Disulfiram update

Hey Sebreg, would you mind going into greater detail about your herxes? Our situation sounds almost identical.

Primary infection babesia etc etc thought I had borrelia under control, rated myself at 95%, had a good number of symptom free days in the last month or two. Anyway, I just started DSF 5 days ago, went 500mg daily until ---> 1g yesterday and the day prior. Huge flare of symptoms for me that I didn't think was possible given how well I'd felt. Borrelia symptoms too. Carditis, joint pain, headache, muscle aches etc. I want to stress that the depression and neural problems were present but really increased upon me upping the dose to 1g (reckless, i know).

Now I'm getting STRANGE neuropsych stuff like headache, depersonalisation, a general feeling of disconnectedness and numbness, vertigo/very poor balance coupled with milder peripheral herx stuff like joint pain and aches etc.
Does this mirror your symptoms at all neurophysically? Cause I feel like I've been drugged hey, trying to the herx from what are potentially side effects from too much DSF. Input would be greatly appreciated.

Great, and do you attribute that to lowering the dose and thus side effects or an improving herx?

Aerose91: Unfortunately I am not able to do much while on treatment, having to take a bit of time off everything. My sense is this break shouldn't last too long, but as always these things are hard to predict. I feel the pathogen load is relatively low at this point...

Benfast: Those symptoms in the last paragraph sound babesia-related no? def get the depersonalization and things of that nature, head feels suffocated, can't concentrate, especially with a large flare that builds up. I'm a bit dizzy and woozy as well, I do think it's mostly flare related but possible it is drug side effect. But the severity of all those neuro symptoms match up with degree of severity of other classic symptoms for me (like lymph node swelling), so I lean heavily towards flare. Also insomnia starts getting bad.

When it is getting too much I take a break from dosing for a day or two, which really eases everything up. This drug is STRONG. The die-off can really build-up, especially with consecutive days of dosing 500mg... I had to skip dosing yesterday...

1g is a lot for this medicine. I think both for flare/side effect potential dosing at max 500mg may be safest play. Plus there is a lot more literature of using this drug at that dosing framework. I get the recklessness, I so want to just be done with this and it leads me to get overaggressive with the therapy.

I hope it eases up for you, don't feel badly if you have to take a day or two off dosing, catch your breath. Maybe consider lower dose or pulsing, the long half-life can trap us into thinking we are ok until we've built up large amount of drug in our body which is when we can get in trouble, it's the cumulative build-up of the long half-life drugs that always caught me with the nastiest flares.

Btw are you in the disulfiram group on facebook? very helpful. And I don't know how it is for you, but when I'm grinding thru a treatment and trying to manage the flaring I always find it helpful talking with others who "get it."

Oh nice, glad to hear you are on there, I've caught your posts! I'm the guy with the cartoon rabbit as profile pic ;) You are also on tefaquine or something like this? Is that one giving you good effect on the babesia? yes yes there is high variability in the lyme groups of course, but this one is pretty solid by comparison. Quite a few knowledgable members as well, including some with formal science/medical training of some type.

Thanks so much for breaking down some of the biochem, I need to go back to the malaria study and carefully read through that info. I have little knowledge on biochem and organism biology, but I am keen on learning as much as I can because I like to understand what is potentially going on with treatment to the best of my ability. I've had a hard time finding out basics about babesia, including replication cycle. Old school info was 5-7 days, but more recent study suggested it could be closer to something like 24hrs (the one looking at /in/efficacy of current babesia therapeutics, in vitro study)? And one thing I recall is Dr J in DC saying babesia is a larger organism (contextually speaking/other tbd), so some patients have harder time with this die-off because die-off includes greater toxin-load per organism. I don't know if this is true or not, never could find out more on the subject.

I did 500mg for 3 straight days then basically smashed into a wall where the flare just got to be too much. Have taken two days off, still moderately shaky but going to restart at 250mg every other day and see how that goes. I'm trying to push as hard as I can without going over the redline, I'm liable to trigger very bad nervous system response/attack when a certain die-off threshold is reached, and it takes a while to downcycle out of those.

I'm taking time off work because I can't concentrate and think straight with my flares (although allergy research l-ornithine is really helping with the head pressure symptom). It also plays into my impatience as I'd love to minimize the amount of time I take off, I don't feel so far away from inflection point, my pathogen load has been significantly reduced over time but obviously there is still some left given my response. But given how this drug is working, I've never felt so optimistic that remission is possible. Treating this babesia has been an ungodly effort, like moving a %#$%%$ mountain.

Sebreg: Man tafenoquine has been absolutely fantastic and I've only been on for two months. Best thing I've ever had for babesia. I don't get sweats, chills. or crawling skin EVER anymore. Just stubborn shortness of breath (babesia), carditis (borrelia), and headaches (could be either)
You seem to do well for someone with no formal training! some of the studies, like that malaria one, are almost impenetrable haha. Yeah i know the paper, the one where they established babesia duncani continuous red blood cell culture and found pretty much nothing was effective against it at relevant concentrations. That was discouraging. Dr J sounds correct there... if the immune system reacts to fragments and the fragments are larger... larger die off inflammatory response.

