wabi-sabi
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Erm... I don't know that one. That's more of a question for your doc.
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The good news: cause of muscle weakness ME/CFS discovered
- Thread starter SWAlexander
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- sodium levels
Gingergrrl
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No worries! I was just curious to hear your thoughts since you definitely know a lot about the different autoantibodies and understand them better than I do!
wabi-sabi
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I just love reading about the science and keeping up on the research. Happy if that's helpful for other people.
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Is this unique to ME though? The possible fabled biomarker?
For me, though, I'd say stamina's the bigger issue when it comes to muscle weakness, and that I very quickly degrade with use.
For me, though, I'd say stamina's the bigger issue when it comes to muscle weakness, and that I very quickly degrade with use.
Gingergrrl
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It is definitely helpful to me. I will forever appreciate all of the people throughout the last 8-9 years who have helped me to interpret and understand the scientific aspects of my illness.
bertiedog
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I am pretty sure I had that in November as I caught it from one friend who came round 5 days earlier and the virus was confirmed by her GP after a blood test. Have never felt so I’ll ever and took about 2 1/2 weeks to start to feel a bit better. The coughing was horrendous and caused pain both top and bottom of my lungs so much so I had to bind my ribs up to help with the pain when I coughed which seemed to be about every couple of seconds. .
i am back to my diminished ME state now 6 weeks later and was able to have the COVID booster a week ago without any ill effects.
I hope you have got somebody to look after you or at least to help you get over this foul virus and hope you get over it as quickly as possible.
Pam
Gingergrrl
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SWAlexander
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Thank you for your empathetic words. I live alone and have a really hard time asking for help.
My ribs hurt badly, and both Eustachian tubes are closed, major headaches and and and, but the oxidant level is back up by 96. I´m on prednisone/nebulizer.
I am very tired and sleep a lot.
Wishing all a happier 2023.
BTW. If you can please read: https://forums.phoenixrising.me/thr...lity-the-pathobiochemical-implications.89254/
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linusbert
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thiamine shifts the cell contents to more potassium retention and more salt excretion. if i remember correctly it was something around 10-30% which makes significant effect in electrolyte balance.
people with thiamine deficiency have less potassium and more sodium in their cells, and probably a difficulty even with potassium supplementation to fix this issue.
thats why potassium and thiamine go hand in hand.
people with thiamine deficiency have less potassium and more sodium in their cells, and probably a difficulty even with potassium supplementation to fix this issue.
thats why potassium and thiamine go hand in hand.
pattismith
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When sodium increases in cells, the NA/K ATPase pump is supposed to be activated and pump the sodium out of the cell and the potassium in...
It requiers energy (ATP) to work.
If this pump fails, the cell swell and then lyse.
Could we have a lazzy NA/K ATPase pump?
linusbert
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or we could have too less atp.
or the problem could be further upstream, and the observed abnormality is normal functioning given abnormal conditions elsewhere in the body. Unless a treatment for that sodium abnormality is easy to find, it's probably not worth pursuing. I'd rephrase that as: "sodium overload may play a role in the pathophysiology of one symptom of ME/CFS in some PWME".
pattismith
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After 5 years experimenting drugs, I had the evidences that peripheral hypoperfusion drives pain and weakness, both in muscles and in the low back.
My blood pressure is naturally low, and each time I happened to take a drug lowering blood pressure, hypotension increased pain (and muscle weakness) in my legs and low back.
It happened both with Beta Blockers and with AT1R blockers.
Women are more prone to low blood pressure and this is the reason why they experience more these symptoms.
Women also suffer more from iron deficiency and this is a common cause for low dopamine in the brain and central hyperalgia and exercice intolerance.
Any disease that lower blood volume will induce some degree of hypoperfusion in muscles and some part of the brain and produce the kind of symptoms we observe in Fibro and ME/CFS.
The question would be: are the GPCR autoantibodies observed in ME/CFS a body reaction to fight the peripheral hypoperfusion or are they causative?
Waverunner
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@pattismith Do you know of any diagnostic that would help to diagnose blood volume issues besides the standard tests (anemia, iron, B12, hematocrit etc.).
I'm not sure if I remember correctly but it's not so easy to diagnose if a person does not have enough blood overall but I might be wrong. Any input is appreciated.
