True confessions - What didn't work in the long run

Woof!

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Hi everyone,

This thread is a place to separate the wheat from the chaff, as they say...

What therapies* have you tried that you hoped would be the answer you were looking for, but instead turned out to be a dud for you?
* with the exception of diets, since there are so many variations on each theme

And why do you think things didn't work out? To mix my metaphors, was it the engine (the therapy) or something about the engineer (you).

Just wondering...
 

sb4

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I have sinned so much.

I confess I once had hopes for acetylcholine related supplements such as parasym plus after one holy experience with alpha GPC. I felt relaxed and good upon the first time ingesting it, I thought this is it, this is the solution, but it was a mere devilish trick. I could never recreate that experience.

I sinned again months later. I finally decided to try allithiamine and I felt a significant improvement afterwards. "This is it!" I thought, I've found something that works! However as the days passed, the effect lessened and lessened until it faded away completely. I tried every type of thiamine at mega doses but it wasn't to be.

I spent a day really working on my neck posture and noticed a profound shift in my autonomic symptoms, I could sweat again, my breathing felt easy, I didn't feel so pottsy. I confess that I started to believe again, soon after I got a sore throat and very stiff neck which lasted weeks however I knew I was onto something, right? RIGHT?!

Wrong. Can't recreate the effect although for the last 2 years I have been sinning down that rabbit hole and have come to the belief that I need significant dental work to achieve proper neck posture. Have I gone too deep down this rabbit hole? Perhaps. I hope you can forgive me High Priest @Dr.Lynne because Im afraid I may sin again.
 

wabi-sabi

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The thing that's helped me most are salt supplements. I take salt pills everyday and sometimes a liquid IV too. It helps on the OI, the pain and the cognitive dysfunction (a little). Nothing like actually having blood and oxygen in your brain to help you think!

The things I tried that did nothing (except lighten my wallet and raise false hopes) were: B vitamins, turmeric, fish oil, a whole boatload of things recommended by a functional doc that I can't even remember like iodine! evening primrose oil, flax seed oil (I got really sucked into the "antiinflammatory fats" thing.) bacopa, ginger, golden milk. Sounded so plausible and did nothing.

The iodine thing from the functional doc, kind of bothered me. I wasn't iodine deficient by his test, the test he used was meant for population trends not individuals so wouldn't have been valid. I took the iodine and other stuff for a bit and then got tired of it since taking so many useless pills was annoying. Later I read that ODing on iodine when you have a healthy, happy thyroid can make you hypothyroid! He also recommended I eat clay to "detox mold". I didn't even try this. I have some gastroparesis (which I manage with diet)and eating clay would have backed me up so much I would have popped! The actual GI doc I saw did the right tests for the gastro and gave me a dietician. No just magically assuming I had mold and testing random meaningless stuff like the functional doc.

Basically I fell for every supplement a health nut trying to learn from social media would fall for online. Only the salt supplements helped because only these target some of the known patho of the illness.

I even prayed for the placebo effect to make me better- no luck.
 

wabi-sabi

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I hope you can forgive me High Priest @Dr.Lynne because Im afraid I may sin again.
Ooh, I'm with you @sb4! Abandon all hope ye who enter here!

I too have suffered from the hubris that my broken brain and a bachelor's degree in biology from my youth could figure out something that PhD scientists who are killing themselves to save us haven't yet completely solved!
 

Woof!

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The things I tried that did nothing (except lighten my wallet and raise false hopes) were: B vitamins, turmeric, fish oil, a whole boatload of things recommended by a functional doc that I can't even remember like iodine! evening primrose oil, flax seed oil (I got really sucked into the "antiinflammatory fats" thing.) bacopa, ginger, golden milk. Sounded so plausible and did nothing.

The iodine thing from the functional doc, kind of bothered me. I wasn't iodine deficient by his test, the test he used was meant for population trends not individuals so wouldn't have been valid. I took the iodine and other stuff for a bit and then got tired of it since taking so many useless pills was annoying. Later I read that ODing on iodine when you have a healthy, happy thyroid can make you hypothyroid! He also recommended I eat clay to "detox mold". I didn't even try this. I have some gastroparesis (which I manage with diet)and eating clay would have backed me up so much I would have popped!
Wow!
Your failed hopes are all forgiven, with love... :)
 

wabi-sabi

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Your failed hopes are all forgiven, with love
Ooh, thank you! :)

My bad experiences are why I so often rant on abut not trying to cure ourselves. I know other people feel that self-experimentation is what keeps them alive emotionally, but for me it's just been harmful (emotionally and financially). Our disease is just so complicated that working to make my peace with it and live as best I can seems a much better option to me than trying to fix it by tinkering in my garage as it were.
 

hapl808

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My bad experiences are why I so often rant on abut not trying to cure ourselves.
I get that, but I mostly didn't try to 'cure' myself too much other than some supplements and diet changes for the first 10 years. In retrospect, that might have been a mistake. Maybe some infection or GI disturbance could've been fixed before it got more entrenched.

But I'm not sure what you mean by cure ourselves? I do think medical interventions hurt me much more than anything I did myself. If you mean seeking a cure in general, I think there's some truth in that. If I had to do it over, though, I was pace myself much more carefully. I just tried to believe I didn't have CFS or lyme or whatever and go about my business.

And it's been mentioned on other threads, I think there's less ability for many of us to not try to cure ourselves once we're severe. When all you can do is mostly lie in bed (sit at a desk when we're lucky) and post on chronic illness forums between naps, it's not a great quality of life in my book.

