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5vforest
Senior Member (Voting Rights)
i wonder if they will test the trial participants who haven’t already shelled out for extensive coinfection tests.
I have responded quite well to disulfiram, but it was very hard to build up. Took me months to get on a good dosis. I check my liver every month.
I am still wondering why disulfiram is working, it could only be the effect it has on dopamine. I do wonder about that. I have to say that a few bloodlevels (prostaglandins, cytokines, cd57, cd38) were normal for the first time in years after three months of disulfiram.
I am still wondering why disulfiram is working, it could only be the effect it has on dopamine. I do wonder about that. I have to say that a few bloodlevels (prostaglandins, cytokines, cd57, cd38) were normal for the first time in years after three months of disulfiram.
5vforest
Senior Member (Voting Rights)
Since it hasn't yet been posted, here is the Liegner article:
“Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis: Retrospective Review of First 3 Years’ Experience in One Medical Practice (2020)
Open access, full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7761882/
The methodology and results strike me as very similar to the Horowitz Dapsone retrospective, discussed in this thread.
I believe that there are many more patients using Disulfiram than Dapsone. I am in two Facebook groups for Lyme patients using Disulfiram with ~5 and ~12 thousand members each.
“Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis: Retrospective Review of First 3 Years’ Experience in One Medical Practice (2020)
Open access, full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7761882/
The methodology and results strike me as very similar to the Horowitz Dapsone retrospective, discussed in this thread.
I believe that there are many more patients using Disulfiram than Dapsone. I am in two Facebook groups for Lyme patients using Disulfiram with ~5 and ~12 thousand members each.
I've had a massive improvement on this, but I was a bit lucky. I got prescribed small doses at first then slowly worked my way up to a full dose. It was under supervision, and I think there's no way someone should start using it on their own. But to give the complete picture:
-I was homebound, could barely walk to the mailbox and back.
-I suffered from crippling anxiety.
-I needed assistance with just about everything I did.
-Slept for about 18-20 hours a day.
-I couldn't even watch the tv for longer than an hour and only if it was something totally inane and boring like snooker.
My dad used to drive me to GP appointments, the GP is about 400 meters from where I live. Now I walk to the adjacent playground with my nieces and nephews without much bother. About a year back I could actually easily manage to walk there and then visit a couple more playgrounds further away with them. Last summer and the summer before I visited two football(soccer) matches each, something I didn't imagine I'd ever be able to do again. The first summer I actually had seats in the second ring of the stadium, one time I couldn't get into the lift so I had to walk a tremendous amount of stairs to get to the second ring, then some more to get to our spots. That one did actually give me PEM for a fair while.
I've once carried my nephew(3 at the time) on my shoulders towards the big playground in town, which is about 800 meters away I guess, because his sandals kept falling off. Again, bad idea, but I still managed and my PEM was still less severe than it used to be doing simpler things.
Have watched an enormous backlog of shows and movies I wasn't able to watch prior. Have played video games until deep in the night for weeks on end, which again was a terrible idea.
I can't 100% say these improvements were solely down to disulfiram, but would be surprised if they weren't as it was the only thing I changed during the time. I had to stop prematurely because I developed some neuropathy at which time the doctor supervising immediately told me to stop.
It was a pretty weird journey because some symptoms that weren't as severe as they'd once been came back hard and then quickly went away, seemingly for good. Why that was or if that was just imagined, I don't know.
The flipside is that I am slowly reverting now. I'm in no way as bad off as I was before taking it, but my sleeping time increased again from about 11-12 hours to about 13-14. PEM is harder and easier triggered. I can't walk as far as I did about a year back. I can mostly manage on my own, but where it comes to dinner I need help. I still live at home btw, so my parents already do a lot of tasks for me and have done throughout.
I don't know if it's a simple waning of effects or if it's because I went way past my boundaries, which I did on several occasions. Last year was especially taxing with renovation to the house/kitchen at the start of the year with all the accompanying noise, extra effort to prepare food, find stuff etc. Not to mention a lack of sleep/rest because builders come in at about 7:30 and make a lot of noise. I used to sleep until 10 and then nap in the afternoon for a couple hours, which was impossible for a good 5/6 weeks.
