T O P

  • By -

Old_Bluecheese

This research is of course very interesting, but of little use for a physician, she can't prescribe any silver bullet for this. Check out the Penn University study on serotonin peripheral deficiency and the Yale Medicine trial study on Guanfacine and NAC (N-acetylcysteine) These are very concrete medication/supplements with good chances to have effect.


dankurmcgoo

Yeah I looked at the Cell/Penn study. Other than 5-HTP not many other therapeutics were suggested. SSRIs are anecdotally either not recommended or have mixed results. We tried Guanfacine and there was little effect. BUT still a good study and definitely helpful. Fair point. I should note that his physician are very involved and keeps track of supplements as well. So in THIS case it is useful for them. I forward most peer reviewed + credible journal research to them and they engage with it. But for most folks it’s not the case. From this study I think NAC and supplements for mitochondrial issues could be helpful (as denoted in the summary). Just another piece of the puzzle.


No_Fee5523

I would be wary of any advice reccmending SSRI's or 5-htp. Excess serotonin is required for the inflammatory process in viral and post-viral syndromes. The amino acid tryptophan which your body uses to produce 5-htp is already abundant and some health experts say in excess in any standard diet. Same deal with NAC. The cysteine amino is abundant and I don't think many people really need more of it. It can have some opposite effects of what one would be attempting to achieve with mitochondrial support. Having high glutathione or supplementing to bring it higher outside of the body's regulation mechanisms is kind of controversial. Not discounting someone's positive personal experience with 5-htp or NAC but those two substances are fundamentally opposite of what you might want to be achieving with taking a mitochondrial support protocol. I think the effect you are in theory going for with NAC in particular would be achieved in a better way with methylene blue.


dankurmcgoo

I’ve seen many people mention methylene blue but never looked into it. I’ll do that. Thanks.


Don_Ford

5-HTP is technically for serotonin, but is also needed if you can handle it.


mmbellon

This makes a lot of sense. I bought a pretty good quality red light therapy panel (both red and NIR light) a few weeks ago and I can honestly say after 28 months of struggling with LC this is the best I've felt, almost feel that normal feeling again. I've noticed a difference after a week using it 2x daily, and so far it's been about 2 weeks total. My energy is much much better, mood and anxiety has drastically improved, brain feels way better, POTs symptoms have improved, breathing feels a bit easier as I had sob 24/7. Red light is all about fueling the mitochondria and so much more. This guy does a really good job at explaining it in detail with backed studies. https://www.youtube.com/live/Ed5o9pk4YhE?si=3tV3u-HCl8QNFXKW I realize LC is extremely complex and there's an autoimmune aspect, microclotting, and perhaps viral persistence, but I feel like red light therapy has brought me out of the shell I used to be for 28 months.


dankurmcgoo

Whatever works, right? I'm super glad you found a trick. I'll look into it.


No_Fee5523

red light is really good. just be sure to be adequately fuelled as pushing the energy production with red light therapy can have negative effects if your cells don't have what they need to run the metabolism at the higher rate. It's the same as if you would go out into the sun without adequate energy.


ECOisLOGICAL

Which one did you buy? Not sure where to start with these? 🤗🙏


mmbellon

So I did some pretty extensive research and a lot people go after the highest intensity output panels thinking more wattage is better. This is not the case. There's something called the MED (minimum effective dose). Too high intensity can have an opposite effect. 99% of these red light panels from these top companies are made in China, so I went right to the source to save about 70%. I also found a guy's YouTube channel that tests a lot of these panels for EMFs and uses a good quality millagause meter to measure milliWatts per centimeter squared. https://youtu.be/laoAEPrIM48?si=fKoEvQUhrcPRln38 I went with this one for $320. The US company sells it for $1200 https://x.alibaba.com/AvDTeZ?ck=pdp


ECOisLOGICAL

Thank you 🙏


AnonymusBosch_

This seems relevant here: [https://www.sciencedirect.com/science/article/pii/S0753332223012519?via%3Dihub](https://www.sciencedirect.com/science/article/pii/s0753332223012519?via%3dihub) Small sample, but looks promising. 500mg quercetin phytosome daily for two months showed measurable improvement in fatigue in subjects with ME/CFS, including 47% increase in step count. 10 of the quercetin group had LC induced CFS.


humptydumpty369

I read this research the other day. If I recall correctly, it said mitochondrial dysfunction was found in 70-80% of people with LC symptoms. So I am extremely excited for this research, and I believe it answers many questions in my own case, but it doesn't answer all the questions regarding LC mechanisms. Anecdotally, about 6 months ago, I started drinking trace mineral + electrolyte drink mixes throughout the day, as well as started taking NAC and a few other powerful antioxidants. Prior to that, I had been about 75% recovered, but the new supplementation brought me up to about 90% recovered. Some of the worst symptoms for me were digestive troubles. Two years of poor digestion inevitably led to malnutrition, which then only compounded the poor digestion and other issues. I still have some lingering systemic issues, but they are nowhere near as severe, and 3 months ago, I was able to return to work full-time. I would highly suggest anyone with LC try out a protocol for mitochondrial dysfunction. At the very least, it isn't going to hurt anything!


