Disulfiram.... kinda surprised my LLMD prescribed it

I'm at the 8 month mark of treatment and my doctor has me stopping minocylin, mepron and flagyl and is now replacing it with Disulfiram. I recently read a report that it might work for lyme and babesia but was kind of surprised he put me on it. After reading possible side effects if you consume alcohol it has me a little nervous. I'm not drinking any alcohol but if I accidentally consume food that was made with some alocohol hoping it doesn't trigger some serious reactions. Will update as I go along.

To start just 125 mg a day and gradually increasing to goal dose of 500mg a day daily. I didn't suggest anything, he just said we need to switch up.

*he anticipates me being on it for 2-3 months

Post Edited (Mademywifeapromise) : 6/20/2019 3:57:58 PM (GMT-6)

I'm still taking zithromax M W F and now will be taking rifabutin everyday (before I was taking it Tues, Thurs, Sat) away from days I was taking mepron. Still also taking artemisinin M W F.

So basically increased rifabutin to daily and eliminated minocylin, mepron and flagyl.

Sheekster said...
So just to be clear....

You are taking zithromax, rifabutin, and disulfiram during the same week? I was curious if docs were going to start using disulfiram with other antibiotics. Thanks for sharing.

Yeah if you're Doctor is planning to do that, probably wouldn't be a good idea considering one of the main points Dr. Kim Lewis makes with Disulfiram is it doesn't mess with the microbiome, a big plus, so you don't have worry about c-diff or even a lowered immune system. Lewis suspects that overuse of antibiotics could be increasing autoimmunity... I think that's a bit exaggerated, I think the reason for chronic lyme is biofilms, persister cells and coinfections. But if you don't have to kill of your natural microbiome with an antibiotic, there's no point in doing so, as they say the microbiome makes up 70% of the entire immune system. So if you're Doctor is planning to use other antibiotics with it, defeats one of the main purposes of Disulfiram for Chronic Lyme. If that one study suggested Disulfiram was enough to put both borrelia and babesia into remisison for two out of three patients, there's no reason to take another antibiotic with it, other than maybe a biofilm buster like Stevia or Xylitol I would say.

Regardless of all that, big props for your LLMD for trying something different and thinking outside the box. More of the lower level LLMDs need to be doing so, because I know from experience with the LLMDs in Michigan, they're not staying up to date with the latest breakthroughs in lyme disease, glad to see yours is!

And yes, keep us updated on your progress...

Post Edited (Charlie55) : 6/20/2019 5:09:05 PM (GMT-6)

Ya I’ll be taking Zithromax rifabutin and disulfiram all during the same week. I’ve been treating all 3 b’s the last 3-4 months and for me I don’t think iv had crazy herxes. Sure seems everyone is so different with these treatments but we’ll see how I do with the combination.

Sheekster said...
Charlie- It seems like OP's doctor is trying to target all 3 B's with this combo. Zithromax, rifabutin for bart, and disulfiram for lyme and babs. Seems like a decent plan to me..

Hey I say go for it, but I suspect he'll end up not being able to tolerate all three drugs at once knowing the strong half life of disulfiram. Just taking disulfiram on its own led to the third patient in the study not able to deal with the herxing, fatigue, and toxins built up.

Again it's great to see a LLMD trying the drug out, but I think he's not taking into consideration what Dr. Lewis said about the microbiome, along with the strong half life and toxicity of disulfiram from both herxing and the drug building up in the system.

Then working his way up to 500mg a day with these two other drugs? Highly unlikely he'll be able to tolerate it.

Disulfiram also has severe side effects of depression, then adding two other drugs into the picture, may induce more side effects. I'd just take concern and be sure to take notes of any symptoms that may come your way, don't take them lightly.

Disulfiram is no ordinary drug you just mix and match with other drugs due to toxicity build up and the strong half life. Remember this drug inhibits enzymes in the liver!

Again, very happy you're taking it, but you're doctor should of informed you about some of these other things just so you're aware. Personally I think it's very irresponsible him to start his own protocol, not even taking into consideration the fact that the drug was purposely used by itself in the recent study. But honestly, from my experience, that's what a lot of the lower level LLMDs do, they disregard what the top LLMDs do and just makeup their own experimental protocols. But hey, maybe you do have a reputable top LLMD...

Just from my own experience, I took the drug a year or so ago, I only lasted about 3-4 weeks while being on 250mg a day, due to toxicity build up and bone crushing fatigue I quit the drug. Not to mention acting very jittery, wirey and having some severe depression that came and went. It's definitely not a drug you just take lightly. I tried doing 500mg just for 3-4 days, not even feasible due to being so bed bound and not even being able to function because of the fatigue, remind you while being on this drug I had already completed about 6-7 years of antibiotic treatment and probably about 80% of health.

I wish you best of luck, but make sure you do more research in the drug, because just mixing and matching drugs just because it'll knock out all three infections sounds kind of careless to me. Mitomycin C (Chemo) also shown to completely erradicate all forms of borrelia in the John Hopkins study, but considering how chemo basically destroys the cells and microbiome in your body, doesn't make it a good candidate for treating chronic lyme. There's much more to think about than just kill kill kill with chronic lyme, especially if you're in the chronic stage vs acute stage.. Some food for thought!

Post Edited (Charlie55) : 6/21/2019 12:22:10 AM (GMT-6)

“ Not going to lie and say I know about the things I'm taking, before lyme I didn't even like taking Tylenol, but for this I've kind of decided to listen to the "expert lyme guy" and go with his treatment plan.“

Me neither (I rarely took Tylenol or aspirin ) - and look at me now!! Lol
(As I gulp down my antibiotics )

So far I’ve been fine. Definitely feeling it I think but nothing crazy. Ironically today I am super beat...last 5 days iv been at 375mg and tomorrow I’ll up it to 500mg a day. I think my body Defitniely feeling it and my overall energy is down a little but it hasn’t been some horrible crazy herx happening. Will update again as i go further along.

His initials are SS

Originally throughy about the dr. J guy being that I live near his office but I had known of a few people that went to SS in past and had had success with treatment. We shall see tho

Not real sure, but with all my abx and herbs my LLMD had me work my way up to goal dose. Normally it would only be 2-3 days of taking half dose to see how my body reacts but with the Disulfiram he had me start at 125mg for three days then 250mg for 3 days then 375mg for 5 days before going to goal dose of 500mg everyday. No idea what best thing would be but it seemed logical.

Update on the disulfiram:

I took for about 20 days so far. The last 7 days I was at 500mg per day. Tough to tell exactly what the effects my body is having just off of this drug but definitely would say I've been a little worse. Energy not as good, feel a little more drowsy, and mentally not as positive (hard to know for sure if that's the disulfiram obviously). I think my body can handle the 500mg dose but I gave update to my doctor letting him know how I'm feeling etc. and surprisingly he said to reduce daily dose to 250mg everyday. (I was expecting him to say up the detox but not to actually reduce the dose). Anyhow, I'm on my off week this week and will give another update as I go along.

Post Edited (Mademywifeapromise) : 7/9/2019 2:38:12 PM (GMT-6)

Wow thank all for the updates

3 months

I'm going to play it by ear. If it becomes too intense I'll readjust.

I'm about 11 days into disulfiram 500 mg per day, massively fatigued and brain fogged for my first time ever. Started rifampin forbsrt two days after sonot sure which one is herxing me but it's pretty ridiculous, I'm in bed 15 hours a day rn