Disulfiram update

Benfast,
Just guessing, but likely just the metabolites are active. If I understood what I was looking at, DSF is really broken down in the body.

Lymie24
Has your father been checked for Lyme?

carlnpa said...
Benfast,
Just guessing, but likely just the metabolites are active. If I understood what I was looking at, DSF is really broken down in the body.

Lymie24
Has your father been checked for Lyme?

I'll be honest I've thought about asking him about that for awhile now since I've been dealing with my situation. I just haven't had the balls yet. My dad is a very conservative military man and is firmly 'brainwashed" by the western way of medicine. Talking to him about anything "alternative" is like talking to a brick wall.

The thing that gives me hope that he isn't dealing with Lyme or an infectious pathogen is his mind is still good. He doesn't really have any cognitive impairment of neurological issues.

Post Edited (Lymie24) : 8/6/2019 8:31:00 AM (GMT-6)

I'm following my doctor's dosage advice (which was to build to 500mg/daily). I love Dr Liegner, and used his treatment ramp-up as a starting off point. But no one knows proper dosing for these infections yet, Dr Liegner says his dosage chart is not set in stone, will likely be a lot of improvising. The 500mg/daily target dose (for many of us), this is just mirroring the standard dosages that have been given to alcoholics. We know this dosing is generally quite safe based on 80 year drug track record (but still requires monitoring liver function).

Initially the flaring was very very very strong. I had to restart with pulsing 62.5mg, even that was strong. Many patients are reporting strong flares. My main targeted infection is likely babesia, as this one is the lynchpin in my case.

Keep hanging in there Anna, wishing you good luck with this treatment! I have a feeling that for many of us who have plateaued in treating obstinate lyme/babesia cases this drug could end up proving very helpful.

Katleen said...
To Sebreg
thank you for your feedback, hope for us !
I would like to know why you want to take DISULFIRAM 500 mg.
Don't you follow Leigner's advise on weight based dose ?
I have Lyme, Babesia and Bartonella, I am taking (three weeks) DSF 250 mg every day, very hard for me.
Best improvements
Anna

Welcome to our forum, Anna!

Hope you do well on the DSF.

Roxybutin: do you think the heart was flaring because of lyme carditis? have you ever had that symptom? I heard of some patients flaring their lyme carditis because the DSF was hitting the borrelia so hard... can be very scary. Just be careful, treat at the rate you can manage!

Elvin: What I have read is this is not a "sulfa" drug (which a lot of people have allergies to that class), but beyond that I don't know much about the chem. It does have a sulphur component, which doesn't usually seem to be as much of a problem by comparison.

Hello, all. I’m new on here. Just getting started at 125mg. Been really sick for a decade now. Definite Herx reaction starts 1.5 hours after dosing and peaks around 2 hours after dosing. Only drug that has produced a comparable Herx was Dapsone, which put me on my feet for almost a year. So, I’m very optimistic assuming my liver can tolerate it as I ramp up to 500mg. I’m taking with dinner so I can sleep through as much of the Herx as possible, but still wake up with really severe fatigue that lasts into the afternoon. Interested in hearing more stories of success and failure.

Lymie24 said...

carlnpa said...
Benfast,
Just guessing, but likely just the metabolites are active. If I understood what I was looking at, DSF is really broken down in the body.

Lymie24
Has your father been checked for Lyme?

I'll be honest I've thought about asking him about that for awhile now since I've been dealing with my situation. I just haven't had the balls yet. My dad is a very conservative military man and is firmly 'brainwashed" by the western way of medicine. Talking to him about anything "alternative" is like talking to a brick wall.

The thing that gives me hope that he isn't dealing with Lyme or an infectious pathogen is his mind is still good. He doesn't really have any cognitive impairment of neurological issues.

====================================================================

Just an FYI - not everyone has cognitive impairment....so please don't let that be the reason for your dad NOT to test for lyme...especially since he has an autoimmune disease PLUS fibromyalgia - which really can't even be tested - it's just symptoms.

Update (Aug13): I'm about 3-4 weeks in on disulfiram therapy. I'm really turning the corner here. Flare symptoms are not as intense, and baseline symptoms are almost gone. I'm actually very excited with how things are going and feeling optimistic. My sense is the flare symptoms are going to dissipate in the near future, and at that point I'll be better able to tell everyone the extent of my progress (maybe finally achieve remission, ohhh I'd hate to jinx it by saying that!). It's all feeling rather surreal, for the longest time I always had hope that yes maybe I'd get all the way healthy, but realistically I had mentally made peace with the fact that fragile 80% was likely as good as it'd get for me. And coming from where I was coming from, I was rather ok with that prospect, but I certainly wasn't going to stop trying to get to 95%+ (which was always my goal).

The flares have been incredibly powerful and strong, I really think this is the strongest med I've ever taken (in regards to flare response). Likely a drug that many will have to dose carefully and methodically as they work their way into it.

Sebreg - could you briefly summarize your Disulfuram treatment so far ie. what dose you started with and frequency..., and when/how much you increased it...

And have you been taking any other antibiotics/antimalarials with it?

Also - pulsing is how it’s done? (Versus taking lower dose daily?)

Hi Girlie, I made initial mistake and started at full dose (500mg/daily). This promptly led to a crash due to overwhelming flare. 2nd attempt, I went much more conservative (at this point I had connected with the fb disulfiram group and saw my experience mirrored many other patients. Many patients were learning they had to start very low and slow). I restarted at 62.5mg 1-2x a week. Still got a strong flare with that, but we introduced combo antihistamines which seemed to help quite a bit with the flaring (as I've mentioned previously, I think I have MCAS issues related to die-off/pathogen toxins, thus flares are always amplified due to this phenomenon).

I was actually able to ramp up rather quickly. After 1 week I increased to 250mg every other day, and then following week to 500mg/daily (4-5x a week with 2-3 days off to let the air out of the flare). I'm now able to take it everyday as the flare has been diminishing in intensity. Granted this was a quick ramp-up, but I believe since I cut back the pathogen load with a lot of previous treatments it made the process go a bit more quickly.

Doc had me on malarone daily, plus biofilm stuff like serrapeptase, peppermint oil, oil of oregano, and some other supplement that had berberine in it. He also had me pulsing coartem (3 days on, 11 days off), but I only reintroduced coartem recently because DSF die-off was still too much.

Doc is very aggressive with treatments, I'm not sure if adding those other antiprotozoals is just overkill. But tbh, as strong and effective as DSF is, I also hold a bit of paranoia as to the indomitable nature of these organisms (based on my own experience with this hellacious babesia!). That said, I think it's quite possible the DSF is enough on its own, but I like the hedge!

Sunny40: I think initially my doc is seeing how people do on a 3 month run, but my guess is many well be treating between 3-6 months. I can't remember timeframes for the Liegner case studies, will have to look that up.

Thanks for the info Sebreg.

I hope this treatment proves to be the nail in the lyme and co’s coffin!

If by my follow up I’m still up and down I might just tell them I wanna do this.

Sebreg we actually talked on Reddit (you’re honestly a great guy and god bless you) and I agree, AB long term has its own negatives. I think I’m just gonna ask my doctor.