3 ms·
I know where you're coming from. I believe it is the appropriate attitude in discussing misinformation with, for example, covid. BUT I really did do my own res
by garyrob 5y ago
I know where you're coming from. I believe it is the appropriate attitude in discussing misinformation with, for example, covid.
BUT I really did do my own research with respect to Lyme, reading deeply into the peer-reviewed literature, and I came to the conclusion that the "scientific consensus" was formed by people too lazy or misguided to read it themselves.
For example, the consensus was that Lyme couldn't persist in humans after antibiotic treatment. But it DOES persist in other animals including primates. They could easily discover that because they could euthanize those other animals to see if it was there in their tissues, and it was. They couldn't do that with humans. The conclusion is OBVIOUSLY not that it can't happen in humans, but rather that we haven't proved it could. The "scientific consensus" got those outcomes confused, and assumed it couldn't.
But consider this quote from the OP article: "In May, her research team published their strongest evidence to date of persistent Lyme symptoms. In a unique finding, they discovered Lyme bacteria in the tissues of a deceased 69-year-old woman who contracted the disease, was treated multiple times with antibiotics, and still couldn’t clear the infection from her body.”
I was impressed by related evidence a couple years ago, such as an examination of the brains of people who had died of Alzheimer's. I don't remember the exact number, but something like 25% of those brains contained Lyme spirochetes. Note that there is a theory gaining traction recently that Alzheimer's is caused by the brain's attempts to manage active infections.
There is much, much more to say, and a LOT of research that goes in the opposite direction of what you're assuming in your post.
An anecdote: researchers tested hundreds of FDA-approved drugs in test tubes to see which ones worked best at killing Lyme spirochetes. Disulfiram won. My wife, who had lost her career as a retinal surgeon and researcher due to a chronic illness we thought might be chronic Lyme, took disulfiram under the care of her doctor who had treated Lyme patients for decades, and who was one of the first to try disulfiram in patients.
After the treatment, her illness disappeared. Our older son also had the same illness, which led to him taking a year off from school because he just couldn't function. He had been taking antibiotics for a couple years. At one point we stopped the antibiotics, and he felt great for a week, worse the next week, and in week 3 he was all the way back to being pretty nonfunctional with the symptoms attributed to "chronic Lyme". He, too, took disulfiram and was cured.
Note that we had long spent summers on Little Deer Isle, Maine, known for its deer and deer ticks.
- Quinner 5y agoA decade ago Lyme disease landed me in the hospital with carditis and neurological issues. I still worry that my brain doesn't work as well as it used to, but I don't have symptoms severe enough to make me seek out additional treatment (yet). It should be noted that while there is some evidence that Disulfiram has effectiveness against Lyme, it's not yet well-studied and the incidence of significant side effects, particularly neurological side effects, during treatment is high enough that I wouldn't risk it. Both the risks and benefits haven't been studied enough to quantify, though I'm glad it worked well for your family. Source on high incidence of side effects: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7184924/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7184924/
- garyrob 5y ago"It should be noted that while there is some evidence that Disulfiram has effectiveness against Lyme, it's not yet well-studied and the incidence of significant side effects, particularly neurological side effects, during treatment is high enough that I wouldn't risk it." Oh man, don't I know it. My post was about the question of whether chronic Lyme actually exists, not whether taking disulfiram is a good idea. Both my wife and son had a VERY difficult time with the disulfiram treatment. My son, in particular, ended up in the ER one night, basically having a psychotic break. That was the day he stopped taking the disulfiram. BUT it happens that he was almost at the end of the recommended treatment duration anyway, and EVERY indication is that both he and my wife were completely cured by it. This was probably about 2 years ago, and so it's very encouraging that there is no evidence of any recurrence. As I mentioned, my wife and son were early in the treatment experiments, and they had high doses. The doctor who treated them has now treated a good number of people and has much more experience with different doses. With a lower dose for the same amount of time, cures are less reliable. But there are experiments with low doses for longer times. I worry that you may have Lyme spirochetes in your brain that may predispose you to Alzheimer's. So it might not be a bad idea to look into more treatment even if you can deal with your current state. If you do, I'd recommend talking to my wife and son's doctor, https://lymediseaseassociation.org/blogs/lda-guest-blogs/kenneth-liegner-md-lyme-tbd-where-we-are-2021/ https://lymediseaseassociation.org/blogs/lda-guest-blogs/ken...
- 5y ago