Why the Lyme Controversy?

There could be an entire blog devoted entirely just to this subject, but I'm going to be lazy and give you my take on it, then just link to some of the best explanations of it that we've found over the last five years. So here goes: It's a very complex discussion, but what it all boils down to is that the medical community is divided over whether or not, once a person has been infected with Lyme Disease, and then treated with 2 to 4 weeks of antibiotics, it can still exist in the body as an active infection. Some doctors are absolutely adamant that it can't; some are absolutely adamant that it can. So the 64-BILLION-Dollar question is: Does Chronic Lyme Disease exist? Obviously, as someone that's been dealing with it for the past 10 years, YES. I believe it does exist.

But it's not as simple as that little question. What started with this basic debate, has grown into an all-out war, where the doctors that are actually successfully treating patients for Chronic Lyme Disease are being ostracized, picked-on, and punished, and in some cases, such as the case of Dr. Joseph Jemsek of North Carolina, they are not only losing their licenses but also their livelihood. Dr. Jemsek lost his license to practice and was then sued by BCBS for 100 Million Dollars, following which he had to declare bankruptcy. You can read his closing remarks to the NC Medical Board, just before they pulled his license for treating Chronic Lyme Disease, here. His story is detailed in the Lyme Documentary Under Our Skin. It all sounds absolutely crazy, but it really is happening. The important thing to remember in all this maelstrom of arguing, egos and money, is that there are patients involved. REAL PEOPLE with REAL PAIN, and very REAL ILLNESS that are being overlooked, ignored and downright discriminated against.

I was diagnosed with Lyme Disease in January of 2009, and I have positive blood tests to prove it. I spent six weeks in New England in 2003 and got home to a large red rash (non-bullseye) that appeared three days after returning from Boston. After five and a half years of mysterious symptoms and continuously declining health, I finally found a doctor who would help me. After undergoing almost two years of combination antibiotic therapy, I began to feel that I was getting my health back. Even though you would think I have a believable case of what is called late disseminated Lyme Disease, living in Utah has made it next to impossible to find an LLMD, or any doctor somewhat knowledgeable about Lyme. Doctors don't believe that Lyme exists in Utah, and apparently must also believe that if you are currently living in Utah that means you've never been anywhere else. If it didn't have such huge implications for my life, it would almost be hilariously funny. Almost.

When I became pregnant we had concerns about my lingering bouts with severe fatigue (my most debilitating symptom thus far) and also the possibilities and implications of Lyme Disease for our baby. My husband and I just wanted to find a doctor that could be at least sympathetic to what we were dealing with. But upon trying to look for an OB-GYN that was at least aware of Lyme Disease (we weren't looking for someone to treat Lyme Disease, we just wanted a doctor that was aware of it) we were informed by a family friend who is also a Nurse Practitioner, NOT to tell anyone that I had Lyme Disease or nobody would take me on as a patient. Um, excuse me....WHAT?!?

This is the REALITY that those of us with Lyme Disease, no matter where we're at on our journey with it, are faced with everyday. How can I have an illness that I live with every day, that affects my life, my family, my ability SO much, and have to HIDE it from my medical doctor in order to have the privilege of being seen as a patient? How can this situation happen in this country, where we are supposed to have the BEST -- albeit flawed and expensive -- but the BEST medical care in the world? This is one of the reasons that dealing with Lyme Disease is so difficult and so isolating. In addition to your serious physical ailments, you've also got to worry about trying to find a doctor who will treat you. In order to get treatment four years ago, I traveled from Salt Lake City, Utah to Seattle, Washington every 8 weeks to see an LLMD, a Lyme Literate Medical Doctor.

It's very difficult to begin to explain the nitty-gritty nuts and bolts of the situation, but we've found a few articles that do a pretty good job. Here are a couple of them:
http://www.columbia-lyme.org/patients/controversies.html
http://www.jemsekspecialty.com/twostandards.php

I also found this series of news stories from Lynchburg, VA on it, and thought the reporter did a good job of laying it out in a pretty clear, concise way. Again, it's not a subject that can be completely and effectively communicated in one sit down conversation, but this does a good job of scratching the surface. Each of the clips is only a couple minutes long:

The Lyme Controversy Part I:

 

The Lyme Controversy Part II:

 

The Lyme Controversy Part III:

 

Here's a clip showing the Lyme controversy playing out between a study published in the New England Journal of Medicine, and a study by Columbia University published in the medical journal Neurology, showing opposite outcomes:

 

For a more in-depth (but again, brief) look at the controversy you can also watch the Lyme Documentary "Under Our Skin" in it's entirety for free at http://www.hulu.com/watch/268761.