Has anyone treated their gut enough to improve their CFS symptoms?

[Rockt]

Sorry to hear you're still suffering. Hopefully we can all find a way out, or at least a more livable level.
Yes, let's keep in touch. I would love to hear more about people who've recovered with FMT.

 

[Daffodil123]

here is one woman who is 80% better: https://uninvisiblepod.com/episodes/episode-19-lyme-disease-sascha-alexander/

here is another: https://carrotquinn.com/2017/07/09/...ibs-and-chronic-fatigue-with-monthly-updates/

the guy who runs microbioma.org is another one.

there was a guy on this forum too, who deleted his post:

Poo Transplant resolved my ME :-) [Deleted]

Stoo Brown submitted a new resource: Poo Transplant resolved my ME :-) - The Power of Poop I am a 53 year-old white British male living in Scotland. I had ME for ten years. Initially it was mild (although severe during relapses) and I was able to do quite a lot - although I had to retire from...

www.healthrising.org

there are some stories on Reddit too, I think. Here is one:

https://www.reddit.com/r/cfs/comments/cm7tax

there are several in the FB groups and others I have spoken to, who do not post much. I won't put their info here but if you join the FB groups, you can make a post. This is the biggest group:

Log into Facebook

Log into Facebook to start sharing and connecting with your friends, family, and people you know.

www.facebook.com

good luck!

ps. I cannot work but I am not suicidal or anything anymore. my life is tolerable now.

 

[Rockt]

Wow, thank you! These are amazing stories, though I wish I could read the Stoo Brown story that's been deleted. Lots of good resources I still need to read about too. All very encouraging.

 

[Daffodil123]

Stoo Brown just said he used poop from his niece, did several enemas (cannot remember how many) and was cured. There are those who did many colonoscopy FMT's and were cured. A couple of people literally drank the poop straight (cannot recommend) over a year or 2, multiple times a week, and now live normal lives with occasional boosters. One guy who I think was housebound or maybe bedridden, regularly posts pictures of himself downhill skiing and rock climbing now

 

[Daffodil123]

here is a case study: https://www.scirp.org/journal/paperinformation?paperid=75761

 

[Rockt]

Daffodil, PM'd you.

 

[MaximilianKohler]

Oh man, now I'm really frustrated because... I just used up most of my limited brain power searching for and reading about FMT in Ontario, Canada and there is a ton of research going on in my neighboring city. Lots of studies on FMT for IBD, cancer, mental health issues. But how to access them? Contact info. is really hard to find but I did find one doctor's email address. I'll write to him but I've tried contacting research physicians before with limited responses.

You should read the link I shared in comment #10 above. I would never enroll myself in one of those trials.

I am in the same city as you are lol. Hundreds are doing it themselves. Join the FMT groups on FB

Don't do this. They are riddled with scammers. Anyone recommending them is likely one as well. Read through this: https://humanmicrobiome.info/where-to-get-fmt/#intro

the guy who runs microbioma.org is another one.

This guy is a serial liar (see link above). @Daffodil123 appears to be working with him.

 

[Daffodil123]

lol oh brother. if I were working for him, I would have all the free poop I wanted

 

[Carrie Naturalway]

I got my gut essentially fixed between 2015 and 2020 and then I'm assuming it was COVID unless it was a coincidence, and then it was messed up again though not as bad. It's just about fixed again. And yes, 2015 was the turning point for me. I'd done several things that really helped but healing my gut is what really made me feel better. Not cured but now I have mild symptoms and I feel about cured in the summer. Except that the neurological issues of poor word recall and damaged memory seem permanent. And my immune system is weak. For me it was a probiotic called Equilibrium. I know probiotics can be a rocky road and what works for one won't work for another. I felt super crummy for 3 weeks when I started taking it but after that I felt great. I know sometimes feeling bad is your body adjusting and sometimes it can be that something in the probiotic is really aggravating things. Ken Lassesen's 'CFS Remission' helped me down the probiotics route.

 

[Rockt]

Carrie, thanks for sharing this. Really encouraging.
First, I'm glad you mentioned the CFS Remission site. I tried to read through it awhile ago and with a beleaguered brain and an increasingly shorter attention span, I found it really difficult to gain any traction. There's a wealth of information and Ken is a very smart man but I just couldn't figure out where to begin. Did you do any of the testing that is (I think) recommended there? Doesn't he use AI following testing to recommend certain remedies?
Regarding feeling crappy at first, do you think you were herxing? I herx with almost everything I try for the my gut. I'm now thinking it means what we're doing is working and I'm trying to go low and slow to start. I used to stop if something made me feel worse but I think I just needed to go lower and with smaller doses.

