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Posted 7/20/2019 1:53 PM (GMT 0)
It's nice to see others posting about this med.

I jumped in a few weeks back mentioning I got absolutely destroyed by starting off with too strong a dose. Was completely shocked, as my stronger baseline made me think I couldn't get whacked to that level anymore. My goal is that I'd like to dislodge some of the remaining residual symptoms, namely chronic headaches (often pressure), concentration issues, and fatigue... those symptoms used to be a lot worse before all the babesia treatments I went thru but they still impact my quality of life significantly.

Took 500mg for 3 straight days and it caused a massive flare that built-up (long half-life) and triggered really bad nervous system episode. This has often happened to me with long half-life babesia meds... the nature of the flare, nasty nasty pressure headache, fatigue, anxiety, insomnia, all dovetails with my classic babesia flare responses. Based on what I've seen this med has good activity on malaria and some other helminths, seems it hits the protozoa I have more strongly than anything else I've ever taken. And at this point, there aren't a lot of medicines that can make me flare too strongly, another reason this disulfiram response took me by surprise.

I'm convinced this drug can really help me level my health up, as past experience has shown me it's always the meds that make me flare to hellacious levels that end up giving me the most progress. I'm trying to improvise a dosing schedule that will be much more conservative and hedge against massive flare build-up. Currently trying 62.5mg 1-2x week, even just that small dose (took on Monday) hits me really hard. I'm in the disulfiram group on facebook, it seems there are a few patients there who also have massive flares to this thing and are having to improvise extremely conservative dosing schedules like me. I've always been on that end of the bell-curve in terms of flare issues, so it's not necessarily typical, but if you have always had issues with strong flare responses and are considering this drug you may want to approach with care...

Trying to incorporate as much detox as I can, giving l-ornithine a shot (in case headache is build-up of ammonia from die-off) along with various things for MCAS. I do believe one major reason the flares are so bad and this infection(s) made me so sick in the first place is immune system hypersensitivity to the organisms/toxins. If you have any suggestions for MCAS things I could try I'd be love to hear it. My doc is putting patients on combo antihistamine with this therapy (reasoning unexplained, need to ask for specifics), also going to start incorporating quercetin, stinging nettle, things like that.

Hope you are all doing well, sorry I haven't been present these last months. Please feel free to reach out to me anytime if you ever have any questions or suggestions for me. I'll try and keep posting updates as I progress with this therapy. And if you are interested in this therapy the disulfiram facebook group is a great resource.
Posted 7/20/2019 2:30 PM (GMT 0)
Thank you for the update.
Interesting link to babesia as primary flare up.
I wonder if others are having multiple coinfections flare simultaneously, and it's too much flare?
Posted 7/20/2019 3:37 PM (GMT 0)
Absolutely, I hope that this first cohort of tick-borne disease patients getting on this therapy can help others by sharing our experiences. I certainly wouldn't recommend this treatment unless you've exhausted main frontline treatment options first, because at this point there are still a lot of unknowns in how this drug may be working for these infections. Once there is a bit more info out there, it may become one of the first options. Several studies are in the works at the moment.

While I'm annoyed at the flare, I do find it encouraging because given my previous experience with medicine and flare it is always indicative the med will end up giving me improvement.

There are some different studies on this drug and how it hits various parasitic pathogens. I found this one interesting in regards to dsf and malaria because it explains mode of action, and maybe drug has similar indirect (albeit effective) mode of action against babesia? https://www.ncbi.nlm.nih.gov/pmc/articles/pmc413130/?fbclid=iwar0bjahfnk-ka09nmvrcaqgpj0dfrskml2tfgk2mmvdyjqflmsowac5wuio

Dr Ken Liegner's overview of three patients treated on disulfiram also seemed to anecdotally suggest it was effective for babesia.

Yeah, this drug may have wide activity against different infections. For those with larger pathogen burden and/or flare response issues prob a drug you have to work into with conservative strategy. I'm curious as to whether it has any activity against bartonella. Liegner seems to say no, but I'm going to pay attention to patient accounts, hopefully we'll start getting a better idea of which infections it hits...
Posted 7/20/2019 5:03 PM (GMT 0)
are you taking Dihydromyricetin?

what you are calling a flare or a herx may simply be the build up of the high levels of acetaldehyde that taking DSF causes

https://www.healingwell.com/community/default.aspx?f=30&m=4138497
Posted 7/20/2019 5:57 PM (GMT 0)
Thanks for sharing, sebreg.

I was wondering if there are any concerns with starting at a low dose. I believe it was Charlie55 who noted that the one patient who relapsed (in the recent study of 3 patients) was the one who started with a lower dose.

