Disulfiram - Part 10

UnsightlyCignet☄️ said...
potsnpans

What are your lyme disease symptoms and how have you noticed them improve since beginning the DSF?

Most improved: Fatigue, shortness of breath, light headedness, tolerance to and recovery from exercise

Heart palpitations, shooting chest pains have become less frequent.

Brain fog, memory and concentration problems: most days are same as usual but there have been a few where my head was very clear

Response to stress has been much better.

Sleep quality has improved

Some specific joint problems that i never really atributed to lyme seem to be resolving, although this could be a coincidence.

I've never taken disulfram, but I did start to get neuropathy when I was taking tinidazole. I had never had neuropathy before. I did read that tinidazole causes neuropathy because it somehow depletes you of b vitamins or causes you to have a b vitamin deficiency. Could the same thing also be happening with disulfiram?

I take the "b complex" with food. Taurine I take with or without food.

Just catching up here.

Jovalyme hope u are getting some relief. I was pretty down when neuropathy hit me and I saw my hope for cure slipping away. Not over yet...even if Zinc and enteric capsules don’t fix it all, there will be oral Azlocillin and newer, safer versions of Disulfiram in market in a couple years. They will be expensive but we will be cured. Just hold steady.

Hang in there! Hopefully you can get some good sleep tonight and feel better soon...

Edited to add: Safe to say pure DSF kills borrelia, but metabolites of DSF could be beneficial in some ways as well. No one really knows why babesia symptoms seem to be improving for so many patients...

Post Edited (potsnpans) : 11/26/2019 2:19:43 PM (GMT-7)

enteric delivery did not prevent neuropathy for me. I had no neuropathy for about a week and tried it yesterday and got it pretty bad.

I haven't taken any disulfiram in a few days, but I took 100 mg minocycline last night and now I'm herxing. There seems to be an effect where disulfiram does not always kill the bacteria outright, but stresses it in some way which makes it more vulnerable to other antibiotics. I noticed this with valproate also.

Are you seeing ANY benefit on it? Honestly?

I question whether I have had improvements Ive been on it around 45 days. I had a positive western blot 8 of 10 bands. I question whether I have lyme still, Ive never seen any improvement with antibiotics either.

Seriously the risks are taking to high of dose too fast. Anyone who throws down 500mg and waits is asking for trouble even 250mg. Im on the facebook group and Ive read one account of someone having a reaction at 125mg. Im not discounting it but all the other folks seem to be people who started out fast and crashed then blamed the medication.

Post Edited (skinny_joe) : 11/27/2019 1:16:02 PM (GMT-7)

Thank you all, just to alert, from the research i have done, DSF is no joke to deal with. I have a problem to even try it, even if suggested by doctor. Let me tell you, if you are tolerating it, then ok, but it doesnt mean you will not have problems in the future. Just saying. I have found that DSF increases extra cellular glutamate leading to neuropathy and neuro toxicity. For me is just not worth it. It is still experimental. Dapsone was also thought to work in all people, surprise, it was found it doesnt. Same can happen with DSF, so at this stage, taking DSF is too soon and still a shot in the dark, and besides you risk to many adverse reactions and brain toxicity and on top of that, there is no antidote for disulfiram, if you get exposed to alchool you must suffer, and half life of the drug increases the problem by ten fold wish is 100 hours. Not trying to scare anyone, i know that there would be people that go fine with it, but like JovaLyme i have neuropathy also and i would only risk to add more problems. Gladly the problems are reversible, but do your own research, i have read some bad case reports, with people who did not even had a wink of alchool in the blood. Besides that, while on DSF you become a target to kill by any indirect exposure to alchool on the tons of products you buy/consume everyday that you dont even know they had any alchool in the first place. I had the choice to try DSF, but i rather prefer staying on abx still. Of course, i could reach a point were i am too desperate, so in that situation, i might have to choose dying or try DSF or any other experimental drug to save myself when abx doesnt work anymore. But not today... JovaLyme glad you are out of it. I would stop at the least doubt or suspicion of unusual symptom. The great problem is that people tend to attribute herx to any bad effect or symptom they have, and the great danger on this approach, it that people try to endure on it, thinking its a herx, but then, even on abx that might happen, so again its a shot in the dark. Not discouraging, because there are DSF positive case reports on lyme, but they are so few, that its not worth it.

Can you provide some sort of study about brain damage. I've never read that anywhere.

UnsightlyCignet

I’m sorry for all you’ve been through - too much for anyone to endure.
Keep fighting !

I think more people would get well if they didn’t stop fighting.
It’s not easy to keep at it.

I contemplate stopping all the time - but then I remind myself that “this” isn’t good enough!
if I had stopped a year ago - I’d still have the symptoms that have recently dropped off.

It’s a long drawn out brawl - that’s for sure!

Quick update: Feeling pretty tired today.

Hopefully it's a herx.

Post Edited (🔹RainyCloud) : 11/27/2019 5:48:12 PM (GMT-7)