of antibiotics and pain killers and the infection was finally gone. This was the first time I was tested for Lyme Disease, but the test came back negative.

From this time until my daughter was born in 2006, I was sick with different ailments nearly every other week, and my doctor and midwife couldn't figure it out. They figured it was just a reaction to the hormones of the pregnancy. By my 9th month of pregnancy I somehow broke my tailbone yet again and was told to take it easy because of the pain. After this birth, I was not able to recover nearly as easily. I couldn't find the energy I had after the first two pregnancies and of course, the pain in my neck and back were still there. Serious back and neck pain, swelling and migraine headaches became the norm.

In the summer of 2007 I was diagnosed with Fifths Disease, which attributed to the arthritis pains I was receiving in my back, neck and wrists. After the initial Fifths reaction I started having chronic pain in all of my joints, mainly in my legs and neck. It was more and more difficult to stay standing or sitting for long periods of time. The initial Fifths Disease reaction subsided within 2 weeks; however some arthritic symptoms never went away.

During the year of 2008 I was typically sick on and off and was always complaining of something. I kept telling my husband that I needed to get my blood checked because I was never feeling good and always tired.

I started feeling signs of Fibromyalgia during the early months of 2009.

In February of 2009 I went to my doctor about a cat scratch that seemed to be infected. He diagnosed it as Cat Scratch Fever and put me on a high dosage of antibiotic along with giving me a Tetanus shot.

In March of 2009 I found yet another tick. This time on my back. It was very small, and I thought it was a freckle. I was told later that it was a nymph. From March until June I missed many days of work due to illness. I started feeling severe sharp pains in my knees and it was very difficult to bend them or walk up inclines. My legs would burn to the point where I needed to sit down. I took 5 trips to the ER between June 1 and July 2nd. Each time, the doctor would say there was nothing wrong me. On my fifth trip to the ER I was given an MRI, CSCAN, and multiple x-rays, which came back completely clear. But I was still feeling terrible.

While at work one day in early June of 2009 I suffered the worst headache I had ever experienced. It literally put me on my knees. Another girl I was working with had to help me back up and to a place where I could sit down. I couldn't stand up and had to keep my head down between my knees. From this point, I knew there was something really wrong. I took myself to the ER, which would be my fifth trip in a few months. The ER doctor got so frustrated that I was back and that he couldn't put a finger on what I was suffering. He threw a prescription of Antivert in my face and said, “Here, this will help you,” Antivert is a prescription for Vertigo, something I knew I did not have. He then told me not to come back unless I was really sick.

My co-workers and bosses started noticing that I was forgetting a lot of things at work. They could tell something was wrong, and in fact, they thought I was pregnant because my brain wasn't working, and I was always complaining of pain and illness.

One more trip to the ER in late June, and I was finally given a diagnosis of Lyme Disease. I thank the Lord I had a doctor that actually was aware of the symptoms of Lyme. The ER doctor took blood and told me that I would receive results in about a week. Within a few days I got a call from the hospital telling me that in fact the Lyme test came back positive.

I went to my doctor on June 26th, and he did a very intense clinical exam of my extremities and asked a lot of questions about my condition. It wasn't until the end of my appointment that he confirmed that I had Lyme Disease. He told me that he thought they caught it soon so a 14-day dosage of Doxycycline would cure it. He couldn't have been more wrong.

My sister-in-law was getting married July 3rd, and I was supposed to help out with the flowers and photography. The night before the wedding all of the girls starting putting together bouquets for the wedding. I couldn't think. I couldn't get my mind to do anything. I finally had to quit working. It was so embarrassing. I was tired, sore, and “mindless.”

The wedding was outside. and I wasn't told that I was not to be outside in the sun while on Doxycycline. I was out in the hot sun for 4 hours taking pictures and nearly passed out near the end. By the time I got inside, I realized even with tons of sunscreen, the sun had fried my skin. I was fluorescent pink!