Later in the year there were a couple coinciding issues with my fathers health, making it harder for me to rest downstairs and a rodent issue(marten) which made it impossible to sleep upstairs. The "festive" season followed shortly after which more or less finished me off. I've needed 3 weeks to recover from the whole ordeal and am still having some trouble maintaining a schedule that keeps me within my bounds.
Overall the treatment with disulfiram was a positive one though I wasn't able to complete the entire course. Wanted to share this here with as much detail as possible. Will say again, don't try this stuff without supervision.
-I was homebound, could barely walk to the mailbox and back.
-I suffered from crippling anxiety.
-I needed assistance with just about everything I did.
-Slept for about 18-20 hours a day.
-I couldn't even watch the tv for longer than an hour and only if it was something totally inane and boring like snooker.
My dad used to drive me to GP appointments, the GP is about 400 meters from where I live. Now I walk to the adjacent playground with my nieces and nephews without much bother. About a year back I could actually easily manage to walk there and then visit a couple more playgrounds further away with them. Last summer and the summer before I visited two football(soccer) matches each, something I didn't imagine I'd ever be able to do again. The first summer I actually had seats in the second ring of the stadium, one time I couldn't get into the lift so I had to walk a tremendous amount of stairs to get to the second ring, then some more to get to our spots. That one did actually give me PEM for a fair while.
I've once carried my nephew(3 at the time) on my shoulders towards the big playground in town, which is about 800 meters away I guess, because his sandals kept falling off. Again, bad idea, but I still managed and my PEM was still less severe than it used to be doing simpler things.
Have watched an enormous backlog of shows and movies I wasn't able to watch prior. Have played video games until deep in the night for weeks on end, which again was a terrible idea.
I can't 100% say these improvements were solely down to disulfiram, but would be surprised if they weren't as it was the only thing I changed during the time. I had to stop prematurely because I developed some neuropathy at which time the doctor supervising immediately told me to stop.
It was a pretty weird journey because some symptoms that weren't as severe as they'd once been came back hard and then quickly went away, seemingly for good. Why that was or if that was just imagined, I don't know.
The flipside is that I am slowly reverting now. I'm in no way as bad off as I was before taking it, but my sleeping time increased again from about 11-12 hours to about 13-14. PEM is harder and easier triggered. I can't walk as far as I did about a year back. I can mostly manage on my own, but where it comes to dinner I need help. I still live at home btw, so my parents already do a lot of tasks for me and have done throughout.
I don't know if it's a simple waning of effects or if it's because I went way past my boundaries, which I did on several occasions. Last year was especially taxing with renovation to the house/kitchen at the start of the year with all the accompanying noise, extra effort to prepare food, find stuff etc. Not to mention a lack of sleep/rest because builders come in at about 7:30 and make a lot of noise. I used to sleep until 10 and then nap in the afternoon for a couple hours, which was impossible for a good 5/6 weeks.
Later in the year there were a couple coinciding issues with my fathers health, making it harder for me to rest downstairs and a rodent issue(marten) which made it impossible to sleep upstairs. The "festive" season followed shortly after which more or less finished me off. I've needed 3 weeks to recover from the whole ordeal and am still having some trouble maintaining a schedule that keeps me within my bounds.
Overall the treatment with disulfiram was a positive one though I wasn't able to complete the entire course. Wanted to share this here with as much detail as possible. Will say again, don't try this stuff without supervision.
Happy that you had an improvement! Can you detail your dosing? Thanks.
Started on 0,25mg every 3 days, titrated up very very very gradually to 3x100 a day. Weighed about 100/110 kgs at the time, I'm 80 kg nowadays I think the "maximum" dosage is dependent on weight. Also I had enteric coated pills, I think the way in which it is administered matters. Once again, I wouldn't feel comfortable doing this without supervision and I wouldn't feel comfortable with anyone starting this based on my relative success on it.
Do you mean 250 mg? Thanks. It looks like in the USA there are only 250 mg and 500 mg tablets.
I meant 25 mg, sorry. Another reason why this stuff is better to be taken under supervision than on the basis of some wackadoodle(me) giving their treatment plan.
No problem! Did you have a compounding pharmacy make 25 mg tablets or did you chop up a bigger pill. Maybe in your country they sell smaller (100mg) tablets? I promise I won’t ask any more questions….
A compounding pharmacy made 25/50/75 and 100 mg enteric coated pills. I think they even make 150 mg pills.