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Originally Posted by Neuroproblem
Syphillis can be treated in late stages, but the permanent damage it has done cannot be undone, probably the same with lyme, but there isnt scientific research on this yet. There has been speculation that lyme leaves a residual autoimmune infection, and may account for the post treatment symptoms. Chronic lyme is used by the "believers", and disseminated lyme is used by the mainstream folks, but essentially mean the same thing.
I was on the lyme forums(healingwell, healthboard) for weeks(because i thought i had lyme), and they are filled with obsessed, and believe like its a religion, they were extremely hostile to anyone who spoke against, or contradict thier beliefs. even the forum rules for those boards have "dont reveal llmd locations,name,online". The reason why some people feel relief, could be psychosomatic, and some antibiotics have been shown to have immune modifying effect,(suppression) and may in fact be suppressing autoimmune or an inflammatory disease, instead. dapsone is one example of antibiotic, and it turns out its better at treating "dermatitis herpitiformis caused by celiacs". I did alot of searching around during my "lyme belief" phase, it turns quite a few sites have these list of symptoms that mimic hundreds of symptoms or disease, and i dont think these have been established by research, just people, trying to attribute everything to lyme.
I could not find any official or experimental research paper or data about chronic lyme disease. there have been some recent progress on lyme though.
Then there is that 24-36 rule where the tick has to be sucking your blood for that long in order to transmit it.
the biggest thing that concerns me about this lyme issue, is that they are helping to developing antibiotic resistant bacteria, by taking multiple antibiotics, they dont take it for weeks, or one month, they usually take it for several months to a year or more, no sane doctor would prescribe it this long, and im pretty sure some of them are pretty aware of antibiotic resistance. Theres already bacteria that are resistance to carbepenem(a broad sprectum)
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I understand the research, and have been on the boards for some time several years ago. I have spent endless hours researching Lyme in general. I agree there are fanatics, and many problems with resistant bacteria.
There are, however, diseases that require long term antibiotics (Whipple Disease for instance). It is rare, but it happens. Late stage Lyme could fall into this category for some individuals. Even as a kid, as I previously stated, I was on antibiotics for months because I kept relapsing. Thankfully, the last round seemed to knock the infection out. I remember being excited to walk around for a couple of months without my ankles throbbing.
All I am saying, is more research should be done on these matters. No one on here is a medical researcher or doctor, so our information will always be limited. Both neuros I have been to, who are very well respected, had red flags go up when I mentioned my childhood case of Lyme, both stating that theres a lot of muddy waters surrounding it, and there are some things that aren't known yet. One wanted to do a spinal tap to check for signs of it in my nervous system, despite my long term antibiotics decades ago, and the round I did this past summer. I declined it, but would consider it if I get terribly worse over the next few years.