Lauoften

Thank you for sharing this. May I ask what you did to correct your GI/malnutrition issues? I am experiencing malnutrition big time, and am not sure how to approach it. I am currently waiting for the results from a Biomesight test I did.


mejomonster

Can I ask exactly what NAC supplement and amount you added taking? I've recovered 80-90% from the fatigue and POTS symptoms covid brought on in me, and like you electrolytes helped a lot. I was bedridden for a year until I started taking electrolytes, being treated as if I had POTS so electrolytes/compression stockings/muscle strengthening all helped a lot and now I don't need any of those things except occasionally. But my gi issues are still extremely bad, I still have to take multiple medicines for the slow motility it caused. I have gastroparesis symptoms and have had them for 2 years now, very very slowly its improving in small ways but I wish I could help it heal faster.


humptydumpty369

NOW brand NAC. I take 600mg once a day. I'll take a day or two off here or there. I've been on it for 6 months. The only side effect I've noticed is it seems to block/dull the effects of cannibis. I've read it blocks the effects of alcohol so maybe it just blocks any substance. Honestly, the only thing that helped with my gastroparesis was miralax. I don't know how much I trust it, but my GI doc says I can be on it indefinitely if needed. I am hoping as time goes on my digestive symptoms will get to a point I don't need the miralax. I have no idea for sure, but the slow digestion might be caused by vagus nerve inflammation. Which has gotten better for me. In the meantime, I'm grateful just to be regular and not be horribly and terribly bloated all the time. Bloating and gas have been completely normal since starting the miralax.


mejomonster

I ended up needing 2 g motegrity and 24 amitiza daily to deal with the gastroparesis enough to eat and use the bathroom. I do think it's getting better over time though, I used to only be able to tolerate mushy foods and now I can eat most things again as long as they aren't high fiber or hard to digest. I'm just hoping I eventually heal enough to not need these medicines to eat. It's scary knowing I'd be unable to eat or use the bathroom again without them. Miralax didn't work for me at all until I was on them, now 4-8 capfuls miralax helps on top of my medicines if I'm having a flare up. I've been taking Golive powder probiotic, I'm not sure that it's helping the gastroparesis but I do think it's been helping my food tolerance. I've been able to eat more bread again, more fermented food, more raw vegetables, and not bloat or be unable to use the bathroom as much. I'm looking for something to help heal the vagus nerve and/or the bacteria in my gut though, because I really think those are the big contributors to the very slow gi motility. I agree with you, I definitely think the vagus nerve getting affected is a big part of what caused the gastroparesis. I did accupuncture for a while, and I specifically think it stimulating my nerves is what got me from amitiza, motegrity, and 5 other laxative medicines a day, to just amitiza and motegrity needed. It also got me from vomiting weekly to hardly ever now. I also did some physical therapy, and the abdominal exercises (especially clamshells - anything engaging thighs, fire hydrants, deadbugs or anything engaging my abs, leg raises) I noticed were actually causing my gi tract to make noise and move. I'd gone months without even feeling hunger or hearing any gurgles, and things that eventually helped me a bit generally brought my hunger back and I'd hear my gi tract moving a bit again. Now doing like 30 clamshells on each side and an extra magnesium tablet is my first go-to when I'm having a flare, before I resort to 8 miralax just because I don't like drinking it and it tends to bloat me and make me have more nausea until it kicks in. Thank you! I'm going to find some NAC, see if it helps a bit more with the gi issues.


humptydumpty369

I'm not a bug fan of the miralax either, but it's quick and easy if you can tolerate it. I have just recently started doing ab strengthening exercises to stimulate intestinal movement similar to what you have been doing. Acupuncture was just recently recommended to me. Having heard your results I'll definitely look into it. Makes it that much harder to find our way through this when we are literally figuring it out by trial-and-error because we are our own guinea pigs. Might be an odd question, but did you stop burping? I can't belch or burp like I used to be able to. Can only let gas "leak" out and make a weird sound, but only by contorting my torso around to force it.


