Do you find after treatments you try you always regress

[Scoobieworld]

I’ve tried many treatments, supplements, at probably huge overall cost, but always crash back down to my reset sick self after a few days, weeks or months
Do other people have this reaction?

Thanks

 

[Wishful]

Yes. Something about ME/CFS seems to adapt to some treatments and resist them. I've had a few treatments (drugs, supplements, herbal remedies) that worked really well at first, then stopped working, and wouldn't have any affect when I tried them again even years later. In 17 years, I've only found two that continue to work reliably for me..but no one else has reported them being effective for them.

One thing to keep in mind: if your response to an improvement from a treatment is to increase your physical activities until you exceed your new limits, then you're going to keep crashing. We all know how tempting it is to make use of an improvement, and it's easy to forget the importance of staying within our limits.

 

[Wonkmonk]

Yes, first I thought antivirals help a lot, but that wasn't permanent. Then I thought lysine might be helping, but that also didn't last.

But I am still better on these treatments than without. I went from 1-2 hours out of bed a day to 4-8 hours and my pain improved considerably. That's not much, but it is something. Lot's of people are doing much worse.

 

[taniaaust1]

I’ve tried many treatments, supplements, at probably huge overall cost, but always crash back down to my reset sick self after a few days, weeks or months
Do other people have this reaction?

Thanks

That sounds like they possibly are just helping just through the placebo affect... that often wears off like you described. Placebo affects in people are not uncommon.

In my case no Ive never had that reaction as I dont tend to get positive placebo affects with things in the first place. Hardly anything Ive ever trialed has ever helped at all.

 

[alex3619]

This is a common though not universal experience in ME, and fits with the idea of a homeostatic set point. You push the illness, it pushes back. On one occasion I had a major response to something I don't want to name because of how it worked out, then it stopped working, then I stopped taking it ... the next day I crashed. Which is why I wont name it, I know some will try it and it was a horrible experience on the crash, but extra good on the positive response.

 

[Wishful]

I'm convinced that my "worked at first, then stopped" treatments weren't placebo effects. Some were unexpected responses which I then had to identify the chemical responsible. Some were things I expected to make me feel worse, but instead made me feel better. The reverse was true more often, with things I hoped would help actually worsening my symptoms. With prednisone (doctor's suggestion), I had some hope for it, but the benefits didn't kick in until five days later, when I had given up hope that it would work.

 

[Mary]

l-carnitine, NADH and calcium pyruvate all gave me a really nice boost in energy and stamina - l-carnitine helped for a week, I could function without crashing, this was in 2002. And then it never had that effect again.

NADH gave me a really good boost for about 10 days - this was in 2004, and then it stopped, and never happened again.

And calcium pyruvate helped a lot for 3 or 4 days back in 2005, and then it stopped.

I continue to take a carnitine supplement (Carnitall) because I've read how important carnitine.

I have tried dozens of different things over the last 20 years, most didn't do much, but a few have made a noticeable positive difference for me and I continue to take them: folate and methylcobalamin; P-5-P; benfotiamine; andrographis; branched chain amino acids (cut PEM recovery time in half); d-ribose.

For many years I had severe digestive issues which affected everything, and a liver detox helped a lot, plus I started taking betaine HCL with pepsin and my digestion has been good for quite awhile now. I also drink kefir periodically.

I also had a lot of trouble with toxins for many years, which would leave me feeling sick and weak and screw up my digestion. I tried Cutler's protocol, it didn't do anything for me that I could tell. Then I inadvertently came across l-glycine, inositol and glutamine. It's a long story but the upshot is I don't have detox symptoms any more. I think they got my detox pathways working properly.

So there were several different things going on making me feel like crap which seem to have resolved, a lot through trial and error; also muscle testing was invaluable in helping me navigate all of this.

I still crash regularly; my energy envelope has not expanded, but when I'm not crashed, in general I feel much better than I used to. I still do get sick with depressing frequency and regularity, every time I crash, though with andrographis I recover more quickly, and have recently added cordyceps and astragalus. I'm going to experiment with reduced glutathione, which I have never given a fair go, to see if it will help.

 

[Mary]

One more thing - after starting methylfolate 8 years ago, I became aware of issues with low potassium. The methylfolate caused my potassium to drop as cells began to divide more rapidly and use more potassium. My chief symptom was severe fatigue and titrating up with potassium caused the fatigue to go away. Though if I had not known about the potential for potassium to tank with methylfolate, I could not have kept taking it.

But the really interesting thing to me was that I had had that particular severe fatigue (different than crashing or herxing or detoxing or being sick) before I even started the methylfolate. It would come periodically with no apparent rhyme or reason and all I could do was wait it out, while it destroyed days. In other words, I'd had issues with low potassium even before the methylfolate, only it was never diagnosed. On blood work my potassium was always in the low-normal range so no red flags there. But here is a very interesting post by richvank which explains how people with ME/CFS can have normal blood levels of potassium but low intracellular so it's never picked up. So that was another thing that used to make me feel like crap and doesn't any more.