Asked to Participate in Disulfiram Study

I'm wonder what the study means by taking disulfiram to get rid of chronic fatigue AFTER Lyme disease has been treated - i.e. people who believe their Lyme is eradicated but continue to have chronic fatigue as a symptom, so essentially PTLDS, in line with IDSA characterizations of Lyme? I wonder how the participants are screened for Lyme having been treated, what's measured, and which treatments count.

There are innumerable posts about disulfiram on this forum, so I'm sure you've noticed that some people have great, quick, lasting success with it, and others cannot tolerate it due to dramatic, brutal herxes. It seems important for some patients to ramp up dosages very slowly, so in a study, I would want to be sure that you'd have the flexibility to adjust your dosages as needed, especially if you plan to try to keep working during treatment.

I'm sure others will be along soon who have personal experience with it!

Nic,

Who is conducting the study?

You might want to join the FB group. Although I would caution you in asking there. Several folks have asked the same question there just do a search. The responses were very bias as most knew nothing about the study. They just didnt trust anything run by mainstream medicine.

The medicine has ruined some folks lives literally. I have a ongoing list from the FB groups as it gets buried. Most people in the group get pissy when you bring up some of the folks who had horrible outcomes.

Some folks have had amazing recoveries though which you cant discount. I took it for a while. I suspect I didnt take it long enough if it was going to help me. I had to stop for unrelated medical conditions.

Post Edited (skinny_joe) : 5/17/2021 9:43:55 AM (GMT-6)

its a one off anecdote - but there was a prominent case in Canada where the guy being treated by a well known LLMD had such severe psychosis from it that he went home and burned his house down with him inside it.

aside from the psychosis angle - there are some people who it seems to cause neuropathy for - and this can either take a very long time to resolve after cessation - or in some cases - does not resolve

those are the main things i have heard with it - other than the extreme herxes

as Skinny Joe says though - you cannot discount that it dose work well for some - just need to take the brave pill and go in with your eyes open.

has anyone a link to the study - all these things need to be registered and have Gov approval so its entrance criteria and protocols should be online...

my guess is they mean well - but probably have to use language like PTLDS in order to get approval in the medical community.

i did hear talk of one study coming up - where the dosage ramp sounded brutal basically something like a week or two at half dose and then max dose for 8 weeks - so could be that one - if so beware!

After reading these responses, I don't think it sounds like something I should try.. Here is the dosage schedule:

The dosing starts at 250 mg on day 1, none on day 2, 250 mg on day 3, none on day 4, and then 250 mg x 3 days. If tolerated, the dose is then increased to 500 mg/day.

I would not volunteer for that dosing schedule. From what I read on here, that dosing schedule is way too high for many if not most. Some can’t even handle the 62.5 mg dosage startup. That would be very dangerous for someone who may unknowingly be among those hit with severe side effects. From what I recall of the older threads on DSF, most people who took it had pretty intense herxes and described it as being way more intense than any previous treatments they had done.

I wonder if people who are still in the early stages would have less severe effects from it? Perhaps.

Yeast/mold/fungal coinfections could be a factor for those who experience neuropathy or psych symptoms. I can’t remember why I think this - something to do with acetaldehyde or other fungal byproducts? I know that I have suffered both widespread numbness and psych symptoms in connection with both mold/mycotoxin exposure and with gut pathogens that responded to antifungals.

Post Edited (WalkingbyFaith) : 5/17/2021 3:35:23 PM (GMT-6)

I see skinny joe’s point. Many studies do have different dosage groups, though, and they compare the effects among the groups. At least they do in in vitro studies. Not sure about in vivo.

is it this one ?

https://clinicaltrials.gov/ct2/show/nct03891667

contact details are listed

United States, New York
Lyme Research Center New York State Psychiatric Institute Recruiting
New York, New York, United States, 10032
Contact: Brian A Fallon, MD baf1@cumc.columbia.edu
Contact: Jessica Preston, BA Jessica.Preston@nyspi.columbia.edu
Principal Investigator: Brian A Fallon, MD
Sponsors and Collaborators
Research Foundation for Mental Hygiene, Inc.
FDC Foundation
Investigators
Principal Investigator: Brian A Fallon, MD Columbia University

Post Edited (Garzie) : 5/19/2021 6:35:28 AM (GMT-6)