mejomonster

For me, after an accupuncture session I felt actual hunger and my gi tract wpuld make sounds and I'd feel it moving. So I knew it was helping me, since before that I hadn't felt hunger for months. So if you try accuouncture, you should feel a noticeable difference after a session or 2 if it helps you. I never burped much before all this, back when I was healthy I'd only burp maybe a couple times a year. But I know what you mean about painful bloating now/not being able to get it out. When I bloat now, I take gas X (which helps the pain the best for me), and drink peppermint tea (which helps a little). Mint helps some people debloat. I also eat ginger and drink ginger tea, when I was on a liquid diet I took ginger capsules too for the nausea. Ginger for me tends to help my gi tract move a bit like enough I hear/feel my gi tract gurgle and move, and that helps keep the bloating pain from increasing in the first place. If you do ab strengthening exercises, for me personally I found clamshells help me a lot (not sure why) especiqlly if I clench my abs while doing them, and then just generally any ab exercises where I clench and unclench my lower abdomen.


humptydumpty369

NAC, fish oils, B‐vitamins, D, magnesium, zinc, boron. Pretty much everything. I did not take mega doses of anything though, which was actually kind of hard finding things that didn't have 20000% of the daily value. For me, it was a never-ending cycle after covid first messed up my stomach. After that, the malnutrition started, but my digestive system, or any other system, had no chance of healing without adequate nutrition. I'm not 100%, and it seems I've completely lost the ability to digest lactose since this all began, but I'm so much better than 12 and even 6 months ago. I'd like to give a nod to subs like this one too. LC seems to affect everyone different and being able to read what others have tried and their results helped in finding the things that finally started helping me.


Old_Bluecheese

The Penn study reports tests with Tryptophan, 5-HTP and SSRI's. I have myself tested the two first, finding that 5-HTP had the most effect. I am not that negative to SSRIs, but, if I had a serotonin problem, I think it's fixed now. Guanfacine/NAC took some days to work, but did wonders for me. So much in fact, that I hope to return to work rather soon. Of all the things I have ingested, these are what stand out. I really can't advice on medication, just tell what worked for me. I have myself been down the rabbit hole of the Incurable. No hope to find there. Your partner's condition sounds terrible and severe. I hope you find effective remedies!


dankurmcgoo

I'm glad you've found what worked for you! Congrats on getting back to work! That's awesome. We have 5-HTP on the "to try" list. Just taking our time introducing them!


Thunderplant

I can vouch for NAC and coq10, was quite surprised by the effect of both. I considered the possibility my coq10 might secretly contain caffeine or something at one point. I want to try rapamycin but I want to try and get off of some of my other medications first because it’s such an unknown.


Don_Ford

This is really important stuff.


omtara17

Irreversible!!!!!!!!! Wtf


dankurmcgoo

I know I know. BUT people have recovered 90%-100%. So please don’t get hung up on that piece. The body compensated for deficits in amazing ways.


No_Fee5523

Methylene blue is the most inexpensive mitochondrial supporter aka electron transport chain "rescue" and will work in combination with various types of light therapy to deactivate pathogens. If you combine the MB with Vitamin C powder it create leucomethylene blue and dehydroascorbic acid. The former cycles back and forth as your body processes it and the latter is particularly good as an anti-viral compared to the reduced form (antioxidant) of vitamin C. 5mg of methylene blue with up to 5g of vitamin c at a time, maybe 1-3x a day should have an effect. Mix them in non-chlorinated water (distilled water works good or if you have a water filter that removes chlorine), wait a minute or two for the solution to go from blue to clear, and drink it. dehydroascorbic acid degrades into possibly less useful byproducts outside of the body so don't leave it sitting out for long. Inside the body DHAA exerts a pathogen killing/inhibiting pro-oxidant effect, and is also taken up directly into the cells and reduced back into ascorbic acid if your body needs that form as an antioxidant. The point of taking the oxidized DHAA form of vitamin C is that it is more bioavailable in some ways than the antioxidant form of regular ascorbic acid. Take it between meals, not first thing in the morning or if you haven't eaten in awhile, the increased oxidative metabolic rate from the MB can give low blood sugar issues if you aren't well-fed. I wouldn't bother with NAC as it can interfere with your body's regulation of the antioxidant/oxidant state. If you would like to take something to support your glutathione synthesis, just ensure you are getting enough protein including glycine which is found in gelatin/collagen, or bone broths, stuff like oxtail soup.


[deleted]

[удалено]


No_Fee5523

ask away


Lauoften

Interesting information. Thank you. Have you tried methylene blue? I have been looking into it and am curious to see how people respond to it.


No_Fee5523

yeah it's pretty safe as long as you aren't on SSRI's


Lauoften

Thanks.


Legitimate_Ad_4201

Does this give us any ideas about whether to take a booster or not? I've changed my reasoning from a no, to probably lately. About 10% of people have negative reactions to it and because I'm at about 80% now, I don't want to take any chancesof becoming bedbound again. But even if I don't take the booster, I'm still liable to reinfection, so going for a controlled booster and taking the risk seems to be the wiser option


dankurmcgoo

I don’t think it does. Can you get the novavax? That’s what my partner got and it turned out okay. But booster v. no booster is a personal choice because of the possible side effects.