Thank you all, just to alert, from the research i have done, DSF is no joke to deal with. I have a problem to even try it, even if suggested by doctor. Let me tell you, if you are tolerating it, then ok, but it doesnt mean you will not have problems in the future. Just saying. I have found that DSF increases extra cellular glutamate leading to neuropathy and neuro toxicity. For me is just not worth it. It is still experimental. Dapsone was also thought to work in all people, surprise, it was found it doesnt. Same can happen with DSF, so at this stage, taking DSF is too soon and still a shot in the dark, and besides you risk to many adverse reactions and brain toxicity and on top of that, there is no antidote for disulfiram, if you get exposed to alchool you must suffer, and half life of the drug increases the problem by ten fold wish is 100 hours. Not trying to scare anyone, i know that there would be people that go fine with it, but like JovaLyme i have neuropathy also and i would only risk to add more problems. Gladly the problems are reversible, but do your own research, i have read some bad case reports, with people who did not even had a wink of alchool in the blood. Besides that, while on DSF you become a target to kill by any indirect exposure to alchool on the tons of products you buy/consume everyday that you dont even know they had any alchool in the first place. I had the choice to try DSF, but i rather prefer staying on abx still. Of course, i could reach a point were i am too desperate, so in that situation, i might have to choose dying or try DSF or any other experimental drug to save myself when abx doesnt work anymore. But not today... JovaLyme glad you are out of it. I would stop at the least doubt or suspicion of unusual symptom. The great problem is that people tend to attribute herx to any bad effect or symptom they have, and the great danger on this approach, it that people try to endure on it, thinking its a herx, but then, even on abx that might happen, so again its a shot in the dark. Not discouraging, because there are DSF positive case reports on lyme, but they are so few, that its not worth it.
I agree with much of what you say.
I got carried away with all the hype surrounding it and had to give it a try. You're right, it is very risky as it is totally experimental and almost no serious research has been done and no clinical trials as a treatment for Lyme and coinfections have been completed at all.
We've got a situation where a very small number of LLMDs have tried it with their patients and a lot of people are self-treating based on very, very limited information and research. I guess it goes to show how desperate most of us are to find a cure. When I think about
it, it's completely insane to start self-treating using a medication that hasn't been tested properly at all as a treatment for Lyme, but I'm OK with being a guinea pig.
It didn't work for me because of the neuropathy, but I did experience herxing on it that I haven't before in the early days. I found it a horrible medication to take and it made me feel really toxic. The horrible chemical smell on it was gross and it did make me feel pretty yuck. Another poster mentioned that I might have some kind of problems removing toxins from my body though, which could be a good point.
Where did you get your information about
neurotoxicity? I'd be interested to see a source for that.
Ultimately, it's up to individuals whether they want to try disulfiram. I would never try to put anyone off, but those wanting to try it should always think pretty carefully about
it. I'm acutely aware that plenty of these LLMDs and researchers are trying to make a name for themselves and there are some big egos in the medical profession. Horowitz seems to be fairly big on self-promotion and he, even now, still relentlessly promotes dapsone as some kind of wonder drug despite it doing very little for plenty of people.
JovaLyme, disulfiram causes neurotoxicity by the mechanism of glutamate uptake, but it is dose related i think. The case report was about
one guy taking 600 mg DSF. They explain possible mechanism of toxicity.
"Disulfiram itself increases extracellular level of glutamate, which is an excitatory neurotransmitter and neurotoxic in excess. It increases cell membrane permeability, provokes loss of dopamine and results in release of vesicular glutamate, which leads to further neurotoxicity. Disulfiram also inhibits glutamine activity, which may relate to slowing in electroencephalogram and frontal release signs (Park and Riggio, 2001)."