I feel like I've been run over by a truck. Several times. I haven't had the emotional energy to post, but I think it's way past time to do so, so here goes.....
Yes, it's definite now. I have Lyme disease.
The Western Blot tests came back positive, both IgM and IgG. Well, to be precise, they were positive by Igenex standards, not by CDC standards. Igenex is one of the best labs for Lyme disease testing in the country. The CDC standards are considered to be too narrow; in fact, I believe that the CDC says that their standards should NOT be used for diagnostic purposes.
Anyway, Igenex has developed their own set of standards based on years of clinical results. I tested positive in bands (both IgM and IgG) which indicate that I'm forming very specific antibodies against certain surface proteins of the Lyme spirochetes, as well as antibodies against proteins in the flagella of said spirochetes.
The remarkable thing is that I'm still forming all of these different antibodies DESPITE being on prednisone and Imuran, which are supposed to suppress antibody formation. According to my understanding, the IgM results indicate an active infection, and IgG means a long-standing infection. So my results mean that (1) the infection is active, and (2) that I've had Lyme disease for some considerable length of time.
AAACK!!! My head feels like it's going to explode! I've become an expert on autoimmune diseases over the past 2 years, but now I have to start researching LYME DISEASE???!!!??
Lyme disease is one of the most complex and controversial medical issues around. Plenty of political garbage going on in the medical community....AMA-types don't believe in long-term, chronic Lyme, nor do insurance companies. Doctors who treat Lyme disease on a long-term basis have actually been harrassed, so some of them try to remain anonymous, and their patients are referred by word-of-mouth through Lyme disease forums on the Internet.
There is so much that is still not known about Lyme, partially because Lyme disease encompasses several different diseases caused by distinct but genetically related spirochetes. For example, since Lyme is caused by a spirochete, it is suspected that it can be spread via sexual relations, just like the other notorious spirochete, syphilis. This has never been proven in research studies, but doctors do encounter cases of sexual transmission (and transmission from mother to child in the womb) of Lyme disease clinically.
So now my poor hubby has to be tested for Lyme too!?! Oi!
Lyme disease can attack any system in the body, and has been implicated as a trigger of fibromyalgia AND various autoimmune diseases!! Lyme can also mimic AI diseases!
I'm just absolutely overwhelmed right now. I know that I should be happy that I do have Lyme disease because it can be treated with antibiotics and defeating this disease might remarkably improve my overall health, but for some reason, all of these diagnoses in the past two years have just suddenly made me feel......I don't know how to express it. My brain has just reached the state of complete overload.
My new Lyme doctor gave me a prescription for doxycycline, and told me to take a number of supplements as well. I ordered two months worth of supplements online and it came out to about $170! And I still have more stuff to order... :(
On top of the Lyme disease diagnosis, apparently my other recent test results (spinal MRIs and lumbar puncture) have also come back. I got a brief report over the phone from my neurologist's staff that the lumbar puncture results were normal (YAY!!!), but that the spinal MRIs revealed degenerative disk disease (AAACK!!!).
I will be seeing the neurologist tomorrow and will find out what this all means.