Disulfiram neuropathy (near suicide)

The problem I have with a lot of the research is that there's not enough out there to see the success that others have had with this. We are finding more and more recovery through this as time goes, but admittedly, it does take a long time. Another unfortunate part of this is that conventional western care doesn't handle this the right way in my honest opinion. Your best bet is going to a functional medicine doctor and letting them know how you got there, and everything before that took place. Under all circumstances, you HAVE to focus on nutrition. I know, it sounds like the same bullcrap, I know, but it's true. You have to focus on foods that are actually doing something. Watch out for the trendy stuff like olive oil shots and all of that garbage, focus on what we have and know works. If you want to heal the brain, we have to feed it. Food is not what heals us, our bodies do that, but we need to provide our bodies with fuel. Proper fuel. After this, you want to make sure you stretch daily. I recommend taking this slow, trying not to overextend. Contrary to belief, you can do more damage by doing this and even some forms of aerobic exercise.

Now, as for these drugs, they suck, but I have seen people heal from some of the worst drugs ever. Everything from barbiturates to being floxed by cipro. You got this. Don't give up. I'm not gonna start telling you how hard I'e had it for years but just know that I understand, especially when it feels like there is no hope. The fact is there's not many answers out on paper, but there are ways to heal. We are just behind in the research. That's just how it goes. Take anything from eastern medicine for example. It took them HOW many years to say that acupuncture is helpful? Do you know how many other things they're still looking into? This happens all of the time. I have buried myself in the research and I constantly laugh at the stuff that I've known for years far beyond what they found as "new."

Take a step back and know that you will be okay, but you have to believe it. The suffering sucks, but you will see improvements. Watch. Just wait some months and just watch. You will see days that hurt less. Next thing you know, these days will seem like a distant memory. Just remember focusing on a diet heavy in produce, particularly foods high in enzymes and lots of leafy greens. That's the stuff that really does the trick. Doesn't have to be a lot, just treat your body right and it will do what it needs to do.

You got this.

Hogwild said...
I'm fairly new to the DSF protocol. I'm hoping to go on it soon. But even I can tell you 750mg is a very high dosage. I'd say speak with your doctor and get the dosage down.

That, and do lots of detoxing.

I am no longer taking it and will never take it again, it has destroyed me. I don't know how i'll recover from it.

for anyone reading and considering Disulfiram

going straight in at high doses - like 500mg - is high risk for severe adverse reactions
( this is much more common in the lyme patient community than alcoholics) - and can include neuropathy and or Psychosis.

the DR's who brought it to prominence for Lyme recommend a staged approach with low doses initially.

borrelia are not found to develop actual antimicrobial resistance to any antibiotics so far - so there is no real argument or advantage to going in hard from the beginning over a staged approach.

for anyone suffering drug induced neuropathy - it is known to be slow to heal - typically many months but as i understand it - with disulfiram a slow but progressive recovery is more typical than permanent damage.

as above - many nutrients may play a role in that recovery - b vitamins for instance - as well as raw material for nerve sheaths - like phospholipids and healthy fats - and lots of phytonutrients.

it may well look or feel like the suffering is never going to end - but recovery could well have started - albeit slowly already - we humans continuously adapt to our circumstances and this can mean that when small changes happen very gradually over weeks or months we have difficulty spotting such small signs or changes specially in subjective experiences like pain.

i also read that MHBOT therapy can be useful to speed recovery from neuropathy and even diagnosed small fibre neuropathy

there are always options - never give up

Hi Michael,

First I'm really sorry you are going through this. Unfortunately, I can relate to those symptoms you are describing. I experience those same symptoms constantly everyday. It sounds like your experience is far more intense. I think, perhaps, nervous system inflammation is what is crushing me day to day with this illness. Garzie and dcd already gave some great technical information and advice. Conversely I will share my experience with Disulfiram and similair symptoms to yourself.

I also took high dose DSF. I jumped on DSF early and went in at 500mg. I could never make it long. The first time I did it was the longest I made it about 40 days. Let me back up for a second. I already had nervous system involvement before I tried DSF. I had pins and needles in fingers and toes and sciatica like pain down my right leg. There was prob more but that was some time ago. DSF was the best thing I ever did in improving symptoms. The first couple months were hell. My symptoms were terrible. All of them...nervous system included. At one point I felt so bad and I was so constipated. I hadn't pooped for like 5 days. I was herxing so bad I knew it was crucial for me to poop. I woke up one morning and downed a bottle of magnesium citrate. It wasn't seeming to do much for first two hours so I decided to take an epsome salt bath. During the bath I started feeling ill. It didn't take long until I felt incredibly ill. This part is gross so forewarned. I hopped out of the bath and sat on the toilet. I literally felt like death incarnate. Right before I knew I was about to have diarrhea I felt I was about to throw up. The trash can in the bathroom had tons of trash in it. I frantically dumped it all on the floor and proceed to throw up and diarrhea at the same time. I can not tell you how good I felt after this was over. It is indescribable. I told my LLMD about it in a humorous way but he was not amused lol. All that to say it was an incredibly tough treatment at first.

