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

[Rockt]

The one constant in this battle, for me, is ongoing gut issues. I've tried many treatments including pro and pre biotics, natural antimicrobials, herbs, ozone, low fodmap, keto, paleo and vegetarian diets. I've had some decent improvements but nothing ever lasts. The last treatment that helped noticeably was oil of oregano (Biotics Research ADP). I started last summer and took it until March, when I read that it's a powerful antibiotic and could kill good bacteria as well as bad. I don't know if that's true or not but I thought I should at least take a break. Interestingly, while I was on it, I didn't get sick once (normally I'm sick most of the winter) but a week after I stopped taking I got sick and kept getting sick the rest of the winter.
Anyway, I've always thought that if I could really get my gut in substantially better shape, my overall CFS would be better. Has anyone been able to fix their gut or at least substantially improve it and if so, has it helped overall symptoms?

 

[MaximilianKohler]

Yes, with FMT. Certain donors have been hugely helpful. To boost their efficacy even further, we'll need new methods to clear the existing gut microbiome.

 

[Rockt]

Thanks Max.
Very interested in FMT. What types of improvement have you experienced?

 

[MaximilianKohler]

Improvements to every aspect of health, including CFS. You can read my experiences here: https://forum.humanmicrobiome.info/...ons-from-13-different-fmt-donors-jun-2018.53/

 

[Rockt]

Thank you. I wasn't able to read all of it but, your experience suggests there are potentially huge gains possible with FMT but like so many potential treatments, it's never as simple as it seems at first glance. I know with C. Diff., one FMT is usually successful in controlling it. Not that easy with CFS apparently.
Your last blog post I saw was in January, (though there's a lot of links and info. to sift through and my beleaguered brain could have missed later posts). Are you still pursuing FMT?

 

[Creekside]

It's certainly possible to reduce ME symptoms by gut alterations. I don't think gut issues are the root cause of ME, and fixing those are unlikely to cure ME, but I do believe that gut issues can worsen ME symptoms, so stopping that worsening is helpful. I've had multiple worsening from gut problems (suddenly becoming intolerant of some food), and have managed to fix them. There's no "one true way to fix guts"; it's just experimenting on yourself to find what works for you. Food poisoning (flushing out the digestive tract) has fixed serious problems twice so far. A single probiotic capsule fixed one intolerance that had persisted for a year, and a single meal of squash fixed another serious intolerance, but there's no way to predict what will be an effective treatment for which mysterious problem.

Knowing that other people have fixed their gut/ME issues might give you some hope that you can find some for yourself too. Just keep trying.

BTW, you can try hundreds of "This worked for me" treatments without success, but then you might unknowingly eat a bug in your meal and fix your problem ... and forever wonder why that meal that you'd been eating for years suddenly helped.

 

[Rockt]

I probably have tried hundreds of "This worked for me" treatments without success (or at least it seems like it). But with all the findings about the gut lately and it's complex relationship with the brain and immune system, I wonder if our conditions (and so many others) aren't caused by gut issues. If not the root cause, microbiome dysfunction has to be HEAVILY involved in most cases. Are there any CFS sufferers who don't have gut issues? Even if they don't have obvious symptoms I bet there's something amiss in there.

 

[MaximilianKohler]

Are you still pursuing FMT?

Yes. See:

Well, here's a summary of the situation. There's a likely treatment for CFS, long COVID, and most chronic diseases, but it will never be available unless the federal government takes action.

In November 2024, I drove to DC from California to try to get someone in the federal government to do something. I've been living in my car here ever since, visiting the congressional offices most days, talking to dozens of congresspeople. Recently, one of their staff told me they basically ignore individuals, and I need to recruit more people to petition them in support of the same goal.

So, whoever would like access to an existing treatment can email me, and I can guide you through contacting specific congresspeople.

Your last comment is exactly right.

 

[Rockt]

Sad. Fibromyalgia, ME/CFS, IBS, other chronic conditions, have been largely been ignored. Long Covid seems to have piqued some interest so hopefully that will lead to more funding, treatments, etc. I'm 61 so I'd really like it to be in my lifetime.

 

[MaximilianKohler]

More funding is largely a waste. We need people getting involved and pushing for reforms to the incredibly flawed research system that has been miserably failing re FMT.

But the patient community has been too lazy to lift a finger to do anything. "I hope someone else fixes it. I'm not willing to do anything to help" is the common notion.

 

[Daffodil123]

Gut Dysbiosis will be the root cause of almost every chronic disease known to man.

 

[Rockt]

20 years ago I was tested and the results said "Complete Dysbiosis". Great I thought, take some probiotics, fix my gut, I'll be back to normal. But like I often say, the deeper you go, the less you know. Still trying to fix it.

 

[Daffodil123]

20 years ago I was tested and the results said "Complete Dysbiosis". Great I thought, take some probiotics, fix my gut, I'll be back to normal. But like I often say, the deeper you go, the less you know. Still trying to fix it.

its very difficult to fix like that. you should look into fecal microbial transplants

 

[Rockt]

Yes, as Max above has also pointed out. Very interesting stuff.
Unfortunately, I'm in Canada and, at least in Ontario, there's very little FMT being done. Well, actually there's a hospital 20 minutes away that does it but you have to have 3 documented cases of C. Diff. to qualify. They use the capsules and you prep for it the same as you would a colonoscopy. I
think I've actually had C. Diff. at least twice but only one is documented.
It's so infuriatingly stupid - you have to go through treatment with Vancomycin, it comes back, rinse repeat, rinse repeat and finally you get the FMT which has close to a 90% success rate. Meanwhile the antibiotics continue to devastate your microbiome and C. Diff. becomes more antibiotic resistant. What a bunch of clowns. I calmly laid that out for my doctor, he supposedly listened and then prescribed Vancomycin. Ugh.

 

[Rockt]

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.

 

[Daffodil123]

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

 

[Rockt]

Thanks Daffodil and small world
I'll check out the FB group but it isn't risky trying this on your own? How do you ensure there aren't harmful things in there? You don't want to solve one problem, only to create another.

 

[Daffodil123]

For sure there is risk. It all depends on level of desperation. You can also order it or go to clinics outside of the country. That involves a lot more money..but might be safer.

 

[Rockt]

Like many of us, I've taken risks out of desperation and some of them haven't worked out well.
Again, I'll check out the FB group but is ordering in Canada even possible? And going outside the country, doesn't, I don't think, mean the U.S. I believe (and someone please correct me if I'm wrong) the U.S., like Canada, has only approved FMT for treating recurrent c. diff. And even if you have recurrent c. diff. and you're lucky enough to convince a doc to refer you for FMT, you'll only get one treatment. From reading Max's information, it sounds like getting any kind of decent results re CFS symptoms requires many treatments.

 

[Daffodil123]

I am suffering greatly due to many of the choices I made out of desperation, so I can relate. Yes, you would have to leave the continent several times to do this effectively. You can order online but again, it is expensive. I have found local donors before, but it takes a lot of work. If you would like to "join forces", given we probably live close to each other, please let me know. I have had improvements but still have a long way to go, having been sick very very long. I can introduce you to some who have recovered with FMT