Thursday, December 9, 2010

My Lyme Disease Is Not The IDSA Lyme Disease- Kenneth Mercure.

Recently an article was written about Chronic Lyme Disease by two reporters at the Chicago Tribune newspaper. After reading it I left disgusted and angry. 

Titled, "Chronic Lyme disease: A dubious diagnosis", it is essentially a smear campaign, that paints a portrait of Lyme patients and our doctors as criminals and lunatics.

The entire piece relies on the "expert" opinion of the Infectious Diseases Society of America, playing them off as saints of honesty, who are merely trying to protect the public from the "misinformed" Lyme junkie fringe.
Never in my life have I read such a biased and poorly researched article, made even worse by quote splicing. Taking liberty with the words of others to help drive home your point is not only unethical, but criminal as well.

According to the Infectious Disease Society of America's guidelines and the Chicago Tribune it is impossible that I have Lyme Disease.

Let me tell you my story.

At around seven years old I developed a hive-like rash that spread across my arms, legs and torso. My parents took me to the ER where the doctors could not identify the cause. I was temporarily placed on Amoxicillin, to no avail. After no noticeable improvement my parents returned to the ER again. The cause of the rash could still not be identified. The ER doctors suggested that my parents give me Benadryl to resolve the problem. It didn't work either. Over a period of time the rash came and went until finally subsiding on it's own.

Over the next few years I became ill with many different viral infections including Conjunctivitis and Strep Throat. Many of which seemed to take longer than normal to recuperate from.

Progressively new symptoms began to develop, such as fatigue, insomnia and behavioral issues. Signs of psychiatric instability also became noticeable. In particular, Obsessive Compulsive Disorder.

Difficulties with schoolwork began to occur. I had always been ahead of the curve when it came to learning, but suddenly developed ADHD-like behaviors. It became harder and harder for me to process information in a classroom setting and this started to show in my grades. Disruptive behavior began surfacing as well. I became more argumentative and prone to aggressive outbursts than ever before.

When the time came to enter middle school more issues popped up. I began to experience Bipolar-like symptoms such as mood swings, irritability, depression and psychosis. Alongside this stomach issues similar to Irritable Bowel Syndrome started to occur. Ringing in both ears developed to. At age twelve, following an aggravating build-up of symptoms and lack of sleep, I reached my breaking point. I had a major panic attack and scared the daylights out of my parents in the process. Following this episode trouble with my eyes came to the surface.

Cognitive dysfunction, fatigue and insomnia would stay with me throughout middle school, high school and beyond. Increased psychiatric instability went on to become a major factor in my life. This coupled with everything else led to difficulties with concentrating and functioning on a daily basis.

Eventually I spun out of control and this resulted in a mental breakdown at the age of nineteen. Around this time I noticed the return of my Irritable Bowel-like symptoms. I also began to experience mild joint pain.

Over the next few years these symptoms would begin to worsen. The pain and discomfort slowly became more and more noticeable, spreading to other parts of my body.

During this time I went to my primary care doctor and was misdiagnosed multiple times. Two examples being Arthritis and Fibromyalgia, none of which stuck. 

It was during this period that I was first tested for Lyme Disease. The results came back negative. There were slight abnormalities on my CBC Panel, but no cause could be determined.
Around age twenty-one I began having migraines. At first not everyday, quite often, but not enough to be debilitating. Due to their relatively mild nature I considered them to be a side effect of the different medications I was on. Over the next two and half years these migraine headaches began to increase in both quantity and severity. Eventually occurring nearly twenty-four hours a day, with periods of debilitating head pressure and pain.

In the winter of 2008 I began to develop an increased sense of depersonalization. Out of nowhere it was as if I had suddenly become robotic.
I was placed on an antidepressant. It managed to make me feel like I was totally adrift in space, but was not a cure by any means. It simply made day to day existence bearable. 

A massive amount of blood tests were done and it was found that I had extremely low Testosterone, Progesterone, DHEA and Vitamin D.

I was told that all the symptoms I had been dealing with were likely due to these imbalances. I was started on hormone replacement therapy, given instructions to take a massive dose of Vitamin D and to supplement DHEA. I attempted to be consistent with the hormone therapy but felt ill much of the time. After five months I stopped the treatment. 

