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Poll: Have You Regretted any Reasonable Experimental Treatments?

Have any reasonable potential treatments caused you long-term worsening of your ME?

  • Yes, one.

    Votes: 5 25.0%
  • Yes, several.

    Votes: 2 10.0%
  • No

    Votes: 13 65.0%

  • Total voters
    20

Wishful

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Trying lots of different potential treatments increases our chances of finding something that works. The goal of this poll is to get an idea of the possible downsides, at least for reasonable treatments that don't have known high risks of serious side-effects. Please don't include known high-risk treatments or super-mega-dose treatments that are way beyond what is considered normal amounts. Please don't include short-term negative effects; feeling a bit worse for a day or two is a reasonable price for the chance of finding something that works for you. I'm asking about long-term regrets.

Did a common spice cause you to crash for six months? Did icewater baths give you a horrible new symptom that persists? Do you regret that single supplement tablet that made your life horribly worse ever since? Have you had an experience that made you afraid to try anything new, because it might make you even worse?
 

ljimbo423

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I can't think of any treatments I've tried and regret. Even the ones that made me feel horrible for weeks at a time. I think I've learned something from each treatment I've tried.

I tried very low carb for several weeks and it made me feel horrible. I thought I was having die-off reactions from bacteria dying in my gut. What it was though, is that I just don't tolerate going into ketosis. I need to keep my carb intake at about 75-80 grams a day or I feel miserable.

Another time I felt really sick trying a treatment was starting to take methylfolate. That to lasted for weeks until I learned that increasing my dose by 50-100 mcgs every 2-3 days gave me almost no ill effects at all.

Improving methylation has helped me quite a bit and I still take methylation supps every day.

If I can think of a treatment I tried and regret I'll come back and add that but I can't think of any as of now.
 
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wabi-sabi

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I'm not sure if treatments have made me worse or not. My disease has gotten worse over the years, but I've no idea why.

The harms that I have experienced with self-experimentation have been the financial losses and the loss of hope. I no longer think that I can influence this disease at all, beyond careful pacing; that anything else is willful delusion and grasping at straws.
 
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Accepting treatments I thought were very unlikely to help from my GP are my main regrets. Two lasting impacts from that which have left me permanently scarred. The first caused me to see things that weren't there in darkened rooms and I have had episodes since that drug was initially taken. The second was Lithium and SSRIs that were used to make me pliable and used to make me comply with graded exercise therapy that turned me from moderate to severe condition. I regret listening to doctors mostly, that was my biggest mistake and not one I make any more, I tell them what I want to test or try drug wise and they accept or refuse.
 

Mary

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12 or 13 years ago I had 1 or maybe 2 max, "good" days a month. A good day was one where I wasn't crashed or sick or herxing or detoxing or otherwise feeling like crap for unknown reasons. Though I was still limited to 3-1/2 to 4 hours of light activity on that "good" day to avoid crashing the next. My crashes lasted 2- 3 days and I got sick every time I crashed, and it would take 10 - 14 days to recover from being sick, so my "good" days were just about non-existent. they stick in my mind, they were so rare!

Due to a ton of self-experimentation and reading, I now often have 2, and if I'm really lucky, 3 "good" days a week. One of the least productive things I did during that time was following richvank's methylation protocol for 3-1/2 years - 2007 - 2010. There was nothing else out there, and I kept reading how it would help me, but each time I took his supplements, I felt worse. But I kept it up. Then in 2010 I came across Freddd's protocol, and also the information that B12 and folate could cause a potassium deficiency - this was huge! For one, Freddd's recommended supplements DIDN'T make me feel sick like richvank's did - there must have been something in the particular things richvank suggested my body didn't like. and I learned to recognize the symptoms of low potassium (severe fatigue and feeling cold and just yucky) and was able to eliminate them with a potassium supplement. This is when I finally started to make headway.

I could go on, but I won't. I will put in a plug for muscle testing which has helped me a lot. Like @ljimbo423 said, I've learned a lot along the way!
 

Diwi9

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When I was first diagnosed and knew little about the illness, I was still working two jobs and a small side gig. My doctor prescribed Adderall to address excessive day time sleepiness. The "treatment" was to keep me up and working using a stimulant. I ended up bedbound for 6+ months and have never been able to return to work since.
 

Wishful

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Please define 'reasonable' ....
I suppose by 'reasonable' I meant treatments that you expect to be really safe: products that don't come with scary warning labels. Brightcandle's example of prescribed medicines probably fall into the 'risky' category, since doctors seem to downplay the actual risks.

The reason for the poll is that I was recommending to people to try different herbs and spices an other such 'safe' things, and was wondering just how safe they actually were for PWME. I've never had a lengthy crash from such things, but I wasn't sure if I was just lucky and that other people did have bad crashes from such things.
 