I spent July 4th relaxing and trying to get myself to feel better, but I couldn't get myself to stand up for very long. My husband drove us to see the fireworks in Roanoke. I was feeling really bad at this point.

I had to drive myself to the ER for the 6th time on July 5th. I was rushed straight in, and the ER doctor this time suspected Spinal Meningitis. He ordered many blood tests and a spinal tap to be sure it wasn't Meningitis. He also wanted to see if the spinal tap would show Lyme Disease in the spinal fluid. During the lumbar puncture (spinal tap) the doctor told me that my spinal fluid was clear and that was a very good sign. We eventually got the test results back and they were negative for Meningitis. We had to wait to see if Lyme was found.

Because of my condition I had to quit my job as a manager of a restaurant, and my husband moved me four hours to Northern Virginia to be with my family. We were not sure what the next steps would be, but we knew I would be better off with the help of my parents. My children stayed with my husband's parents while my husband packed up our house and moved us. I was in bed for 4 months. I felt like a vegetable. I couldn't walk, think, or even talk right. I would slur almost every sentence that came out of my mouth. Helpless.

By this point I started having severe neurological symptoms and started losing memory. I had to quit doing graphic designer work because I had forgotten how to do it. I couldn't even save a file. It was amazing to me that I could lose knowledge of something I had been doing for over 13 years. I didn't expect to get it back.

I found out about a Lyme Disease conference being held at the Loudoun Chamber of Commerce (due to large populous with Lyme) in a local paper. I had to force myself out of bed and to the seminar. When I got there I noticed a friendly face. My husband is a coach for high school varsity sports, and the father (who is a medical doctor) of one of his players was the speaker at this conference. I had no idea that he knew anything about Lyme. I talked with him after the seminar, and he asked me to come see him in his office the next day.

During my visit with my new doctor, he took a comprehensive history of my symptoms down and prescribed a full 30-day dose of Doxycycline. He also gave me a natural supplement called Cat's Claw that was known to help those with Lyme Symptoms. This was the middle of the summer. He told me that I had to stay out of the sun or my symptoms would worsen with this medication – something my old doctor forgot to mention.

While on the prolonged dosage of Doxy my symptoms worsened. My doctor's wife, a good friend of mine, invited me to another Lyme conference. I told her that I was too weak to go but that I would try. She arrived at my house and I could barely make it into her car. She told me to go back inside, but something told me that I needed to go to this seminar.

When I arrived at the seminar and realized that I had to go up a flight of stairs I stopped in my tracks. I hadn't been up stairs in months. My friend stood behind me and made sure I made it up the stairs. I found my seat and immediately I was greeted with a glass of water. There was something about that water and I couldn't get enough. During the 2 hour seminar, I drank close to 20 glasses of water. Something happened in me and my pain went away. I couldn't believe it. I asked about what was in the water and they showed me the machine that it came from. They told me that it was called Kangen Water with a pH of 9.5. I left that conference RUNNING down the stairs. I couldn't believe the difference I felt. I didn't care about how much it cost, I wanted that machine. I eventually got one and I will never live without it.

The water ionizer unit is made in Japan and is a certified medical device in more than 200 of their hospitals. Each patient's room has one of these devices. The water has super anti-oxidant properties and is very high in pH (alkaline).

Another friend of mine learned of my condition and told me about a product that his father sells. It is called ________ [name removed at request of manufacturer]. It is has been known to help with diseases of all kinds, including auto-immune diseases like Lyme Disease. Because I was not working and we had accumulated over $30K in medical bills in less than a year (and we had to move our family) I was not able to afford these supplements. My friend's father offered to purchase a 5-month supply of the products for me. I couldn't refuse it.

When I received the products, I started taking them that very evening. The next morning I couldn't believe how good I was feeling. I was able to think clearly and I could remember how to do things. I knew that I couldn't stop taking them. I was also completely out of pain!

Between the Alkaline water and the _______ products I have been able to stabilize my symptoms and function every day. I started out with being able to get up and go for about an hour every day to now being able to get out for nearly 4 to 5 hours. I am still not up to par with how I used to be, nor will I ever be; but I am at about 80%. I can't express how thankful I am.

