anyone with cfs tried ivermectin?

[Marylib]

from what i've seen, Ivermectin is being used along with a few other meds. these doctors think their way of approaching Long Covid can be used to treat ME/CFS.

the difference is - they are seeing 'new' long haul patients rather than those of us who are stuck in the mode. Can those treatments do anything once the process has already started? Or just for those who are newly in the state of ME/CFS?

 

[Karen B.]

I was taking 12mg of Ivermectin two times per week as a preventative, but after a few months dropped down to once per week because I noticed that my exhaustion levels and fibro pain levels were elevated within 24-36 hours afterward. Went to once per week and saw a little improvement in those levels. I don't socialize much due to exhaustion and voice loss, so I am going to go off the Ivermectin altogether and see if the exhaustion and pain levels improve. The contraindications for Ivermectin state that the two issues I mentioned can be side effects of this drug. For the average person it might not be so severe but added to ME/CFS and FMS, it is too much.

 

[GeorgiaLinders]

PLEASE DISREGARD my previous comments/questions about ivermectin. Many Covid Long Haulers have taken it and it must have some sort of anti-inflammatory result. But as soon as they went off the med, their symptoms returned. Incelldx worked with the FLCCC to create their post-covid "protocol" but now Incelldx says they do not agree with it. And Incelldx has been in the news lately (most recently NBC) because they are basically experimenting on Covid Long Haulers. The only people who can afford their treatment are wealthy.

 

[GeorgiaLinders]

the difference is - they are seeing 'new' long haul patients rather than those of us who are stuck in the mode. Can those treatments do anything once the process has already started? Or just for those who are newly in the state of ME/CFS?

Incelldx is now saying there are people who have PASC+, which would be people with ME/CFS, Lyme, EBV, etc. And they are finding they are harder to treat. But they still have hope that they can figure it out. I'm skeptical.

 

[GlassCannonLife]

PLEASE DISREGARD my previous comments/questions about ivermectin. Many Covid Long Haulers have taken it and it must have some sort of anti-inflammatory result. But as soon as they went off the med, their symptoms returned. Incelldx worked with the FLCCC to create their post-covid "protocol" but now Incelldx says they do not agree with it. And Incelldx has been in the news lately (most recently NBC) because they are basically experimenting on Covid Long Haulers. The only people who can afford their treatment are wealthy.

Wait - so ivermectin doesn't help resolve the "lingering infection"? That protocol you mean is the "I-recover" one right? What about the work by @Aguirre-Chang, he seemed convinced it was the way to go - 1-2 weeks and some amount of people got fully better.

Can anyone else chip in on this? @nerd I thought you said that it is antiviral against covid (is that just the in vitro data?)?

Maybe @Hip or @Pyrrhus @Wayne @dave11 @Sherpa ? Can't think of anyone else atm sorry please whoever knows anything about this chime in

 

[GlassCannonLife]

@GeorgiaLinders that's an interesting story. I actually had severe ME/CFS the last 3 years but just recently got covid (a little over a month ago) and am dealing with a hyper-intense crash with what feels like very aggressive inflammation. 4 weeks of the crash now so far.. I just started ivermectin today. Seems like for this type of application it could be more useful then? Not to treat my ME in any way really but to take me back to pre-covid crash baseline.. No way to know I guess.

@elvira this is the thread I had mentioned btw.


Edit:
@GeorgiaLinders you mean maraviroc with the statin right? I saw that in a paper and a protocol, seems like it has potential.? Aim was to suppress CCR5 over-activity and reset macrophages/clear out dysfunctional monocytes or something IIRC.

 

[GeorgiaLinders]

Ivermectin has to do SOMETHING to make people feel better. whether it's actually clearing the virus or messing with their gut flora or just anti-inflammatory, it does something. but it's not a cure. Well, not for those who have been sick since the first wave.

This topic has been quite the drama among Long Covid advocates. I honestly didn't even remember posting those links because so much has happened since then.

Many of us had hope that IncellDX could treat us, and everyone else with chronic illness.