It's an extremely small sample size I know and there could be plenty of other variables involved, but could there be a problem, perhaps with Spiro/protozoa building resistance?
Posted 7/20/2019 6:24 PM (GMT 0)
Lapis_29: I was wondering about some of those supplements, will do some research. Given I have had the same exact pattern of flare across multiple long half-life babesia drugs (malarone, coartem) and this is a flare of my base symptoms I'm quite convinced that's what driving my issues (die-off related). The symptoms build-up and crescendo in the same manner, same head pressure, fatigue, anxiety, insomnia, etc. Not to say the acetaldehyde isn't a compounding factor as I do drink coffee, but given my minimal DSF dosing and massive response I strongly suspect pathogens have major susceptibility to this drug which is playing a role in driving flare response.

Potsnpans: Yeah, I've seen this question in the fb group. It's a good question. I wish I could just go full dose and avoid any concern on that issue, but I feel pretty confident resistance won't be a problem (not to say it isn't possible). Presumed mode of action may make it harder for resistance to build (at least for babesia, which I do think is my main driving infection). And that 3rd patient, I need to go back and review their case, maybe there were complicating factors, like bartonella or other infections not susceptible to the drug... Some of the studies they are doing now I think will assess dosage and effectiveness for the infections...

I really feel I can make slow and steady progress with this med, when a med draws out a flare this strong, my sense is that the babesia/pathogens have very strong susceptibility to it and I can usually get a lot of run out of these type of meds, even with pulsing... but of course I can't fully predict these things... I will certainly update and let you guys know how it goes! maybe I'll be able to build up dosing more quickly than I anticipate, hard to predict, I try to listen to my body with these things while still pushing as hard as I can...

Dr Liegner does mention a careful ramp up approach as some patients have the strong flare response and cannot tolerate larger doing, at least initially. But we are still guinea pigs when it comes to these things, so at this point it is all educated guessing.
Posted 7/23/2019 4:51 PM (GMT 0)
Hello.Sebreg I'm sorry I'm writing in your topic.
I chronicle, lyme, bartonella, babesia, without successful therapy with all medicines.
Recently accept disulfiram.
I am so glad that I started with 75 mg every other day and gradually increased it to 150 mg every day, I haven’t tried anymore, there are 500 ahead.
All my symptoms flared with 75 mg. I am amazed and it is hard for me to take a daily dose of 150, just like a bat.

Post Edited (Roxybutin) : 7/23/2019 10:55:21 AM (GMT-6)

Posted 7/23/2019 5:01 PM (GMT 0)
I have a question for you sebreg. what's up with the breath? I often began to notice that it was necessary to inhale and expel deeply and ventilate the lungs.
Posted 7/23/2019 5:04 PM (GMT 0)

Roxybutin said...
I have a question for you sebreg. what's up with the breath? I often began to notice that it was necessary to inhale and expel deeply and ventilate the lungs.


I'm not sebreg (obviously) - but that sounds like maybe you're having a Babesia herx? Could the disulfiram be hitting that infection?
Posted 7/23/2019 5:15 PM (GMT 0)
Everything is possible, but earlier I was not so herx. I read that there are two ways for the release of disulfiram metabolites, and one through the lungs and it looks like I am experiencing this way.
My herx from babesia - headache, anxiety, terrible fatigue, brain fog.
It looks like the body requires high oxygenation.
I have already developed herx of babesia, bartonella and lyme symptoms in the current treatment, but maybe this is a new one. Who know...

Post Edited (Roxybutin) : 7/23/2019 11:20:23 AM (GMT-6)

Posted 7/23/2019 7:40 PM (GMT 0)
RainyCloud: Thanks for the idea, might be something to try. In general for me it tends to be long half-life meds where build-up of med in body sneaks up on me to create intolerable herxes. I'm starting to find my footing with this med though! btw I saw your bvt thread, it sounds like you are making lots of consistent improvement over time with that therapy! hope you can get back to it soon, was sorry to hear about the apartment issues, but glad that you are holding steady in the meanwhile...

Roxybutin: This med is a doozy, hits like a jackhammer doesn't it?! at least for some of us... it flares my babesia symptoms like crazy. For the breath, yes I get this with the babesia herxes (not saying this is the case for you, but it could be possible if you have other babesia flare symptoms, this med has antihelminthic activity).

So breathing issue (air hunger, etc) I think it is related to babesia die-off/toxins affecting the autonomic nervous system. I have found that things that relax the ANS are helpful for those symptoms, high dose l-theanine, teas to relax nervous system (chamomile, lavender). If it gets very bad I have to lower med dose otherwise it overwhelms me... and long time ago did take benzos for a spell and that would always help calm symptoms (but at this point I'd just rather lower med dosage than take benzos). Donjr posted that his llmd recommends trying liposomal melatonin for autonomic nervous system symptoms. I am also doing tons of detox, most helpful being infrared sauna, epsom salt baths, lemon water alka seltzer gold, and taking things for MCAS like quercetin/stinging nettle. These things are helping keep the herxing within my limits.

