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Massive paresthesia/ psychiatric side effects from Disulfiram - please help me!

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Posted 9/7/2020 11:15 AM (GMT 0)
Friends, I have massive side effects from Disulfiram. I took it 3 weeks in daily dosage of 125 mg/d on empty stomach. My neuropathies worsend suddenly at the weekend to whole body tingling and I have panic attacks and much fear. Stopped DSF immediately but symptoms still here. Can not write much more at the moment. Another patient got whole body tingling just after 3 days and stopped immediately. It went not away since his withdrawal 2 months ago.

Can I do something to help my nerves? What do US-specialists say?
Posted 9/7/2020 2:23 PM (GMT 0)
Neurotransmitters need time to rebalance. I believe the psychiatric stuff will be resolved without intervention.

May not be any easy answers for the neuropathy. Hopefully it too resolves on its own, but you can try zinc, b vitamins, molybdenum maybe.. some have had success by removing heavy metals but I think there's a possibility that the process can make neuropathy worse.. I remember hearing of an "intestinal metal detox" that might be a safe way..

In the meantime, I would avoid egcg (green/black tea, bluberries), cinnamon, l-theanine, and multivitamins with copper (perhaps foods high in copper as well).

Again, it may just need time to resolve on its own. Good luck and please let us know!
Posted 9/7/2020 2:41 PM (GMT 0)
I know nothing about DSF except what I read on here. I do know that Buhner recommends lion’s mane and Chinese senega root for nerve repair. It works slowly over a long period of time, so you probably wouldn’t notice any effects right away. Lion’s mane is pretty easy to get. Buhner recommended Beneficial Botanicals for lion’s mane. I never tried the Chinese senega root, but I think Elk Mountain Herbs may have it.
Posted 9/7/2020 6:40 PM (GMT 0)
Thanks. Depression and anxiety is a bit better already, so I think psychiatric symptoms will get better on its own. I have fear that neuropathy damage will be permanent. The problem is that I had neuropathy before DSF already as part of my normal symptoms. My doctor wanted me to take the DSF anyway.

I have to say that DSF improved all of my symptoms considerably (they are all back again) and I have tried all sort of antibiotic combinations and Buhner for years before without much effect. I'm optimistic DSF would be able to cure me if I had the possibility to take it long enough.

Do you think there is a chance that if the neuropathies resolve / get better that I could restart another try with DSF in the future? Is there any recommendation what I should take with DSF? I took my Buhner herbs and acetylcysteine (nac), vitamin c with my disulfiram (of course away from disulfiram). I don't know if this was a mistake.

I'll talk to my doctor this week what he thinks, but I'm from Germany and there is not much experience with DSF yet. And I think we have another preparation of DSF compared to US and this maybe makes a difference, too.
Posted 9/7/2020 11:40 PM (GMT 0)
Just want to add to potsnpans good suggestions... be careful with zinc dosage and maybe try 25mg a day at first then work up slowly. I too had peripheral neuropathy in my feet before I started DSF. in June after I ramped up to 500mg I developed a different type of foot pain than in the past and thought at first it was just a serious Bart flare. I later changed my mind and now think it was a DSF side effect that I'm hoping will resolve on its own.

We don't have that much experience with DSF either... and we all react differently.

I'm starting my DSF dose reduction from 375mg down to 250mg starting tomorrow, and want to have a drink or two by late October .
Posted 4/28/2022 3:30 PM (GMT 0)

potsnpans said...
Neurotransmitters need time to rebalance. I believe the psychiatric stuff will be resolved without intervention.

May not be any easy answers for the neuropathy. Hopefully it too resolves on its own, but you can try zinc, b vitamins, molybdenum maybe.. some have had success by removing heavy metals but I think there's a possibility that the process can make neuropathy worse.. I remember hearing of an "intestinal metal detox" that might be a safe way..

In the meantime, I would avoid egcg (green/black tea, bluberries), cinnamon, l-theanine, and multivitamins with copper (perhaps foods high in copper as well).

Again, it may just need time to resolve on its own. Good luck and please let us know!

The supplements and foods here to avoid--What are these interacting with/are they in a category together?

I have pretty bad neuropathy after DSF too; seems to be getting worse.
Posted 4/29/2022 2:45 AM (GMT 0)

_Markus_ said...
Friends, I have massive side effects from Disulfiram. I took it 3 weeks in daily dosage of 125 mg/d on empty stomach. My neuropathies worsend suddenly at the weekend to whole body tingling and I have panic attacks and much fear. Stopped DSF immediately but symptoms still here. Can not write much more at the moment. Another patient got whole body tingling just after 3 days and stopped immediately. It went not away since his withdrawal 2 months ago.

Can I do something to help my nerves? What do US-specialists say?

I was on 500 mg of DSF for some time, I will say I think the neuro side effects need time to calm down. When I stopped the drug that side effect eventually went away and it was also the reason I stopped the med (risk of psychosis and neuro issues).

With your current nerve issue I hope others can help provide some assistance on that end, I didn’t end up experiencing that, nerve pain meds may be useful soon. I hope it goes away along with the neuro side effects. I’ve read positive things about zinc combating the neuropathy from DSF but don’t know enough to speak on it.
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