Rufous McKinney
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how awesome.and during the last two weeks my condition has improved from moderate to mild.
how inspiring
how awesome.and during the last two weeks my condition has improved from moderate to mild.
Yes, thank you @Mimicry. The stuff you mention (BodyBio Gut Health Supplement) is also available on Amazon, BTW. I'm going to try it.@Mimicry - your experience with sodium butyrate is amazing - I'm going to try it! And thanks for specifying the dose and brand you're taking.
And btw, several sites mention that sodium butyrate can help with sleep . . . sounds too good to be true!
One of the things I have learnt with supplements is it often unfortunately takes a month or more to see anything positive or negative. I wouldn't assess value in a shorter time frame than that for most of them unless you get a bad response quickly.I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.
Yes. Butyrate can re-activate latent EBV. But when it is done purposely to treat infections, IV butyrate is used, not oral. It is done to kill latent EBV infections.@Mimicry - your experience with sodium butyrate is amazing - I'm going to try it! And thanks for specifying the dose and brand you're taking.
I googled sodium butyrate and found a reddit thread where the poster claimed that sodium butyrate triggered activation of EBV (with its accompanying horrible symptoms):
and then saw this study on PubMed:
Short, Discontinuous Exposure to Butyrate Effectively Sensitizes Latently EBV-Infected Lymphoma Cells to Nucleoside Analogue Antiviral Agents
which I think is saying that the sodium butyrate will increase the efficacy of antivirals against EBV - infected lymphoma cells (@Rufous McKinney - you might find this interesting)
And then I saw this on Reddit too:
My brain is quite fuzzy today (functioning on very little sleep) so i can't put all the pieces together (tbh, I would have trouble doing that anyways, sleep or no sleep!), but will keep an eye out for EBV-related symptoms when I start the sodium butyrate.
And btw, several sites mention that sodium butyrate can help with sleep . . . sounds too good to be true!
If it is going to work we don't know the dosages. Which is the worst, what if he need 5-10x the dosage. Who has the money to blow if it does not work until then?I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.
And btw, several sites mention that sodium butyrate can help with sleep . . . sounds too good to be true!
Butyrate may have dose dependent different effects low vs high as found in rats https://pubmed.ncbi.nlm.nih.gov/24212060 It is helpful when posting your experience if you add brands and dosage and also if you are mild/moderate or severe. Zinc deficiency/unavailability which is caused from chronic inflammation/infection leads to a leaky gut according to the research, and subsequent changes in the microbiome composition and function toward a more inflammatory state with increased propionate (propionic acid) and decreased butyrate (butyric acid) are part of those downstream effects which is why I suggested that some may require something like zinc glycinate added. High WASF3 disrupts Mitochondrial function while blocking ER stress lowered WASF3 levels and restored mitochondrial function according to the NIH. Taking TUDCA and/or Butyrate alone may work on lowering ER Stress, lowering WASF3 levels, and therefore helping with those downsteam negative effects on mitochondrial function potentially, but wasnt sure if by lowering the inflammation alone would restore normal zinc availability as well or if needed for zinc to be taken also when inflammation is currently testing high since that also has numerous other functions that are being dysregulated and leading ongoing to the low butyrate state among many other things.I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.
butyrate is also found low in ME/CFS
I'm pretty sure that would work as well.I keep seeing sodium butyrate mentioned, would this work or does it have to be sodium butyrate?
https://villagevitaminstore.ca/products/genestra-sunbutyrate-liquid-280ml
Yikes, that is concerning! I haven't had any EBV type symptoms so far, just my usual PEM + migraine combos. I also have a bit of a sore throat but that's probably due to the dry air we have in the house because of the air heat pump.I googled sodium butyrate and found a reddit thread where the poster claimed that sodium butyrate triggered activation of EBV (with its accompanying horrible symptoms):
I think it's entirely possible that they just don't work for you, unfortunately. There seem to be different subgroups in ME and it seems like everyone needs to find the supplement stack that works for them, there's simply no one-size-fits-all treatment. Like, around 30% of ME patients have autoantibodies against muscarinic acetylcholine and alpha adrenergic receptors and they might benefit from immunoglobulin or apheresis treatments. Some people find that LDN or LDA helps them a great deal (whereas I haven't benefited from either of those). Some people benefit from antivirals, etc etc. We don't really know enough about this illness to make more than assumptions and educated guesses yet. we just throw things at it and hope something sticks.I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.
That is a real shame. I found it null impact, I got better while I was on it but as I pulled off other drugs I got worse and realised it wasn't what was causing the improvement. CGRP is not the answer for us in my experience, not even for our migraines let alone the rest.A quick update... It now seems that the injectable migraine med I'm on (Ajovy) has worsened my condition and made my migraines, lightheadedness, nausea and brain fog (among some other symptoms) worse. I took my second dose twelve days ago and it's all come crashing down after that, but I had been declining even after the first dose, I just didn't connect the dots before the second dose. It's a pity because before I started it in mid October I was doing so much better due to the butyrate. I really hope I can get back to that level.
I think somehow us patients should try to come up with What Are these Potential sub groups.Some people find that LDN or LDA helps them a great deal (whereas I haven't benefited from either of those). Some people benefit from antivirals, etc etc. We don't really know enough about this illness to make more than assumptions and educated guesses yet. we just throw things at it and hope something sticks.
Yeah, CGRP is an important peptide in the nervous system (AFAIK it works in the parasympathetic nervous system and stimulates vagus nerve but I can't be arsed to look it up again, lol) and blocking it can result to all kinds of weirdness. I still think I'm gonna try another CGRP blocker because I've heard that even if one doesn't work for you, another one might work perfectly.That is a real shame. I found it null impact, I got better while I was on it but as I pulled off other drugs I got worse and realised it wasn't what was causing the improvement. CGRP is not the answer for us in my experience, not even for our migraines let alone the rest.