HealingWell
Search Close Search
☰

Disulfiram: Day 23 Update

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/25/2019 4:46 PM (GMT 0)
I wanted to give an update on my Disulfiram journey and I didn't want to hijack somebody else's thread. I know..I know...another Disulfiram thread LOL. Sorry

Quick Background: Early 30s Male. Bit 4 years ago (almost to this day). Lyme has been progressive and debilitating despite antibiotic treatment. Had to leave work about a year ago. Generally, my health sucks and oral ABX wasn't doing much. That's why I jumped at Disulfiram. I knew it was probably going to be a tough treatment but I wasn't working anyways so I figured what the hell. I'm a crazy person so I started at 500mg a day.

Here's my previous update on Day 6:

I'm currently on day 6 at 500mg. The most incredible thing that has happened is all my muscle/joint/bone and nerve pain has either disappeared or is only noticeable at a mild level. This happened almost instantly the after I took the drug. Insane. The first four days were awesome. It almost didn't even feel like real life. My pain was significantly less, neuro issues weren't there, and energy was slightly better than usual. Saturday, in particular, was amazing. I jumped out of bed clear-minded and full of energy. I drank a cup of coffee and hit the gym. I had an AMAZING workout. I haven't felt that good working out in years. Afterwards, my wife and I went to the farmers market and then hung out with family.

Monday is when I noticed some herxing/side effects come along. Pain has been slightly more elevated, but still not bad. Brain fog is back. Fatigue is severe right now. Fatigue and brain fogginess always crash me. When your mind and your body betray you it's a tough pill to swallow. I lose motivation and have a hard time staying positive. Still, the herx hasn't been too bad yet. I'm so grateful to be off antibiotics. I really have a lot of hope that this drug can make a positive difference in my permanent health status.

At day 23 the drug has had enough time to get in me and start working it's "magic". The best way to describe my current condition is "unwell". I have a hard time telling if it's due to being so toxic with herx symptoms, side effects from the medication, or a combination of them both. I'm leaning towards it being a combo.

Here's my list of symptoms/oddities

* Fatigue (Severe)
- On days 13 & 14 I nearly slept those entire days.
- Some days I feel very weak and it's hard to get up and do anything
- Several times I have crashed after epsom salt baths or sauna sessions.

* Brain Fog & Cognitive Impairment
- Has been constant. Severe at times
- This is the symptom I have the most trouble articulating. In the Disulfiram case report study paper one of the patients describes his brain as "mush". Ditto

* Joint/Muscle/Bone/Nerve Pain
- All are still there but present mildly for the most part. Severity has ramped up occasionally likely due to herx.
- This is probably the area I've noticed the most improvement in since starting.
- Side Note: I was dealing with Sciatica before I started treatment. I associate my Sciatica with nerve inflammation due to Lyme. Can also present with hip pain. It was never a problem pre-Lyme. I'm sill having issues with it.

* Appetite
- For the first 7 days or so i was ravenous. I couldn't eat enough.
- Due to either herx or side effects from the drug (or both) that has flipped on it's head. I'm having a tough time eating anything. Don't have much of an appetite.

* GI
- Has been constantly distressed since the first week.
- Constipated, when I do have a bowel movement it has been either not formed well or just few small balls

All other symptoms I associate with herxing have been present at one time or another. Painful lymph nodes, sore thorat, ears ringing, chest pain, anxiety/fight or flight response, impaired sleep etc.

* Side effects I associate with Disulfiram only (Probably...it's tough to tell lol)
- Coffee: I gave up coffee at day 12 when drinking starting to make me feel gross. Coffee can cause Acetaldehyde levels to increase in the body. I think that is what was happening to me.
- Metallic taste in mouth: Gross and it sucks
- Increased Thirst
- I just feel "unwell" most of the time. It's tough to say whether this is because of herxing, or the build up of Acetaldehyde or what. I just feel toxic and not very well.


I've been detoxing like crazy like crazy to stay ahead of the herx with mixed results. Detoxing has still been key. I don't believe this treatment is easy. I understand why many are starting " low and slow". If I was more functional or was helping raise a family or work a job I wouldn't be able to attempt this aggressive protocol.

Post Edited (Lymie24) : 7/25/2019 10:49:32 AM (GMT-6)

Posted 7/25/2019 5:31 PM (GMT 0)
Wow, my experience matches closely to yours.

Agree with your last paragraph, I'm in the same mindset. I treat as aggressively as I can manage, but even with that said I have had to carefully work my way into this med. Lots of detox has been helpful in controlling level of flare symptoms. This treatment seems to be eroding core symptoms for me but still draws out strong flare, but I've never felt so optimistic in all my years of treatments. My intuition is this drug may knock out my last remaining symptoms, time will tell. I've already gone thru a lot of treatments so pathogen load is not as significant as it was years ago, given seeming effectiveness/strength of this drug it comes at a perfect point for me in my journey, I see it as a potential "finisher." Honestly it would be a miracle given how sick I've been and how long this has lasted...

