Chaga Tea, dramatic but temporary

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monolaurin has actually helped some, almost semi-dramatic effect. last few days have had cold type infection thing and so took three teaspoons of it each day for antiviral effects. Either the antiviral effects are quick and potent or it has quick effects on metabolism (also possible) because I felt effects quickly, relief from pain and slight boost

Placebo effect is a thing, but because of my experience with recreational drugs pre-illness, especially, I think I am good at differentiating between placebo/anticipation, and the actual effects of something.

Also in this case I didn't really expect the monolaurin to have any effect, at least immediate, so I was kind of caught off guard by the effect.
 
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So far the most effective medical interventions at even temporarily relieving symptoms:

Pristine air. (Over time it took me from totally bedbound to walking around a third of a mile --I think, without counting... in death valley. )

Xenon. Doesnt just help with pain but helps with blood flow/volume, cognition, pain, anxiety, insomnia , and sound sensitivity. Really profoundly beneficial drug that I think could offer lasting benefits or cure to people with mild or moderate cfs , although cant cure cci.

Saline. Always a mainstay, it doesn't usually last long but profoundly helps in the moment
.

traction. Especially invasive traction, helped dramatically in the moment.

Mineral hot springs, in jemez new mexico... u can look up mineral content and infer what you cna
To a slightly lesser extent: benzos, opioids, and ketamine. All somewhat palliative but can paradoxically improve energy and function in the moment, not just pain.


Based on what has helped so far , I want to experiment with cci and tethered cord surgery, strong compression garments , florinef, stem cell injections in ligaments., peptides (although it would be important to first lower inflammation via what @Hip lists in terms of mmp-9 inhibitors and maybe tryptase inhibitors --both of those were high for me), bromantane, memantine, taurine... ibudilast, salvia divinorum, LDN to lower opioid tolerance ...
 
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Based on what has helped so far , I want to experiment with cci and tethered cord surgery, strong compression garments , florinef, stem cell injections in ligaments., peptides (although it would be important to first lower inflammation via what @Hip lists in terms of mmp-9 inhibitors and maybe tryptase inhibitors --both of those were high for me), bromantane, memantine, taurine... ibudilast, salvia divinorum, LDN to lower opioid tolerance ...
Based on my theory of etiology and hips ideas about inflammatory factors that degrade ligaments I think it might be useful to make an experiment flowchart or treatment plan specifically for people that have cci. One that goes beyond just surgery. Like how do you sequentially address the issues from molecular to macro/structural
 
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Interesting - hadn't heard of Chaga. Is that maybe similar to AHCC? I started experimenting with that a bit before some other things distracted me. Might try it again.

Since it looks like the thread turned into what helped. Vit C, quercetin, fenugreek, garlic, magnesium, etc. All pretty helpful, although nothing dramatic. I wish LDN helped me - it sounded great, but I experimented with different dosages and other than vivid dreams I didn't notice much. Peptides are a mixed bag - I hate injections, but I found a couple moderately helpful. Not enough to continue, though - all the benefits were short term.
 
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Ah, makes sense. I've never really taken any opioids, so maybe it wasn't as helpful. When my CFS started (20 years ago) it was relatively mild, but one of my early symptoms was a lack of endorphins after physical activity. A few years ago when I heard of LDN, it sounded like it might help and my doctor was optimistic - unfortunately I didn't notice any effect on endorphins.
 

Judee

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I want to experiment with cci and tethered cord surgery,
This thread talks about a non-surgical treatment someone has found helpful. (It's in post #263.)

A few years ago when I heard of LDN, it sounded like it might help and my doctor was optimistic - unfortunately I didn't notice any effect on endorphins.
Julia Ross talks about increasing endorphins in her book Mood Cure. She recommends D-Phenylalanine for that. She tells of a case where a patient was going through a time of debilitating grief over the loss of a loved one. I am experiencing that now as well and this supplement seems to help some with that.

She said the DL version also seems to help but may be too stimulating for some people. Even the D version makes me feel very slightly wired so she recommends taking it in the morning so it won't affect sleep quality at night.
 
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Thanks, I'll take a look. My general mood is fine - but I just stopped getting endorphin rushes after physical activity years ago. Now I'm too severe on the scale to really get any physical activity, but I do notice that my PEM kicks in even from energetic mental exertion.
 
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This thread talks about a non-surgical treatment someone has found helpful. (It's in post #263.)

She said the DL version also seems to help but may be too stimulating for some people. Even the D version makes me feel very slightly wired so she recommends taking it in the morning so it won't affect sleep quality at night.
For the D or L version, which do you think would be more beneficial for mental fatigue, mental PEM, etc. My mood isn't a particular issue, but working on something that requires concentration can give me PEM for a couple days afterward. Same effect if I have a long and energetic conversation. Seems like it would be related to some neurotransmitter imbalance, but I'm new to the phenylalanine treatment idea.
 
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Did I ever mention when I was more moderately ill that bcaas helped me? One of the best things for pem. Big doses of em.

And I eventually tried various fat soluble thiamines like allithiamine and got some very good effects.

An inversion table was also helpful.

For symptom relief only the list gets longer but I'm mostly talking about non narcotic things that get close to root cause. Line is blurry tho.

A list of things I want to try in future:

More xenon! I'd like to take this for the rest of my life. Honestly I would pay so much for this. But I want to talk to Ron about it and get him interested ... bc if a device to recycle it could be made it could be made affordable. It works on similar principle to ativan, but way way more profound and suited to regular use than ativan

Hot springs: the Minerals and heat are great especially in good outdoor mountain air. But it could sometimes mobilize metals.

Delving into chelation and mold detox more thoroughly, plus detox through sweat

Electro medicine of various kinds, including fsm