Can everybody make a list of things that helped their fatigue?

[Wishful]

I don't suggest taking iodine as a supplement

It depends on the individual. I discovered that iodine did reduce my symptoms (likely due to T2 production). I carefully experimented to find the optimum dosage, which was a small droplet of tincture every 21 days (very consistently the symptoms would flare up on day 22 if I forgot). Eventually I no longer needed the iodine. So, for me iodine was very beneficial and safe.

I agree that taking anything at higher than normal levels without paying attention to whether it's providing a benefit or causing harm, is a bad idea. I don't trust claims of "you have to keep taking it for <long period> to see a benefit" if there's no solid data to base that on. I think bad practitioners use that technique as an easy way out from dealing with a difficult problem, and then blame its failure to work on the patient.

 

[maple]

Low/no wheat
High vegetables
High quality chicken/fish- no beef (cannot tolerate)
Low/no sugars
No fruit juices
Very Little milk
Whole fruit in moderation
No junk food or prepared food
B multi (v important for me)
Glutathione liposomal
Selenium

 

[maple]

Consider getting tested for Lyme and confections by IGenEx because if it’s positive you can do something about it, even if imperfect.

 

[Belbyr]

Consider getting tested for Lyme and confections by IGenEx because if it’s positive you can do something about it, even if imperfect.

Has their testing improved? They falsely diagnosed me with lyme 15 years ago via a ‘LLMD’s request’ and I spent 2 years chasing it with IV and oral antibiotics to no avail.

 

[maple]

Has their testing improved? They falsely diagnosed me with lyme 15 years ago via a ‘LLMD’s request’ and I spent 2 years chasing it with IV and oral antibiotics to no avail.

Hi Belbyr. Sorry it didn't work for you. It is the case with most diagnoses that they can be wrong sometimes. Example: Heart pain? No, acid reflux. And so on and on. Inspite of the complications of the whole lyme business, there are some who are helped by the diagnoses and treatments, and that is why I mentioned it. In case it might help someone here.

 

[linusbert]

-Methylene blue 2 drops twice a week

so you take 2 drops (= 1mg?) on two days a week? or what is the exact dose?

-Greg's B12 oil

also what about those gregs b12 oil, i ve read this multiple times in the forum. whats special about it?

 

[Tsukareta]

when my symptoms were typical CFS, only pacing helped my general function levels. When I had PEM after short periods of unusually high exertion, BCAA helped me to recover faster and experience less severe PEM related sensations. When I was 'very severe' in the first year of illness, probiotic pills and fish oil pills seemed to help, I also ate gluten free foods e.,g. muffins, coconut milk. When I went from severe to very severe I had acute lactose intolerance / bloating and couldnt tolerate even small amounts of most foods for a while, and I think it took me a while for my stomach to recover, I think I also ate kidney beans and things like that for a while.

 

[Shanti1]

so you take 2 drops (= 1mg?) on two days a week? or what is the exact dose?

It is a 1% aqueous solution, so that is 10mg/mL. There are about 20 drops in a mL, so 0.5mg/drop. So yes, it turns out to be about 1mg/2 drops . I use 2 drops once or twice a week.

also what about those gregs b12 oil, i ve read this multiple times in the forum. whats special about it?

It is either the enhanced absorption or the delivery method... maybe a combination. The first post in this thread by Hip gives a good explanation:
https://forums.phoenixrising.me/thr...ovide-a-similar-dose-to-b12-injections.75317/

 

[hapl808]

when my symptoms were typical CFS, only pacing helped my general function levels. When I had PEM after short periods of unusually high exertion, BCAA helped me to recover faster and experience less severe PEM related sensations. When I was 'very severe' in the first year of illness, probiotic pills and fish oil pills seemed to help, I also ate gluten free foods e.,g. muffins, coconut milk. When I went from severe to very severe I had acute lactose intolerance / bloating and couldnt tolerate even small amounts of most foods for a while, and I think it took me a while for my stomach to recover, I think I also ate kidney beans and things like that for a while.

So strange how different our symptoms can be. I'm more severe now than I was in my first 20 years or so, but my digestion of lactose and gluten seemingly has improved. I've taken a lot of herbal antibiotics, rx antibiotics in the past, yogurts, homemade yogurts, probiotics, and so forth. Not sure if something helped along the way, but it seems weird that my digestion seems better, until I concentrate for 30 minutes and then will suffer acid reflux and bad digestion for days.

Although thinking about it, maybe when I was more moderate I was just able to concentrate more and physically exert more and that caused constant stomach issues but I never made the connection. Now small amounts of exertion put me in bed for days, so I'm more attuned?

Well, that was a lot of typing for nothing.

