Stories

***For new stories, please scroll down towards the bottom.  The date of submission will be posted next to the name.***

March 2, 2011 ~ Connie Strasheim
I began experiencing symptoms of Lyme disease in the early 1990's, but it wasn't until September 26, 2004, that I completely "crashed" overnight with an abundance of symptoms that would continue for many years. Insomnia, fatigue, severe heart palpitations, brain fog, anxiety, back and neck pain, stomach pain, depression and dizziness were among the symptoms that assaulted me on a daily basis after September 26th, 2004. My "crash" was precipitated by long workdays in my job as a flight attendant for United Airlines and by other stressful events in my life. One year and 14 doctors later, I was diagnosed with Lyme disease, but it would be many more years before I would find a doctor who could competently treat it, because Lyme disease is a political disease that is incredibly complicated to diagnose and treat. Doctors haven't been taught that chronic Lyme exists, and even if they know about it, they haven't received proper training about how to diagnose and treat it. Tests are incredibly flawed and miss up to 60% of cases. For more information on the politics and difficulties in diagnosing/treating Lyme disease, I invite you to read P. Weintraub's Cure Unknown or watch the documentary, "Under Our Skin."

I visited many doctors in an attempt to find one who knew how to treat chronic Lyme, and in the meantime, I read every book that I could find on the subject and began to self-treat with natural remedies. By early 2006 I finally understood what I was up against, and I intensified my research efforts even more. I began a blog on Lyme disease that same year and in 2007, a publisher found my blog and asked me to write a book about what I had learned. I ended up writing not one, but two books, on Lyme disease, over the following two years. The second was a doctor interview book that has been the best-selling Lyme disease treatment book on the market since its publication in September, 2009. More information on that book can be found at: www.lymeinsights.com and www.lymebook.com.

I believe my second book has been so successful because good books on Lyme disease treatment have been few and far between, and when I realized that better information was sorely needed by the Lyme disease community, I searched until I could find 13 doctors competent in treating Lyme who were willing to interview and share their treatment protocols. I wish I had had their information back in 2004, but hopefully my work will save thousands from the same long healing journey that I have had to go through.

In 2009, and after five years of natural treatments, I realized that I would not fully heal from Lyme if I didn't also do some long-term antibiotics. I resisted this path for a long time because antibiotics weaken the immune system and harm the body in a number of ways, but I realized that the natural treatments wouldn't be sufficient for me. So in January, 2010, I found a Lyme-literate doctor and began taking aggressive doses of multiple oral antibiotics along with herbs and other nutrients, and by November, 2010, my Lyme-literate doctor declared me free of the infections via ART (autonomic response testing) which can be more accurate than lab tests when done by a competent practitioner.

As of March, 2011 I am doing relatively well, although having had the infections for more than 15 years (the minor symptoms started about 15 years ago), I believe that the Lyme has damaged my neuro-endocrine system and I still struggle with moderate chronic fatigue due to adrenal insufficiency and HPA dysfunction, pain in my hip and back due to cartilage damage, anemia due to babesia (one of the multiple co-infections implicated in Lyme) and POTS (postural orthostatic tachycardia syndrome) due to hormonal imbalances and nervous system issues. I am, however, much better than before I was thoroughly treated for the infections. I am convinced that chronic Lyme disease is a major contributing factor, if not the main cause, behind many chronic and degenerative diseases, including MS, CFS, Parkinson's, Fibromyalgia and more.

It is my hope that the AMA, FDA, IDSA, doctors and insurance companies would wake up to the truth about this disease as it is destroying the lives of thousands, if not millions, worldwide. I lost my condominium, savings, 401K, career, and even some friends as a result of what I have gone through. I spent nearly a decade of my life on treatments, tears and living on my sofa, but thankfully, I have started to regain much of my former life. But many people I know have not been so lucky, thanks to the ignorance and arrogance of the FDA, AMA, IDSA and doctors who are unwilling to think outside of the box. May God humble us in our search for a cure and open the eyes of the blind to the reality of chronic Lyme disease.
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March 2, 2011 ~ Melodi A. Young
My story is somewhat backwards, which means that when I was finally diagnosed, we realized I'd had lyme for many, many years, possibly even since infancy.  I was born in the late '60s in Birmingham, Alabama, the youngest child of a Baptist minister.  When I was 6 months old, we moved to northwestern Pennsylvania, where Daddy pastored a church he'd helped to plant.  Shortly after we moved, for a reason completely unknown at the time, my thyroid gland suddenly stopped working and my development slowed to a near stop.  Mother went from doctor to doctor for the next 3 1/2 years, searching for help and for answers.  Finally, she found a doctor who immediately spotted the problem with the thyroid and started me on thyroid replacement.  No one questioned what made it stop.  Hardly anyone in the early '70s, at least in our area, knew or discussed Lyme disease, let alone connected it with thyroid and other endocrine issues.  We certainly never heard of it.  We eventually moved back to Alabama and I started school and lived a fairly normal life, although I experienced many things that I thought were normal but found out later were not, including cognitive issues and weird neurological symptoms as well as medical issues.  But none of them were considered severe enough for my parents to really pursue.  Lyme is well-named "The Great Pretender."

