It's all in the Gut. Why we get ME/CFS

[leela]

This is entirely non-science based, but my sense is that the gut stuff is not so much causative, as
evidence of, or the result of, the immune/nervous system gone haywire--which then becomes a contributing factor to the ongoing chronicness of the disease and its debilitating effects. Kind of like a feedback loop.

I say this purely from observation of my own experience. After a childhood of heavy anibiotic use, and then pre-ME several years of terrible recurring URI's that would last and last and get worse each time, the final blow that put me over the edge to ME Dx was a severe bout of giardia that lasted for months as I tried to slam it with really strong herbal treatments, until I gave in and knocked it more or less out with Tindamax. My gut has never been the same, and has gone through many phases both symptomatically, and with varying results from stool tests over time.

What you are saying makes perfect sense, Rich; yet the riddle remains of HOW to address the gut issues. It seems like something I'm always working on, but I only get occasional relief, for short periods. Blood work always shows a leaky-gutty situation, and stool tests always show something (different each time) though never anything really big. Over time I've had the giardia, whipworms, intestinal strep, mild colitis, zero beneficial flora, yeast overgrowth, some other kind of overgrowth I can't think of now (maybe B. hominis?) and all the usual things we all go through. The bloating is now permanent.

All this to say, there really seems to be nothing to do to address the situation. I can be pretty certain after the years of chronic full-blown yeast overgrowth, the insane heavy metal levels, and all the other crap going on in there, that there is a nice intelligent network of biofilms going on in there. There does not seem to be a clear path for dealing with that--lots of theories, yes, but nothing that really does the trick yet.

Which may lead back to my original thought that the gut stuff is downstream of the neuroimmune situation, or in a feedback loop with it.

2 from someone with dubious currency

 

[redo]

Hi again richvank,

Reply appreciated.

What I mean with problems in the gut being a common nominator, is not much problems in the sense of having symptoms which obviously comes from the gut - such as those you mentioned. But rather as having a yet to be identified pathogen(s) in the gut, which gives us the neurological symptoms, and also causes mitochondrial problems, methylation problems, problems with inflammation and so forth.

Much in the same manner that diabetics (people with type 2) don't feel any particular problems with the gut - but if you do a bypass of the first meters of the small intestines, their disease vanishes (long before weight loss occurs). I'll give sources to this if wanted, but point was just an example of a disease where they don't feel particular bloating, stomach upset, stomach pains, but it seems to originate in the gut anyhow (not confirmed, but highly suspected).

 

[maddietod]

Redo - I have no obvious (or subtle!) gut symptoms, but I just got the results of a comprehensive GI panel Rich recommended. I don't understand most of it, but even I know that +4 yeast/fungi (where 4 is as high as they go) bodes ill for my digestive health.

My personal take is that I didn't get ME directly from having gut issues. I'm sure I had rampant candida as early as my late teens, but then I became a vegetarian for 13 years (no B12), lived in NYC (toxic environment), had kids.....who knows?

Madie

 

[redo]

madietodd. I don't have any obvious or subtle gut issues either. I did a GIFX test (same as you I guess). Haven't got the results yet. But if I am right in my hypothesis, it ain't a microbe which is identified yet (so, such results wouldn't show you have the pathogen). But what the samples can show, is if you have low levels of certain protective bacteria, or high levels of some 'problematic microbes'.

 

[ukme]

Likewise with madietodd no outward signs of gut issues here (apart from odd bouts of nausea) but significant problems identified once tests had been run.

 

[markmc20001]

Enjoying the thread. Everybody is different, but I'm guessing my situation also seems to include a sluggish liver/or gall bladder in addition to an aggravated stomach. The reason I say that is because I've always had poor GI motility since being sick.

Once in awhile I will take something that seems to stimulate better bile flow? When that happens, I have less pressure in my head, and I have more energy.

Everything just seems to feel/function better with a happy stomach and happy liver gall bladder. The whole eco system.

Hope you guys can work it out!

 

[JPV]

Once in awhile I will take something that seems to stimulate better bile flow?

What might that be?

 

[markmc20001]

"Standard process cholacol". (favorite)

I also sometimes get a light colored stool to go with those GI problems mentioned. I found that taking taurine powder seems to help jump start those stools and turn them a darker color which I'm guessing means the bile is flowing better.

I also take another thing called "10 day acai berry easy cleanse" from applied nutrition. This only works for a few days, but is something I have had success with before. This should give one a pretty good idea what good bile flow is about.

One more supplement I've taken is Standard process folic acid b12. It has glands in it and makes me spacy, but can be good if my appetite has been shot for awhile and my stomach was bloated from liver related problems(guessing). Not as good as the other two.

I used to take Ursodiol(prescription generic for attigal), which helped with bile flow. However, I had an inccident with chelators and can't tolerate the Ursodiol any more. More specifically I think it was malic acid with Ursodiol that might have gave me problems and seized up my gall bladder again or billary tubes or whatever.

Anytime I get low on minerals, I have GI problems too. For instance, chorella will slow down GI motility.

Of course lots of magnesium helps too.

 

[JPV]

Thanks for the response...

