I am writing this in response to an article from the Chicago Tribune titled “Chronic Lyme disease: A dubious diagnosis”. You may have read it, if not you can find it here.
After reading this article I was speechless. I wasn’t fuming, or shaking in anger. I wasn’t outraged. I was sad. Sad, because the disease that I suffer from is being called “dubious”; because I saw the errors, the biased misrepresentation of people that I respect.
I’d like to tell you my story.
My name is Molly. I’m an eighteen year old girl who has been sick for eight long years. I don’t remember what it feels like to be well. I have chronic Lyme Disease. I don’t ask for your sympathy, just your empathy while I tell you about the last eight years of my life.
While I was in 5th grade I was in a serious car accident. I was told that besides some impressive bruises I was going to be absolutely fine. Fast forward 6 months. I began to experience severe vertigo, nausea, trembling, and sound sensitivities. In order to walk I had to hold onto walls around me. The stairs in my house were a major obstacle; they looked like they were miles long to me, simply stretching farther than I could comprehend. I can remember the walls spinning around me while I was lying in bed. Almost any sound at all was excruciatingly loud.
I was too sick to continue attending school.
I saw countless doctors, specialists, and therapists. No one had a clear answer for my parents or I of what had happened to me, a seemingly normal girl. Eventually we were told that I was suffering from a Vestibular Disorder, finding a 50% deficit causing the dizziness. A nationally-renowned surgeon wanted to do exploratory surgery to “fix” the problem, even though this had a possibility of resulting in facial paralysis. Instead I went through vestibular therapy for months and very slowly my life began to slide back towards normal. I attended half days at my middle school. I would come exhausted and fatigued but I was happy to have something of my life back.
For the next two years I learned to live with and accept the dizziness and other remaining symptoms; I adapted.
After starting high school, I began to experience several more odd symptoms. This time they were wide-spread body aches, pains, fatigue, and migraines in addition to my previous symptoms. Once again, the doctors were clueless. It didn’t make sense. We consulted specialists and were told that my symptoms were almost textbook for Fibromyalgia, although it was rare for a fourteen year old to be diagnosed with FMS. Sure enough I passed the exam with flying colors. Now I had two diagnoses.
In reality my body was no longer able to suppress the infections we never knew I had.
I was unable to continue attending school, and was forced to withdraw once again. I was in severe pain, at all times. It was relentless. We tried to manage the pain, but the more pain I was in, the dizzier I became. I was in a vicious cycle of symptoms that had a tendency to feed off of one another. I don’t recall much of my life at this time. Entire days would go by without me getting out of bed, or moving from the couch other than to use the bathroom. I was undeniably sick and my doctors were at a loss as to how to treat me.
I was accused multiple times of faking my illness to get attention and to get out of schoolwork. I was told that I was depressed and these symptoms were all in my head. I cried until I could cry no more. At that point I was truly angry. Frustrated, I refused to go to new doctors. I felt that they had failed me. Instead my parents suggested I see an acupuncturist to help with pain management. It is with this that the story of my road to recovery begins. My acupuncturist worked miracles, but I still wasn’t healthy. Something was still wrong. She referred me to a new doctor. Putting aside my fears, I agreed to try one more doctor. Maybe they would have the answer.
After discussing my situation my new doctor suggested testing for Lyme disease. My parents and I were in disbelief. “Lyme? Really? Lyme can do this? Wait – I never had a rash!” Well, yes, it turns out Lyme can do this. It has. I’m the living proof. And most chronic Lyme sufferers never see a rash. This is a complex and mystifying disease. It’s not fully understood, and although there is a recognized treatment for acute Lyme Disease, there is not yet a specific treatment plan for people like me – people who were not diagnosed immediately after being bit by a tick. I have no clue when I contracted Lyme, but I have test results to show that I do indeed suffer from this infection, and other tick-borne infections as well.
My disease is invisible. You cannot see it but my body is fighting for it’s life. Each and every day I struggle to maintain the small improvements I’ve made under the advisement and treatment of my doctor. I’ve been treating these chronic infections for almost two years, and I’m not done yet. I’m not done because I’m not yet well. I still have dozens of symptoms. I’m still sick but I don’t look like it. I am a functioning person, active in my community and the feeling of life is within my grasp.
I have no timeline; I can’t tell you when I will be healthy once again, but I will continue to fight for the remission of the infections that riddle my body.
My Lyme Disease is not the IDSA Lyme Disease. I am not faking, or lying, nor am I uneducated about the controversies and possible risks of the treatment of my disease. I don’t want to dwell on the politics of Lyme Disease. I just want to inform you, and ask of you to look at both sides of the story of Lyme Disease. I’m sorry, but the article that I’ve referred to has simply not covered the whole story. The truth lies in what is missing. There simply isn’t enough information out there yet, and the information available to us is split between two distinctly different camps of people. That is abundantly clear.
It should not be patients vs. researchers/doctors when it comes to awareness and treatment of a deadly disease. How will the sick ever receive the help and care that they need if we must continue to fight, and in some cases, educate those around us?
I find the inaccuracies of what has been reported sickening, and that is coming from a chronically sick teenager. I don’t mess around with that word.
Did you know that the Red Cross has restrictions on blood donations by anyone who has contracted Lyme Disease (Borrelia burgdorferi)? If it is a chronic infection, they will not accept your blood donation. If you were infected and treated acutely, you may donate but they will not accept a donation until 6 – 12 months after you are fully recovered. The Red Cross also stipulates that you may not donate if you have ever been diagnosed with Babesiosis, another tick-borne disease.
What possible sense does this make? The CDC and the IDSA do not acknowledge the diagnosis of chronic Lyme infections, but the Red Cross does and further stipulates specific restrictions on acute infections?
Cleary the medical world is caught in a web of conflicting opinions, and sadly those unlucky enough to suffer from this disease have been pulled into it as well.
Thank you for taking the time to read my story. This is my life. I have chronic Lyme Disease, and I live with it every day. I have missed over four years of school in the last eight years. I have put my life on hold while I treat this debilitating disease that is misunderstood, misrepresented, and scoffed at. I take more pills and supplements than I can count. I wake up each day unsure of what it has in store for me. I am no less sick because of the name of my disease. And I speak for all those without a voice who are fighting the same struggle as well.
I’m grateful for the brave doctors who have stepped out of the shadows to support their patients with chronic Lyme. They are our guiding lights, our tow ropes, and our life preservers. They don’t deserve to be punished for doing what they and their patients believe is the right course of medicine.
Chronic Lyme is real. Educate yourselves.
Please take a moment to read the original response, “My Lyme Disease is not the IDSA Lyme Disease” by Ashley Van Tol, who was quoted in the Chicago Tribune article.
Several other Lyme patients have taken a stand and written responses to this article as well, sharing why their Lyme Disease is not the IDSA Lyme Disease.
Here are just a handful:
Alix’s letter- http://bit.ly/gJoITn
Andrew’s letter- http://bit.ly/efOBxw
Kim’s letter- http://bit.ly/g7MRT9
Brooke’s letter- http://bit.ly/hweVql
Eric’s letter- http://bit.ly/ibWfPW
Candice’s letter – http://bit.ly/hdyj4z
Wishing you health, healing, and understanding,