Poll: Experimentation: Win/Lose/Draw?

How has experimentation worked for you overall?

  • I'm significantly better off because of experimenting

  • No significant wins, no significant losses

  • I'm significantly worse off because of experimenting


Results are only viewable after voting.

Wishful

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As a follow-up to the True Confessions thread, how has experimentation with treatments worked for you? It's worked really well for me, but some people have regretted some experiments, so I'm wondering how strongly we (or at least I) should recommend it. Maybe there are some categories of experiments to avoid?
 

Woof!

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As a follow-up to the True Confessions thread, how has experimentation with treatments worked for you? It's worked really well for me, but some people have regretted some experiments, so I'm wondering how strongly we (or at least I) should recommend it. Maybe there are some categories of experiments to avoid?
How about another option - I don't want to experiment.
 

seamyb

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I was way better off after experimenting. Not happy with not being 100% I experimented more and made myself worse again, but still better than at the start of the illness. So, I'm not answering it in the way it's phrased (not a criticism of the way it's phrased, just a curse on my own situation).

I would say that experimenting is really all we have in the short term. And when you're being tortured, the short term is incredibly important.
 

Judee

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It's a good poll but it's also a hard thing to determine.

I've found things that help. However, most things have not.

Still, that doesn't mean the unhelpful things made me permanently worse. I've usually been able to get back to baseline. (I usually end the experiment quickly though if I don't feel like things are improving early on.)

Plus, if I had not been willing to try I would have never found the few things that do help.
 

hb8847

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Like I'm still bad... but I guess not quite as bad as to begin with? I feel a lot of the benefits of experimenting for me has been mental, as in, it makes me feel like I'm at least doing something. But on the flip side I don't understand how you're supposed to get better without experimenting. Insanity is expecting things to change while doing everything the same, as Einstein said.

Another thing I think is worthwhile is experimenting with different doctors. Where I have seen breakthroughs is in contacting as many as possible, as eventually one will have an idea the others didn't. In my case it led to a diagnosis, although no improvement yet but at least one might be in the pipeline.
 
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I try to launch detox....and whatever version of approach, I throw in the towel.

It makes me feel so AWFUL and I feel like I never get to the other side, to some better place.
 

wabi-sabi

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I'm not sure how to answer, because I don't know the answer. I've gotten worse over time, yes, but I don't really know why. Am I just really bad at pacing and too much PEM is doing me in? Or do I just have a progressive neuro illness with no treatment or cure, so of course I'm getting worse? As I get sicker, smaller and smaller things make me crash, so it get harder to pace and a vicious circle ensues.

On an emotional level, as I've written about the torture of hope, experimenting has made that worse.
 

Mary

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I'm not sure about the word "significantly" in the poll. I am definitely better off than 14 years ago, when if I was lucky, I had one "good" day a month where I wasn't crashed or sick or detoxing or feeling like crap for unknown reasons. I now often have one or two "good" days a week. I'm still limited to 3-1/2 - 4 hours of light activity a day to avoid crashing, but I am able to function halfway decently during those hours, which I really couldn't do before.

My PEM recovery time has been cut from 3 days to one due to BCAAs.

B1 has increased my energy and also my need for phosphophorus (without the phosphorous the B1 increased energy but then caused severe fatigue due to refeeding syndrome)

Folate increased energy noticeably, and also increased need for potassium, and taking potassium helped solve the mystery of unexplained weird fatigues which would hit unrelated to exertion - low potassium.

B6 (shown to be severely low on Nutreval testing) helped my energy a little.

Actually prior to starting folate in 2010, I almost never felt good in any sense since I started crashing in 1998. Folate gave me the first glimpse that my body was capable of some degree of health. I had already been taking B12 for years.

Taking glycine helped me with detoxing, so that I almost never detox any more. I think it helped restore my detox pathways.

Andrographis has helped a lot with recurrent sinus infections which almost always hit after a crash.

These are the main things which have helped me, but it was a lot of trial and error and learning things the hard way, but it's been very worth it for me. But nothing has solved the central riddle of ME/CFS. And I have to give a plug for muscle testing, which helped me a lot in figuring out what the heck was this new fatigue which hit after I ______________ (fill in the blank) And I always recommend with muscle testing that a person start with a trained practitioner like a chiropractor - it's not as simple as it looks and it's easy to manipulate results if you don't know what you're doing.
 

Viala

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I wouldn't say I'm significantly better, I am better though. Experimentation has been crucial because now I know what helps me and what makes me worse, it's a lot of important information that allowed me to narrow down my possible CFS causes, without it I'd probably deteriorate real fast. I also found some supplements that helped me with other issues, so that's a bonus.

I experiment mostly with natural stuff like diet and minerals, vitamins, herbs, what you can buy without a prescription, so it's nothing like strong prescribed medication, I wouldn't want to experiment with that too much, if at all. I didn't experiment with CBT or GET. One thing I noticed is that reactions can change with time, some things that made me feel worse or even made me crash in the past are now perfectly fine, probably because I was going too fast or something else was missing, so it's a continuous learning.
 

wastwater

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I don’t really experiment with anything
I’m waiting for better evidence and leads
Long covid research is encouraging
 

TiredBill

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I think I am much better off financially, physically, and emotionally for having never treated myself as a guinea pig with unsumpstianted treatments du jour, nor falling into the trap of letting some doctor-guru (who conveniently doesn't take insurance) experiment upon me.

Desperate people are too often victimized IMO.

Bill
 

Wishful

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One thing I noticed is that reactions can change with time, some things that made me feel worse or even made me crash in the past are now perfectly fine, probably because I was going too fast or something else was missing, so it's a continuous learning.
So true. I can't think of any responses to foods or other factors that has remained constant; it all keeps changing. Life with ME is a constant series of experiments for me. One problem is realizing that something has changed. Taking a treatment or avoiding something becomes a habit, and we don't notice when it changes.
 

Viala

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So true. I can't think of any responses to foods or other factors that has remained constant; it all keeps changing. Life with ME is a constant series of experiments for me. One problem is realizing that something has changed. Taking a treatment or avoiding something becomes a habit, and we don't notice when it changes.
I think it's particularly important. I am so glad that I tried again some supplements, they eventually made a big difference.
 

Learner1

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It depends on what you mean by experimenting. As there are no approved treatments for this illness, every treatment is an experiment. Together with my doctors, I've read most of the recent ME/CFS research, tested to see if what's on the papers seems to apply to me and figured out from the clues given some treatment options to try. This has helped with:
  • herpes family infections
  • atypical pneumonias
  • Immunodeficiency
  • autoimmunity
  • microbiome dysruption
  • food allergies
  • hypercoagulation
  • thyroid hormone deficiency
  • adrenal insuffiency
  • sex hormone deficiency
  • dysautonomia
  • mast cell activation
  • mycotoxin and heavy metal toxicity
I'd probably be bedbound if I did nothing.
How about another option - I don't want to experiment.
I don't want to either, but I've learned that even most brilliant doctors don't have all the answers, and I have more time to research and try things than they do. And, I'm not getting any younger, so waiting 30 years for some miracle pill doesn't seem like a viable path.