 

[maddietod]

Well, here's a surprise! Testing showed off the charts candida and overgrowth of 7 or 8 "bad" bacteria. So 6 days ago I went on the strictest form of an anti-candida diet (+ some anti-bacterials). I eat all protein, all non-starchy vegetables, and juice carrot/zucchini/garlic 2ce a day. I drink water and decaf tea. No sugars at all other than what's in the carrots. Twice in the week I've had one small serving of carbohydrate (eg. brown rice), and today I'll have a little fruit.

It's almost ridiculous how much better I feel.

The catch is that I started feeling better so quickly that it can't be from killing off the yeast/bacteria. In fact, I haven't experienced any die-off symptoms.

Do I have a huge problem processing carbohydrate? Is being more alkaline now an important piece of feeling better? Am I now avoiding a bunch of allergens I was unaware of? [I already ate gluten- dairy- corn-free] I don't know, and it won't matter for a few more weeks, when I get dreadfully bored of this and it feels restrictive.

Anybody else have an experience like this?

Madie

 

[Sushi]

Well, here's a surprise! Testing showed off the charts candida and overgrowth of 7 or 8 "bad" bacteria. So 6 days ago I went on the strictest form of an anti-candida diet (+ some anti-bacterials). I eat all protein, all non-starchy vegetables, and juice carrot/zucchini/garlic 2ce a day. I drink water and decaf tea....

It's almost ridiculous how much better I feel.

Do I have a huge problem processing carbohydrate?
Anybody else have an experience like this?

Madie

I lot of us have trouble digesting carbs and have labs that show it. My doc prescribed prescription pancreatic enzymes to help with digestion.

Best,
Sushi

 

[MonkeyMan]

I lot of us have trouble digesting carbs and have labs that show it. My doc prescribed prescription pancreatic enzymes to help with digestion.

Best,
Sushi

Madie, that's great news!!! I have particular difficulty with whole-wheat bread. The chewier it is, the more gas and brain fog I get. Anyone else experience this?

Drew

 

[redo]

Now, I make these sketches just as much for myself as for others, but anyway here's how I think (with emphasis on think) the dots are connected.

I think that the difference between a gradual onset of CFS and a abrupt onset of CFS is if the virus builds up slowly in the body over years or if a significant trigger speeds up the process (vaccine, EBV, Herpes, flu, tick borne diseases etc). If the trigger not only triggers, but also stays there afterwards than it would add to the burden, making the CFS even worse.

The active virus is likely a retrovirus.

 

[redo]

I have to add that I think that the virus (or virus class) behind this is also responsible for MS, RA and fibromyalgia (FMS). If you have a certain type of genes the result is MS another type of genes and you end up with FMS or RA. Variations in genes of the virus may also be the difference between getting RA, FMS, CFS or MS.

If you treat yourself with antibiotics and improve by doing so, you might have:
- Put a dampen on the most active pathogenic microbes in the gut
- Made the autoimmunity less exacerbated (anti inflammatory effects) or effected other processes.

As soon as you've been off antibiotics for a while, than you've got good chances of sliding back.

If you use probiotics (or HPI) and feel a lot better, than you might have:
- Put a dampen on certain gut microbes
- Built up the gut barrier (lessened the leaky gut), thereby making the autoimmunity less severe and also less LPS in the blood etc. etc.

If you use Valcyte (which have immune modulating effects) and improve, you might have made the virus less active. That could happen by pushing the immune system generally towards being more active against viruses (and thereby also retroviruses), treating a herpes virus might make the body more able to handle other viruses, perhaps it has slight effects on the retrovirus we yet don't know about.

If you improve by going on a methylation protocol, you've got rid of many symptoms (which is great), but when you stop things slide back.

If you improve by going on a specific diet, or get worse by eating certain things, it may be that the pathogenic gut microbes thrive much more with certain foods and have more problems when the quick calories are taken away (as other protective bacteria than gets more the upper hand).

Just to add in the end; this is pure speculation, brainstorming for the purpose of building a CFS theory...

 

[Enid]

Thanks redo for your very interesting thoughts here.

 

[redo]

Glad you appreciated it :Retro smile:. Input is as always very welcome, if someone feels that the arrows should point differently than I'd really like to hear about it. Maybe there are other things which should be added to the theory. I am not sure about it myself, but this is the closest thing I am getting to an understanding right now.

 

[maddietod]

Anybody else using the new + button? I plussed the awesome diagram.

 

[mellster]

Redo, it all makes so much sense - now if I could get my gut under control once and for all... Even when it gets better it is frustrating waking up to a sore, heavy gut int the morning and it takes considerable amount of time to normalize. If one could fix the constant battle playing out in the gut my guess is it would improve CFS/ME symptoms by 80% at least.

 

[redo]

I agree Mellster, getting the gut under control would probably help - but not cure. This is a road under construction, details of the theory have changed since I made the thread, and will (probably) change again. But making these drafts helps with finding things that are both right and wrong, and than adjusting it accordingly.

I am thinking much of the gut problems is specific microbes which have grown strong - and might be controlled with antibiotics. But it's still very open. We don't know.

 

[leela]

Awesome chart, redo!