 

[Carrie Naturalway]

Carrie, thanks for sharing this. Really encouraging.
First, I'm glad you mentioned the CFS Remission site. I tried to read through it awhile ago and with a beleaguered brain and an increasingly shorter attention span, I found it really difficult to gain any traction. There's a wealth of information and Ken is a very smart man but I just couldn't figure out where to begin. Did you do any of the testing that is (I think) recommended there? Doesn't he use AI following testing to recommend certain remedies?
Regarding feeling crappy at first, do you think you were herxing? I herx with almost everything I try for the my gut. I'm now thinking it means what we're doing is working and I'm trying to go low and slow to start. I used to stop if something made me feel worse but I think I just needed to go lower and with smaller doses.

I didn't do any testing. I haven't looked at his site lately so I'll have to look at it. What really encouraged me was how much he said probiotics helped him and when I looked at the strains he was recommending I realized that the reason probiotics didn't work before for me was because you can't just take any old probiotic, you have to get a good one. I tried one he recommended and that helped but I did more research and found the one that really helped.

I'm not sure if how crummy I felt was a herx or if it was my body adjusting to the new strains. There is 115 strains in the one I took! It's hard to tell because it felt kind of like a herx but not exactly, however herxes can feel different from one another. It was a bit tough to get through. I know people often give up when they feel that bad and I usually take less of something than they say to take to get to the point where I can tolerate the symptoms. But I also hate to tell people to push through it because probiotics can actually mess people up. I didn't feel badly enough to think it was doing that, though, how can you know for sure. We are just having to always experiment on ourselves, aren't we?

 

[Rockt]

I've been experimenting for 20+ years and it's been pretty hit and miss. Some things have helped but no home runs. You're fortunate to have found something that works so well for you.
Is this the product you take: https://equilibriumprobiotic.com/
I might try it if they'll ship to Canada. I'm still really hoping to try FMT at some point but I don't know when that might be and if I can get some gains in the meantime that would be great.

 

[Carrie Naturalway]

I've been experimenting for 20+ years and it's been pretty hit and miss. Some things have helped but no home runs. You're fortunate to have found something that works so well for you.
Is this the product you take: https://equilibriumprobiotic.com/
I might try it if they'll ship to Canada. I'm still really hoping to try FMT at some point but I don't know when that might be and if I can get some gains in the meantime that would be great.

Yes that is it! I hope you can get it and it works for you. I know, any help is better than none, if it works at all.There is so much still to learn about the microbiome. Based on what I read I'm wondering if the reason Equilibrium worked for me is because I had a pretty depleted microbiome and so introducing new strains didn't fight with the ones that were already there. I've had gut issues since childhood then in 1999 I got candida and a tapeworm then after those were killed I got c.diff so probably the candida and c.diff and the treatments to kill them did a broad killing of everything in my gut, which was probably pretty depleted before that.

I get the idea that maybe people who have enough good bacteria will sometimes not react well to the introduction of so many strains of new bacteria. Perhaps I was just having a repopulating from scratch. 115 strains is a lot even though it's not close to the number of strains we have or should have. It's scary how many strains are being destroyed in people these days.

Also, everyone has different microbiomes so maybe this group of strains worked for my microbiome but won't work for everyone. Keep trying if this doesn't work. And they're researching the microbiome a lot so new research is coming out all the time.

They say that if you try a new probiotic and you don't feel better in a few weeks or you have a fever, allergic reaction or pain or severe symptoms to stop taking it. Otherwise, it may be okay to push through the discomfort until you feel better.

I happened to run into a microbiome scientist on Reddit. I read all his posts and figured out who he was: Stephen Skolnick. He worked for Seed and funny enough, he admitted that Seed's probiotic is not good enough because he feels that the microbiome does not normally include lactobacillus, that it only shows up because we eat yogurt and other foods that contain it. So we shouldn't take lactobacillus probiotics. I know people with ME CFS have problems with l. acidophilus but the idea of no lactobacillus is a new thought to consider. Then he went on to recommend a product called Pendulum Glucose Control which is anaerobic butyrate producing strains of probiotics. I plan on trying it. He also says to eat Natto. I looked him up and his schooling and credentials and found that he's a legit scientist. On Reddit he also claimed he did FMT with his own fecal matter on a desperate friend and it worked! Anyway, sounds crazy but the ones who initially sound crazy sometimes turn out to be the geniuses. I found his sub stack and I was impressed. If your brain can handle reading his blogs it's called: 'Eat Sh* and Prosper'. I know... 😯He calls it that because it's a reference to FMT.

