Disulfiram - Part 14

Yeah the only things that bothered me as far as the acetaldehyde reaction were foods with vinegar and pizza sauce (must've had wine in it). Having dihydromyricetin on hand can help.

Alcohol sanitizers, shampoos, etc. never bothered me.

"Just got off of tie phone with llmd's office. The plan is to start at 125mg every third day for a week, then 125mg every other day for a week, 125mg every day for the third week, and titrate up from there to max dose of 500mg daily. Sound right?"

WV Mike: that's faster than I went and probably faster than most in the FB group. Common advice would be to increase every two weeks assuming you are tolerating it well... Obviously up to you and your doc.

Edit: Also ask your doc if he's had many patients experience neuropathy. Consider a diet low in copper to help prevent that, and definitely no green tea/egcg.

Post Edited (potsnpans) : 7/21/2020 4:37:05 PM (GMT-6)

Avacado, sweet potato, nuts, beans/lentils.. unfortunately lots of foods. I think breads can be kinda high too. But you probably don't have to be too strict unless you start having symptoms.

I did have symptoms and switching to an enteric version of DSF plus taking a zinc supplement seemed to fix it.

Hello - Long time stalker - I've posted a few times over the years, but I started my DSF journey 6 weeks ago. 62.5mg a day x 2 weeks, then 125 x 2 weeks...up to a target of 500mg a day (I'm 195 pounds/male).

Things went OK for a bit, but I've been hit with nasty side effects (vertigo, increased neck/base of head pain, cognitive stuff). I constantly had to take 2-3 day breaks and drop back to 62.5 mg...and i've taken a week off per my Doctor and just restarted this morning.

Here's the thing - Bartonella has always been my biggest offender. I've treated it aggressively since June 2017 with 10 months of triple-antibiotics, 8 months herbals, then 4-5 months antibiotics, and then 10-11 months of Azithro/Ceftin/Mepron - 1 month of herbs, and then DSF.

I feel like DSF DEFINITELY either hits Bartonella, or pisses it off. I've had symptoms this week I haven't had in 2-3 years - so I asked my Doctor to put me back on Bartonella antibiotics with the DSF this time. She's very new at prescribing this, so I'm hoping she will listen. I don't know that DSF alone for months will be good for me, and I've read a lot of good things about DSF + Bart antibiotics.

I guess my questions are - I have Vitamin B1, Zinc, and L-Ornithine, AS Gold, L-Glutathione...has anyone used anything else that proved helpful?

I do feel disheartened constantly seeing the it has no effect on Bartonella - Of course I have to have the one of the big 3 B's to not be reliably killed by it. Has anyone found success with DSF + a Bart antibiotic or two? (I've stayed on Bartonella Herbals throughout but think I need something stronger.) I know I've also read it DOES hit it...? It just seems so odd that DSF would have NO effect, logically. Us Bartonella folks need a breakthrough, badly...

It's so hard to tell if my increased symptoms are a herx, side effects...Bart... I haven't been this confused/unsure in a long time. :\ I should note, really, that at this point of my Lyme journey I don't feel "Sick" really. It feels like every last, lingering symptom i have is Neurological (Anxiety/Depression/swings, twitching, neck/head pain/fog)...

Any input is appreciated. Thank you.

That’s the thing - at 62.5 mg every other day (it was spurts of 3-4 in a row, off 3, I wish LLMD just started at 62.5 every 3 days...) and 4 total doses of 125mg, over 5.5-6 weeks... at 190-195 lbs - logic tells me it wouldn’t be the drug itself. Most, all, side effects I’ve seen involved higher doses over a longer period.

Either it’s kicked my Bart in ass and made it mad, or it made persisters vulnerable and the herbs (Sida + Hout) suddenly made me herx too? Also forgot to mention I swapped from a 1:20 powder form to a 1:5 glycerite form and probably started too high, thinking ‘hey I was on the powder...” and not realizing it was 4x potent. Maybe that explains some things as well? Sigh.

Hey WV Mike and JohnnyG, check out Disulfiram.net for good dosing info and other great stuff.

I ramped up slow from end of Jan to 375mg at start of March. On the last week of May I lost patience and increased to 500mg after 30 days I paid for it dearly and had to drop back to 250mg since. I think I just pissed off Bart like you said. I just stopped entirely for three days and started Zinc to offset neuropathy that developed. Back on 250mg and also added Ceftin.

I had treated heavy with ABX and herbs for over 10 years and best could only get to 85% or so healed. Bart too is still my main issue. I've always had a blast'em hard philosophy and suck it up through a herx, but this DSF stuff is tough if you aren't careful.

I took 50 mg daily. I believe it's best to take it at the same time as the DSF dose so that the DSF binds to the zinc in the stomach, rather than copper.

Hi, how is everyone doing this weekend?

Too much zinc can also cause diarrhea.... like I just found out. I read in disulfiram.net that recommended zinc dose was 100 - 150 mg. 150mg must have been too much for me. I had started Ceftin around the same time and stopped it after almost a week of diarrhea. I just read that zinc was most like the cause.

Good job MartinK!

Hang in there!

I'm also taking herbs with Disulfiram

Hi WV Mike, sorry to hear it's so hard to fill, please keep us up to date, I hope you can get it filled.

Hang in there!

RainyCloud

I did have some occasional blurry vision, usually in one eye, about a month or so ago that passed. Other than that my general vision has been fine since starting DSF last January.

I'm just starting to take a turn to the better over the past few days now that the reaction to zinc has passed. I also just increased my dose from 250 back to 375 after my 500mg experiment pushed me over the edge.

WVMike: You could start lower if you want to. Some in the FB group were starting as low as 32.5 mg a week.

My personal experience at the lower dosages was pretty smooth sailing. There is an anti-inflammatory effect which I think I was benefitting from at that point, as well as a build up if dopamine. Some have called this the "DSF honeymoon". I started at 62.5 mg every 3rd day.

Not everyone will have the same experience of course. I do remember reading about people struggling with fatigue at the lower doses.