There is a large gap in the medical community right now regarding pretty much every aspect of Lyme - from what it is, what it can do, and how to treat it.
The IDSA (Infectious Disease Society of America) wrote the guidelines about Lyme Disease that the CDC (Centers for Disease Control) currently uses - therefore nearly all medical doctors use. These guidelines are the go-to for insurance companies to decide what treatments to pay for, as well as the go-to for what doctors should say or do. At the core, the guidelines state that Lyme Disease cannot persist past a 2-4 week course of antibiotics, even if symptoms persist.
I believe these guidelines to be erroneous not only because of my own experience, but also because a majority of the board of doctors who wrote them have conflicts of interest with insurance companies, Lyme testing facilities, and/or Lyme vaccine manufacturers. The main body of research used to reach the guidelines was also conducted by the board itself, and a large body of research that contradicts their findings was ignored.
On the other side, the ILADS (International Lyme And Associated Diseases Society) have their own guidelines and research stating that because Lyme Disease is a complex illness affecting both blood and organs, with the highly developed skill to hide, it can persist past a 2-4 week course of antibiotics.
Because the current guidelines are inaccurate, it affects access to care in an overwhelming way. Many insurance companies will not pay for treatment past 2-4 weeks. And, when symptoms do persist (remember the guidelines say that Lyme Disease cannot persist past the 2-4 weeks of antibiotics), doctors will often deny patients further care, because they believe the infection to have been eradicated. And instead of further treatment, they refer them to psychiatrists.
Any regular doctor's office you walk into will be operating off of the IDSA guidelines. If you want to see a doctor who believes in the ILADS guidelines, you must seek what is called a Lyme Literate doctor (and LLMD or LLND). To find one, go here: http://www.lymedisease.org/resources/referrals.html. Or, if you are in Wisconsin, I can point you to a few - just send me an email at waterwithlyme@gmail.com (hopefully I'm well enough to respond in a timely manner!).
What about lab testing?
Unfortunately, testing for Lyme Disease is woefully inadequate. The current standard Lyme Antibody Test (ELISA) will only test high enough to register a positive if you are tested between the 18th and 45th day after your infection began (because in this time period alone does your body create antibodies high enough in number to trigger a positive ELISA test). Because Lyme Disease is so often misdiagnosed and so difficult to diagnose, it is rare that testing within this short time period will occur. Even in cases when a positive occurs on the ELISA test, in many cases, your doctor will insist upon a second test called the Western Blot. Apparently interpretation of these results is a matter up for debate. I was fortunate enough to avoid this testing circus and get an accurate test right from the get-go from Igenex.
The most reliable test is from a specialized testing facility that only tests for tick-borne diseases called Igenex. Many Lyme Literate doctors will only consider tests from this lab company to be reliable - the 'gold standard' when it comes to accurate Lyme testing. In my personal experience, I also paid to have my coinfections tested to get 2 false negatives - I was clinically diagnosed with Babesia and Bartonella, even though the coinfection test was negative. (So I would skip the extra coinfection test if I were you, it is not yet as reliable as it ought to be). Insurance will not cover this lab test since Igenex is not FDA-approved. I discovered from my LLND that Igenex was denied approval because it produces 'too many positives.' This really bothers me because - of course many of their tests will be positive - THAT many people have Lyme Disease, PLUS it is a $200 out-of-pocket expense. I don't know many people who would pay $200 for a test if they didn't think there was a good chance it would be positive - the population being tested is already highly suspected for Lyme. For more information, visit www.igenex.com.
My LLND did also inform me that very recently, a new test that cultures the borrelia has been developed and apparently it's a game-changer. For more on this test, go to http://lymedisease.org/news/lymepolicywonk/811.html.
What about treatment?
Because of the chasm in the medical community about whether or not Lyme Disease persists after a 2-4 week course of antibiotics, how to treat Lyme Disease is the biggest question of all.
Certainly doctors who follow the IDSA guidelines will close the book after the patient receives a 2-4 week course of antibiotics, because the guidelines dictate that the bacteria cannot persist after this course, even if symptoms do. In fact, they will likely vehemently deny further antibiotic treatment when symptoms persist because the guidelines dictate that the bacteria MUST have been eradicated. (I guess the bacteria in my body didn't get the memo). They will often refer patients to psychiatrists, telling them that it is impossible they have Lyme Disease past initial treatment and that 'it is all in their head.' Book closed, door slammed.
The doctors who follow the ILADS guidelines believe that the bacterial infection can persist past the 2-4 weeks of antibiotics, especially if symptoms persist. These doctors are very likely to move forward with treatment which may include high doses of oral or IV antibiotics for extended periods of time - months or even years. For more on how I am eradicating my Lyme Disease (a protocol that includes antibiotics and Natural Medicine), read on: http://www.waterwithlyme.blogspot.com/2012/02/nitty-gritty-my-lyme-protocol.html.
For more information, visit www.lymedisease.org, www.ilads.org, or watch the documentary, Under Our Skin here: http://www.hulu.com/watch/268761/under-our-skin. All the information on this page has been paraphrased from info in this film or is from chatting with my LLND.
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