I just turned 30 and I look forward to getting back to myself in the years to come. I have a long road ahead and a complete life of changes in every aspect of my life. I thank God for allowing me to find the amazing products that have helped me so much and for giving me a little bit of my life back. I look forward to starting a new life with my family by my side. It is going to be a journey, but one I know I can manage, not on my own but with the help and support of amazing Heavenly Father and my husband and family and friends.

I just started reading a new book called the Alkaline Miracle for Weight Loss. It is about completely changing the way I eat. It's called the “Raw” diet. All raw vegetables and fruits. I am working toward starting this diet very soon.

Some recent entries to my journal:

Good days are gone for awhile...

Feb 12 2010

I think my good cycle has just ended...the pain I am experiencing is horrendous. Almost worse than ever before. My lower back feels like it is going to go out on me, my knees can't take any sort of bending at all, my hips ache, and the deep bone pain is nearly unbearable. I took a heavy pain killer last night for the first time in months. I have been trying to stay away from them as they make me feel like crap for days afterward, but I couldn't stand the pain anymore.

I woke up so dizzy this morning that I nearly threw up. It took me 3 hours to be able to actually sit up. I just had to close my eyes and curl up like a baby for the dizziness to go away.

I lean on the Lord for my strength and every day He continues to bless me. I may be in pain but it is nothing compared to what His Son did for me. I am so thankful my Lord and Savior Jesus Christ died for my sins so that I am assured one day there will be no more tears, no more pain, no more fears!

Thank you Lord for your blessings on me. Thank you Lord for this disease.

Pain, pain, go away......

Dec 28 2009

So, I woke up this morning, late as usual. From the moment I got out of bed my legs begged me to get back into bed. They hurt so badly! I can usually go most of the day without themgiving me much trouble but for some reason, today is the day they have decided to shut down. It's like having a pulled muscle everywhere on my legs! Talk about annoying.

I haven't taken pain killers in months because I know what the effect is on my body but I may have to resort to some strong ones today. I can't take it anymore. I am praying I can stay strong today. Lord, please help me.

Rough Road

Dec 06 2009

I've been suffering with some newer symptoms, I mean they are not NEW per se but I haven't dealt with them for quite some time and I don't like it. My head hurts. The pressure is intense and the fog in my brain is killing me. I am supposed to start on a new project for work...one which I was very excited about starting and now all I want to do is sleep. I don't want to begin anything new...especially when I am unsure that I will be able to finish it.

I am a singer. I love to sing and have been singing since I was 2. Recently it has gotten harder and harder to sing. My throat aches and my range has faded. What else am I going to lose?

I am thankful I have my life, my family, and my Lord.

Just Think

Dec 04 2009

You're here not by chance, but by God's choosing. His hand formed you and made you the person you are. He compares you to no one else--you are one of a kind. You lack nothing that His grace can't give you. He has allowed you to be here at this time in history to fulfill His special purpose for this generation.

God's ways are not our ways. He knows our every need and knows our hearts.

I am so thankful I belong to a Great and Mighty God who loves me and leads me along His path. Thank you Lord for loving me and giving me strength to endure each day.

Today has been rough. I'm tired and worn, all I want to do is get in bed and sleep. I don't want to get depressed so I try and focus on other things.

Did too much....yet hardly anything...

Nov 21 2009

The day started off once again being hard to get out of bed. I forced myself around 9:45 because I had to take a friend into town to get a few things at the store. I was late....not a surprise. Anyway, the rest of the day went rather well - I forgot my water bottle which is what gets me through the day - so not as well as it could have been.

I am quite tired tonight....worn out and my body and brain do not want to function...typical. My husband was nice enough to give our three kids baths and put them to bed. It's not easy being a spouse of a Lymie, I am certain....it's not easy being a Lymie.