Good man. Good to see you smashing into it. We have gold on our hands here I think, best to leave no time wasted. L-ornithine hey? I may get some, because as soon as I resume dosing I have a near constant pressure headache or throbbing head + depression. It is amazing how quickly it comes and how long it stays for. What is the mechanism of action of the L-ornithine do you know?

If you look at the DSF research on tuberculosis they actually show their metabolites, specifically the primary one, DETC - essentially the only form that exists in vivo as DSF reacts immediately - as having greater efficacy against TB than does disulfiram. There's also evidence showing that diethyldithiocarbamate (DETC) is an immune stimulant and enhances clearance of TB in a mouse model over and above what could be expected from the drug alone. There is also some research supporting this in HIV patients... but I don't remember the nitty gritty of it.
So to answer your question haha, the way it works now could be as strong as the DSF delivered itself as per what Lewis is working on, but we also don't have data on whether the metabolites are effective against borrelia as only the parent compound has been studied. So as it stands we are probably not exposing our borrelia to much if any DSF at all given how quickly it reacts in vivo, meaning that what we are experiencing is its metabolites killing bugs. SO if we could expose DSF to our borrelia for longer or at all as per what Lewis is working on, I would expect greater efficacy than what we are experiencing now, yes, remember - we may not be exposing ourselves to DSF for any appreciable amount of time now. So only good things on the horizon, perhaps a great leap in efficacy if we can increase DSF exposure time and exposure of our infections to its metabolites.

Sorry if that's confusing, I found it hard to word as a lot of it is conjecture on my part.

Friends, disulfiram just strikes me. The first year of treatment - I spent a week every month for a year, already for two years last I forgot about this cycle. A knee hurts for several days, like three years ago at the beginning of the journey, and it hurts all day. I am herx all day, unbelievably!
Sebreg, DSF is really jackhammer!!

Dosage is really a tricky thing, reaching the 500th goal of salvation.
I am now at 225 mg every day, every mg is difficult to give, but I am increasing the dosage, there is a lot of work ahead.
You will succeed with 500 mg, you have done a lot to be healthy and the planned events will not be able to stop you.

Update: As I previously wrote, the initial start to treatment was extremely challenging, but flare responses to this med are now much less severe (swollen lymph nodes, fever dreams, insomnia, extreme fatigue, inability to concentrate, head pressure/ache, woozy-feeling, air hunger, blurry vision). I think I've turned the corner (currently dosing 500mg 3x week, likely increase soon). I have probably treated a bit more aggressively than I should, but I'm taking time off working and wanted to try and get thru this as fast as possible (while also trying to avoid destroying myself from runaway flaring). I hoped the process might not take as long as previous treatments when pathogen load was at much higher level, feel I'm in end stages of nailing this thing.

It's still a bit hard to parse improvements given some of the ongoing flare symptoms, but this med seems to have wiped out my chronic nonstop 15 year headache (babesia headache/pressure). My lymphadenophathy behind ears is almost gone as well ( which have been chronically swollen since I first got sick). I will be able to make a clearer assessment in a few weeks. Main question is whether this treatment will wipe out the babesia and all symptoms... I'm fairly optimistic this will be a potential outcome (latter I'm quite sure of, in regards to fully wiping out the babesia maybe maybe not, just need it to be fully corralled). Very happy with how treatment is going, truly feeling optimistic.

Absolutely my pleasure, thank you for your kind comment! how have you been doing?!

Given lack of institutional research on these conditions, I strongly believe in patients sharing our experiences. Important to share both the good and bad outcomes with treatments so that other patients can look at totality of the anecdotes, see the patterns that they identify with and strategies that seem logical, and then make their treatment decisions with the best available information. I don't know what I would have done if I didn't have access to patient accounts/experiences, it has been invaluable!!!

Glad this is helping you sebreg! Can't wait to your next update. Sounds like you got so much momentum going you got this in the bag.

So.....I'm convinced. This drug is the real deal. I'm on day 35 at full dose (500mg) The herxes have been hellish but have left up significantly after day 25ish. I'm sure there will be some more trying herxes, but hopefully the worse one that came with starting the treatment is over. I have let on before it previous posts how "bad" of a case of chronic Lyme I have. It's been disabling and progressive. I was not in good condition before I started Disulfiram. I had to give up my career. I have been mostly home bound for over a year. My life was miserable before I left my career. I worked a demanding job (military) that often had me working 12 straight days in a row. My goal was to survive every day. Somehow, I'd make it through work and then I'd collapse when I got home ( think this shows the incredible power of human will and spirit). I was miserable and my health continued to deteriorate for over two years. Living like this probably helped make my Lyme worse.. I haven't had much hope the last two years. My treatments have consisted of antibiotics (LLMD protocol), supplements, colloidal silver, homeopathy, diet, exercise, all the normal things you hear about. I have only had minor improvements, specifically over the last year, despite aggressive abx treaments. I would consider myself an antibiotic treatment failure.