Fast-forward to my college years.  In summer of '92, as an engaged 5th year senior, I spent two weeks in Maryland, visiting my fiance'.  When I'd lived there for a summer 2 years before, I'd finally heard of Lyme disease, but it was touted as extremely rare and "way out there."  Someone I knew that summer had contracted it from a tick bite she'd picked up in a Baltimore city park.  But I still never had one thought that I could get it.  Less than 2 weeks after I got home from my visit, my health went down the toilet, almost overnight.  I experienced flu-like and cold symptoms, sore throat, fever, achiness, indescribable exhaustion... you know the drill.  Well, the cold symptoms passed but nothing else ever did.  I could hardly stand up.  I was renting a room but my senior citizen landlady, a dear woman, was away, so I was shifting for myself.  I couldn't cook and I nearly passed out in the grocery store, as well as at other places.  I developed disturbing neurological symptoms, cognitive difficulties and emotional "rages" that came out of nowhere.  Finally, I called my parents and asked them to bring me home and take me to the doctor, which they did.  I was tested for Mono, and of course it came back negative.  My family doctor was the laziest excuse for a doctor I've ever seen (there are many reasons for this besides my own experience, but he never lifted a finger to find out why a fairly active and healthy 23 year old suddenly could barely function and wasn't getting better).  It was time to begin student teaching and I was at rock bottom.  But I soldiered on.  By a literal miracle, I made it through and graduated.  But it was an awful semester.

The next spring, we married and I moved to Maryland with my husband.  The next several years were a long line of one "stress" illness after another - going from doctor  to doctor, running test after test - along with unexplainable fatigue, pain, depression and so on.  In '98, I received a diagnosis of what I thought was finally the answer - fibromyalgia.  Hmm.  It never seems to occur to doctors that giving a name to symptoms doesn't explain what causes them.  Still, I slowly learned to cope and by the spring of 2008 was actually feeling better than I'd ever felt.  My endocrinologist (thyroid doctor) had detected a severe Vitamin D deficiency which he was treating with a course of mega doses of Vitamin D.  Turns out, that is a glaring marker for Lyme. Hmm...never occurred to him either, what might be causing such a marked deficiency.  Still, I must give him some credit in retrospect - he was the least surprised and least threatened by my Lyme diagnosis and treatment (yes, I used the word "threatened"  See 2 paragraphs down).

In the spring of 09, my husband and I took a little getaway to central Virginia for our anniversary.  We'd had a stressful few months (including his dad's death) so we craved some time in the woods.  I personally craved some time by a rushing mountain stream.  And that's just what I got...and when we drove home, I took along an invisible hitchhiker - a tick in lymph stage, carrying Lyme and 2 other co infections - Babesiosis and Bartonella.  I had inspected myself in the shower after my hike and found nothing.  I remember worrying about poison ivy when I left the path to go sit on the rock beside the stream, but I never even thought of a tick. 

Two weeks later, what I thought was poison ivy or oak came up on my left shin, but it never seeped.  It started as one raised bump and quickly became a patch that covered most of my shin, from just below my knee to my ankle.  It didn't immediately take on any kind of target shape, but it eventually did become circular or oval with an open area in the middle.  When I finally sought my general MD's help, he said it was a follicular irritation and prescribed a steroid cream and amoxicillin (just in case there was infection there).  He totally dismissed any suggestions of Lyme.  My chiropractor, who'd seen that it wasn't going away even after 2 months, strongly advised I get tested anyway; I did.  The test came back negative (as so many do - Lyme testing is extremely flawed and undependable).  My general M.D. was not prepared to listen to any more about it.  Meanwhile, I was beginning to have some disturbing symptoms, many of them neurological.  I began researching Lyme extensively and became increasingly scared and upset with the stone wall I was getting with my general M.D.  A friend, whose husband has battled Lyme for years, sent me lots of information, and in that information, on a You Tube video of a news story about Lyme Disease, I found my Lyme Literate MD (LLMD).  And I got an appointment with him in [a miraculous] 10 days!  (I eventually had to "fire" my regular doctor and find another one who wouldn't persecute me for seeking treatment for Lyme with a specialist - not an easy task!)

That was 20 months ago.  I am still in long-term treatment, using various low-dose oral antibiotics along with homeopathic remedies.  I know many Lymies wind up going to I.V. antibiotics.  That may come, but I'm taking one step at at time.  Right now I'm reacting so strongly to the low dose oral antibiotics (Herxeimer reactions - where the toxic die-off of the bugs overwhelms you, causing worsening of symptoms and making you very sick), I can't imagine what the reactions would be on I.V.  Although I haven't had some of the horrific things that many Lymies deal with day in and day out, still it has been very, very hard, and it's still a long, uphill battle.  I don't know how long it will be.  But I'm not turning back or giving up. 

I couldn't have done this and I couldn't continue without the the strength my God gives, or the loving support of my husband and our friends and church family.  Folks don't always understand; sometimes even those closest to me forget that just because I "don't look sick" doesn't mean I'm not.  People get tired of it; they want this to be done.  Well, yeah - so do I!  ;-) There are those in my family who behave as though it's a non-disease and it's all in my head.  This is hurtful but I cannot focus on it.  It's their problem, and fortunately I live far enough away that it doesn't come up much.  Here at home, it can be a little harder.  Because I'm too dizzy and easily disoriented, I cannot safely drive into Baltimore (45 minutes, at least) to take my sweet Mom-in-love to her doctor appointments.  I really wish I could.  So I'm regarded as someone who doesn't pull her weight and uses Lyme as an excuse.  That's okay.  Unless they get Lyme, they won't "get it."  And I don't want them to get it.  I don't want them to have to deal with this kind of illness.   We haven't been able to have children and right now adoption is not an option either.  We have a precious goddaughter who was adopted by dear friends two years ago (right before I was re-infected), but I don't get to spend the time I want to with her; I'm not physically able.  I'm praying that will change soon.

