in remission said...
hi Charlie 55, i am on disulfarim now and I know many others now on this treatment. I'd love to exchange more info experience if you are interested. I was in remission when I started. Why start then? Well, I had undiagnosed late stage Lyme for many years—I don't take my remission for granted and wanted to see if disulfarim might be a viable future therapy. Guess what. I've been herxng, Happy to be herxing because this means disulfarim may be VERY effective
Great to see this post still going, you can hit me up on FB if youd like or through my profile email on this forum.https://www.facebook.com/charlie.fitzgerald.737
Our doctor has between 10-20 patients who have benefited from treatment with disulfiram.
That is so great to hear!!!
He is quite aggressive in his treatment, more so than I've seen on anyone in this thread. I am unable to find a history of use with any teenager at any dose. My kid has been chronically ill since 12/17 (Western Blot positive for Lyme after known tick bite/ no rash) and almost totally bedridden since then. 3/18 Positive for Babesiosis and Bartonella. Initially treated with Doxycyline (12/17-1/18), then Amox (875 mg 12 tabs/day) & Mepron (3/18-6/18), then Ceftraxione 2g IV & Mepron (7/18-8/18 , 3 weeks off and again 10/18-12/18). Biliary attack resulting in gallstones (avoided removal, still waiting for them to hopefully disappear)- off all meds since 12/5/18 due to elevated liver numbers, etc. Now doctor would like to try disulfiram 500 mg. /day for 6 weeks.
Trying to complete sr. year of high school (online schooling) to graduate.
I have found that aggressive treatment is a lot more effective!
For those of you who have used/ are using disulfiram- is this too much? Can you function while on treatment? Any complications with liver in your experience?
Disulfiram has a really long half life, so just using one pill a day can go a really long way I think. There's really no standard dosage for lyme since this is such a new drug to use for lyme disease. I did 250mg a day and was herxing quite a bit, when I upped it to 500mg, became too much to tolerate and function normally, but I'm sure it effectively killed a lot of borrelia and possible coinfections. I'd just keep it to 250mg a day and even then, as it builds up in your system, maybe doing 250mg every other day or every three days.
And yes, I've noticed for me it became very hard to tolerate this drug after a month of use, it would induce more fatigue for me.
I have Babesia as well, so I needed to switch my treatment over to some antiparasitic drugs.
I have heard it can be mildly hard on the liver in the long run, but I was fine afterwards.
Separate neuro has recommended IVig due to autonomic dysfunction/ neuropathy.
Any input greatly appreciated.
There's other oral antibiotics that can hit neruo lyme effectively like dapsone, minocycline, etc... However, if you have the money I'd do IVs
Currently on Disulfiram to test out this new “wonder drug” its been about three weeks and I have experienced some serious symptoms which at this stage of my health I really cant put down to herx symptoms like i used to do. I’m unsure if im herxing on disulfiram or its just my “microbiome”.
What are your symptoms? Because I had some really weird symptoms while being on this drug as well. I suspect it wakes up a lot of dormant persister cells, just like it's found to do with AIDs patients, so be aware that some really strange symptoms might come out while being on this drug.
I had a lot of neurological symptoms, twitching and pinching in my brain, as someone described with neuro symptoms, felt like rocks and stones were moving around in my brain. Remember disulfiram effectively crosses the blood brain barrier... I suspect it caused a lot of neurological herxing when I was on the drug.
Post Edited (Charlie55) : 5/16/2019 2:45:19 PM (GMT-6)