Are you on the disulfiram group on facebook? I find it very helpful and informative. If the 75mg/daily is drawing out too much flare, you could try talking to your doc about pulse dosing. Dr Liegner (he has written about this publicly so hopefully it's ok that I use his name) stated that he starts patients at 62.5mg dosed every third day. As patient acclimates, then can increase dosing as tolerated. For those of us who have the strong flares, this conservative approach may be helpful.
Posted 7/24/2019 5:40 AM (GMT 0)
Thanks for the information!
It looks like I'm anvil and they hit me with a hammer.
Maybe I really have a new symptom, no treatment has been beating so hard for me. The truth began to notice that the head is being cleaned, especially in the morning and before taking disulfiram.
Melatonin take at night.
In this forum, read that doctors are canceling the use of glutathione (NAC) with disulfiram? You do not know why.

No, I'm not a group on Facebook, my spoken English is bad.
Posted 7/24/2019 10:05 AM (GMT 0)
Interesting topic, thanks sebreg. My opinion isn't worth much, but it is what it is. IMO, I think the Disulfiram is acting as an inhibitor of the efflux pumps on various fungal species. The main form of resistance for fungi is to increase their P-glycoprotein efflux pumps and they pump like there is no tomorrow. This decreases the concentration of toxic substances that can damage or kill the fungi. Disulfiram has been shown to be very effective in killing fungi, yeast, candidal, and aspergillus isolates. It's not Amphotericin B good, but nothing is. Disulfiram also works well against resistant fungi. All of this has been shown in the literature.

What I believe happens is Lyme patients is when the borrelia infection starts, it alters our GI flora and allows for greatly increase yeasts and fungi. The increase in yeast concentration prevents our GI tract from recovering without their removal. The yeast end up sequestering metals on their metallothioneins and when the Disulfiram kills them, we have to deal with the unbound metals. Because of our limited antioxidant capabilities, we suffer herxes until all the metals are bound. That is why liposomal glutathione can often help with these types of herxes.

All of this has been shown in the literature, but it has to be pieced together because it is such a vast topic.
I've got other reasons why I say this, but they are really deep. They are more of a hypothesis.
Posted 7/24/2019 1:54 PM (GMT 0)
Roxybutin: Ah yes, in regards to NAC and glutathione, what I have heard is that they reduce the amount of disulfiram in the body.

Georgia Hunter: Hey Georgia, how have you been?! thank you for sharing your insights on this! Even if this is hitting protozoa in my case I also think it has to be hitting other underlying things as well. But I do suspect the protozoal infection is the lynchpin in my situation.

I'd be curious as to your take on this particular study. After I first took the disulfiram and it flared all my babesia symptoms, gave me same flare as malarone/coartem/antiprotozoals, I suspected it was hitting underlying protozoal infection. And very very hard! I wanted to see if I could find anything that might explain possible mode of action against protozoa. So I looked up studies involving malaria/disulfiram, and I came across this one, suggests the dsf affects metalloprotein oxgenase process for these organisms and the metal ions they need:

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc413130/

I talked to my doc yesterday and mentioned this study. They hadn't heard of it, but when they looked it up they were very surprised at how inordinately effective dsf seemed for malaria at what they called basically "homeopathic" doses! (they were also shocked given its effectiveness as to why it hasn't been more widely adopted as a frontline malaria treatment, I have my guesses!)

Abstract:
"Plasmodium falciparum in culture grows optimally at 3% oxygen. Oxygen levels down to 0.5% still support growth, but anaerobic conditions do not. These findings, and the absence of the Krebs cycle in Plasmodium, suggested that in this organism oxygen may not function in electron transport but rather may act through metalloprotein oxygenases. Tetraethylthiuram disulfide (Antabuse, disulfiram) and its reduction product diethyldithiocarbamate inhibit many metalloprotein oxygenases and have a lipid/H2O partition coefficient and high binding constant for metal ions, favoring selective toxicity to the malaria parasite. These compounds exhibited active antimalarial effects in vitro in concentrations down to 0.1 microgram/ml, the lowest level tested. Tetraethylthiuram disulfide at a level as low as 1 microgram/ml inhibited parasite glycolysis with no effect on glycolysis of normal erythrocytes. Erythrocytes pretreated with this drug at 10 microgram/ml did not support growth of the parasite."
Posted 7/24/2019 5:08 PM (GMT 0)
Sebreg, can you ask in group Facebook about dopamine b-hydroxylase inhibition?
I found out that 10% of patients on treatment develop mental problems while taking, psychosis.
I found two things that help us get epinephrine from dopamine - cold reduce inhibition and take ascorbic acid (vitamin C).
ps. on disulfiram still bananas are not desirable to eat.