Treatment is expensive.  Because of a lot of political high jinx (including what I think are criminal conflicts of interest within IDSA and the CDC), Lyme disease is a pariah and insurance companies balk at paying for treatment or refuse it altogether.  Some of our country's best LLMDs, who've sacrificially served their patients for decades, have been attacked and had their medical licenses revoked because of these greed-driven politics.  It's a disgrace to our country.  Our LLMD, like many others, does not participate with insurance, for these reasons. But he's wonderful and the treatment I receive in his office and by his staff is well worth it.  We've gone into debt for my treatment and it's adding up.  But I am thankful that so far the oral antibiotics have been covered and I'm praying for that to continue.  If it doesn't, we'll cross that bridge when we come to it.  One thing I've learned through this journey is that "My Shepherd will supply my need."

My husband and I are making plans for a big trip when I get better ("better" being defined as able to travel and do some light walking and sight-seeing without crashing that day for weeks afterward).  How we'll pull that off, financially, I'm not sure, but we're planning to either tour the western national parks or go to Europe (hopefully including Ireland!).  It helps to have something special to look forward to, to think about when the nights are long and you're sick of being sick!  And it helps to share our stories with one another and encourage one another.  I hope this story will be of benefit to all who read it.
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March 3, 2011 ~ Marti
As I sit with pen in hand, weighing upon how to give an undivided 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, and I recollect a life I once knew, recalling what it felt like to run three miles a day, to have freedom to socializing with friends at a favorite neighborhood restaurant, to freely eat without thought of the biological aftermath I may face, and to live without annoying and debilitating symptoms every moment of each 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, having married a wonderful man at St. Mary’s Cathedral in Memphis, TN, 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, GA. 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 in my plight. 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 nevertheless and successfully ran the 6-mile race. Once I returned, the doctor’s visits began. I was diagnosed with Irritable Bowel Syndrome approximately eight times by different doctors, underwent fourcolonoscopies , prescribed a multitude of pharmaceuticals, and, of course, given the run around when I mentioned other possibilities. A year later, I was lying on an operating table and was diagnosed with stage-fourendometriosis , now believed by many gynecologists to be an auto-immune disease, and it had adhered to my colon. Subsequently, during an eight-month period, I went through threelaparoscopies , forced menopause, and more pharmaceuticals before undergoing a full-hysterectomy, all of this while working a full-time job that required 60+ hours a week. I look back and know it was the strength God gave me to get through it all.

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

Three years after my hysterectomy in 2007, I began experiencing chronic burping spells in which I belched every ten minutes— one can only imagine how annoying and embarrassing this was. The three spells I experience within a year’s time, lasted up to a month each before resolving themselves. In 2008, shortly after eating a meal, I became very ill. I felt a heavy pressure in my stomach and all through my esophagus, not similar to the pressure one would feel with acid reflux or indigestion. Even drinking water exacerbated my symptoms. This lasted for seven days before subsiding. I began experiencing these episodes more often until it was occurring after every meal. Sometimes it simply took a sip of water or couple bites of food to get the symptoms rolling; other times it took nothing at all. At the age of 37, when my average weight should have been 115/120, I had lost 57 pounds in less than six months arriving at 93 pounds. Food had become my enemy. It was frightening to look in the mirror wondering if I was going to make it, and how I was going to reverse my weight loss.

In July 2009, I developed bladder pain that was ruled out as a bacterial infection, and was prematurely diagnosed as intestinal cystitis. After a year ofgastroenterologist , urologists, exams, tests, labs, x-rays, medications, thousands of dollars spent, and a lot of prayer, I was feeling blue and hopeless. Prayers can be answered when you least expect them; a friend of mine encouraged me to visit her doctor who was able to diagnose her at a vulnerable time in her life. During my initial visit, he sat me down in a 1950’s examination chair, felt the temperature of my nose and feet, looked into my throat, and listened to my medical history. I thought to myself, “What am I getting myself into?” Within thirty minutes, he was convinced I had somehow contracted a stealth infection. I was happy to have a possible diagnosis after being told by mygastroenterologist & urologist that they felt my symptoms were untreatable and incurable. As more testing began, I gained hope, and then came the verdict— My LymeIgenex test results came back questionable, but because of the number of bands that came back positive, my doctor was suspicious that I may have contracted Lyme. He sent me to anLLMD near our area who clinically diagnosed me as having Lyme. A second test came back positive for Lyme-fighting antibodies. Lyme does not discriminate, nor is it selective; it feeds where you are weakest and attacks. My endocrine system was where it chose to settle. MyLLMD started me on antibiotics, but seven months later, I had not made progress, and we discontinued antibiotic treatment. It was then, that God lead me to anaturopathic doctor who resided four hours away. funny A month after my initial visit with this doctor I found out that the health department closed down myLLMD’s practice for failing to adhere to the four-week treatment the CDC allows.

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

I finished my final lab test requested by my naturopathic physician and received the results on June 25, 2010. To the untrained eye, I would have to estimate that I have many issues to deal with, hormonal imbalances, pathogens, bacteria, allergies to milk, soy, eggs, and gluten, possible roundworm and fungal growth. You would think that I would be distressed by what I see on my reports, but I am actually relieved. Finally, a test that came back positive! I am eager continue my journey as I begin alternative treatment for Lyme. I believe that this journey will make me stronger and one day I will find the freedom that I so desperately crave. God is with me, and I believe that one day I will be healed.
Blog:  http://mylymediary4me.blogspot.com/
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March 3, 2011 ~ Candice
Yesterday afternoon, as I stood in front of the kitchen counter in my mismatched pajamas, pureeing my daily liquid lunch of black beans and brown rice whilst popping a handful of pills, I paused for a moment. I thought to myself, "How the heck did I get here?"

