Disulfiram - Part 1

My herx symptoms have always been neuro-heavy (fatigue, air hunger, headaches, inability to concentrate, insomnia) along with lymph nodes behind ears swelling. Flare symptoms do fluctuate in severity though day to day.

So, unfortunately on this treatment I am having to take a break from work (neuro flares are just too strong). That said, I made the conscious decision to treat as aggressively as I could, and whenever I'm treating aggressively with an effective medicine I'm basically unable to work. I could have drawn it out and possibly worked if I had gone a much more conservative treatment route (lower dose and pulse). But at this point in time, I had the luxury to take time off work, and being exhausted and fed up with symptoms (like you!) super impatient to see if I can clear symptoms, try to be done with this, and see how far this treatment can take me ultimately! I have little stomach for a long drawn out approach at this point haha! that's also part of the reason I do all these MCAS antihistamine combos, I'd be unable to treat as aggressively as I am without them...

That said, I know a lot of patients are going the slow lower dose pulse dosage, especially those who MUST keep working thru treatment. But keep in mind, even for many patients who can take time off, a slower treatment approach may be advisable in regards to the potential flares (my doc has scaled back the ramp-up approach to make it much more careful and conservative because most patients were herxing at ridiculous levels). It's all about improvising based on each patient and their situations!

hi Lapis_29, I haven't, but had been considering it. I was trying to follow people in the fb group, a few are taking some of those things. So far I feel all my symptoms are related to die-off. I do have some taurine on hand, may give it a shot to see. Do you know if it reduces concentration of the DSF? personally I know nothing about the chemistry or any possible interactions so it might be a silly question.

NAC also binds acetaldehyde

So yesterday I took another 50-70mg. If I tilted my head all the way back I could feel my lymph nodes were swollen. What would happen before on other drugs is my lymph nodes would swell, and then it felt like they were "leaking" something and I would get a rash down the side of my neck -- like my body was collecting something, moved it there, and then it reinfected my neck. This didn't happen.
So this definitely confirms it is hitting something.

Then about 5 hours later, if I opened my jaw all the way I could feel swelling in the back of my mouth about one inch back in my brain near the lower part. I am assuming this is my Pituitary Gland which I have been having problems sleeping for years. I think it hit something inside of there big time. Then I had small flu symptoms for about an hour before going to bed.

I still feel 100% normal with a little "getting over the flu" feeling but it is NOTHING compared to being symptomatic. If I felt like this, I can move on with my life. But I have only just begun.

I had problems sleeping and stayed up until 3am but if it is killing something I don't care.

All of this from just 100 mg in two days. I was already at 95% and it hit a bunch of stuff at just 100 mg over two days, there's still a massive amount that needs to be killed and it is finding it. And given that all but one did not relapse in the small study, and given this doesn't wear off in two weeks, I'm looking forward to getting to 250mg-500mg daily level one day, ... and this might be extremely arrogant but I'm just going to say: I will declare total victory over this disease now. Just skip all other drugs/protocols and get this. I paid $30 plus $15 shipping.

Post Edited (oregonhay) : 8/26/2019 12:10:34 PM (GMT-6)

Somebody said...
In the liver, the enzyme alcohol dehydrogenase oxidizes ethanol into acetaldehyde, which is then further oxidized into harmless acetic acid by acetaldehyde dehydrogenase. These two oxidation reactions are coupled with the reduction of NAD+ to NADH.[36] In the brain, the enzyme catalase is primarily responsible for oxidizing ethanol to acetaldehyde, and alcohol dehydrogenase plays a minor role

Hi I am trying to quit spamming this thread but thanks to Lapis_29 correction I was able to confirm a few things said on here.

I ran out of Vitamin B3 yesterday (Niacinamide) and today I felt like crap. I had a bottle in my mailbox, went and got it, and now I feel great again. I saw the quote "with the reduction of NAD+ to NADH.." the following is on the bottle of my Vitamin B3 "Niacinamide (Vitamin B3) is a form of Niacin a water soluable B Vitamin. it is a derivatve of Niacin that does not cause the "flus" normally assoicated with taking high doses of Niacin, Niacinamide is readily converted into bioactive forms of Niacin, NAD+, NADH, NADP, and NADPH, which are vital cofactors in cellular energy production and are critical for the maintence of DNA stability"

And I found this "Nicotinic acid is needed to oxidize alcohol and reduce acetaldehyde levels, as well as provide enough niacin to make in addition adequate extra NAD to saturate receptors in the brain."


from this interesting paper, which explains the dopamine connection
https://pdfs.semanticscholar.org/17c5/2b3ba41ac5b0897b9a940a6feb4671b069d8.pdf

Somebody said...

Discovery of the Niacin Treatment for Alcohol
Addiction.
In the course of treating twelve alcoholic
patients with 500 mg nicotinic acid daily it has
become apparent that this dosage is an effective,
inexpensive and rapid correction of the metabolic
disorder which we label alcoholism (Cleary,
1985). Searching the literature, we find that the
research to prove this has already been done. At
the International Titisee Symposium held in the
Black Forest in Germany, Lieber (1982) showed
that the chemical reaction which breaks down
ethanol to acetaldehyde is accelerated in chronic
alcoholics. The second step in the chemical
breakdown of acetaldehyde to acetic acid is
decreased or slowed down in chronic alcoholics.
The net result is an elevation of acetaldehyde in
the alcoholic patients as compared to control
subjects. Davis and Walsh (1970) showed that
this acetaldehyde condenses with dopamine in
the brain to form a morphine-like substance
called tetrahydropapoveroline. They postulate
that this substance is the cause of addiction in
the alcoholic.
Lyon and Anthony (1982) have shown that a
morphine antagonist, naloxone, is able to relieve
coma caused by alcohol ingestion. Dr. Vastola,
Madison, Wis., has successfully used
intravenous morphine to relieve the symptoms of
withdrawal in alcoholic patients. I believe
alcohol addiction is caused by morphine-like
substances believed to be generated from
acetaldehyde and dopamine in the brain.
Nicotinic acid is needed to oxidize alcohol and
reduce acetaldehyde levels, as well as provide
enough niacin to make in addition adequate extra
NAD to saturate receptors in the brain.