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The reason for the poll is that I was recommending to people to try different herbs and spices an other such 'safe' things, and was wondering just how safe they actually were for PWME.
When I first started on this long, ongoing explorative journey, I focused on the most stressful aspects of what was ailing me, which in my case wasnt the fatigue, the weird muscle responses, the varied and lively pains, the headaches, th strange visual problems, as bad as all those were.


For me, it was the wracking, endless anxiety/panic attacks. I was unable to do any but the most fractionated, superficial research, but I finally found my answer to that, which was a specific dosing interval with mag gly ...

Once that was getting better, I turned my attn to other things, and started taking a dose of potassium every AM, in warm water with a little stevia for taste. For reasons that are a mystery to me (not unlike your cumin miracle was to you), and on a hunch, I added first cinnamon, then ginger (this mostly because it's a close cousin to turmeric, which I couldn;t tolerate then), creating a sort of morning booster tea. Then I added a small pinch of salt, again on instinct and because it's one of the important electrolytes.

The improvements from the above were subtle and gradual, but I think they were cumulatively meaningful in my slow, gradual improvement.

As you noted, the only experiements that I regret were the ones I allowed Drs to perform on me.

Never again.

Well, maybe not never, but right now I can't foresee any reason for trusting them with my life, the quality thereof, my overall health, or my well-being. Too often, they're driven by factors that have nothing to do with what's best for the patient, including their own reductionist thinking and stereotyping. And we'll just leave the profit motive alone for now.

I continue to experiment with things, a few were terrible disappointments: I cant tolerate even the kinder, 'gentler' P5P or any other form of B-vits in supplement form, still. All experiments with them have been dismal failures, and painfully destabilizing. I'll continue to trial them from time to time, but in very small amounts and with great caution.

EDITED IN: I made up for the inability to take any form of vitamin supplement for the longest time by adding in desiccated liver, which supplies decent amounts of various vits, including B vits, iron, Vit A, and a bunch of other things. This was another beneficial step, providing another little leg up, but not quite the Holy Grail.

Green tea was also a vast and painful disappointment, and this after years of 2 matchas a day, which had suddenly turned on me. Go know.

Will give all this more careful thought, and if I come up with anything else, will be back to bore ....

EDIT .... for incredibly misleading typos, stuff I forgot to include the first time, and general loopiness in expressing myself ....
 
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I can't think of any treatments I've tried and regret. Even the ones that made me feel horrible for weeks at a time. I think I've learned something from each treatment I've tried.

I tried very low carb for several weeks and it made me feel horrible. I thought I was having die-off reactions from bacteria dying in my gut. What it was though, is that I just don't tolerate going into ketosis. I need to keep my carb intake at about 75-80 grams a day or I feel miserable.

Another time I felt really sick trying a treatment was starting to take methylfolate. That to lasted for weeks until I learned that taking 50-100 mcgs every 2-3 days gave me almost no ill effects at all.

Improving methylation has helped me quite a bit and I still take methylation supps every day.

If I can think of a treatment I tried and regret I'll come back and add that but I can't think of any as of now.
some bacteria and fungus (candida) feed of ketones. Wich means going into ketosis could worsen certain infections
 
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I tried Skullcap a couple of days for PEM protection and all I got was mild dizziness and disassociated feeling which went away when I didn't take it, didn't seem to help although I still plan to try again now I have dropped a prescribed drug I think is making the POTS much worse. I mostly don't react at all to supplements other than to get bright orange/green pee (and a lighter wallet).
 
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I tried Skullcap a couple of days for PEM protection and all I got was mild dizziness and disassociated feeling
Skullcap (and every other herbal for sleep and anxiety, like hops, chamomile, valerian, and about 5 others I cant recall right now) really kicked my behind.


It metabolizes thru the same P450 liver enzyme that benzos do, so while they can be effective, they can also raise hell in a considerable way.
I have dropped a prescribed drug I think is making the POTS much worse
If that drug was a benzo or one of the coyly, misleadingly named Z-drugs, you could be having a withdrawal reaction. This would also apply to any of the anti-d's ....


It might be a good idea to leave the herbals alone for now.

Im so sorry that you've had no luck with supplements, they're what saved my life. But they do require a certain amount of research and can't be thrown at symptoms willy-nilly, or because X, Y, or Z worked for Whosis ....
 

Wishful

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Too often, they're driven by factors that have nothing to do with what's best for the patient, including their own reductionist thinking and stereotyping. And we'll just leave the profit motive alone for now.
Maybe that should be added to the general knowledge posting for newcomers. Since at this point, doctors can't do anything for ME, all they can do is prescribe things that likely won't help but which could cause harm. If you went to an auto mechanic or computer tech for advice on ME, at least they'd be honest in saying that it was out of their area of expertise. With professional doctors, we (are supposed to) trust that they know what they're doing, and for ME, that's a false assumption.