Increased thirst is obnoxious! I'm not quite as high on the dosage as you so maybe that explains why I don't get metallic taste in mouth.

Wishing you best of luck, thank you for sharing your experience. Keep us posted!
Posted 7/25/2019 6:10 PM (GMT 0)
are you taking Dihydromyricetin?
Posted 7/25/2019 7:15 PM (GMT 0)
Hi I have been following these Disulfiram threads for a little bit but please excuse me if I missed something

I think there is definitely something going on positive with Disulfiram and Lyme and it is appearing to be a new weapon

But I can't help to think there could be some secondary effects. I do know that Disulfiram interacts with Alcohol to cause a bad reaction so that alcoholics cease drinking. This is widely known and the purpose of the drug. It is also know that Lyme patients have mold problems, specifically with yeast. So my concern is that if Lyme people have yeast/mold problems, and yeast is used to ferment alcohol, there could be a secondary reaction where the yeast in somebody system is fermenting small amounts of alcohol and the disulfiram is reacting with it, causing side effects. This is pure speculation but it might be cause for concern to consider maybe doing a anti-mold protocol, with medication, before or during taking Disulfiram. There could be a process where when the lyme breaks down, it causes more mold, and the more mold/yeast causes slightly elevated alcohol levels in the blood stream. And also I want to point out that... there could be an extremely remote possibility that the interaction between Disulfiram and Alcohol -- what ever it does, could have an effect against lyme, although this is unlikely.

just wanted to point this out, perhaps I am completely wrong, but I felt compelled to bring this up.
Posted 7/25/2019 8:03 PM (GMT 0)
Sebreg,

I'm glad to hear you are doing better. Hoping Disulfiram can be what gets you over the finish line.

Lapis,

I have not heard of this before. A quick google search was interesting. Could this be useful with Disulfiram treatment? Any suggestions on which products might be the best quality?

oregonhay,

I've heard similar sentiments brought up before. I'm guessing your point would be that patients with Lyme could have increased yeast in their bodies --> causing build-up in Acetaldehyde (DSF inhibits acetaldehyde dehydrogenase which is the enzyme responsible for turing Acetaldehyde into Acetic Acid) --> patient with Lyme feels sick as a side effect?

Is that what you are saying? I'm the furthest thing possible from a microbiologist, pharmacologist or chemist, but i could see how how one would come to this conclusion. I would counter that concern with this however.

https://www.alcoholrehabguide.org/treatment/disulfiram/

According to this website roughly 200K people in the U.S. take DSF. Additionally, I've read that it has a high usage rate outside of the U.S. Am I to believe that all these patients who have been taking DSF for alcohol treatment haven't also had issues with yeast/candida due to bad diet or other reasons? Has there been evidence of linking the two together in the past?
Posted 7/25/2019 8:11 PM (GMT 0)
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. Dihydromyricetin breaks down acetaldehyde

https://www.healingwell.com/community/default.aspx?f=30&m=4138497

Post Edited (Lapis_29) : 7/25/2019 2:17:06 PM (GMT-6)

Posted 7/25/2019 8:15 PM (GMT 0)

Somebody said...
Molybdenum is an essential trace mineral. It is found naturally in the human body, in small quantities, and also in certain foods. It is an excellent supplement to protect your body from the effects of Candida overgrowth.

Molybdenum is particularly useful for reducing the symptoms of Candida overgrowth and for avoiding Candida Die-off. It helps to process and expel toxins like acetaldehyde that are produced by Candida albicans as a byproduct of its metabolism.

Molybdenum also might help
Posted 7/25/2019 8:19 PM (GMT 0)

Lapis_29 said...
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. Dihydromyricetin breaks down acetaldehyde

https://www.healingwell.com/community/default.aspx?f=30&m=4138497

Thanks for the advice Lapis. I posted this next statement in your thread and wanted to repost here so you would see it.



Any suggestion where to source high quality Taurine and Dihydromyricetin?

Is there any concern that by enhancing acetaldehyde dehydrogenase with Dihydromyricetin (the enzyme DSF works to inhibit) we could actually be blunting DSF's activity against Lyme? (since we don't know the mechanism of how it works against Lyme)
Posted 7/25/2019 9:06 PM (GMT 0)
Lymie24,

Yes that is what I am saying exactly. And I don't have any direct evidence it is just pure speculation. And it could be true, and not even matter. But I felt I should bring it up anyway. Or.. the worst case scenario the "herx" is just a mirage and it is actually the interaction with Disulfiram and Yeast's, but that is unlikely -- to play the devils advocate. Maybe that could be partially true AND it has an interaction with Lyme, and the benefits outweigh the risks. Or maybe it isn't true at all and the herx is 100% lyme. I am just speculating. I'm not trying to get published in some medical journal or anything LOL, just giving my free thoughts.
Posted 8/5/2019 3:33 PM (GMT 0)
Day 35 update:

My update is going this time is going to be different than my day 23. I just want to be able to give my overall thoughts and impressions on how my treatment has went this far and on the drug and it's application for future use in general. I wrote all of this on Sebreg's thread as well but will add it here for increased exposure.

