Hide and Seek
Ever play hide and seek with a very young child? Often, they'll stand in plain view, with their hands over their eyes, secure in their invisibility. In their young minds, it makes sense -- if they can't see you, you can't see them.
This same kind of blind faith permeates the medical establishment in America. If they say something enough times, it has to be true. Or at least, we're supposed to accept it as true, no matter what our first hand experiences.
The mainstream's response to Lyme disease is a perfect example of this one-dimensional thinking. Since the disease was first recognized in 1977, most doctors have been reciting the Lyme disease mantra: risk is mainly concentrated in the mid-Atlantic and Northeast in the fall; victims develop a bulls-eye rash; antibiotics kill the bacteria in a few weeks; patients enjoy a full recovery. This has been going on for almost 30 years now - despite a growing body of evidence that they're dead wrong.
This all came to a head for me again the other day when I saw the "updated" Lyme diagnosis and treatment guidelines issued by the Infectious Disease Society of America (IDSA). Frankly, it's not much of an update -- it's mostly more of the same.
For instance, the "new" IDSA guidelines continue to claim that 95 percent of Lyme victims are cured within 10 to 28 days. They also go so far as to say that long term antibiotic usage is ineffective, and can even be harmful.
Even worse, they continue to focus on erythema migrans, the "bulls-eye rash." Here's a direct quote: "Erythema migrans is the only manifestation of Lyme disease in the United States that is sufficiently distinctive to allow clinical diagnosis in the absence of laboratory confirmation."
Here's the reality: many physicians with special knowledge of Lyme think that anything shorter than a six week course of antibiotics is a waste of time (and may explain the eye-popping 40 percent relapse rate). I've seen and treated hundreds of cases of acute Lyme Disease. Here's one illness that needs to be treated with an antibiotic, usually doxycycline, in the acute stage. The risk of missing Lyme in terms of complications down the road far outweighs the modest risks of several weeks of antibiotic therapy.
Plus, less than half of Lyme patients remember a tick bite or develop the classic bulls-eye rash. So if that is the only sufficient diagnostic criteria, we're in big trouble.
Part of the problem is that the Centers for Disease Control's recommended Lyme testing process (which IDSA also stubbornly sticks with) is outdated and inaccurate. Lyme activists have campaigned for revised interpretation guidelines for years and have the research to back it up. But the establishment continues to keep its hands over its eyes.
It's easy to see how simply relying on the presence of a rash and/or bloodwork results in missed diagnoses, often with extremely unpleasant, difficult-to-treat consequences (more on that in a minute).
To their credit, the new IDSA guidelines do acknowledge some realities that the mainstream has been denying for years: Lyme stretches from coast to coast, with high rates in northern California and the upper Midwest; severe cases can be caused by co-infections with other bacteria and parasites; and some patients often experience a lifetime of "post-Lyme" health problems, including overall pain and fatigue (Some Lyme specialists think untreated Lyme disease may be the real cause behind many diagnoses of fibromyalgia, chronic fatigue syndrome and rheumatoid arthritis.)
Fortunately, IDSA isn't the only organization out there talking about Lyme, though they probably get the most press. The International Lyme Disease and Associated Diseases Society (ILADS) has been fighting the good fight for many years now, trying to get the government and establishment organizations to face reality. They've issued their own diagnosis and treatment guidelines, which urge case-by-case assessment instead of mandated testing and treatment guidelines.
Here's what you can d if you suspect you have Lyme, find a "Lyme-literate" doctor -- even after 30 years, the majority of doctors are not very knowledgeable about Lyme. ILADS provides a list of member physicians on its Web site, www.ilads.org or call them at 301-263-1080. And do your homework - there are a number of treatments that can complement antibiotic therapy or alleviate chronic post-Lyme issues; homeopathy, acupuncture, supplements like B12, magnesium, CoQ10 and essential fatty acids, and even electromagnetic therapy have worked for many people.
What ever you do, don't hide behind conventional wisdom -- seek your own answers.