I am thankful for another day and look forward to tomorrow. What will God bring my way? I am looking forward to a great church service, music, and message. Thank you Lord for my beautiful family and another day!

Today, the same as yesterday...and the day before.

Nov 18 2009

It was once again hard to get out of bed. I don't remember a day where I was able to wake up early free of pain...and actually able to think clearly. It's been too long. I am however determined to get back to those days...where I can wake up with my children and take them to school, go out with my husband and have fun. It's not all that easy anymore. God gives me only things He knows I can handle, and He knows I can handle this.

I started having a flickering in my head again, right above my right ear this time. I had this for years before I knew I had Lyme. It starts with this "fluttering" and then ends with the most excruciating headache imaginable. Once that starts, my brain doesn't seem to want to continue working so at that point, I stop.

I am contemplating going on disability because I can't work full-time anymore...very clear as of last week. I worked two full days and I had to take off 3 days to recover. I was just so tired and worn out, physically and emotionally.

Well, that is all I have for today, maybe I will be back tomorrow...if I remember - another thing Lyme has taken from me, my memory.

-- Suzi Overstreet, Virginia

The Surgeon Said "Oops"--Candice Mitchell: Part 2

2011-05-06T01:00:00.000-07:00

I woke up one morning and couldn't move.

I was in so much pain, head to toe, that my whole body was locked in one position. For 45 minutes, I was paralyzed. At this point, I was in a single dorm room by myself, on a raised bed. I couldn't reach my phone so I lay there for a whole 45 minutes until I could manage to move my arm enough to grab it. As I dialed my Mom's number, I tried to stand up, and that's when my heart rate skyrocketed, and the room began to spin. As I tried to explain what was happening without sounding scared, I noticed that my abdomen felt funny. While on the phone, I slowly traveled the mirror, and lifted my shirt to check out what was going on.

I tried not to have a verbal outburst after seeing what I saw. My ribcage on the left side was pushed out about an inch higher than the right side. Turns out my spleen couldn't take it anymore, and it blew up like a balloon. At the time, I really had no clue what a spleen was, or where it was even located, until it popped up and said, "Hello, I'm your spleen, and I'm really pissed off!" You'd think that'd freak me out enough to send me running straight home, but I actually stayed at school like that until the end of the week.

I believe it was three or four days, and things were continuing to get worse, and I could barely stand up. I didn't tell anyone, but I had missed every class scheduled that week. I finally called my Dad, and he rushed over to take me home. I haven't been back since. Upon coming home, I took a trip to the emergency room, where they were absolutely no help, yet again. They told me I probably had a nasty virus and that it had attacked every inch of my body, settling in my spleen. After one week of lying in my parents' bed, unable to walk or barely get to the bathroom, my Mom got me back to the office of the alternative practitioner I'd previously seen. He was rather shocked at the condition of my body, and knew exactly what to test for. This is when I got my first positive blood test. I was diagnosed with Late Stage Lyme Disease.

Chapter Five: An Uphill Battle

I celebrated at first. I thought, "Finally, I know what it is. I can treat it, get better, and move on with my life." Unfortunately, this has been far from the case. We initially tried an antibiotic protocol, but I only lasted ten days on it. I came to find out that treatment for Lyme is much like treatment for cancer. Your entire body becomes toxic. Because of this, I ended up in the ER, with frightening blood pressure and heart rate issues. That's when I began to have spells where I'd start to black out, and get stuck in between that phase between consciousness and unconsciousness.

On the tenth day, after lying awake for an entire night having seizure-like episodes, and after having had to be practically carried to the car after a doctor's appointment, I called it quits. Since then, I've tried a multitude of alternative treatments, some of which have sent me straight to the hospital, and others that haven't had much of an effect. Things began to snowball again one year after diagnosis, as my immune system began to become increasingly suppressed.

