Disulfiram - Part 1

My experience so far mirrors Onlynamenotaken. Actually have had huge improvements so far, lot of baseline symptoms I've had for YEARS are disappearing, and mind feels crystal clear. I'm still working my way through treatment, and still experiencing some flare (namely significant fatigue, swollen lymph noes, and woozy feeling, similar to mino-herx, think med is still hitting residual borrelia load). But never felt so optimistic in all my years of dealing with this, this has been the singularly most effective therapeutic I've taken. I had mentally made peace that fragile 80% might be as good as it got for me, and so be it. But with this therapy I actually feel light at the end of the tunnel, my sense is there is a very decent chance asymptomatic recovery may be possible. Time will ultimately tell. I'll def be updating whatever my results end up being, but hoping to give good news

KellyR, I've always had problems with huge herxes. I tried DSF and initially it was too insane. Even small/pulsed dosing was challenging, but given how I responded to this med I knew I could make huge progress with it and was hellbent on finding a way to take it. So I pushed doc to try combo antihistamines for likely MCAS issues that I thought were amplifying the flares. They have proven incredibly helpful, flaring was still strong but much less severe. Currently taking: zyrtec, zantac, singulair, ketotifen. They also suggested I could add cromolyn if I felt the need.

Ok seeing how you had strong herxes as well makes me want to try this even more. I am going to have to go back to my Nd and start begging.

Mast Cell Activation Syndrome, a disorder where the immune system becomes hyper-responsive, producing allergy-like symptoms.

BTW, if you don't understand a term, there's a handy 'cheat sheet' here:

https://www.healingwell.com/community/default.aspx?f=30&m=3722012

Thanks so much KellyR, so glad it can be of interest! sorry for using so many acronyms, if you have strong flares def consider looking into mast cell activation issues. Lonnie Marcum wrote some great articles on it on lyme disease.org, in my view a lot of patients who have quick and strong flare responses have some degree of MCAS exacerbating the responses. If you can tackle that, it could theoretically make treatment a little less uncomfortable.

Are you familiar with the disulfiram facebook group? a lot of patients are sharing their experiences there as well, I've found it very helpful. Also gives a good idea of the range of responses people are getting (monster flares seems to be par for the course in about 80% of people or so, Dr H says disulfiram gives the biggest flares of the meds he used at scale).

haha!!! I don't mean to be a proselytizer, it's early days yet. Just do all your research beforehand to get a feel for it. I read Dr Liegner's case reports, and paid close attention to range of experiences in the facebook group. It's been so helpful and helped me put my responses in context! I do think this treatment is really promising, my vibe is it could help a significant subset of patients (but given complexity of cases it will likely still take careful combos and improvisations tailored to individual cases). I suspect patients who could benefit more are those for whom lyme/babesia are key to driving their disease complex.

Time will tell, still a lot of unknowns because we still don't know necessary length of treatment and how people do post-treatment (in regards to possible relapse in the longer term). My guesses? for best chances patients will have to be on it for "x" amount of time at full-doses (still somewhat indeterminate as to what that actually means) to achieve high enough levels of med for long enough period to truly break the back of the infections and get to all the nooks and crannies it hides. The trick with this is many patients will struggle with flare responses, making it hard to achieve necessary dosage/timeframes to apply a proper "full court press." But there are workarounds, and I would think a slow ramp-up approach will be necessary for most, and then you try to hit the higher doses for a sustained timeframe. I would think that's the window where you can inflect against the infection, I think... Very curious to see the results in the longterm with this treatment, I hope it can prove so fully effective that relapse rate will be low. But no one knows yet, depends how fully effective it is in getting the last bastions of infection throughout body...

I think that one had more trouble sustaining remission if memory serves. Was that the same patient who also had a lot issues maintaining therapy because flares were proving too much?

Starting this up myself today. Doctor said 125 mg every other day. Might do every 3rd but we’ll see how I’m doing.

Will provide updates if people are interested

Yes, please do give us updates, Brab!

