My Lyme Disease is not the IDSA Lyme Disease ~ Dawn

This week, an article was written in the Chicago Tribune about Lyme Disease. Below is my response...

I am writing today as a response to the article that was printed Monday in the Chicago Tribune titled “Chronic Lyme Disease: A Dubious Diagnosis”. You can access the article via this link: http://www.chicagotribune.com/health/ct-met-chronic-lyme-disease-20101207,0,5671843.story. This article is completely bias skewing scientific research, slandering Lyme Disease physicians who put their lives at risk to help very ill patients, and even personally attacking patients who are currently suffering from the disease. I am appalled that a news reporter would go at such great lengths to destroy the Lyme Disease community.

I have Lyme Disease. Here is my story. I have been sick for almost 8 years. I went undiagnosed for 7 years. In 2002, I attended an outdoor music festival in Minnesota. I came home from the concert not feeling well. I don’t remember being bit by a tick or getting the rash that is usually a sign of Lyme Disease; however, I came home with extreme fatigue and flu-like symptoms. I went to the doctor and they put me through every test you can imagine, and everything came up negative except that I had a high white count. I was sent home with amoxicillin (signaling a bacteria infection) and was told to rest. It took 3 months for me to recover; however, little did I know, this was just the beginning.

In the meantime, I got married, and was hired upon college graduation to be the director of a brand new preschool at my church. This was my dream job! I started working in November of 2003 and loved every minute of it.  Then, out of the blue, one year later, my world came crashing down. I lost 30lbs in six weeks, and started experiencing extreme joint and bone pain, migraine headaches, fatigue and horrible chemical sensitivities.  My food allergies became so severe that I could only drink one specific kind of water and eat cooked chicken purchased from a specific store. Anything else sent me to the hospital with horrible allergic reactions.  We were sent to the Mayo Clinic for two emergency visits.  Their answer to us was to give me high doses of steroids to control the allergic reactions and send me to a psychiatrist to help with the anxiety.  Anyone who would have been in my shoes at that time would have had anxiety.  However, no one seemed to listen.

The Mayo Clinic was 7 hours away from where we lived. So, when all of my appointments were done, we left with no diagnosis and a lot of medical bills.  We decided to leave Mayo after my last appointment and drive home through the night since staying in a hotel was so difficult for me and my new chemical sensitivities.  I could not drink any bottle water or tolerate any other water source, so we only made it 3 hours away from Rochester, MN before we had to stop in a small town and visit the ER so I could get IV fluids.  It was horrible.  We couldn't run the heat in our car because of the exhaust that would come in from the other cars and trucks on the road.  I was so chemically sensitive that even a small dose of it would send me into an asthma attack.  So, the heat was off the entire way.  I think it was below 20 degrees that night.

If you know anything about Lyme, adding steroids is a really bad idea.  If they would have researched into why I was so sick instead of trying to put a band-aid on my current complaints, they would have realized I had Lyme and they would have never given me medication that suppresses the immune system allowing the Lyme bacteria to multiply at warp speeds.  It was this mistake that started a never-ending tail spin of debilitating symptoms that literally made me think I was sometimes in Hell.  I know that might be harsh, but the pain was agonizing and the allergic reactions were horrific.

I remember one morning, I got up at 5am to eat my chicken and to drink my water.  I had to do this while my husband was getting ready to go to work so that he could be there if I reacted, and we had to go to the hospital.  This one particular morning, the bone and joint pain were so bad that I was lying on the floor in a ball and could not stop crying.  I wanted to die, and I remember praying that God would take me.