As my symptoms kept getting worse, I slowly became more and more desperate. My arthritic symptoms were now constant, fatigue was ever-present, migraines and head pressure were a 24/7 nightmare, gastrointestinal issues had become a daily obstacle and mental instability and neurological complications were an everyday experience. 

This continued into early 2010, to the point where I was spending much of my time in bed, due to extended episodes of extreme fatigue and pain. Vision disruption increased as well.

Reaching my limit, I finally decided it was time to take my health into my own hands. I began researching my symptoms and started to wonder if I might have an autoimmune disease, such as Lupus or Rheumatoid Arthritis. 

I continued absorbing as much information as I could and finally presented my concerns to my primary care doctor. She felt that an autoimmune disease was a possibility and scheduled me a whole roster of specialist appointments.

A gastroenterologist, neurologist and rheumatologist were brought on board. My first stop was the rheumatologist. He was a very rude man who completely humilated me. I was told I wasn't sick at all and needed psychological help, despite the numerous physical symptoms manifesting throughout my body. However, he did say that my medical records mentioned I had tested "false positive" for Lyme. 

During the period I was scheduled to see him I had been placed on three weeks of Doxycycline as a "safety precaution". After asking why this had been done, he told me I should find another primary care doctor, because she was a fool. He claimed there was no possibility I had Lyme Disease.

This galvanized me to do some research online. I learned that most doctors don't check for individually positive antibody bands unless you are CDC positive. I am not CDC positive. However, I am positive for one Flagella specific antibody band and one Lyme specific antibody band.

Next I saw the gastroenterologist, a very educated and kind man. He diagnosed me with Irritable Bowel Syndrome (IBS).

Not too much later I saw the neurologist. He was nice until I brought up Lyme Disease, which sent him into shivers. It's mere mention caused him to behave nervously. He even whispered to me (this being strange in such a private setting), "You might want to watch who you say that to. Some doctors don't like it.". Minutes later my appointment was cut short. It was obvious he wanted nothing to do with me.

Evidence only continued to build towards a diagnosis of Lyme Disease. During my three weeks of taking Doxycycline, two weeks were spent with me getting increasingly ill. This included a trip to the ER after I began to display stroke-like symptoms. I would later learn this was a sign of the Jarish-Herxheimer Reaction or in lay-man's terms: Lyme bacteria die-off.

I only saw the neurologist once more before his departure from his practice. Having garnered a tad more information about Lyme Disease I felt it necessary to bring up some vital questions. Not surprisingly I was completely rebuffed. He told me that the various symptoms I had dealing with were likely psychosomatic and a problem for a therapist, not a neurologist. 

So issues with cognitive ability, paresthesia and numerous other problems were basically a sign I was crazy- not sick.

At the end of the appointment he coldly told me the MRI he had ordered previously showed that my brain stem is slipping into my spinal column (medically known as a Tonsillar Ectopia). I was told I have little options for treatment. Either suffer through with migraine medication or undergo a complicated surgical procedure.

I even encountered a surprising amount of skepticism from primary care doctor, who had always been supportive of me. She seemed dead-set against diagnosing or treating Lyme any further than what is deemed necessary by the Infectious Diseases Society of America.
I was tested via the unreliable Western Blot and the results came back with one negative and three equivocal (or in any knowledgeable Lyme specialist's opinion: positive). Even with this evidence she still pushed for a different diagnosis.

With the help of other Lyme patients I was able to eventually get an appointment with a doctor who treats Chronic Lyme. What took other doctors five years to get nowhere with, he diagnosed me in less time than it takes to each lunch.

After starting treatment many shocking discoveries have been made. Many of my body systems are compromised and need rebuilding, particularly my immune system.

Since that time my condition has continued to worsen, however. There as so many different complications of Lyme Disease I am suffering from, I've had a hard time with treatment. Even so early in the process. My body is having a hard time handling it. 

Along with this issues I was unaware of, such as cardiac symptoms have become more apparent. Neurological difficulties have increased as well and pain is constant.

I battle debilitating symptoms everyday. 

Even traveling small distances has become difficult. Whenever I am in a moving vehicle for more than a few minutes I notice an increase in symptom severity. 

Basic activities are nearly impossible to accomplish now.