Disulfiram has worked me, My condition before starting on day 1 and my condition on day 35 is night and day. I don't really know how to describe it. It feels like a dream. I still don't believe I've improved this much in 35 days. I know some are going to be skeptical and think "too good be to true". I'm just being honest. I had to go through hell for about two weeks of a crazy herx to get here. I am still symptomatic and expect to have some bad days going forward due to herx or flare. But...seriously guys...this is working for me and I expect it to get me better. To better frame this......if I was absolutely forced to go get a full time job at this moment I'm confident I could do. I think it would be miserable at times, and would not be ideal for my long term health because I'm in a critical healing phase right now, but I think I could do it.

I'm not saying this is a miracle drug. There are no absolutes in medicine and especially not Lyme. I'm sure somebody will fail this treatment. I'm sure there will skeptics. I'm sure there will be fear-mongerers. Despite all that, I think this will be the go-to drug for both acute/chronic cases of Lyme in a few years.They will need to acquire more data to nail down both the duration of treatment and what dosage to use for max effectiveness and to administer safely as possible. Disulfiram is going to give many people who have lost hope a greater quality of life and relief they never though they would get. I truly believe that.

I'm not here to influence anybody any type of way. I strongly believe in one's ability to make their own health decisions. With that said, if my words of chronic illnesses with Lyme, lost hope and failed treatments spoke to you I strongly encourage you to educate yourself on Disulfiram (DSF). If you are somebody in Sebreg's shoes (recovered health and functioning but want to make further improvements) I strongly encourage you to educate yourself on Disulfiram (DSF). If you have any association with Lyme; be that you are a recovered chronic Lyme, you are newly diagnosed, you have an acute case, you are a caretaker, you know someone that has lyme, if you have a general care for, or are curious about Lyme in any way, I strongly encourage you to educate yourself on Disulfiram (DSF). In my honest opinion, this is about to be a game-changer.

WARNING WARNING DISCLAIMER: As always, please please please don't do anything without being under a doctor's care. For DSF, your best bet if to find a practitioner who is knowledgeable about what is going on the with drug and Lyme right now. Fair warning, that may be a tough task to accomplish right now.

TRANSPARENCY NOTE: I only got my liver levels tested for the first last Friday (8/2). When I get those results back I will share them publicly.

Post Edited (Lymie24) : 8/5/2019 9:38:09 AM (GMT-6)

Sebreg - this is amazing - I’m super happy to hear your enthusiasm and I truly hope this is the “finisher” for you!

You’re right about the non lyme patients not getting it . I also don’t go into detail with most of my friends - how can you even describe what you’ve gone through...and how could they even relate?

Cheering you on!!!!

Thanks so much Girlie! how have you been?! I think I had read recently that you are still flaring to some bart treatments? have you seen some progress with the bart treatments? I came across some patients who seem to be saying they are seeing good results with gallium nitrate for bartonella. I don't know anything about it.

Never felt so optimistic, it's a bit surreal. I need to not get ahead of myself either, but I'm excited.

Unfortunately it's true, LOLA is rather expensive. Surprisingly helpful though. I also have heard yucca root helps in a similar way to detox ammonia, and I think it is cheaper.

Sometimes I wish I could properly explain this experience to people who haven't walked this path (maybe it is an overwhelming desire to have one's suffering understood, accepted, validated. in the end all that matters is that I respect the experience, respect myself, and do my best to avoid chasing outside validation). And I think if one gets going on talking about it to people outside this experience window, they can interpret it as whining, exaggeration, or viewed as showing off one's suffering. So in the end, if someone asks me how I'm doing, I just say eh I'm ok and leave it at that. Or if I can't do stuff I just say not great today have to take a pass but I avoid details. Ultimately, I try to respect the experience, respect myself, talk with those I can when I need to (this is where patient forums and groups have proven soooo helpful), and then do whatever I can to keep getting better and grinding thru this thing. There is a level of ptsd and fighting thru a hell with this, and talking to fellow patients who walk the path does me an inordinate amount of good.

I hope you are hanging in there, making improvements!!!

carlnpa said...
Benfast
Just to point out - DSF is broken down immediately so it is the metabolites of DSF that are the mode of action.

Getting "more" DSF into the bloodstream may not be the goal.

Getting more of the active DSF metabolite would be the goal. It could be synergistic compounds also, I saw a paper on the DSF metabolites, there are many.

Yeah the metabolites certainly seem to be active. They have trialled a few on other bugs as well it seems. I thought that in the in vitro work we’d be looking at the parent compound acting however, as it’s not cast into a metabolic milue like it is in vivo and thus doesn’t react like it does in vivo. And therefore thought that probably disulfiram and it’s metabolites are both active? What do you think?