I have tried to reserve judgment, not taken sides. But there is no question that I sit here, 4.5 months after the end of my antibiotic treatment, and I am still symptomatic. What’s more, I believe that my symptoms are, in the majority, caused by lyme and not something else. Certainly my body was taxed by the last year of illness, and there is no question that I may have secondary conditions, but I do not believe that the majority of my symptoms are caused by a coincidental concurrent illness. This is purely my gut speaking — for example, I *know* that I had a mold problem in the house at the same time I started to be sick. In principle this could all be mold and not lyme. But I have trouble believing that.
Given that knowledge of myself, I need to start putting the puzzle pieces together to understand what is going on with my body, and what my treatment options are. Clearly the current treatment plan is not enough, though (aside from lyme) I am probably about as healthy as I could be. But to pick a treatment plan, I must first understand what is happening
So, there are three possible explanations for my current situation. The first, most popular among the traditional docs, is that I have not lyme but something else. As I said above, my subjective experience seems to bely this. The second, accepted by some docs on both sides of the divide, is that I have an immune system disease, in which my body is attacking itself unnecessarily. The third, considered most likely by the LLMDs (lyme literate M.D.s) is that I have some form of active lyme infection.
Let’s suppose the second (immune system causing my body to attack itself) is true. I am still trying to understand the disease mechanism for this, and I have not seen anyone write about how to treat in this case. I will probably write a separate post about this with more detail and hopefully a more correct explanation, once I’ve finished my research. For now, here’s my rough understanding. What could cause this possibility to occur? One belief I’ve seen expressed is that there could be residual proteins that trigger the immune system. The other belief is that the lyme bacteria may convert to its dormant form, and this could still trigger the immune system even though it doesn’t directly attack the body any more.
Let’s suppose the third (lyme is attacking my body) is true. One might expect the disease to progress (subjectively, I don’t think things have changed much for the worse or the better). But leaving that aside, this could be caused either by (1) some bacteria in the main form surviving by hiding out in a part of the body not easily reached by antibiotics (2) some bacteria converting to an intermediate, active form that antibiotics don’t attack well (3) some bacteria converting to a dormant form that antibiotics don’t attack well and then converting back to an active form. I haven’t seen any other explanations of this possibility yet, but even these three are important to differentiate as they have different implications for treatment.
What evidence exists for or against these explanations? I haven’t been keeping great track of all of this, though I plan to do a better job of documenting what I find. However, I know of work showing that the dormant form exists in mice [1], and indicating that it may be able to convert back to active in circumstances when the mouse’s immune system is compromised (haven’t tracked down the reference for this yet). There’s also a study with dogs showing that lyme can survive antibiotics [2]. Does this take place in humans as well? I’m currently working on the assumption that any of these explanations could be true (or more than one of them). I can test for an auto-immune disease and plan to do so. I can strengthen my immune system and search for secondary or concurrent illness. But I don’t know of a way to test for ongoing infection. Without definitive science or agreement among doctors, patients have to make their own decisions about this issue.
[1] Moody, K. D., Adams, R. L. , & Bathold, S. W. (2008). Effectiveness of antimicrobial treatment against Borrelia burgdorferi infection in mice. Journal of Antimicrobial Agents and Chemotherapy. 38(7):1567-1572. A news article about his research says “The bacteria that cause Lyme disease, the most common tick-borne illness in the United States, can linger in mouse tissues long after a full round of antibiotic treatment is completed, report researchers from the University of California, Davis” (http://www.news.ucdavis.edu/search/news_detail.lasso?id=8584).
[2] Straubinger, R. K., Summers, B. A., Chang, Y.-F., & Appel, M. J. G. (1997). Persistence of Borriela burgdorferi in experimentally infected dogs after antibiotic treatment. Journal of Clinical Microbiology, 35(1):111-116