It's a very good question that I'm sure many lyme patients ask themselves from time to time. Late Stage Lyme Disease has a funny way of turning your life upside down in such a way that it becomes barely recognizable. I'd even go as far to say that for some of us, it wreaks such havoc on our bodies that we tend to look in the mirror and wonder, "Who is that?".

Well, in light of Lyme Disease Awareness Month, I've been asked to share how exactly it is that I got here. This is quite a challenging feat, because I often wonder it myself. You'd think that the life of a chronically ill person would be dull and monotonous, and while sometimes it is, we're also on a journey like no other, and we tend to experience things that some people will never experience in their entire lifetime. If you're interested in hearing about just a portion of it, please bare with me while I reveal what it's like to be a late stage lyme disease patient, and how it is that I got where I am today.

Chapter One: The Subtle Beginning
I didn't know it yet, but for me, my journey with Lyme Disease began in the 6th grade. People joked that I should probably consider becoming the next "Bubble Girl", because I started catching just about any infection that blew my way. It actually became rather disturbing, because I began to pick up some off-the-wall illnesses that your average American teen doesn't usually get. I can't tell you how many times I'd been asked "Have you traveled outside of the country lately?". When I'd reply over and over again with "No, I haven't.", they'd begin to ask me "Are you sure?". I almost felt like laughing. "Oh yea, Doc, I totally forgot, I travelled to Japan for some fresh Sushi last Thursday night."

When the digestive issues began, it was all downhill from there. I'll spare you the gritty details, but essentially, my gastrointestinal system shut down. It kicked in and "functioned" about once a month. Enough said. It began to get harder and harder to eat, which was both confusing and embarrassing as a pre-teen girl. I'd go to the doctor and get xrayed, and the doctor would say "Wow...I don't usually see this, and if I do, it's in very elderly patients. There's no room left for food in there.". But he didn't do anything about it, until it was too late.

By High School, all sorts of rumors had begun to fly around about me. My weight fluctuated based on how my digestive system was functioning, as did my appetite. Often times it was hard to get through lunch, and of course, gossipy teenage girls didn't let that go unnoticed. I was too humiliated to say anything though. I mean, a teenage girl really doesn't want to stand up on the bleachers and announce that her insides are broken. This is when I made my first social mistake when dealing with chronic illness. I let the rumors fly, because I almost felt more comfortable with them thinking those things were true rather than knowing the truth. The truth wasn't glamorous.

Chapter Two: Doctors Don't Always Know Best!
I'm not quite sure what happened when I turned 16. Maybe it was a second tick bite, or perhaps it was when I contracted one of the secondary infections that my body has come to collect. But after returning from camp in the Santa Cruz mountains, I came down with "flu-like" symptoms and the digestive dysfunction reached its all-time peak. 4 days later, we flew to Hawaii, where things continued to snowball. I remember thinking that my ear drums were going to implode as our plane landed, and I distinctly recall laying in a crumpled ball on the hotel room floor that night, clutching my stomach. It felt like someone had pulled the plug on my internal bathtub of energy, and like my energy was slowly draining out.
Upon arriving home, we went back to the doctor. This is when I became a human guinea pig. They threw just about every digestive related drug (that you now happen to see on those lawsuit commercials) at me. They told me that I needed to get more sleep. I needed to "wash my hands" and "drink plenty of water". I wish life were that easy. They made me think that it was normal to feel like I was walking around with lead in my pockets and bricks in my shoes.

After conventional medicine had continued to fail us, we decided it was time to seek out some help from an alternative practitioner. He was wonderful, but I was an incredibly complicated case. He helped us uncover that I had a boatload of food allergies, which proved to be one of my greatest challenges. As we began eliminating the foods that I was allergic to, my digestive system began to change a little, but frightening things began to take place. My allergen list grew and my diet shrunk as my body began rejecting whole categories of foods. In hindsight, we weren't educated enough on food allergies, so we weren't sure what to keep and what to cut out. We had no idea what "gluten free" really meant, and I made epic mistakes like thinking that "rye" bread was okay because none of the ingredients on the bag said "wheat". This was a perfect recipe for intestinal malabsorption. Despite eating mass proportions of what I thought was "safe", the weight began melting off of me faster than butter in a hot skillet.

Chapter Three: The Hospital Stay From Hell
Before I knew it, I was 17 years old, 5'7, 88 pounds, and I was laying in a hospital bed. I barely remember my 10 day stay in the hospital. I honestly think I was comatose most of the time. I wasn't aware enough to be scared. My intestines had gone into malabsorption, so no matter how much nutrition they pumped into me, my weight remained alarmingly low. My blood pressure was so low that the nurses would come in frantic in the middle of the night, flip on the lights, and discuss what to do with me. My heart rate tanked as well, and at some point during the stay, I don't remember it, but I went into atrial fibrillation. I went into a-fib at 17 years old. Since they didn't know what was going on and didn't have a clue how to fix it, they blamed it all on the weight loss. The only thing they couldn't tie in to the weight loss was the fact that my liver enzymes had shot through the roof (up into the 300s), and even though my charts note that they were concerned my liver would start to give up on me, they chose not to bring it up. Despite my blood pressure being 70/30 (half of what it should be), my heart beating at 40 bpm, and my being liver under distress, they still put me through the wringer with gastrointestinal tests. All to tell me that "your digestive system isn't working". Thank you Sherlock. Food moved through my system 6 times slower than an average person's would, which means that when I sit down to breakfast every morning, yesterday's breakfast has just left my stomach, and is beginning to digest. I bet you can guess what they did about it though. Nothing.