 

[Tsukareta]

some say that the longer you have ME/CFS the symptoms can change, I know I was closer to my healthy function in the first 6 to 9 months of the illness ! then I was very ill for a period of around 3 to 5 months, recovered to moderate but I remember at that time I had to be quite careful still, I had a lot of orthostatic intolerance and my brain would be overwhelmed easily by 'visual clutter' and I found it hard to relax, so I often wore a VR headset and lied down and used my computer that way, I have over 5000 hours logged onto an app called Virtual Desktop because of that. I also had quite a lot of brain fog at that time and felt half asleep most days at times. Things improved in 2018 and 2019 I think and those symptoms that were a hangover from the first year of the illness seemed to improve. I was quite active in 2021 and 2022 and I would go deep into the countryside alone with my homemade electric bikes, into the middle of forests and other places miles from a road where I would sometimes have to lift the bike up to get past fences or gates. I could even peddle a little without doing much harm to myself, but I reserved it for the worst hills and when my batteries were low. Prior to this I mainly used a mobility scooter but even with that I found that it could be quite a workout for your arms, and there was some mechanical work involved if you got a flat tyre.

My new symptoms are crazy and I wouldn't wish it upon anymore, i'm still searching for answers about it. I find myself wishing that I 'just' had normal ME/CFS like before, by which I mean moderate because being stuck in severe CFS is another kind of torment that I wouldn't wish unto anyone, I don't know why but my dips into the severe state were always short. Once I stopped being mild though, I never got back to mild again, and I don't really know why, it was about 8 months past the onset of the disease, prior to this point I could walk for miles albeit slowly, after this flare up / crash where I had an intense upper neck pain and felt fevered / dizzy I could no longer walk more than a few hundred meters at best, and never got back to that mild state where I could walk to town and back.

 

[hapl808]

My new symptoms are crazy and I wouldn't wish it upon anymore, i'm still searching for answers about it. I find myself wishing that I 'just' had normal ME/CFS like before, by which I mean moderate because being stuck in severe CFS is another kind of torment that I wouldn't wish unto anyone, I don't know why but my dips into the severe state were always short. Once I stopped being mild though, I never got back to mild again, and I don't really know why, it was about 8 months past the onset of the disease, prior to this point I could walk for miles albeit slowly, after this flare up / crash where I had an intense upper neck pain and felt fevered / dizzy I could no longer walk more than a few hundred meters at best, and never got back to that mild state where I could walk to town and back.

Yeah, all my dips into severe were short (usually days or weeks) - until my first dip into severe in my 40's and I just never recovered. About 10 years in now.

I never got back to mild after my viral onset - probably had mild before then and just didn't realize it because I was used to it. Became moderate and just dealt with it over the next 15 years with constant crashes and recoveries and guiding my career to things where people didn't usually notice that. It was very limiting, but I could always function well for a full day, just might take me many days to recover. I accepted it and did the best I could. Until I crashed into severe, and 'the best I could' became a few posts on a forum and some Youtube videos. Not much of a life anymore.

Sadly in retrospect I think a bit more pacing might've kept me more moderate and maybe avoided severe altogether. After a decade being basically housebound at my best, I'd say I mostly stopped expecting any recovery in the last few years. I still try stuff constantly so I guess some part of me hopes, but it's a smaller part daily.

 

[Wishful]

Well, that was a lot of typing for nothing.

No, typing out lets you re-examine the facts and assumptions, and maybe gives you a different perspective. I've typed things here and had strokes of new insight, so I do consider typing about ME to be useful. That's aside from the emotional benefits of sharing with another person or community.

I still try stuff constantly so I guess some part of me hopes, but it's a smaller part daily.

Me too. I'm not actively seeking out new things to try, but if I encounter a new product on a grocery shelf or whatever, I do consider its possibilities for affecting ME, and am likely to "buy that lottery ticket" in hopes that it will actually be a winner. Bonus points if it tastes good.

 

[GreenEdge]

I've discontinued most supplements because carnivore diet provides all the nutrients we require. However, I have found I still benefit from taking these:

• Thiamine (TTFD) aka Allithiamine - to treat Vitamin B1 (Thiamine) Deficiency.
• Niacin (B3) - is an efficient NAD+ booster in humans and improves muscle strength. It also supports (speeds up) tissue growth and repair.
• TMG - it provides methyl groups to replace what B3 depletes.
• N-Acetyl Cysteine (NAC) - when combined with glycine (in TMG) provides the precursors our bodies need to produce the anti-oxidant called Glutathione.

I also find medicinal cannabis oil is beneficial:

• THC helps treat anxiety and depression. The 'muscle' anxiety I often get - even thou I don't feel stressed. Maybe THC is as an antidote to past use of anti-anxiety medicine?
  
  THC seems to awaken and energize the nervous system; when combined with a stimulus (eg. movement) it helps retrain the nervous system.
  
  
• CBD helps calm the nervous system and dampen the effect of THC (making it comfortable). It's also a better muscle relaxant than medicine.

Likely cause of ME/CFS - Vitamin B1 deficiency caused by the virus that preceded it ?
Thiamine (B1) supports nervous system repair while THC helps reset & restore function.