In May of 2009 I contracted an 18-day stomach flu. Shortly thereafter, I contracted what the doctors think was either viral meningitis or the swine flu, and my immune system was so confused as to what to do that instead of fighting the virus, it had an allergic reaction to it. With a fever of 103.5, I went into anaphylaxis. My throat and lungs began to close up, I broke out into a rash that covered my entire body from head to toe, and my lips and tongue swelled and blistered. We were in the emergency room every day for four days straight, because it just kept getting worse. All they could do was tell me to keep an epipen with me at all times, and if I stopped breathing to call 911.

Chapter Six: And The Surgeon Said "Oops"

After that, we decided that it may be time to try antibiotics again. I gave a few a shot, and endured hell for one whole month, only to develop autonomic seizures, dysautonomia, and chemical sensitivity. After finishing the bottles, I had such bad dysautonomia that I could barely stand up again, and my chemical sensitivity was so bad that I could no longer leave the house. We needed to take some sort of action, and my doctor was really at a loss about what to do. He decided to see what would happen if he just slammed my body with IV drugs, to try to knock out massive loads of infection.

He warned me that I'd become alarmingly sicker, but he promised that I'd come out on the other side. So the doctor set me up to have a portacath surgically placed in my arm (usually they're in the chest, but I have no fat there, just ribs!), which would run a catheter from my arm to right outside my heart, so we could infuse the antibiotics. Because of the dysautonomia and MCS that I developed, surgery was going to be quite a tricky task. I opted to be awake during the surgery, and I opted out of the morphine. This meant that I only had local anesthesia and a small dose of Ativan to keep me calm while they cut me open and threaded a tube to my heart.

This is something that I probably won't be signing up for twice. The surgery seemed to go fine, until the surgeon left the room and it was time to get me off of the operating table and onto a bed to be transfered to recovery. The minute they tried to move me, all hell broke loose. My heart started beating irregularly and my heart rate shot up to 145, and any time they tried to sit me up I'd have pains and unusual sensations surge through my chest. They sort of scooted me onto the bed anyway though, and transfered me to recovery.

I lay there for two hours, while nothing improved. They tried to tell me that it was "probably normal," but I insisted that though I feel like crap on a daily basis, it's usually not THIS bad. They decided to xray me just in case then, and upon viewing the xray, the surgeon said "Oh my God, how'd that happen?" There's one word that you never want to hear while in surgery. It's "Oops." There are also three words you probably don't want to hear either: "Oh My God."

It turned out that instead of the surgeon threading the catheter TO my heart so it could sit comfortably outside of it, he accidentally lodged it deep inside of my heart, where it certainly was not meant to be. So, I had emergency surgery (awake) to have the port removed, and at that point, I vowed to never have elective surgery again. I now have scars on my arm to remind me why.

Chapter Seven: Just The Beginning

That brings me to where I am today. I'm treating with a new practitioner, who is using a combination of alternative and conventional therapies to get me well. It's going to be a long, trying road, but I know he can get me there. I still can't leave my house yet (aside from a trip to the doctor), but this wonderful practitioner has gotten me to the point where it's at least comfortable to sit in a chair again. I no longer feel like I'm dying. I know this doesn't sound like a lot, but for me, this is huge. I have the utmost faith that I can get through this. It's just going to take a whole lot of strength, patience, and optimism. This is truly a humbling experience.

At times it's hard to see the light at the end of the tunnel, and to focus on what's important, but at the end of the day I still go to sleep and thank God for every day that he's given me, and for every breath that I take, even if it's a labored one.

The biggest lesson I've learned is that it's really the little things in life that are the most important, and that if you focus on those things, you can find the positive aspects of your life no matter what the circumstances are. I may not be able to leave my house, I may have to eat the same liquidy foods everyday, and I may be stuck lying on the couch, I may have a list of 57 symptoms, but I'm still optimistic. And one day, when I'm back out in the world, truly living again, nothing is going to be able to bring me down.

So, on that note, I think I'll end. Please forgive me for how long this post is, and thank you so much for bearing with me through it. But truth be told, it's really just a snippet of what I've been through. If I just reach one person, or educate one person, or make just one person smile, then my mission is accomplished.

Candice Mitchell, California