So, I took matters into my own hands. I started to educate myself about diet. I learned what it really meant to be gluten free, dairy free, and essentially allergen free. Unfortunately, at the time, I also had to cut out most fats and animal protein, because my broken GI tract decided it just couldn't do it. I'm happy to report though, that I did bring my weight up to about 100 pounds, all on my own. That's still about 30 pounds underweight, but it was better than 88.

Chapter Four: College, or Something Like It.
So, despite having no energy (and a really whacked out diet), I had the bright idea to leave home and go off to college. Everyone said that there wasn't anything serious wrong with me, so in theory I'd be okay, right? Wrong. It was quite the experience. Because of the issues that were beginning to plague my body, I spent literally all of my time sleeping, studying, and cooking. It was horrible. I met some of the most amazing people I'd ever met in my entire life, but I never got a real chance to be around them. I was far from the typical "college student". My life was a living nightmare that I was trying desperately to grin and bare. I had to cook every two hours in the community kitchen, just to keep on weight. I had to fit going to class inbetween my eating schedule, and ontop of it, I had to find time to actually do the work. I found myself trying not to cry as I stood at the sink, rubber gloves on my hands, rinsing dishes as I tried to both eat and clean up dinner at the same time. I tried to focus on the book I had laying open next to the sink, but all I could focus on was the sound of everyone laughing down the hall, as they ate pizza and played card games together.

I believe that both life and Lyme are all about lessons. Boy did I learn some in college. I now understand that my priorities were nearly completely backwards. As I focused on maintaining A's in all my classes, I started getting F's in health. My bladder started to peter out on me, so I started to have to sit on the end seat in the giant lecture halls, or else I couldn't stay. I couldn't make it across the aisle in time. This meant that I also had to find time to cook, eat, study, get to class 20 minutes early, do the assigned work, and sleep. I was often so exhausted that my whole body burned, from head to toe. I was typically so tired it was hard to breathe. My kidneys would send shooting pains through my mid-back when I'd least expect it. I had chest pains as I rushed through each daily task, and often woke up in the middle of the night shaking, in a cold sweat.

My body finally said "enough". I woke up one morning, and couldn't move. I was in so much pain, head to toe, that my whole body was locked in one position. For 45 minutes, I was paralyzed. At this point, I was in a single dorm room by myself, on a raised bed. I couldn't reach my phone so I laid there for a whole 45 minutes until I could manage to move my arm enough to grab it. As I dialed my Mom's number, I tried to stand up, and that's when my heart rate skyrocketed, and the room began to spin. As I tried to explain what was happening without sounding scared, I noticed that my abdomen felt funny. While on the phone, I slowly traveled the mirror, and lifted my shirt to check out what was going on. I tried not to have a verbal outburst after seeing what I saw. My ribcage on the left side was pushed out about an inch higher than the right side. Turns out that my spleen couldn't take it anymore, and it blew up like a balloon. At the time, I really had no clue what a spleen was, or where it was even located, until it popped up and said "Hi, I'm your spleen, and I'm really, really pissed off.".

You'd think that'd freak me out enough to send me running straight home, but I actually stayed at school like that until the end of the week. I believe it had been 3 or 4 days, and things were continuing to get worse, and I could barely stand up. I didn't tell anyone, but I had missed every class scheduled that week. I finally called my Dad, and he rushed over to take me home. I haven't been back since.

Upon coming home, I took a trip to the emergency room, where they were absolutely no help, yet again. They told me I probably had a nasty virus and that it had attacked every inch of my body, settling in my spleen. After 1 week of laying in my parent's bed, unable to walk or barely get to the bathroom, my Mom got me back to the office of the alternative practitioner I'd previously seen. He was rather shocked at the condition of my body, and knew exactly what to test for. This is when I received my first positive blood test. I was diagnosed with Late Stage Lyme Disease.

Chapter Five: An Uphill Battle
I celebrated at first. I thought, "Finally, I know what it is. I can treat it, get better, and move on with my life". Unfortunately, this has been far from the case. We initially tried an antibiotic protocol, but I only lasted 10 days on it. I came to find out that treatment for Lyme is much like treatment for Cancer. Your entire body becomes toxic. Because of this, I ended up in the ER, with frightening blood pressure and heart rate issues. That's when I began to have spells where I'd start to black out, and get stuck in-between that phase between consciousness and unconsciousness. On the tenth day, after laying awake for an entire night having seizure-like episodes, and after having had to be practically carried to the car after a doctor's appointment, I called it quits.

Since then, I've tried a multitude of alternative treatments. Some of which have also sent me straight to the hospital, and others that haven't had much of an effect. Things began to snowball again 1 year after diagnosis, as my immune system began to become increasingly suppressed. In May of 2009 I contracted an 18 day stomach flu. Shortly thereafter, I contracted what the doctors think was either viral meningitis or the swine flu, and my immune system was so confused as to what to do that instead of fighting the virus, it had an allergic reaction to it. With a fever of 103.5, I went into anaphylaxis. My throat and lungs began to close up, I broke out into a rash that covered my entire body from head to toe, and my lips and tongue swelled and blistered. We were in the emergency room every day for 4 days straight, because it just kept getting worse. All they could do though was tell me to keep an epipen with me at all times, and if I stopped breathing to call 911.

Chapter Six: And The Surgeon Said "Oops"
After that, we decided that it may be time to try antibiotics again. I gave a few a shot, and endured hell for 1 whole month, only to develop autonomic seizures, Dysautonomia, and Multiple Chemical Sensitivity. After finishing the bottles, I had such bad dysautonomia that I could barely stand up again, and my chemical sensitivity was so bad that I could no longer leave my house. We needed to take some sort of action, and my doctor was really at a loss at what to do, so he decided to see what would happen if he just slammed my body with IV drugs, to try to knock out massive loads of infection. He warned me that I'd become alarmingly sicker, but he promised that I'd come out on the other side.

