Posted 6/8/2011 6:47 PM (GMT 0)
Oh dear, Bumble, you are getting the run around aren't you?
Many people do not test positive for Lyme even when they do have it. The test only indicates if you have antibodies present for Lyme. The disease itself suppresses your immune system so you don't produce antibodies and then the test comes out negative. Or positive depending where you are in the infection cycle.
Why you didn't feel any better when you are treated could be due to a few things, as I understand it. First of all, you might have heard of the herxheimer reaction. This is when you body cannot process all of the toxins produced by the die off of bacteria. You end up feeling worse and even stirring up some new symptoms before you get better.
Secondly, I do believe you were not treated with a high enough dose of doxy
From the ILADS.org site:
"Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.
With higher doses, there may be an increase in adverse events in general and gastrointestinal problems in particular. Acidophilus has reportedly reduced the incidence of Clostridium difficile colitis and non-C. difficile antibiotic-related diarrhea.
Serious adverse effects of antibiotics, however, were less common than previous estimates. In a recent clinical trial of chronic Lyme disease, the overall serious adverse event rate was 3% after three months of antibiotics, including 1 month of intravenous antibiotics. Clinicians who have experience with higher dose antibiotic therapy must balance the benefit of higher drug levels achieved with this therapy against the modest risk of gastrointestinal and other side effects."
And thirdly, you might have co-infections that started to run rampant while on the doxy. If you have them, they need to be dealt with before the Lyme is addressed.
But hey, this might all sound a bit scary isn't helping with your stress. The short answer to all of this is that you really need to see a Lyme Literate Doctor.
An LLMD would send your tests out to a more accurate lab. They would diagnose you clinically and not rely on just the test, and they would test for co-infections. And they would give you the appropriate treatment -- treatment based on your symptoms and how you as an individual respond to treatment.
You were asking about lyme literate doctors a little while ago -- did you have a problem finding one?