 

[Rockt]

This is the Pendulum probiotic: https://pendulumlife.com/ I wonder if you would take it in conjunction with the Equilibrium. Cha-ching... about $150CDN/month by the time it's delivered - and how do they keep it cool in delivery?
Yes, Stephen Skolnick appears to be a PhD in microbiology. I've started reading some of his blog. Pretty fascinating and written so the lay person can understand it without it being overly dumbed down.

 

[Carrie Naturalway]

This is the Pendulum probiotic: https://pendulumlife.com/ I wonder if you would take it in conjunction with the Equilibrium. Cha-ching... about $150CDN/month by the time it's delivered - and how do they keep it cool in delivery?
Yes, Stephen Skolnick appears to be a PhD in microbiology. I've started reading some of his blog. Pretty fascinating and written so the lay person can understand it without it being overly dumbed down.

Oh wow the price went up and they changed the bottle design to a fancy one! I should have gotten it 10 months ago when I first heard about it. Their website says they ship it in cold packs. If I get it I will wait until after summer. I don't know if you should take it with the Equilibrium. If it were me I wouldn't, just so I could see what works and I would be having a hard enough time getting used to one of them, two at a time would be too much.

Oh good, I'm glad you found Skolnick's articles helpful. He is a straight talker and you can see that he is sincerely trying to help people. He's working on something very interesting: tryconstellation.us

 

[Rockt]

I found this pretty interesting from that site:

If this is true, most of the expensive probiotics out there are useless. Man, if we all could have invested the money we've spent on supplements that didn't help, well, I don't know if we'd be rich but we'd sure be further ahead.

 

[Carrie Naturalway]

I found this pretty interesting from that site:
View attachment 3500
If this is true, most of the expensive probiotics out there are useless. Man, if we all could have invested the money we've spent on supplements that didn't help, well, I don't know if we'd be rich but we'd sure be further ahead.

Isn't that wild? I never heard of any of those. No wonder they say now that most probiotics don't colonize the gut, they just help while they're there. The scariest thing is that we're losing strains that may not be able to be replaced, at least with today's knowledge. Come on, Skolnick and other microbiome scientists, keep working. We have messed ourselves up with our modern society.

The Equilibrium probiotic that helped me had Enterobacteria, Pseudomonadaceae, Aerominadaceae, Eubacteria, and a bunch just called 'Bacterium' and then a number. They are food sourced bacterium--not sure if all are--that are found for example, on surfaces of fruits. So maybe they have a similar function as soil based organisms. They help the microbiome even if they are not part of the microbiome. I guess they are synergistic in some way. I'm sure we were intended to have our ancestral microbiomes and then eat natural foods from natural sources whose bacteria would communicate and work with our microbiome. It's super fascinating. But then we went and messed our food and soils. These bacteria must have been enough to help my gut to the level it did and maybe that's what we should focus on along with SBOs if we don't know enough to replace our gut bacteria without FMT. And FMT can be risky if you use the wrong host.

And now I'm not sure that Equilibrium is what it was so I don't recommend it.

 

[Rockt]

But then we went and messed our food and soils.
I had an uncle who was a farmer and thought modern technology was wonderful. I questioned him about soul erosion and nutrient depletion in soil once and he said he you don't "soil" to grow crops anymore, just dirt that you added chemical fertilizer to!?!
Modern farmers also give antibiotics to all their cattle, not to prevent disease (which would be misguided enough) but to make them gain weight quicker. It's a common, accepted practice. Not good.

 

[Carrie Naturalway]

But then we went and messed our food and soils.
I had an uncle who was a farmer and thought modern technology was wonderful. I questioned him about soul erosion and nutrient depletion in soil once and he said he you don't "soil" to grow crops anymore, just dirt that you added chemical fertilizer to!?!
Modern farmers also give antibiotics to all their cattle, not to prevent disease (which would be misguided enough) but to make them gain weight quicker. It's a common, accepted practice. Not good.

It's such a huge problem. It's crazy how the 'better living through chemicals' motto has messed us up. I try and buy food from regenerative or at least organic farmers. Including meat from a ranch that has grass fed cows grazing in regenerative pasture.