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Chronic Lyme Disease: Does it Exist?

The controversy on whether or not Lyme disease exists in the chronic form is full of underground information and technicalities.

Honestly, whether or not chronic Lyme disease exists is not even a legitimate question to me. Obviously it does, I am living proof. I knew the question would pull in readers who are familiar with the heated political and medical debate.

The controversy on whether or not Lyme disease exists in the chronic form is full of underground information and technicalities. I’ll start by introducing the International Disease Society of America, otherwise known as the IDSA. The IDSA defines standards, regulations and guidelines regarding definition, diagnosis and treatment of all diseases.

For each illness, there is a board of committee members who are thought to have an in-depth knowledge of the disease. Most often, they are researchers, scientists and medical doctors who study the field and work closely with the infection in their everyday lives—they are imagined to be experts of the subject. But experts are the last thing I would call them.

If you’re familiar with the documentary Under Our Skin (if you’re not, I highly advise you watch it!,) then you probably remember a few physicians such as Gary Wormser, Eugene Shapiro, Robert Nadelman and Allen Steere. They are just some of the 14 professionals you can find on the board of the IDSA’s Lyme disease guidelines committee. They have concluded that Lyme disease is curable with a four-week treatment of antibiotics. If one still experiences symptoms after this time period, then they have “post-Lyme syndrome.”

In other words, chronic Lyme disease is not real. In fact, you can find Dr. Wormser referring to patients who experience complications after the four-week treatment as patients who suffer from a “psychosomatic disorder” who in fact never had Lyme disease in the first place.

Because of these regulations, many Lyme-literate physicians do not accept health insurance from a patient. If they do and they disobey the IDSA guidelines and surpass the regulations, the health insurance companies have a right to rebel and refuse treatment. The IDSA has been known to strip away the medical licenses of doctors who treat past the recommended four (to sometimes six) weeks of antibiotic treatment for Lyme disease. This makes it extremely difficult for chronic Lyme patients to find treatment, and for that matter even receive a quick and proper diagnosis.

This summer, after a month and a half of insurance-approved intravenous antibiotic treatment, my health insurance company turned around and decided to refuse coverage. Here I was at 19 years old with college tuition loans, fighting a chronic illness and now with thousands of dollars of unexpected medical expenses.

I took matters into my own hands, and did some research on human rights and federal documents to find some sort of loophole that could protect me. This is when I came across a declaration that proposed relationship guidelines between physicians and health insurance companies.

I devastatingly learned that physicians are allowed to accept financial incentives from health insurance companies to not diagnosis or treat specific illnesses, or to reduce treatment length. A light bulb went off in my head: Lyme disease becomes extremely expensive to treat; therefore all of the doctors on the board for the IDSA Lyme guidelines are being bribed by health insurance companies to misdiagnosis chronic Lyme and refuse treatment. And what better way for these physicians to do so than to create guidelines that make such actions illegal for all medical doctors?

Now I am no lawful scientist or researcher, but it becomes very clear as to how all the pieces of the puzzle fit together. The guidelines deny the existence of chronic Lyme when it is undoubtedly an actual disease, because Lyme disease is enormously expensive for health insurance companies to compensate for. The companies offer the committee members financial incentives to skew the guidelines into concluding that such treatment is illegal, therefore it’s a win-win situation for the board members and the insurance companies and a boundless, unbearable struggle for the chronically ill Lyme disease patients.

The following link is to the IDSA Lyme disease guidelines:

http://cid.oxfordjournals.org/content/43/9/1089.full

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

Jill Gertz September 23, 2011 at 04:50 PM
I should mention that near the end of my orals my guts stressed (amoxicliin feels like Draino when it gets stuck in throat) and I experimented a bit with other things in case I could not take orals anymore. Colloidal silver in stores is mostly junk and expensive but I used a colloidal silver maker by SOTA to make my own and it worked quite well (nano particles of silver are used in burn dressings etc). I would go on and off amoxicillin and substitute with the silver. As symptoms returned while off amoxicillin they would recede again once on the silver - and return when I went off it. I must have repeated this a dozen times. Since then I've used it many times for infections of all sorts. Making sauerkraut juice (easy) is also a huge help after being on antibiotics killing off the beneficial bacteria. People won't digest food right without that kind of thing.
CJ September 27, 2011 at 11:28 PM
I read your past article on your experience with Lyme Disease and felt I had to comment. Your experiences sound a lot like what my friend is going through right now. The past few months she has been experiencing migraines, painless swollen tonsils, IBS, low grade fever, and overall fatigue. She's tested negative for mono and strep. We contributed her pain to fibromyalgia, but then my mom suggested Lyme Disease. Then I remembered that I was with this friend the day I suspect I got my tick bite, and was diagnosed with Lyme Disease 10 days later. Like you, I tested negative, but my bullseye and flu-like symptoms were enough evidence, so I was put on meds just in case. As for whether chronic Lyme Disease exists, that's up for debate. I personally feel that it's "chronic" if you don't get treated for it right away. You went years without getting a definitive diagnosis and therefore didn't get treated, and it got worse. Because I got treated very early on, I haven't experienced symptoms. Also, can I ask, what was/wasn't Lyme Disease originally suspected? Did you ever notice you had a tick bite?
Carmela Bonito September 30, 2011 at 01:27 PM
It seems like you're friend is likely to have Lyme, hopefully she can receive a proper diagnosis. Well yes, if you aren't treated right away then it is automatically chronic. And the longer it takes to get treated, the longer it will take to get rid of. Lyme disease was suspected a few times because my initial and ongoing problem was knee pain- I was tested and received "negative" results. But since day one of my symptoms, i always had the antibodies in my blood therefore it was evident that i was infected- the doctors weren't required to tell me according to the Lyme disease guidelines. I never noticed a tick bite, i never developed a bullseye rash. Typical case of an overlooked patient.
Sarah Lamando October 07, 2011 at 04:39 PM
You have no idea how happy I am that you haven't experienced the financial "horrors" when it comes to long-term IV treatment...But, I do think that this is just one story that needs to be told. Check it out (if so inclined : ) at: http://www.lymedisease.org/news/touchedbylyme/ivabx.html (The story is in the "comment" section...) Best Wishes, Sarah
Sarah Lamando October 07, 2011 at 04:52 PM
I SO know what you're talking about...I used to tell people that after taking antibiotics, my stomach felt like, "the inside of old, rusted, un-oiled, malfunctioning mechanical clock". This was only remedied when I added TONS of probiotics as well as SBC (another probiotic that is usually not included in even the best of formulas). I would make sure to take it at least 2 hours after my antibiotic, and was amazed to see how that "clock" suddenly started moving smoothly again...

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