So the doctor set me up to have a portacath surgically placed in my arm (usually they're in the chest, but I have no fat there, just ribs!), which would run a catheter from my arm to directly outside of my heart, so we could infuse the antibiotics. Because of the dysautonomia and MCS that I developed, surgery was going to be quite a tricky task. I opted to be awake during the surgery, and I opted out of the morphine. This meant that I only had local anasthesia and a small dose of ativan to keep me calm while they cut me open and threaded a tube to my heart. This is something that I probably won't be signing up for twice.

The surgery seemed to go fine, until the surgeon left the room and it was time to get me off of the operating table and onto a bed to be transfered to recovery. The minute they tried to move me though, all hell broke loose. My heart started beating irregularly and my heart rate shot up to 145 bpm, and any time they tried to sit me up I'd have pains and unusual sensations surge through my chest. They sort of scooted me onto the bed anyway though, and transfered me to recovery. I laid there for two hours, while nothing improved. They tried to tell me that it was "probably normal", but I insisted that though I feel like crap on a daily basis, it's usually not this bad. They decided to x-ray me just in case then, and upon viewing the xray, the surgeon said "Oh my God, how'd that happen?". There's one word that you never want to hear while in surgery. It's "Oops". There's also three words you probably don't want to hear either: "Oh My God".

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

Chapter Seven: Just The Beginning.
That brings me to where I am today. I'm treating with a new practitioner, who is using a combination of alternative and conventional therapies to get me well. It's going to be a long, trying road, but I know he can get me there. I still can't leave my house yet (aside from a trip to the doctor), but this wonderful practitioner has gotten me to the point where it's at least comfortable to sit up in a chair again, and I can often move around my house. I no longer feel like every night may be my last. I know this doesn't sound like a lot, but for me, this is huge. I have the upmost faith that I can get through this. It's just going to take a whole lot of strength, patience, and optimism. At times it's hard to see the light at the end of the tunnel, and to focus on what's important, but at the end of the day I still go to sleep and thank God for every day that he's given me, and for every breath that I take, even if it's a labored one. The biggest lesson that I've learned is that it's really the little things in life that are the most important, and that if you focus on those things, you can find the positive aspects of your life regardless of what the circumstances are. I may not be able to leave my house, I may often be plastered to my couch, and I may have a list of 50 or so symptoms, but I'm still optimistic. And one day, when I'm back out in the world, truly living again, nothing is going to be able to bring me down.
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March 3, 2011 ~ Alyson
In October of 2009, I started developing mysterious symptoms. First came odd visual problems and trouble reading. It felt like there was constantly a fog on my glasses that I couldn't seem to wipe off. This persisted off and on for several months and I began getting headaches.

In late January of this year, I developed a sinus infection that wouldn't go away. I went to the doctor and got put on antibiotics. That's when all hell broke loose!

I became totally bedridden for months. The doctor said I had mono, but it quickly became apparent to me that something else was going on. I developed HORRIBLE burning and stabbing muscle pain that started in my ankles and over the weeks worked its way up my legs (there are just no words to describe the amount of pain I was in at that point!!). I started getting really nervous, thinking that whatever it was, was making its way up my body and about to attack my organs next! I was having panic attacks left and right. My pain was so bad, I literally wanted to die.

My doctor gave me Darvocet, but it didn't touch the amount of pain I was in. I called his office on numerous occasions crying and begging for something to help me with my pain. I have an INCREDIBLY high tolerance to pain, but I was crawling across the ceiling in agony! He said to try Aleve for the pain. Darvocet didn't touch my pain, and this doctor thought Aleve would help?!

He did do something that helped, though. He put me on two antidepressants, Zoloft and Trazadone. He said that Trazadone is used for chronic pain, and when used together with Zoloft, they start working in a week or two (instead of a month or two). It did help, and since I've been on it, I no longer get the terrible shooting pains up and down my legs that were unbearable.

I kept developing more and more symptoms, but my tests kept coming back normal. I switched doctors so many times, desperate for help, but no one seemed to believe that there was anything wrong. I kept hearing that it was all in my head and that I should see a psychiatrist. I couldn't take care of my kids anymore. I could barely walk and many times I had to be carried up the steps. I developed joint pain and arthritis in my hands. And then there was the pain. Undescribable pain!

At one point, I was sent to a rheumatologist, who upon examining my fingers which were starting to curve and bend from arthritis and were too swollen for me to wear my wedding ring told me, "Sometimes when we don't feel well, we notice things about our bodies that we wouldn't normally notice." Was this person REALLY implying that I was making up joint pain and swelling?! She said all my blood work was normal and there was nothing wrong with me and our appointment was done.

I knew someone with Lyme Disease, and some of her symptoms were very similar to mine, so I started researching it and I realized that I had an incredible number of symptoms. I found a great doctor, known among Lyme patients as an LLMD (Lyme literate doctor). My test came back highly positive for Lyme Disease.

I started long-term antibiotic treatment in August. I don't know how long it will take before I am well again. For some people, particularly those who've been shuffled from doctor to doctor before getting the correct diagnosis, it can take many years. I have good days and bad days. I am very limited in what I can do, and I am in a lot of pain on a daily basis.
Blog:  http://alyson1durland.blogspot.com/
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March 3, 2011 ~ Stacey Belyea
Here is a link to her story:  Tick Disease, A Personal Account
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March 4, 2011 ~ Kim Trick
Here is a link to her story:  My Lyme Disease is not the IDSA's Lyme Disease
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March 5, 2011 ~ Anonymous
My story goes like this, I see a black dot on my leg and shave around it thinking its a scab from when I shaved 2 days before. Even tho I NEVER cut myself shaving. No time to bleed on my white clothes for work.Should have put on my glasses but nevermind that. Shorly thereafter I start to have bad pain and soreness ( like walking on hot coals) on the bottom of my foot. I also have cold/flu symptoms in the middle of the summer. I take flu meds and am better but foot becomes increasingly worse. I search for orthopedic or podiatrists to find the cause. I limp ,I leave work, I go to see Physical therapist where I work. This continues thru summer for about 6 weeks and I am almost crippled with pain.