I'm not sure if I remember correctly but it's not so easy to diagnose if a person does not have enough blood overall but I might be wrong. Any input is appreciated.
datadragon
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Butyrate, a short chain fatty acid (SCFA), is an efficient mitochondrial fuel that bypasses the highly regulated LCFA import mechanisms, directly enters the mitochondrial matrix and undergoes β-oxidation. An acute increase in ATP synthesis, via short chain fatty acid (butyrate) might help in that later stage. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7165026/
linusbert
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so how to take it?
datadragon
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Needs to be discussed. I had only tried sodium butyrate which is available as a supplement over the counter that seems to work well. I see there is this patented form that claims will have better delivery to the intestine which could be tried if the normal capsules more easily available cant do the job well enough. It says - it is preferable that butyric acid is in the form linked to sodium due to its high lipophilicity and cellular exchange capacity. Sodium butyrate is a very active molecule but with a high degree of dissociation ( pKa 4.82 ), which in the absence of adequate protection would not reach the intestine, in particular the colon / rectum
https://www.butyrose.it/butyrose-lsc-microcaps https://www.viafarmaciaonline.it/butyroser-30-capsule-da-600-mg.html
Tributyrin is the triglyceride form of butyric acid (the other form being sodium butyrate.) Tributyrin is essentially a triacylglyceride (TAG), which is an ester derived from glycerol and 3 fatty acids (triglyceride). Tributyrin requires lipase to release the butyrate attached to the glycerol. https://www.allaboutfeed.net/animal-feed/feed-additives/sodium-butyrate-or-tributyrin/ The only reason I didnt try being that blood type A often has the lowest levels of critical intestinal enzymes known as phosphatases - lipase is needed to assist in fat breakdown - which I guessed might possibly be an issue for type A's if I wasnt overthinking that. https://dadamo.com/dangerous/2023/04/01/do-we-need-a-different-digestive-enzyme-for-each-blood-type/ https://pubmed.ncbi.nlm.nih.gov/30530634/
Miyarisan was another but I believe that is gut bacteria that make butyrate, need butyrate since acetyl coa may be low in later stages to convert to butyrate. https://cfsremission.com/2015/10/19/miyarisan-clostridium-butyricum-revisited/
high-fat dairy is a good source of butyrate. Grass Fed Butter is one of the best sources of butyrate and to lesser extent, other foods that contain some dairy fat. The fattier the food, the more butyrate it will have, so whole organic or raw milk has more than skim milk (and whole has been demonized), and heavy cream has more than either. Its one of the reasons why full-fat dairy is actually associated with lower BMI. Organic Cheese and Yogurt as well. Seems many tolerate A2 milk better than A1 as well and commercial milk likely has little grass access. Red Meat is a particularly great source of zinc, but ample amounts are found in all kinds of meat, including beef, lamb, and pork which also may help restore the gut barrier and butyrate levels. In later stages ME/CFS cant make butyrate or energy due to the loss of Acetyl-CoA. a 100-gram (3.5-ounce) serving of raw ground beef contains 4.79 mg of zinc, which is 43.5% of the Daily Value (DV) for men and 59.9% of the DV for women https://fdc.nal.usda.gov/fdc-app.html#/food-details/174030/nutrients
a September 2018 study in Food Control:
https://www.sciencedirect.com/science/article/abs/pii/S095671351830166X
a June 2016 review in Neuroscience Letters
https://www.sciencedirect.com/science/article/pii/S0304394016300775?via=ihub
Butyrate is metabolized to acetyl-coa which may also help fix the low acetyl-coa leading to the itaconate shunt https://www.cell.com/molecular-cell/fulltext/S1097-2765(12)00777-0
"Butter makes it taste much better naturally" (Canadian butter marketing slogan) Butter seems way cheaper than the butyrate supplements I found online, so it's good for a quick "Will supplemental butyrate make a difference?" experiment. What I don't know is whether swallowing some butter actually elevates butyrate levels in the colon. That's not clear for the various supplements either. Buy special time-delay capsules? Suppository capsules?
Gee, you're putting me and my (older) knowledge to shame. Good for you, though.
Wishful, I just noticed that you're from Alberta. We used to live in Toronto and then Saskatchewan....we came to Dallas, TX. probably 47 or so years ago. What?
Have spent a lot of time in Alberta and B.C., although my husband was British and we spent lots of time there.
Do you experts think cheese would help as much as butter? My arms and hands are very weak again, but it's also a sign of one of my other neurological conditions. So much knowledge....thanks! Yours Lenora
Wishful, I just noticed that you're from Alberta. We used to live in Toronto and then Saskatchewan....we came to Dallas, TX. probably 47 or so years ago. What?
Have spent a lot of time in Alberta and B.C., although my husband was British and we spent lots of time there.
Do you experts think cheese would help as much as butter? My arms and hands are very weak again, but it's also a sign of one of my other neurological conditions. So much knowledge....thanks! Yours Lenora
linusbert
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i used to love butter, but i seam to get diarrhea from it recently :/
so there are supplements? guess i order some