Disulfiram.... kinda surprised my LLMD prescribed it

Honestly, the past 3 days i haven't even taken it (on my off week) and I'm still a lot more tired than usual. Normally I would get 7-8 hours of sleep but lately I'm sleeping more like 10 and still pretty tired even when I wake up. I have no idea if it's a "herx" or just the effects from the drug, but if I had to guess i'd say it feels more like the drug. Overall just been much more tired.

That fatigue could definitely be die-off.

A few years ago I started taking 2 shots (2.4 million units) of Benzylpenicillin (Bicillin LA) every 3 days. The fatigue was brutal. I had low blood pressure and was napping everyday for about 6 weeks. For the first few weeks or so, I would finally get up and force myself out but would plummet after a few hours and have to sleep in the afternoon.

I have had similar but not so extreme from other abx.

Really interesting.

I am in a very bad situation and saw my gp this morning. 3 years of lyme, a lot of failed treatments and just got worse.
I began bvt 3 months ago and was very hopeful about it. But my symptoms worsened in a crazy way, nerve pain all over, and this morning I saw that I have lost all my reflexes in my right side ( arm and leg). I can t walk, and have facial palsy episodes for a few weeks now.My gp was scared and asked me what to do so I talked her about this new treatment.
She was very nervous because of the potential side effects but said that she had to do something for me. She is not llmd, my llmd is in vacations.

I hope this will help, I have a microscope and see my blood, antibiotics never improved me ( but in France it is hard to have a llmd and a good treatment plan) but I worsened a lot each time the llmds took me off of them.
I trusted the bees but never had a skin reaction on sting sites, never itched...and my blood is full of spirochetes, the same as when I was under serrapeptase. It is awful. I think I will try bvt again if I can improve but actually I am not in a herx or a healing crisis or I don t know what...

So crossed fingers...

Thank you for the update.

Everyone else seems to be unable to tolerate (watching disulfiram for lyme group facebook). This is surprising to me as hundreds of thousands of people have used this for alcohol abuse and seem to tolerate it well enough anyway.

An aside NAC is a glutathione precursor and should likely be avoided as well.

Aspartame (tomato juice also?) is broken down into methanol, so most likely should be avoided as well.

No, it was based on how I was feeling. I ran blood work today, which is first time since starting the disulfiram, so I'll see if the disulfiram has affected anything as far as blood work soon. I don't think there would be a test to determine how toxic someone is etc. More so just to make sure basic stuff is ok (WBC etc.)

Post Edited (Mademywifeapromise) : 7/19/2019 3:30:41 PM (GMT-6)

I've been back on the 500mg a day dose for the last 9 days and plan to keep going with 3 week on 1 week off protocol. (at least as far as I know). Overall I'd say this drug still hits me harder than anything else and my energy is not as good, but I am still fully functional. The biggest thing has been the fatigue associated with it that comes and goes. There have been a few days where I've been dead tired, and can definitely associate it with the drug. My doctor seems pretty confident this is a die off reaction as opposed to side effects from the drug but we shall see. I will continue to update as I get further along.

Fantastic, hope you see lots of progress with this therapy! I'm still trying to figure out the dosage as my flare responses to DSF have been incredibly strong and at times overwhelming. Am having to take time off work, would like to be as aggressive as possible because I'd like to minimize how much time I take off, but it is challenging. At a certain point body just taps out and have to readjust level of treatment aggression.

Fatigue is very nasty with these flares, I think it is testament to how much die-off this drug is able to cause. Maybe for some the fatigue is partially side effect, but in my case am convinced it is linked to die-off effects as it wax/wanes with all my other babesia flare symptoms. I was hoping to do 500mg daily, was ok for some days but then just hit a wall. May try to do pulse approach, 3 days on 4 off, have always been a fan of the hard punch then catch your breath approach.

Wanted to give update on where I’m at with disulfiram

I’m approaching my week off abx and have been taking disulfiram for a little over a month and half now. Originally I dropped down from 500mg to 250mg cause I felt like it was really bringing me down mentally (heavy fatigue, but the mental part was harder). At 250mg I felt much better so we decided to go back to the 500mg dose. After about 4-5 days on 500mg I think I once again got more down about things (accompanied by heavy heavy fatigue). I wasn’t sure if it’s the medicine at first but I’m pretty confident once I started thinking about it that it is 100% the medicine making me feel so down. No drug has ever really had an effect on me and iv never had any issues with depression so just wanted to share in case anyone else going through same thing while on this medicine. Remind yourself that it is the medicine!! For me personally I am still going to continue at the full 500mg and not scale it back as I’d rather take my chances with feeling down if it means being closer to 100% at the end. I still have no idea if this medicine is working for me aside from the fact that I have been more Tired/ worse since being on it but I plan to find out in another couple months. I know people have liked updates on this drug since it’s so new so I’ll continue to update as I go through

Great news!! Thank you for keeping us updated. Glad you were able to decipher that it was the drug causing the depressed feeling and mood. I’m sure that makes it easier to focus on endurance and not get bogged down in confusion over symptoms.

This is great!

Please do keep us updated as you continue with it!

I don't know if you would want to use me as a guideline. I'm more so at a crossroads myself on what to do next. I've been on the disulfiram for about 3 months now (in total only about 50 days at the 500mg dose when factoring in my weeks off and the time building up to the 500 mg). 3 weeks ago during my last week off I felt night and day difference from being on the disulfiram. Was feeling pretty good really thought I might be turning a corner, started to do little more workouts etc. Once I got back on the disulfiram I started feeling worse again, having weird pain in my upper body that I've never had before. Almost feels like my tissues are going to explode or something, very uncomfortable feeling. My doctor decided since I was alot better off the abx we will try to ween off the abx and start with 2 weeks on 2 weeks off abx. I am now on day 10 of the 2 weeks off and unfortunately it has not been good like the last week off. I am having the real weird pain in my upper body again. I'm not sure if this is related to a die off or me overdoing it with my workouts etc. but regardless I've never had this before so not sure what to make of it. Maybe this is all related to the disulfiram, i really don't know but overall I was better overall before disulfiram so I'm not sure if that's a good thing or bad thing. As far as working while being on it I think it'll vary person to person but the biggest thing is fighting off the fatigue associated with it. Anyway, I know people want updates on the disulfiram so I will give another update again as I continue to go through it.

Just giving an update:

I know some were surprised that my doctor had me on other abx while also the disilfuram. Given that most are reporting to stop all other abx he has now changed tune and decided to only do the disilfuram. As far as how I'm doing its still hard to tell. During my last week off i felt pretty good and was thinking the disilfuram was really working but once I came back on the disilfuram i still wasn't feeling great. This time during my off weeks I really didn't feel all that great so that's obviously not what we were hoping for. I attempted to do 2 weeks off abx this time hoping that I would feel better after being on the disilfuram for the 3 months but that was not really the case.

note: Ive been on disilfuram for 3 months but only 50 of those days on 500 mg due to off weeks and building up to the dose.

One interesting thing to note is that I developed mild night sweat/heat flashes at night/early morning for 3 straight days during the 2nd week of my off week. I had only ever had a night sweat twice before. Once the first day i got on mepron and a second time the first day i got on the artemisinin.