3 ms·

A 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

A 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...

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...