Friday, June 24, 2011

Happy to Be Living Again--Heather Levine

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.

Tuesday, June 21, 2011

It's All In Your Head--Ashley Bouck

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

Friday, June 17, 2011

A Laundry List of Symptoms--Kim Trick

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

Tuesday, June 14, 2011

Never Give Up--Carisa Gorak

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

Friday, June 10, 2011

A Work In Progress--Renee Dahlen

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.

Tuesday, June 7, 2011

Too Many Skeptics--Jim Strahan

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

Friday, June 3, 2011

The Disease From Hell--Kacy Henry

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.