Monday, December 19, 2011

Running on the Hamster Wheel--David Skidmore

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

Friday, December 2, 2011

Rory Pronk--His Father Tells the Story

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

Tuesday, November 29, 2011

No Boundaries--Sarah Lamando

Sarah Lamando was interviewed by the administrator of 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...

Tuesday, August 23, 2011

23 Doctors & 23 Opinions--Lisa Buffaloe

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.

Friday, August 19, 2011

Only Half of Me--Sara Hesley: Part 2

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.

Tuesday, August 16, 2011

Only Half of Me--Sara Hesley: Part 1

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.

Friday, August 12, 2011

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

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.

Tuesday, August 9, 2011

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

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.

Friday, August 5, 2011

Remembering a Life I Once Knew--Martha B

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.

Tuesday, August 2, 2011

Unbalanced--Randy Gibson

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.

Friday, July 29, 2011

Another Battered Soldier--Holly Heisey

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.

Tuesday, July 26, 2011

A Series of Miracles--Victoria Bylin

"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.

Friday, July 22, 2011

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

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.

Tuesday, July 19, 2011

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

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.

Friday, July 15, 2011

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

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

Tuesday, July 12, 2011

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

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.

Friday, July 8, 2011

Be Your Own Advocate--Angela Coulombe

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 or for more details of my marathon experience. 

Angela Coulombe, Maine

Tuesday, July 5, 2011


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.

Friday, July 1, 2011

Living on Prayer and Team Work--Jessica Sundeen

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.