Greetings. I spend most of my MedHelp time over at the Lyme disease forum, but thought to post here to invite any of you who are interested to visit with us at the Lyme site and consider the possibility of misdiagnosis.
So-called mainstream medicine is in denial about the widespread nature of Lyme disease and the complexities of treatment -- a couple weeks of antibiotics is, unless caught almost immediately after infection, inadequate treatment.
The MDs who are the obvious specialists to deal with Lyme are infectious disease (ID) docs and neurologists, because Lyme is an infectious disease carried by ticks and perhaps other insects (also communicable to the fetus during pregnancy and perhaps in breast milk) and Lyme often has significant neurological effects due to inflammation of the brain and nervous system. For historical reasons, however, the MDs who set diagnostic and treatment standards in the ID and neuro specialties long ago staked their reputations on Lyme being hard to get and easy to cure. These standards have, for reasons of professional stubbornness, not been updated despite significant advances in the understanding of Lyme and its course and treatment.
Lyme is not always easy to diagnose, because it affects each person differently, some with more physical aches and pains, others with more neurological issues of confusion and irritability. In addition, symptoms can come and go and change over time. Lyme is serious, however, because its cause is a spiral-shaped bacterium in the same family as the bug that causes syphilis. If you have ever read about the long-term effects of untreated syphilis, including dementia, you will understand why effective treatment for Lyme is critically important.
MDs who are more open-minded with regard to Lyme are often called by us patients by the shorthand name "LLMD", meaning a Lyme-literate MD, one who thinks bigger thoughts about Lyme than mainstream medicine. Being an LLMD is not a diploma or a certification: it is a state of mind. And an LLMD almost never calls him/herself an LLMD, so asking a doc whether s/he is an LLMD will not usually be a useful question. To make matters worse, in some states, MDs who take a more progressive view of Lyme treatment and diagnosis can be hauled up on charges before state/local medical boards for 'overtreating' with long term antibiotics. Thus discretion is indeed the better part of valor. You will see, if you visit the Lyme site here at MedHelp, that we do not post the names of our LLMDs, for those very reasons.
There are three aspects of Lyme that bear mentioning briefly here:
1 -- Slow reproductive time, requiring longer treatment. Bacteria in general are most likely to be killed by antibiotics while the bacteria are dividing (= reproducing). Most bacteria reproduce very quickly, like every 20 to 30 minutes, and are normally treated with antibiotics through almost 500 reproductive cycles. Lyme bacteria, however, reproduce every 7 hours or so, so treatment for Lyme should, by that measure, be up to 30 months, though not always that long. (See the website 'lyme disease resource [dot] com' among other places.) In addition, Lyme bacteria are able to conceal themselves in gooey shields within the body where the immune system has difficulty locating them, which requires certain antibiotics such as Flagyl which are effective against the gooey biofilm shields. Many nonLLMDs reject or ignore this aspect of Lyme, without explanation, but consider how long standard antibiotic treatment is for tuberculosis, which is also caused by bacteria: at least 18 months. And nobody disagrees with that, because TB bacteria ... yes, reproduce slowly.
2 -- Other diseases carried by the Lyme ticks. The tiny little ticks that carry Lyme are not the only ways to be infected -- other ticks can carry Lyme too -- and ticks also carry other diseases not related to Lyme, often called generally 'co-infections.' Lyme plus one or more coinfections is not a 1+1=2 effect. Instead, it is often a 1+1=4 effect, because of the way in which Lyme affects the immune system and limits its reaction to other infections. NonLLMDs often do not test for possible coinfections, and if they do, they sometimes refuse without explanation to treat even in the face of such evidence (that happened to me -- positive test for a coinfection, and refusal to treat -- without explanation).
3 -- Lousy tests. The standard tests used to detect Lyme are out of date and not very sensitive, but nonLLMDs rely on those test results and disregard assessment of the misery the patients are suffering and default to diagnoses of emotional problems (I got that one), psychological disorders, MS, and a whole list of other things. LLMDs use tests from other labs, but nonLLMDs ridicule the tests for reasons that are not clear (other than not supporting their preconceived notions.) To nonLLMDs, Lyme is a settled matter; to LLMDs, the mysteries are just being unravelled.
In summary, there is a tremendous split in the medical community that is not just a difference of opinion, but are moral judgments against LLMDs as quacks and incompetent fraudsters. Someday soon I hope this will all be sorted out, but until then, we are on our own, and too often sent to psychologists instead of being treated for the infection(s) we have, or treated for the wrong diseases.
If you are ill and not progressing and want to read about what some of us have been through and what approaches we have used to find appropriate diagnosis and treatment, come visit the MedHelp Lyme forum. There's always somebody hanging around the water cooler there. Also check the website ILADS [dot] org, the main group for LLMDs, which has much useful information.
Best wishes to you all --