Post Edited (oregonhay) : 8/26/2019 11:28:24 PM (GMT-6)

yes, B3 would be a great addition to the protocol

nicotinamide riboside is an expensive form of B3, but also highly effective. Great for the liver and the mitocondria. If you can afford it, I recommend it for sure.

Hey all, I’m going to my doctors next week to get prescribed.

Can you tell me if I just take it by itself or is there anything else? You’re all talking about this B3 supplement.

I don’t want to get too excited but guys let’s hope this is it. I will also tell everyone of the results. God bless. We can do this.

steelogreens said...
How long did it take after taking the medication that you found you had major improvements? Weeks? Months?

Hey there! still really hard to predict. Some people are experiencing very strong flares, so having to treat slowly and build up over time, which extends length of treatment time. Are you able to join the disulfiram group on facebook? if so, I recommend joining that. You can see a wide range or responses and patient experience.

I've knocked out a lot of my babesia symptoms with this med. But the flaring was initially very hard (if you've seen my personal accounts). I'm still getting some flare which makes it hard to fully discern what my current baseline is. I'll best be able to discern where I'm at when med stops causing any flare response, flare responses are gradually downcylcing in intensity over time. Right now I'm confident it will likely get me close to doorstep of symptom free but I can't predict how much longer that will take. I've already done a lot of previous treatments to winnow pathogen load down, so I may require a bit less treatment with disulfiram than some others. There are going to be a lot of variables involved in which patients do well with it and how long it takes to see improvement. Sorry to not be able to provide greater precision or clarity on the subject. Overall I think it could be a med that helps a lot of patients, especially those of us whose primary issues are lyme/babesia driven.

So goes without saying, my flare pattern is very specific to my own situation. I am currently dosing 500mg/ daily of disulfiram. I am still flaring day in day out, but babesia flare symptoms are pretty much gone far as I can tell (as are babesia symptoms). The severity of flares is much less, but I do have a baseline fatigue and lymph node flare (most strong in hours after I dose) that is likely from the flare (which I suspect at this point is from residual borrelia load). Often times, these flare symptoms continue until the med has run its course (is not creating significant die-off anymore). As of now, still getting die-off, just less of it. After 1-2 hours of dosing each day is when I start feeling the build-up in flare response (fatigue, lymph node swelling), usually has downcycled a good degree by the next day's dose. Have had similar patterns with effective meds in past.

would love to hear what he thinks about it! I imagine he is keeping an eye on it, but have no clue what his positioning might be. I know he has his treatment frameworks, but he always struck me as someone willing to adopt new therapeutics if they seemed promising.

Have you been doing the few days a month treatment strategy Girlie?

sebreg said...
would love to hear what he thinks about it! I imagine he is keeping an eye on it, but have no clue what his positioning might be. I know he has his treatment frameworks, but he always struck me as someone willing to adopt new therapeutics if they seemed promising.

Have you been doing the few days a month treatment strategy Girlie?

Well, I was doing it...then I found a bug - possibly a tick on my head...but it wasn't attached....and was told to do 2 weeks in a row ( of the M/W/Th/F dosing)
Well I herxed badly on the first week on Friday evening. Took me the entire next week to recover. My body hurt like heck. So I couldn't do the 2nd week.

So, now I'm wondering if the one week on, 3 weeks off isn't enough at this point....if I herxed that bad...I'm thinking perhaps the infection(s) are gaining ground in the 3 weeks.

Prior to this 'Maintenance " protocol, I was doing 2 weeks on (sometimes 3 if I did the Alinia on week 3) then 1 or 2 weeks off.
I did herx on it - not every cycle...though...

I don't know what to think....hopefully Dr. J knows what to think about it...lol. I'm trying not to be discouraged...this herx really threw me.

I've got a few stubborn symptoms...and I'm not willing/ready to say it's permanent....
People have questioned why I'm not happy about getting rid of 30 something symptoms....and only having a few left...but one of them is my worst symptom...so I really don't feel that great....not even good enough to go back to work.

I have very high expectations.
This prob comes from the fact that I have had a very healthy, active and productive life until lyme.

There are some residuals I’m willing to accept - ie my right baby finger is stiff and sore in the morning - ok - maybe it’s arthritis at this point... no big deal. My feet also hurt a tad in the morning. Not a big deal either.

I have a few lingering symptoms - worst one is the nerve pain left shoulder blade area, radiating down my left arm and hand.
Also have some lingering head pressure that I wish would take a hike.... and still some short term memory issues (but it’s much better) , POTS - (has improved) and could live with it - my heart rate only goes up to 100-105 bpm now when I stand from sitting. (Used to rise to 120/130). And often it doesn’t rise at all.