Now I see a red circle appearing in the exact spot of the earlier noted tiny "scab" on my leg. I ignore red circle "oh I leaned on my leg and caused pressure redness" so I think. The redness speads over days and begins to clear in center, foot pain is excruiating, I start to research rash on internet. BINGO! Lyme rash exactly. I live in highly endemic area for 14 years,never had a problem as I am not an outdoor person. I just water my flowers every day. Anyhow I call my doc and say wow I have lymes . He gives me meds and amazingly in 24 hours the foot agony i have had for 2 months is entirely fine. I cant believe it myself. I had spent hundreds of dollars on orthotics and new shoes in the last 8 weeks! Anyhow 3 weeks of meds and I will be fine, or so they say.

I was fine for grand total of 4 months, (maybe a little less) before I could not stand the pain in , (not one) BUT NOW BOTH the bottoms of my feet.I new this pain, so I contacted an I.D. doc and made an appt. I could not stand the pain until appt date so I started abx. again 2 weeks before seeing him. The pain in feet once again went away quickly on meds. I went to appt.By the way I still had giant red ring on my leg( which I took a photo of) I showed doc rash ,asked if he wanted pic( he said no), he drew blood(remember I was already taking abx, for over 2 weeks when he is drawing blood) and I tell him I am ok now on the meds but why do I still have lymes after I was treated months ago. He says he doesnt know. He says, IF it is lymes, another 6 weeks will cure it I say ok, cause I can walk again at this point.

Begin again, another approxomate 4 month( or less till the pain was unbearable), I now have excruciating pain in my feet, lower back and right kne, I can no longer go up stairs on the right knee and I begin to feel pain starting in my left knee. I call same I.D. guy, now u know my tests were negative because I was on abx for weeks when he drew them, anyhow, he doesnt think it is lyme "but will be happy to see me" I also tell him I see red sligtly streak-like rash on my lower leg Why is a new rash coming again I don't understand. He says take meds and I will see u. I am 70 percent better on meds knee, back,feet only achy now . He draws blood, sees rash, tell him I am way better. He says WELL I DONT THINK THIS IS LYME!!
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March 5, 2011 ~ Maisie
Here is a link to her story:  My Story
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March 5, 2011 ~ Kara
Here is a link to her story:  Lyme Disease Awareness - Kara's Story
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March 5, 2011 ~ Deb
Here is a link to her blog:  My Blind Spot Journey
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March 10, 2011 ~ Marla
Here is a link to her story:  My Lyme Disease is not the IDSA Lyme Disease
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March 12, 2011 ~ Jen
I have Lyme disease. I most likely contracted it congenitally before birth. My medical history and that of my family strongly indicate this. But I was never tested until age 30. I had nausea, chronic infections and pain somewhere for as long as I can remember.

When I was 14 I started having terrible heartburn. A gastroenterologist prescribed pepcid and told me to take it daily, year after year. When that stopped helping I was switched to prilosec then nexium. No one determined why I had this symptom, but the solution was a drug. When I was about 16 I wasn’t having periods, so my mom’s doctor prescribed birth control pills. He never bothered to find out why, but he had a quick drug solution and figured it was good for teenage girls to be on birth control anyway. In the next couple years TMJ and headaches worsened, and I had jaw surgery. That’s when I was told I needed to take daily antihistamines, decongestants and steroidal nose spray year-round for allergies. Migraine headaches got worse and I was prescribed imitrix. In college I continued to have episodes of various pains – knees, hips, back – though nothing was found to be wrong. I also had episodes of fatigue, but again no cause was found. My sophomore year I had a sinus infection that lasted from January until the end of the school year. Meanwhile I had a small pharmacy in my dorm room of all my daily prescription drugs – prilosec, fake hormones, antihistamines, decongestants, steroid and antihistamine nose sprays, migraine meds. Still, I managed to be active through college, using medications to band-aid the various symptoms. 

After graduation my health began to rapidly deteriorate. I felt awful. I lost 15 lbs. Nausea and heartburn got worse. My whole body hurt. I had no energy. I had to stop running. A year later I returned to the east coast for grad school. I was excited and hopeful, but my hopes were dashed as my health continued to worsen. I was increasingly nauseous and throwing up for no apparent reason. I lost more weight. I had episodes of shaking and severe flushing. I couldn’t concentrate. I couldn’t sleep. I felt weak and dizzy. I knew something was very wrong, but I didn’t know what. Reluctantly I returned to TX. I saw a doctor about the flushing episodes. He had no idea, but he gave me a couple more prescriptions, one for a blood pressure drug that dropped my already low bp lower. Then I went for a complete physical at Cooper Clinic, hoping they would figure out what was wrong .The flushing was called rosacea and I got more prescriptions that didn’t help. The Clinic found my sodium level was very low and I had osteoporosis – at age 23. So I was sent to an endocrinologist who told me to drastically restrict my fluid intake and prescribed Actonel for osteoporosis. When Actonel didn’t help, he changed me to Fosamax. No one examined the condition of my gut and other nutrient levels and whether my body was even absorbing any of the calcium they told me to take. Neither of those awful drugs helped my bone density. But I did get an ulcer in my esophagus. 