--------------------------------------------------------------------------------------------------------------------------------------------------


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 Lymie, 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 firs timet last Friday (8/2). When I get those results back I will share them publicly.

Post Edited (Lymie24) : 8/5/2019 9:42:00 AM (GMT-6)

Posted 8/5/2019 5:20 PM (GMT 0)
have you tried Dihydromyricetin yet?
Posted 8/5/2019 10:22 PM (GMT 0)
will Disulfiram help with people who are stuck at 95%?
Posted 8/5/2019 10:58 PM (GMT 0)

oregonhay said...
will Disulfiram help with people who are stuck at 95%?

That's a good and tricky question. Do you believe babesia/lyme may be holding you back from the 100%? If you believe those are the main stumbling blocks, disulfiram may be worth looking into. Be interesting to gauge your response to that med, if you flare to it might help elucidate that question... my sense is this could be a "finisher" drug, I don't know if it can lead to cure, but my sense is for some of us (especially cases driven by lyme/babesia) may end up helping buttress a strong remission...
Posted 8/5/2019 11:09 PM (GMT 0)
Always good to here other people updates with the drug. For me I'm about a month and half in on using disulfiram (only total of 20 days on the full 500 mg dose) and my response has not been the same. Before starting the disulfiram I think I was better then before but still no where near 100%. Maybe closer to 70% overall if i had to put a number on it. Since taking the disulfiram I think i'm much worse overall, especially when being at the 500mg dose. I would say the last week has been the worst since being on abx (so much fatigue). My doctor seemed happy and that this was a die off so maybe in another month I will feel a night and day difference too. Good to see people benefiting from this drug.
Posted 8/6/2019 12:04 AM (GMT 0)

Lapis_29 said...
have you tried Dihydromyricetin yet?

I messaged my LLMD about it. He advised against it due to concern about it blunting the effect against Lyme/Babesia. I'm not sure what exactly was happening from roughly day 4 - 25ish. Looking back, I was definitely going through a hellish herx. DSF was definitely causing a metallic/fruity taste in my mouth. I was definitely fatigued. Was that from the herx? DSF side effect? Acetaldehyde? I definitely felt symptoms that reminded me of having a bad hangover. Was I mistaking that for a herx? Was a build-up of Acetaldehyde contributing? I'll prob never know for sure.

Anyhoo, I am feeling much better now. Not out of the woods yet but progress is good. I think someone someone that starts DSF and has a similar experience to me should volunteer as tribute as tribute when it comes to the Dihydromyricetin smile.
Posted 8/6/2019 12:08 AM (GMT 0)

Mademywifeapromise said...
Always good to here other people updates with the drug. For me I'm about a month and half in on using disulfiram (only total of 20 days on the full 500 mg dose) and my response has not been the same. Before starting the disulfiram I think I was better then before but still no where near 100%. Maybe closer to 70% overall if i had to put a number on it. Since taking the disulfiram I think i'm much worse overall, especially when being at the 500mg dose. I would say the last week has been the worst since being on abx (so much fatigue). My doctor seemed happy and that this was a die off so maybe in another month I will feel a night and day difference too. Good to see people benefiting from this drug.

Do you think feeling much worse overall at 500mg could be a good sign that you are going through a herx? I was much worse at days 4 - 25ish. When I broke out of that herx I have been at a much improved baseline for the last 10 days. I'm not working right now so my entire life has mostly been optimizing everything I can. When i started to herx badly I detoxed hard and consistently. I locked down my diet and rested when I felt my body asking for it.
Posted 8/6/2019 12:55 AM (GMT 0)
That’s a good point and ya it’s possible this could be a bad die off. I worked up to 500mg after 3 weeks and after being on the 500mg dose for 1 week and feeling so fatigued I came back down to 250mg....In hindsight would’ve probably been better to stay at the 500mg and see if my baseline afterward was improved. Iv been back on the 500mg and have been feeling that same draining fatigue so I should see after getting through it it my baseline improves.

Post Edited (Mademywifeapromise) : 8/5/2019 6:58:14 PM (GMT-6)

Posted 8/6/2019 2:36 PM (GMT 0)
Update:

I got my 30 day DSF labs back. The only thing that came back out of range was the bilirubin.

Reference range: <0.2-1.2 (mg/dL)

My Score: 1.7

However, I have had no change due to DSF. I ran tests back on 5/15/19 and my bilirubin score was also 1.7. At this time I was on Doxy, Azithromycin, Tindazole and Stevia. So no change.
Posted 8/6/2019 2:38 PM (GMT 0)

Mademywifeapromise said...
That’s a good point and ya it’s possible this could be a bad die off. I worked up to 500mg after 3 weeks and after being on the 500mg dose for 1 week and feeling so fatigued I came back down to 250mg....In hindsight would’ve probably been better to stay at the 500mg and see if my baseline afterward was improved. Iv been back on the 500mg and have been feeling that same draining fatigue so I should see after getting through it it my baseline improves.

If you are in herx hopefully you can break through soon and see some progress.
✚ New Topic ✚ Reply