My cfs started with gut issues actually. After having a meal at a restaurant I had severe abdominal pain and gas for a week before one morning I woke up and my world had turned upside down and I could barely move.
Could you give examples of these treatments ?
I have tried probiotics ( no effect ), two rounds of rifaximin ( small effect while taking the medication). Other than that I haven't found anything to address the gut.
I'm in a similar boat, though my gut issues preceded my ME/CFS by years. Nonetheless, I feel like my ME/CFS is almost certainly due to my gut issues, in whole or in part. I've been through quite a few gut specific treatments without anything working particularly well. Eventually I found out I have small fiber neuropathy, which can definitely cause or exacerbate GI problems due to its effects on the autonomic nervous system, so it may be that I will only improve once that condition is treated effectively, through IVIG or the like.
One treatment I think you should look into is serum bovine immunoglobulins (SBI). The thought is that taking immunoglobulins orally, they bind to bacterial LPS which both increase gut permeability due to inflammation as well as specifically leading to systemic symptoms like fatigue, pain, etc. You can get a doctor's prescription for SBI, marketed under the name Enteragam, but it's a little expensive, and there are non-prescription versions available on the internet. A related product is colostrum, which also contains other proteins, but if you have problems with dairy or lactose it may not be the best option. For me, Enteragam did improve symptoms initially but lost effectiveness. Hopefully it might work better for you.
When it comes to supplements that affect gut barrier integrity, probably the major target is the tight junction. Tight junctions are the gaps between epithelial cells whose permeability are regulated by various proteins, including claudins, occludin, cadherin, etc. One of the most interesting tight junction regulators is berberine, which also has fairly potent antibacterial effects, and so may benefit people with SIBO or other gut flora overgrowth issues. Quercetin also stabilizes tight junctions, in addition to being a mast cell stabilizer, which also may benefit gut permeability since histamine has inflammatory effects which reduce tight junction continence.
Some other supplements which supposedly improve tight junctions include resveratrol, curcumin, magnolia extract, skullcap extract, and raspberry polyphenols. From a dietary perspective, vitamin D is an important tight junction regulator, as are short chain fatty acids such as butyrate. Ideally, a healthy gut flora produces enough butyrate for this purpose, but if you have gut flora issues, some people seem to benefit from taking butyrate supplements.
Another possibly-overlooked part of gut barrier integrity is the mucus layer. The mucus layer is the first line of defense between the intestinal lumen and the epithelium - its upper layers harbor a good proportion of the gut flora, while the lower layers are nearly sterile. Mucus production is impaired in a variety of gut-related issues, including infections. I've recently turned my sights towards this target since I've had recurrent C. Diff, which is known to reduce mucus production. One possible solution would be to supplement some kind of demulcent, like slippery elm or marshmallow root, to form a physical barrier between the food you ingest and your epithelium, sort of a substitute mucus layer. However, these supplements form a gel out of complex carbohydrates/fibers, which might have unpredictable effects on the gut flora.
The mucus layer is formed primarily from mucin, which is a protein. I read somewhere that supplementing the specific amino acids that comprise mucin (proline, threonine, serine, and cysteine) actually upregulates mucus production, and I'll be trying that soon. I haven't found too many other convincing strategies for improving mucus production though - there's a lot of literature on the role of cytokine regulation, but it's kind of convoluted and doesn't lead to any clear answers for me. One pharmaceutical that came up in my search is Mucosta (rebamipide), which is used in various Asian countries to treat gastic ulcers. It seems like it may have a high rate of side effects though, so I'm a bit skeptical of it.