But after that terrible few months I suddenly had a breakthrough. It's like the cloud was lifted. For several months after that I continued slowly improving. So many of my symptoms fell by the wayside. This includes nervous system involvement. I don't remember much of that at the time. No pins and needles, feel like your entire body is buzzing and malfunction. I went back to the gym. I was able to travel for the holidays without falling into the abyss like usual.

So to give a timeline I started DSF in July 2019. I started taking less doses, skipping days, in spring of 2020 and was completely done by like May/June 2020. Again, when I finished, my symptoms were greatly decreased. I didn't do much treatment the rest of 2020. Also, to add, I seemed to experience more Bartonella related symptoms during my treatment with DSF. I've seen others claim this as well.

By the end of 2020/beginning of 2021 my symptoms were coming back full force. I could feel them ramping up. I starting feeling chest twinges, palpitations, etc. Over time the nervous sytem seemed more and more effected. In the years since my nervous system involvement has been crazy. Tremors, constant unwell shaking feeling inside, muscle twitching, I can literally feel spinal inflammation between my shoulder blades sometimes. It's really hard to describe to people. It's debilitating. However, these aren't my only symptoms. I get joint pain. Lymph node pain. Stomach is jacked (due to nerves? or something else?)

In summary, DSF seemed to help my symptoms...nervous system inflammation included. Then months after I stopped everything came back worse than ever. It's so hard to make heads or tails of that. Did DSF cause that as some delayed effect? Is it because I stopped treating completely? I'm on treatment now and the nervous system inflammation isn't getting much better. However, abx treatment perhaps isn't a great help to me anymore (Time will tell. Still in middle of protocol). Some people who took DSF said in made Bart like symptoms stronger. I experienced something similar. After DSF I got tons of Bart looking marks on my back and butt. I even posted one of my butt marks here a while back lol.

So what caused what? It's really hard to say. There are so many different opinions among even the leading docs and patients. It seemed like I herxed badly on DSF, got better, and then got much worse of it. So far, treatment with Jemsek has not helped my symptoms much. I do know my stomach is jacked. Perhaps I need a restrictive diet to heal the stomach? Is the jacked stomach leading to systemic inflammation? These illnesses are know for nervous system inflammation/damage outside of taking DSF. There are those that have similar symptoms and stories and me and you without ever touching that drug. So many different variables and so little good information.

Hang in there man. We can improve and get some quality of life back. There have been people before us that suffered similarly but improved. We just got to get doing our homework and trying things. I hope this doesn't come off as condensing. Please know I'm being sincere and not condensing when I give this advice.....

When your body feels out of control and your mind feels out of control close your eyes, take a few deep breaths. After that, try to train your focus on your breath as closely as possible. Follow it from the beginning to the end. Sometimes it even helps to make a mental note like literally envision the word "In" and then "Out" or something similar. open your awareness and feel your body as energy in space. Feel the sensations all over your body. Let them flow into consciousness without any judgement or attachment. When you are inevitably distracted by thought realize the truth about thoughts. That they come from nowhere into consciousness and then disappear. Think of thoughts as they actually are. Appearances in consciousness that come and go. It's as if you are sitting on a bench on the side of the road watching cars pass by. Thoughts are like cars. The only way that car (thought) can cause prolonged suffering is if you become attached to it and don't let it pass by. Remember anything that appears in consciousness is temporary. It's only when we became attached and ruminate on those temporary appearances that we suffer greatly.

You can do it man. Don't give up.

Garzie said...
for anyone reading and considering Disulfiram

going straight in at high doses - like 500mg - is high risk for severe adverse reactions
( this is much more common in the lyme patient community than alcoholics) - and can include neuropathy and or Psychosis.

the DR's who brought it to prominence for Lyme recommend a staged approach with low doses initially.

borrelia are not found to develop actual antimicrobial resistance to any antibiotics so far - so there is no real argument or advantage to going in hard from the beginning over a staged approach.

for anyone suffering drug induced neuropathy - it is known to be slow to heal - typically many months but as i understand it - with disulfiram a slow but progressive recovery is more typical than permanent damage.

as above - many nutrients may play a role in that recovery - b vitamins for instance - as well as raw material for nerve sheaths - like phospholipids and healthy fats - and lots of phytonutrients.

it may well look or feel like the suffering is never going to end - but recovery could well have started - albeit slowly already - we humans continuously adapt to our circumstances and this can mean that when small changes happen very gradually over weeks or months we have difficulty spotting such small signs or changes specially in subjective experiences like pain.

i also read that MHBOT therapy can be useful to speed recovery from neuropathy and even diagnosed small fibre neuropathy

there are always options - never give up

Do you have a link for the mHBOT being useful for neuropathy? I'd like to read more about it. I have a clinic near me. I'd try it. I wonder how that would compare, for this issue, to IV ozone?

