Anything I should know about disulfiram?

The herx is like nothing you’ve ever felt.

But trust me, it’s just a herx. You won’t die or anything. Half the battle with herxing is am I dying lol.

You’re going to feel terrible. I do. I took a break for a day last week and I saw the insane jump in my baseline. I’m honestly in shock at the fact I can actually be me again.

I’m sure your doctor has given you things to kick cytokines out but if you need any advice on that, feel free, I’m just here herxing to the nines hahaha

I think for those of us with heavy CNS involvement (neuro symptoms) we need to start treatment very very very cautiously and carefully, the flares can be massive (Horowitz says this drug has given the biggest flares he's ever seen). And I can attest, this thing is a goshdarn sledgehammer. Some flare is fine, but too much can be risky and in fact dangerous, so this is why I think a very careful approach with this treatment is warranted.

I would also consider this study, which suggests you may want to avoid polyphenol supplements (and green tea and EGCG specially): https://www.ncbi.nlm.nih.gov/pubmed/28974447

I really appreciate Dr Kinderlehrer's approach and would recommend checking out this interview as it details his approach: https://www.youtube.com/watch?v=q6dlpvbuxrq&t=9s

If I recall he has patients start out with 62.5mg 1x to gauge their level of response and then he improvises treatment according to that.

I would also recommend checking out the facebook disulfiram groups as there is a lot of very good information in the groups.

Girlie said...

Aerose91 said...
The other Dr J has me on Florinef and Doxy and is now going to start me on disulfiram. I'm looking forward to it. I read through the other forum about it but am not sure if there's anything particular I should be looking for.
He's also giving me a pneumonia vaccine as a test to see if I qualify for IVIG. I'm pumped about that. Hopefully I can finally move in a good direction.

Thanks for any help!

Who is the other DrJ?

(What are the initials?)

Dr D. J. in Rockville Maryland. He's great and I'd put him right in line with or superior to all the other top ILADS guys; Dr M, Dr J, Dr K et all

Onlynamenottaken said...
Watch out for the neuropathy. It is def drug induced because I have never had it from lyme but I got it pretty legit after only a week. According to literature, it often improves. Improvement is not the same as “resolves” in medical journals. My neuropathy from Flagyl has never cleared up.

It sure was working though...truly depressing that I had to stop. I am really shattered about it. Real drag. Azlocillin is next I guess...☹️☹️. A trip to India can’t be cheap.

I didn’t know Flagyl caused neuropathy.
I know it has a warning re: caused bladder cancer in mice... so I requested tinidazole instead.
Although - they’re similar so it could have same carcinogenic potential...
does tinidazole cause neuropathy too?
Do you have numbness... or pain?

Onlyname: That is horrible news! So sorry.. I'm surprised it happened at such a low dose?!

Are you sure it wasn't a result of the killing action? Flagyl experience was also in treatment for Lyme?? How long have you been dealing with the neuropathy from that, and how does it differ from DSF neuropathy?

I sure hope it clears up for you. Please continue reporting on your experiences...

They don't know yet regarding DSF's mode of action(s). Maybe disrupting metal ion channels of the pathogens, but that is very speculative (this is how it works against malaria for instance documented in 1979 malaria/DSF study). Personally my vibe is it has something to do with the metal ion channels, which might explain this drug's seeming rock sold mode of action (I don't see how pathogens can find an evolutionary workaround if that was indeed the mode of action). There might be multiple mode of actions as well...

Onlynamenottaken said...
Watch out for the neuropathy. It is def drug induced because I have never had it from lyme but I got it pretty legit after only a week. According to literature, it often improves. Improvement is not the same as “resolves” in medical journals. My neuropathy from Flagyl has never cleared up.

It sure was working though...truly depressing that I had to stop. I am really shattered about it. Real drag. Azlocillin is next I guess...☹️☹️. A trip to India can’t be cheap.

Hey guys when I see posts like this it worries me. I thought the exact same thing last year. I took Bactrim for a UTI and my god the nerve pain was insane! This is a month before I knew o had Lyme so I definitely think it was a Lyne Herx as opposed to the nerve pain coming from the actual Bactrim. Prior to knowing I had Lyme I thought man that Bactrim is an insanely bad drug! But now I truly believe it was the meds flaring up the Lyme. I hope this makes sense! I think sometimes we all blame a medication for causing us issues when really it comes back around to the awful Lyme bugs.

Somebody said...
The old adage "no pain, no gain" is something I think that applies to Lyme and I'm prepared for it.

If neuropathy is a part of a herx reaction, it sounds like the damage is lasting much longer than other reactions and could even be permanent for some.

I would suggest one experimental treatment at a time, Jova!

With DSF, duration of a low and slow protocol would be a minimum of 6 months, maybe years. Some are starting as low as 25mg a week. Especially if you already have neuropathy, you should consider going extra slow...

Thanks for the reminder, WBF.


I'm also wondering.

Aerose91 said...
Hey guys. I just started it two days ago so nothing to report yet. Today is my third day on half a pill then I'm supposed to increase to one pill next week. 2 pills the week after that. Hopefully I'll have something good to report!

Is that 250 mg? (Are the pills all 500 mg?)

Thanks, Jova. My trajectory through this has been rather atypical, my belief is that is because autoimmunity is my prominent issue over infections. I'll keep you guys informed of anything happens, though!

How soon do people typically start seeing effects?