Hi I am having a very positive response. Earlier today I took a small dosage (about 50mg) of Disulfiram. Previous to this I have been doing treatment for years and did 18 months of antibiotics. I have been stuck at 95% since April, with some setbacks but no longer then a week. I stopped taking antibiotics and only did herbs. If I fasted and exercise, I could get to "96%" but generally stuck at 90-95%, with two weeks in June/July really bad.

I want to say this, although this could be to optimistic and the placebo effect, I feel 100% (or better) just from taking a small first single dosage. I have no side effects so far, but I'll update later on the week. I was going to ask my LLND about this drug but got to frustrated and just bit the bullet.
Small other things to note, I got stung by a wasp and felt fine. Also I felt bad after drinking a coconut drink - I would stay away from processed fruit just in case. I had some itches about 45 minutes after taking it, but now 5 hours later I have no itchiness.

The last time I felt this good was the first two weeks of antibiotic treatment, which wore off after 10-15 days and then I ran out. Since those two weeks I haven't felt this good until today. Again this could be a placebo effect but I doubt it. And I am hoping this doesn't wear off in two weeks like antibiotics did. I'll keep posting what I find. My goal is to permanently get to 100% of course.

Some other things I took that could have made me feel good: 2 grams of L-Argentine, 1 table spoon of epson salt injested, salt, potassium, iodine, zinc, selenium (which I do once or twice a week, usually on Saturday), coffee and yogurt. The herbs I was taking is simply Oil of Oregano and Garlic.

Yeah I got it from ADC. Apparently, according to some sites I found on google, 250mg is not a controlled substance. Here's a semi-useful list of interactions:

"drugs.com disulfiram interactions"
https://www.drugs.com/drug-interactions/disulfiram,antabuse.html

please note there is a major interaction with Flagyl (metronidazole) and a grey interaction with Melatonin. Half life of "60 to 120 hours" and then no drinking for 2 weeks so the body can create the enzyme to break down alcohol.

and this page has more useful information : https://www.drugs.com/pro/antabuse.html#s-34071-1

I took such a low dosage it probably just slightly knocked down only whatever was in my blood, but it definitely gave me an uplifting feeling. I'm going to take a wild guess and say that my body has already recovered greatly from lyme, but its still there and what was there was causing my body massive stress and what I took was just enough to give my body a break -- and it is still on overdrive, but it doesn't need the energy, so there is a surplus. aka uplifting feeling. also could be a placebo effect BUT I'm going to contact my LLND and get a real protocol.

I wanted to know if was going to cause psychosis

Post Edited (oregonhay) : 8/25/2019 11:29:37 AM (GMT-6)

sebreg said...
Hi Kelly, I think it depends on where you are located. Some places allow NDs to write prescriptions.

Are you in the disulfiram group on facebook? if you are, use the search function "Canada." Thread comes up that mentions a doctor that several patients are seeing in BC.

How you feeling now Sebreg? And everyone else on it?

sebreg said...
Hey Steelogreens! good thanks, still hitting 500mg/daily. I had mentioned I'm taking a bunch of antihistamines for the flare responses, which have been super helpful. But the ketotifen does seem to add to my wooziness, so I tried to go off of it. I also wanted to test if I still needed it in regards to managing the flare responses. Unfortunately, my die-off symptoms ratcheted up, and I realized it is still helping a lot in capping the flare severity. What I'm going to try and do is take half a dose of the ketotifen, might be a good compromise. But the one good thing with hopping off it for a day, it showed me the med is still working hard and creating die-off.

The flare symptoms are downcycling in severity over time, so it is getting easier overall. But dsf is still doing some heavy-lifting!

Did you say you were planning on taking DSF? do you know if you will be starting soon?

Thanks for responding so quickly.

What are your herx symptoms like? Are they like mine and fluctuate daily? Are you working? Sorry I’m just getting really impatient and I want to get on this ASAP.

My doctors not in office this week so I’m trying to get in next week. Not trying to make friends here so going to bug her until she sees me ASAP lol. Just tired and sick of all this and I want freedom.