Post Edited (Roxybutin) : 7/24/2019 11:17:29 AM (GMT-6)

Posted 7/24/2019 9:47 PM (GMT 0)
Hi Sebreg, does your doctor feel that taking antihistamines with antibiotic regimens will prevent MCAS?
Posted 7/25/2019 7:07 AM (GMT 0)
I believe I read the abstract when you posted it the other day. I read the entire article this morning and spent 15 minutes calculating the dose because I thought it provided insufficient blood levels. I was wrong, a 500mg daily dosage would be sufficient to reduce parasitemia. They list the charts in micrograms per ml but list the concentration as mg per 100 ml. I should have seen that so I must be slipping.

I can knock back my protozoans with atovaquone, Nigella sativa, and even ivermectin. None of these result in eradication of the parasites even in higher dosages. The ivermectin resulted in no herx but alleviation of symptoms, the atovaquone resulted in a moderate herx and alleviation of symptoms, and the Nigella sativa can put me down for at least a day with a decrease in symptoms. That makes me think my problem is more than just protozoans.
Posted 7/25/2019 2:23 PM (GMT 0)
@Roxybutin: ok, will see if I can get any info on that!

@sunny40: It was mostly that given my flare experiences to babesia treatments were so extreme, they concurred that there is likely an MCAS-component exacerbating these responses. I'm on quite a few antihistamines, zyrtec, zantac, ketotifen... But they really do help me tolerate the treatments and take the edge off the flares! So in my case the MCAS seems very much driven by the actual infections.

@Georgia Hunter: Nice! I think disulfiram has activity against fungi and quite a few different type parasites. The one thing it doesn't seem to really touch are gram negative bacteria. Yeah, each of our cases have such variability, prime driver of disease state is different from person to person, and for many of us could be some occult pathogen or something else entirely. In my case, as I finish up this treatment and if symptoms are gone I will be close to 100% in thinking lynchpin to my illness was some type of protozoal/parasitic infection, with higher probability being some type of babesia. I already lean heavily towards this thinking given my core symptoms and which meds I flare to...

@RainyCloud: Thank you RainyCloud!!! same with you, we are all pioneers no?! I love that you keep the BVT threads updated, for me assessing other patient experiences with the various treatments has always been helpful to better understand treatment strategies/options/risks. Also, when I was at my sickest, I needed to see that people could improve and get better, because it seemed so impossible at times.
Posted 7/25/2019 2:37 PM (GMT 0)
Hey man. I haven't been around much myself and know nothing about that drug but wanted to say good to see you again!
Posted 7/25/2019 4:25 PM (GMT 0)

Aerose91 said...
Hey man. I haven't been around much myself and know nothing about that drug but wanted to say good to see you again!

Aerose91! so good to hear from you! How have you been holding up?
Posted 7/26/2019 12:02 AM (GMT 0)

sebreg said...

Aerose91 said...
Hey man. I haven't been around much myself and know nothing about that drug but wanted to say good to see you again!

Aerose91! so good to hear from you! How have you been holding up?

I'm still here so that's a positive. How are you feeling, man?
Posted 7/26/2019 2:01 PM (GMT 0)
I hope you've been able to find things that help with symptoms.

Good my friend! feel I'm turning the corner with this med, strong flaring but baseline symptoms are receding. Sense is it is torching the last bastion of babesia that no other drug could touch.
Posted 7/26/2019 5:13 PM (GMT 0)
It must be something to take babesia by the balls.
Disulfiram is a very heavy drug from those that I drank, and herx babesiosis is the foulest, herx for lyme and bart garbage.
Sebreg, how long you take disulfiram, 3 weeks or more аnd how are you mood, changing during the day?
Tnx

Post Edited (Roxybutin) : 7/26/2019 11:33:48 AM (GMT-6)

Posted 7/26/2019 5:38 PM (GMT 0)

sebreg said...
I hope you've been able to find things that help with symptoms.

Good my friend! feel I'm turning the corner with this med, strong flaring but baseline symptoms are receding. Sense is it is torching the last bastion of babesia that no other drug could touch.

Love to hear that! Are you able to keep pretty active with treatment?
Posted 7/28/2019 2:47 AM (GMT 0)
Dr. Mary Ross recently talked about disulfiram
https://www.youtube.com/watch?v=xb613rterry
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