IncellDX reached out to a couple of the Long Covid facebook groups in the fall of 2020 and marketed themselves as possibly being able to cure us with 4-6 weeks of custom-prescribed medications based on lab tests (this is public, it's a bunch of cytonkines, rantes, etc.). Many members got free labs for the first couple of times, and then had to pay. It's all out of pocket and some members have been on the meds for months now. Often, when they go off them, the symptoms return. Some members that have "gotten better" and then got omicron, were back to square 1 with Long Covid again.

The typical protocol seems to be an HIV med + statin. Ivermectin was their recommendation from the beginning but that was wayyy before it became political. Most Long Haulers who have been sick for 2 years now have ME/CFS, whether they want to admit it or not. There is a patient-run FB group where the members are discouraged from talking about their experience.

This article explains a lot about it. https://www.motherjones.com/politic...ousands-for-a-long-covid-cure-is-it-for-real/

This is also a short video that was on NBC recently:

[/QUOTE]

 

[Judee]

Incelldx is now saying there are people who have PASC+, which would be people with ME/CFS, Lyme, EBV, etc. And they are finding they are harder to treat. But they still have hope that they can figure it out. I'm skeptical.

Did they say anywhere what their acronym PASC+ stands for? Just curious to see if it would lead to a better name for our disease than CFS.

 

[GeorgiaLinders]

@GlassCannonLife I apologize for my etiquette as I'm not super familiar with these boards and how to do the quote vs. reply. Yes, Maraviroc *but* they had been talking about another similar med Leronlimab and I believe it's talked about in that article from mother jones. It's messy. Right now, if I had a positive Covid test I would be first in line for Covid antivirals.

 

[GeorgiaLinders]

Did they say anywhere what their acronym PASC+ stands for? Just curious to see if it would lead to a better name for our disease than CFS.

Dr. P put a chart on twitter that he said were "cytokine branches" where like each possible scenario had it's own branch. He had ME/CFS on a separate branch, same with EBV, CMV & Lyme. I'll see if I can find it. I had a private conversation with him months ago about my EBV antibodies being sky high and he insisted that I didn't have reactivation unless the PCR came back positive. I guess maybe he's changed his mind since then. Sorry if I sound sarcastic, it's just exhausting. All of this is very wonderful that it's being researched, but IncellDX is skipping the research and going straight for experimentation with multiple medications.

 

[GeorgiaLinders]

@Judee this is a good thread to read. Dr. Yo & Dr. P are the two main IncellDX people. Looks like they will have a paper coming out and will call them Cytokine "Hubs".

https://twitter.com/i/web/status/1504124071864328197

 

[GlassCannonLife]

Did they say anywhere what their acronym PASC+ stands for? Just curious to see if it would lead to a better name for our disease than CFS.

Doesn't it stand for post-acute sequelae of covid? Plus others I guess for them (the ME people being the plus? Lol)

 

[GeorgiaLinders]

Doesn't it stand for post-acute sequelae of covid? Plus others I guess for them (the ME people being the plus? Lol)

sorry, yes. You are correct. After trial and error, they realized that a lot of their patients had other stuff going on in their bodies besides "just" Covid. That's the "+".

 

[Marylib]

The thing is - maybe something like maraviroc needs to be long term. Just saying because a friend who is a biochemist with an interest in virology and he said he thought a post viral disease like ME could be controlled with anti-retrovirals, but they would need to be lifelong. This was pre-pandemic days and we discussed the usual viruses - where they end up wreaking havoc in the body - and most of the research for the last 30 years or so. Meanwhile we are scrambling to crowd-fund BC007 and most of us don't care anymore about endless studies. "Just treatment please - and we'll tell you if it worked or not."

 

[GeorgiaLinders]

The thing is - maybe something like maraviroc needs to be long term. Just saying because a friend who is a biochemist with an interest in virology and he said he thought a post viral disease like ME could be controlled with anti-retrovirals, but they would need to be lifelong. This was pre-pandemic days and we discussed the usual viruses - where they end up wreaking havoc in the body - and most of the research for the last 30 years or so. Meanwhile we are scrambling to crowd-fund BC007 and most of us don't care anymore about endless studies. "Just treatment please - and we'll tell you if it worked or not."

that makes sense. and some of the Long Haulers on the meds are "better", just not cured. in that case, maybe keep an eye on IncellDX. the "official" website is www.covidlonghaulers.com . if there are people who are willing to experiment and have the finances, anyways. i can't afford it.