Lymie24 said...

I feel lucky yo have people like yourself on this forum. I learn so much from y'all. Thank you.

Concerning the peptide AR-290. I went to the website you mentioned. I can't tell if that is capsules or liquid? If so you have to inject yourself? Where do you get needles? Where on the body do you inject? How often? Are capsules not effective for peptides? Are there any side effects to look out for?

In regards to Disulfiram causing autoimmune neuropathy; how is this diagnosis being made? Clinical? Are there tests? How would they know it was DSF that caused it?

Thanks for your thoughts.

hi there, ARA-290 is a peptide injected subcutaneously. It's a tiny needle, very safe, and you literally dont feel it. I've yet to hear of a side effect from it.

https://www.amazon.com/brandzig-ultra-fine-insulin-syringes-100-pack/dp/b084gd6djh/ref=sr_1_4?keywords=29g+1%2F2+inch+needle&qid=1676999658&sprefix=29g+%2caps%2c88&sr=8-4

It has to be mixed w/ bacteriostatic water at a ratio of 4mg/ml. super easy.

https://www.amazon.com/gp/product/b098kw7kqb/ref=ppx_yo_dt_b_search_asin_title?ie=utf8&psc=1

Again, as a disclaimer, it seems to help some, and have no effect on others. I've gotten some people on it who say they can suddenly wear shoes again, and others who notice zero benefit. I dont know why that is, other than neuropathy is a non-homogenous cohort, with a lot of factors at play. But its definitely worth a shot, when it helps it is a gamechanger.

It's also quite expensive. I order mine in bulk from china now, which is super cheap, but you have to weight and mix it yourself and whatnot. I'd recommend ordering from peptide sciences first, and if it helps you can explore cheaper options.

wrt to disulfiram induced neuroapthy, I've spoken to a couple of people whose neuropathy came on after use of disulfiram. It was assumed to be toxic and self-correcting, but never went away. Now being suspected and treated as autoimmune. I've seen the same thing from certain antibiotics. Nerves are weird wherein nerve damage seems to beget more inflammation and damage. There was a paper that came out recently at one of the big labs that theorized that once a nerve becomes damaged, the NK cells in some instances start to target it. My theory is that the spewing of nerve material into the extracellular matrix can trigger an antibody against them.

There are no definitive tests for autoimmune neuropathy, although the TS-HDS and FGFR3 antibodies were recently discovered at Wash U and now being researched. ANA marker can be used to show general presence of autoimmune, but lack of it tells you nothing.

Post Edited (dcd2103) : 2/21/2023 9:25:45 AM (GMT-8)

Garzie said...
@lymie24

unless i have imagined it - i think dcd was doing mHBOT for neuropathy related issues - he may well have sources

i have been reading peoples experiences with it for TBD here

i got interested when i found out that bartonella triggers dramatic upregulation in HIF1(hypoxia inducible factor -1) - which is the same signalling chemical that causes damage to endothelial cells in sleep apnea -

HIF-1 over expression can likely be switched off by higher oxygenation in the tissues - potentially in the range achievable by mHBOT

https://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/125201/4?

Good memory Garzie I did do hbot.

I did a hard chamber medical grade HBOT at 2.0 atmospheres for 10 dives

It did seem to help my arthritis quite a bit. It’s been much more mild ever since I did HBOT, and since then I’ve been able to eat a few foods i couldn’t before without triggering the arthritis

Unfortunately I’m pretty sure that it triggered a massive neuropathy flare for me.

I know it’s thought to help certain neuropathies to heal by bringing oxygen to the nerves. Unfortunately for me I think it just stimulated my immune system a bit too much. That doesn’t mean it won’t have the opposite effect for someone else, however. My neuropathy has always been more sensitive than most peoples.

My immune system seems to rotate between th1/cytokine/inflammatory (arthritis) and th2/antibody driven (neuropathy). Almost like hbot flipped the switch from th1 to th2. I’ve actually looked at the correlation on my daily pain scores between arthritis and neuropathy and it’s a -50% correlation so might be something to that

Br.David-Albert Zinz, OSB said...
Hogwild: DON'T DO IT! There are too many side effects and too many interactions with other drugs including herbal supplements and common foods. Who knows how your body will react to it? It is an individual thing based on your own chemistry and it can do terrible things even in low doses, like naltrexone.

Welcome to the forum.
Please feel free to start a new thread and introduce yourself to the members here and tell your Lyme “story” (if you want to)