Other complications in the pipeline include a likely diagnosis of Postural orthostatic tachycardia syndrome (POTS) and the neurological disorder Chorea. 

This disease has done horrible things to me, but I persevere.

All I want is to get better, that is my one wish in the world.

*        *        *       *
According to the article in the Chicago Tribune my whole life has been a lie. I'm not sick, I just think I am, as if I would endure this misery simply to keep up appearances.

Because of the IDSA guidelines I went undiagnosed for seventeen years, five of which was spent being rejected by doctors and misdiagnosed. This has caused many complications and is making the healing process more difficult. Even now it is extremely hard to find anyone in the mainstream medical community who believes in my diagnosis.

As soon as doctors see my medical record I am treated differently or even worse- humiliated. Even with so much evidence right in front of them, many of the doctors I still must see (due to location) completely ignore my Lyme diagnosis. It's like talking to a brick wall most of the time.

Financially, I have also been put into a position where it's either travel across the state to get help or don't get better. I am on a strict diet plan that requires me to eat all organic foods and intake no gluten, dairy or sugar. This has come at a high cost and often exceeds what I am able to afford.

In terms of insurance coverage I am extremely limited in my choice of doctors. 

Because of IDSA's influence over insurance companies, my antibiotics are barely covered and must be fought for tooth and nail upon each refill. I fear everyday how I am going to be able to afford my medications, as the better they get, the more expensive they get. This is a very important issue to me because my insurance will likely not cover these medications and I am not rich. I can only afford to pay for so much. This doesn't even include the multitude of vitamin supplements I am meant to take.

My struggle is by no means a unique one either. This experience is universal to nearly all Lyme patients. Unlike many other illnesses we must fight to prove we are sick because we suffer from an nearly invisible disease. This leads to questions and disbelief from doctors and even loved ones. 

Articles like the one posted in the Chicago tribune only further aide in isolating Lyme patients, making it even more difficult to be taken seriously. 

No person deserves to be treated like this, whether they are chronically ill or not. 

*       *        *        *
Check the article out for yourself @:,0,5671843.story

Let your voice be heard! Speak your mind about this insulting and horribly inaccurate article!

Other Excellent "My Lyme Disease is not the IDSA Lyme Disease" Posts: 

Six Goofy Kids 

Other Responses to the Chicago Tribune's 
"Chronic Lyme Disease: A dubious diagnosis":

Sunday, December 5, 2010

Letters from Lymeland & Other Insanities.

I apologize that I haven't been doing much on this blog lately. I've been very busy working on a Lyme Disease awareness project.

It's a letter-writing campaign created by my lovely friend Bambi Albert to help spread the word about the plight of Lyme disease patients.

The past couple of weeks has been spent putting together our website, a large list of places where participants can send their letters, writing the letters themselves and doing a good amount of PR and getting the message out to the proper Lyme authorities.

Along the way so many different people have aided in getting this campaign off the ground. To all of you, you know who you are, I owe you a million thanks. 

To Bambi, I love ya to death for starting this and for being such a good friend to let me get involved. You have brought hope to so many!

Anyone interested in getting involved, please check out our site @:

Aside from the above craziness I have also been going through some tough times. Throughout the Thanksgiving holiday I was sick much of the time. I seem to have lost my ability to travel well in the car and end up quite incapacitated when it comes to long distances. I've felt under the weather a lot lately, but have forged on as much as possible. 

I am not allowing this beast to keep me down!

On December 8th, 2010, three days from now, I have my next appointment with my LLMD. I was recently tested for liver enzyme levels and co-infections and have gotten back half of those results. Thankfully my liver enzymes have dropped significantly after ceasing antibiotics for a few months, so I am hoping to be placed back on them after this visit.

While both myself and my doctor are still likely to question some of the results, due to his chosen lab not being the best, I have tentatively tested negative for Ehrlichiosis. My electrolytes came back low however and I am uncertain about the other half of the results. 

I am curious to see where my CD57 level currently is. As of my last appointment it had dropped over thirty points.

Sadly even test results don't mean much when it comes to Lyme and company. I've already been told by my LLMD that there is a good chance he will treat me for some co-infections based off clinical diagnosis, so everything is up in the air right now.

Here's to feeling better, battling the monsters within and pushing forward on the quest for a cure! 

Updates coming soon....