As for things that didn't work, kind of everything.

The things that made the most difference for me (minor to medium) were probably various antibiotics and antiparasitics (Albenza) and to a lesser degree (but similar in effect) various anti-pathogen herb formulations from artemisia to andrographis. NAC has helped me when I have major phlegm issues, quercetin and vitamin C with some of my allergic symptoms, probiotics for digestive issues, ibuprofen or diazepam but I take it maybe once every other month because I don't think that's a good solution to anything, etc.

Things that didn't help me: cholestyramine, testosterone (very negative), peptides, HGH, meditation and mindfulness, CFS yoga, GET, PT, every supplement under the sun, acupuncture, DNRS, all manner of blood work and imaging that just crashed me, pretty much all doctors (pretty negative), etc.

Not sure that's helpful, but there it is.
 

wabi-sabi

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But I'm not sure what you mean by cure ourselves? I do think medical interventions hurt me much more than anything I did myself.
I guess what I mean is some combo of "I will get my life back", "I'll go back to being mild instead of moderate", "My disease will stop progressing", "I will be able to pace".

I haven't been ale to do any of these things and I just keep getting sicker no matter what I do or what I try. My disease has been progressive this whole time and I am very much afraid I will become bedbound. I would very much like for that trend to stop.

I'm not sure if medical interventions vs. the attitude of docs is what has made things worse, at least in terms of my mental health. I do try to separate those things. For example, the salt supplements were recommended to me by a cardiologist. They help more than any other supplement I've tried. Without his explanation I wouldn't know what to try or how much to take. The functional doc babbled on about sole water which didn't help at all. On the other hand the cardio's condescending attitude, refusal to understand PEM, and gaslighting about the benefits of exercise has hurt my mental health enormously. I don't take his advice on "Just stand up more", but just knowing he thinks I am lazy and stupid is so hurtful.

I respect and need the physiologic understanding I get from docs. But the emotional abuse I have to go through to get it...
 
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I finally decided to try allithiamine
I"ve promised a friend I'd launch the ALLTHIAMINE cure.......she called to inform me about it.....sold !

research suggests the blue pill I take occasionally for ISB-d- lowers acetylecholine, while the latest rumored cure for my eyes, might be increasing acetylcholine..... (how do we do both, via a pill?)

have come to the belief that I need significant dental work to achieve proper neck posture.
I need: 1 new set of teeth, a completely new spine, and collagen dosing.

I hope you can forgive me High Priest @Dr.Lynne because Im afraid I may sin again.
for 5 days, I've not taken my special herbs for digestion, and my digestion is now MUCH BETTER. And I ate pasta for 3 dinners. Pasta cure?
 

Wishful

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I don't think I tried any that I actually hoped would be a solution, meaning that I strongly believed it would work. I tried some things based on other people's positive responses. Most either didn't work for me or made me feel worse. LDN was the notable exception, being an efficient blocker of neuropathic pain.

I also tried a number of treatments more in the 'theoretically it might have a positive effect' category. Most didn't work, some worked briefly (then stopped working). Of course I hoped that they'd continue to work reliably, but I never took the initial response as a sure thing for long term. Of theoretical treatments that did work out for a reasonably long time (many months, then permanent cure), carnitine stands out. Without it, I couldn't deal with fats (glorious fats! :thumbsup:). With it, I could enjoy fatty foods again.

Most of my successful treatments (and cures) were accidental discoveries.


I know other people feel that self-experimentation is what keeps them alive emotionally, but for me it's just been harmful (emotionally and financially).
For me it's been like a lottery, with several big wins. No losses, other than minor expenses (probably only a few hundred dollars). Your experience sounds more like serious gambling. :nervous:
 
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I guess what I mean is some combo of "I will get my life back", "I'll go back to being mild instead of moderate", "My disease will stop progressing", "I will be able to pace".
I was decades of mild (dont ask)...then a profound worsening, possible new invader, went to moderately awful.

Now AWFUL set in and I got MUCH WORSE for 3 months, visiting my daughter in foreign country. Not at home, cannot pace properly.

AWFUL GOT VERY SCARY.

With much rest, and a no repeat of the 3 months of PEM, I improved quite a bit to a far less AWFUL state.

I prefer NOT AWFUL.
 

Woof!

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Things that didn't help me: cholestyramine, testosterone (very negative), peptides, HGH, meditation and mindfulness, CFS yoga, GET, PT, every supplement under the sun, acupuncture, DNRS, all manner of blood work and imaging that just crashed me, pretty much all doctors (pretty negative), etc. Not sure that's helpful, but there it is.
I think it will be helpful to others!
 

Wishful

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for 5 days, I've not taken my special herbs for digestion, and my digestion is now MUCH BETTER.
I keep saying, ME keeps changing, so you have to retest things occasionally. Maybe some of those herbs stopped working or started causing negative effects. Maybe the combination of two or more of them causes a problem, so you might need to take a break from all of them, then test them individually.

And I ate pasta for 3 dinners. Pasta cure?
That's like me trying beef, expecting it to make me feel worse, due to proline. Instead, it countered the proline. I was absolutely delighted by the thought of a beef/lamb/dairy treatment (quite delicious!). Alas, it stopped being effective enough, though it still helps me sleep longer.

I keep hoping for chocolate or donuts or bacon to be a treatment. :)