I continued grad school part time and got a part time job. I was always extremely exhausted and dizzy and felt like I was about to pass out. I couldn’t think or concentrate. I could hardly function. I got in two car wrecks. I struggled to keep up with one class. I had to quit my job. Then I had to drop out of school.

I was denied health insurance because I had so many “pre-existing conditions.” At 24 I was a walking pharmacy of long-term drugs for osteoporosis, heartburn, allergies, “polycystic ovary syndrome”, rosacea, migraines. None of the well-known specialists could explain WHY someone so young had so many ailments. None of them made much effort to find an underlying cause. None of them knew how all those drugs would interact in my body. None of them seemed concerned that I was on so many. None of them gave me much hope that I’d ever be able to get off the drugs and be healthy.  

The anxiety and insomnia worsened. Besides my accumulating health problems, which could cause some anxiety, there was no explanation for the severity of it. I knew the last thing I needed was more drugs, so I went to counseling to try to find out why I had such unreasonable anxiety. It didn’t help. I didn’t know until years later how much neurotoxins from Lyme and other bacteria can affect the brain and cause such symptoms. But I did begin to question the cumulative effect of all the drugs I was on.

By early 2005 I was fed up with all the drugs that only seemed to be creating more problems and making me feel worse, while still no doctor could tell me WHY I needed so many pills. I didn’t feel I had a real diagnosis. I had a bunch of symptoms that doctors had tried to put a band-aid on with their drugs so they wouldn’t have to work to find the underlying cause. So I stopped all the drugs and started trying to heal through alternative treatments and changing my diet. These things helped a bit, but my health continued to deteriorate. 

The allergies got worse, until I was allergic to literally almost everything. I could only tolerate a few foods. And those I had to puree. I was still extremely nauseous and regurgitated almost anything I swallowed. I was dizzy and had a lot of pressure in my brain and always felt like I was about to blackout. My arms would go numb. I had chest pain and heart palpitations. I went to bed at night wondering if I would wake up or not. My skin was yellow. My hair was falling out. I developed severe chemical sensitivities. I couldn’t tolerate being in my parents’ house because of the gas and other chemicals so I had to move out into a less toxic house. I had trouble breathing. I felt like I could never get enough air. I had to stay near an oxygen tank. I used to run outside. By then I couldn’t go outside because I was so allergic to stuff in the air. I was always nauseous, dizzy, weak and in pain all over my body. 

In 2008 I moved to the northwest, hoping that the environment would be better for my health. Wrong. I was no better there. The joint pain and breathing trouble got worse. I had another chronic sinus infection and sinus surgery. 

In early 2009 I saw a naturopathic doctor about some of my various problems and she asked if I’d ever been tested for Lyme disease. I said no. I didn’t think I had Lyme because I’d never had a tick bite that I knew of. I didn’t know Lyme could be transmitted congenitally and that people can get bitten by a tiny infected tick without realizing it or getting a rash. I told one of the other NDs I was seeing at the time about her suggestion of Lyme disease. That other ND looked at me and said: “You don’t have lymes disease. You’re not as sick as you think you are.” It’s not just conventional MDs who need to be better informed.

I got the test drawn and that ND was the first to diagnose me w/ Lyme. But since none of the other doctors thought I had Lyme, I dismissed it and moved to southern CA, again hoping the environment would help my health. Wrong again. My health spiraled downward worse than ever. I was living in a trailer and I was in severe pain all over my body, especially my hips, knees, back, neck, head. I could hardly move. I wasn’t able to prepare my few “safe” pureed foods, so my stomach got worse. My hair was falling out again and my skin was yellow. I was utterly exhausted and unable to do anything. My mom came and drove me back to WA. My dad went back later for the trailer. The next few months were awful. I could hardly get out of bed at all. I was in constant unbearable pain. I lost another 25 lbs. I thought it would be better to die than to live like that. I knew something was seriously wrong. My problems were definitely NOT all in my head.

At this point I connected with a couple of people via internet/email who had Lyme and helped me get started on the path of finding Lyme-literate doctors and understanding testing/diagnosis. I then saw a Lyme literate specialist who ordered a bunch of lab work and - based on lab work, physical exam and medical history - diagnosed me with Lyme, several co-infections and a badly suppressed immune system. This doctor said my symptom history screamed Lyme disease and couldn’t believe none of the top doctors I’d seen had picked up on it. I started learning more about Lyme. I was stunned to find there were other people who had similar health horror stories and laundry lists of symptoms. But I was also discouraged because I learned that treating advanced cases of Lyme disease is very difficult, much different than treating an infection that’s caught early. I thought my health nightmare should have ended years ago. I didn’t want to hear it would take years to treat what I’d only just learned I had. I did not go out looking for a quack doctor who would tell me I had Lyme. I wanted this doctor to be wrong. So I saw two other Lyme literate MDs. One repeated my Lyme test. They both confirmed I do have Lyme disease and co-infections. 

I took an antibiotic for 32 days in September – October 2009. According to IDSA guidelines, this should have “cured” me of Lyme. It did not. I was supposed to stay on that drug longer, but after 4 ½ weeks I was having such severe pain in my liver and gallbladder and was so much sicker that I had to stop it. My LLMD referred me to an alternative practicioner to get treatments to try to get me more stable so that I’ll be able to tolerate long-term treatment of Lyme and co-infections. It’s now March 2011 and I have gained weight and gotten more stable than I was. I’m only beginning treatment of the infections. I’m still a long way from being healthy. But I’m eagerly looking forward to getting healthier than I ever was.