Continue or end Disulfiram? Please help!

Three weeks at 350 mg is not enough in my opinion. I would try upping dose to 375 or so for three months before deciding to stop.

I had started DSF late January 2020 and worked up to 375 by end of Feb. Increased to 500 in late May, but herxed severely and developed neuropathy and reduced back to 250 a month later. Then worked back up to 375 gain before stopping in late Sept. I had also added Ceftin in July thru early October. Been off aggressive treatment since, only taking a handful up supplements and holding OK so far.

@tickbite666: And you was without reaction on smaller doses under 350 mg/day too? What happened during your dose increase? At least I'm glad my liver tests are still exemplary.
I know 3 week on this dose it small time period, but I was very frightened personally that the way to this dose was so hassle-free without any reactions, knowing that it would almost kill someone else.

@dcd2103: Yes, its very, very sad and desperate. 2 LLMD diagnosed me with Lyme in past, but their treatments simply did not yield anything.
I want to do that new Phelix Phage test from RED Labs, it occurred to me that it could be B. myamotoii a problem - I think in LTT tests and WB is not included?

My symptoms is "classic" CFS:
- chronic fatigue
- easy to get PEM (post exertional malaise)
- muscle pain after activity
- OI - some type of dysautonomia? Im not able to sit, stay or walk longer that some minutes - it causes PEM and pain
- inflammation feelings...and hot weather makes me bad
- sleep disorders

Fact is, I don't have any mold problems or a few other typical problems that many CFS patients have...typical MCAS, POTS, SIBO, brain fog... many inflammatory markers looks in normal (only IL-8 was high in past), ATP good too, vitamins and minerals levels too, only my NK cells (CD57) are still low.

Here is my last LTT: https://www.dropbox.com/s/skacxzfk8xld2xo/IMG_20200701_192959101_2.jpg?dl=0
And here is some more Lyme testing: https://www.dropbox.com/s/ztfbjw0niq9mm6b/IMG_2666.JPG?dl=0

Can you look at it? Thanks a lot, Martin

Does your last LTT show that it's most likely to be Borr. afzelii and/or Borr. garinii?

Just throwing it out there, I also took DSF up to 500mg without any herxing or neuropathy. (You can find more about my personal history here:

https://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/138329
)

I am still very sick, still trying to figure out whether to treat Lyme or Babesia, or...?

Seems like we are in pretty similar situations. Wish I had better answers.

Post Edited (Adam B) : 12/11/2020 11:47:01 AM (GMT-7)

MartinK

Improvements were difficult to track since I was at about 80% healed in my long treatment process when I started DSF last January. Then my conditions worsened through the treatment, and were the worse after increasing to 500mg ( i don't recommend this to anyone). I then backed down to 250mg and some sx improved, before returning to 375mg again. Through that time improvements were very slow and almost un-measurable. Since stopping treatment in September I've had some improvements and so far no relapse.

I don't know what to think about bart anymore. Maybe I'm in a temporary remission... time will tell.

good luck to you.

Try Cistus Incanus tea, some underestimated it, but it was found effective against bart and lyme persisters due to its carcavrol content.

This german tv report speaks about it. It shows a man wish was interviewed to ask how did he reach remission from pain caused by borreliosis. He tried everymed on earth to cure his Lyme infection for two entire years. He was in so much pain for so long. He was taking strong med Tramadol for long. Now guess what? In the interview he said he has seen many doctors and took so many meds, but after trying cistus and taking it for some time, he started to enter in remission from the pain and he quit all the pain meds. Almost unbelivable, but its true, plus i already posted here several studies that backup cistus effectiveness on Lyme, Bart, fungal, parasite infections. When i take it alone i herx and get the stretch marks like when i am on abx, but cistus seems to be better. I am considering to continue the therapy only on Cistus and Nac since i have the same benefit or better than abx.

Just for the record, i am direct witness of Cistus Effectiveness. My father who was also in pain for years with osteoporosis and some unexplained pain, also started to take cistus tea since almost two years, after i discovered the research and reports about it and guess what, after one year, more or less, he throwed all his pain meds in the garbage, including naproxen, a strong med for inflamation. He is now, pratically pain free and he is 81 years old. What are the odds? The tea is not only a anti persister but also has strong anti inflamation properties, but the best is that it does not have the negative side effects of strong pain meds and no physica dependence

The news report is in German language unfortunately, but you can see many time were he is filmed taking the cistus tea and the strong meds he took before. Its start and min 0:27 and ends at 1:27. But you can see the rest of the report, where researchers are interviewed and testify about the properties of the Cistus Incanus plant strain.

check it here on youtube:
https://www.youtube.com/watch?v=5ljy33fpsze

Post Edited (isitlyme) : 12/12/2020 10:56:20 AM (GMT-7)

Martin,

Yes, I noticed some improvements after stopping the DSF and ABX treatment. I still have the foot neuropathy from the 500 mg dose of DSF, but that has improved slightly since stopping as well. Rx induced neuropathy seems to take time to heal. Back 4 to 5 years ago I got floxed from Levaquin in my right achilles that took a year to clear up.

I have also read that some DSF users experienced their best improvement after ending treatment when the drug leaves their system.

Post Edited (tickbite666) : 12/14/2020 5:00:59 PM (GMT-7)

I decided to stop disulfiram for now because I had exactly calculated the time I was taking it. Time flies fast, I was a little wrong. I did 5,5 month on DSF...first moths of increasing dose and 1 month on 300 mg/day and last 5 weeks on 350 mg/day. Last week I try 400 mg/day and again nothing happens, no herx.

In the next two weeks, I will slowly reduce the dose and stop it. I want to do big check tests until after 3 weeks the DSF is cleared from the body.

I want to do another LLT in IMD Berlin and new Phelix Phage test from Red Labs. And I will also perform all tests for possible cross-reactive infections.

I also want to know what happens when I finish treatment. I hope for improvement, keep your fingers crossed.

@Adam B. now link works! Thanks
I did lot of HBOTs and some bee venom in past, I can write something about it if there is interest.