At times, my reactions were so dangerous that I would starve myself all day until my husband got home at 4pm because everything I put in my mouth made me think it was my last meal.  You don't know fear until you are sitting just waiting for your throat to close off, but knowing if you don't eat, you are going to end up back in the hospital.  At this point, I was reacting to all chemicals so a hospital was one of the worst places I could go with all of their cleaning compounds and disinfectants.  No one could visit unless they completely detoxed themselves (which in our scented world is next to impossible).  The more reactions I had, the more steroids I was given.  The more steroids I was given, the sicker I became.  We were told over and over that we had to wait it out.  So, we waited and we waited, but life did not return to normal.  We were now living a daily nightmare.  It was a nightmare made up of isolation, horrific symptoms and no answers.  For obvious reasons, I had to resign from my position at the preschool. It was my dream job and it killed me to have to say goodbye.  We then proceeded to see over 20 specialists all over the United States, but still were given no diagnosis.

It was suggested we move to a better climate to see if my health would improve. So, we packed up everything we had and left everyone we knew in Nebraska and moved to Arizona. We saw more specialists once we arrived, and still no one could give us any answers. My health was deteriorating with each passing year. I was housebound because of my symptoms. I actually had a physician say to me “I just don’t think we are going to figure this out”.  My doctors seemed to "move on" and they wanted us to also.  Not a great feeling to be extremely ill, but to be dismissed by doctor after doctor.  My husband's question to them was "how are we supposed to move on, when she can't leave the house?"  They didn't ever answer that question.

It's hard to grasp the kind of restricted lifestyle we were having to live on a day to day basis.  I can't tell you how many times it was suggested to me to get counseling.  After so many times I started thinking, maybe they're right...maybe nothing is wrong with me and it is all in my head.  In fact, I began to get excited about that possibility because then there would be an end to the pain and isolation.  However, every time I tried to "be normal", I paid for it physically.  Deep down inside, I knew there had to be a reason why a 25 year old's life went from a dream to a nightmare. I knew something was seriously wrong, and so did my husband.

Finally, in April of 2009, we found a physician who specialized in the diagnosis and treatment of chronic illnesses, and I was diagnosed with Lyme Disease. I was baffled that one bite of a tiny insect could do so much damage to a human being.  It also devastated me to know that if my family physician (the one who treated me for a bacteria infection when I came home from my trip to MN) would have just given me a months worth of antibiotics, this whole thing could have been avoided.  I was angry and frustrated, but then you can't change the past.  So, what did I do?  I sought out treatment from one of the top Lyme experts in the field.  I was told I had a long battle ahead of me as the bacteria had ravaged through my system so long that it had done a lot of damage. Personally, that didn't bother me because I was willing to do whatever it took to get well.  For the first time in a long time, I actually had hope that life might be different some day. 

Treatment is hard and the financial and physical obstacles are quite challenging. The IDSA guidelines make it extremely difficult to not only get diagnosed and to obtain the proper treatment, but also for patients to be able to afford the necessary medicine because insurance companies refuse to pay.  Not only do we have to fight the battle to get well, we have to fight the insurance companies to pay our claims and also have to fight most of the medical community because of their belief that Chronic Lyme Disease does not exist.  It's exhausting and frankly some days, I just want to give up. However, I am not a quitter.  There is not a quitting bone in my body.  I wish I could say that I was well right now and already be one of those "success stories"; however, like almost all Chronic Lyme patients, you don't feel great after you complete your first, second or even third month of treatment. Wellness is a process and for some it happens quicker than others.  I am only in the beginning stages.  However, I know with all of my heart that this road I am on will help me regain my health and when I do, I will once again be able to eat a bowl of ice cream, go out to a movie with my husband and travel to see my family and friends.  What a day that will be!

I would ask you to please research this story and show the truth. The lives of those who have Lyme Disease are being destroyed. Patients have lost jobs, houses, and the support of loved ones all because the medical community has decided that this disease does not exist in a chronic form. It baffles me that every day millions of research money is dedicated to cancer, MS, Alzheimer’s and other diseases, but very little is set aside for researching one of the fastest growing epidemics in this country. The people of the United States need to hear the truth about this disease, not only so patients will be protected, but so preventative measures can be taken to protect our loved ones from the bite of a tick and the havoc it brings.

~Dawn