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

Adlyfrost

Adlyfrost

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Sparrowhawk : Regarding supplements: Magnesium Stearate is not Magnesium at all and it is in almost every supplement. It can cause binding and autoimmune problems in the gut. Also, some supplements that claim to harbor no allergens have potato starch and rice bran or rice flour. Many of the amino acids used in chelates are from grains or soy. I was having a racing, thumping heart beat after taking a mineral only to discover it was chelated from rice.

Recently I stopped all my supplements and while on a broth mini fast I added them back slowly to see which are the problems. Really helped. Bottomline: the least pills the better. I am going to be looking for mostly bulks and powders and fresh oils from now on. Really stinks since I have invested a small fortune in my pill form supplements. :-(
 
globalpilot

globalpilot

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Victronix said:
Just curious, what is "severe upper fermenation" and how were you tested for that?

For me, an overgrowth revealed itself when I was cured from a multi-year stomach "sensitivity" to everything, with 10 days of an antibiotic I took for pneumonia (doxicycline? I'll have to look it up. A week of paramomycin cured it in 24 hrs, years earlier, but 2 weeks later it all came back). Even with that massive improvement, I continue to have to take care of my stomach all the time. At the moment I am trying a gluten free diet. I do feel like I can think a little more clearly, and it helps me to avoid the foods that are really hard on my stomach, but so far, that's about it.
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I didn't see this before.
Severe upper fermentation is what it sounds like - a lot of fermentation happening in the upper gut. That I didn't have to be tested for. I know I have it because of the massive amount of burping.
 
Adlyfrost

Adlyfrost

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ThatBloke: Unfortunately addressing gut the alone will likely not cure CFS because of all the complications having a compromised gut causes. Not that I am disagreeing with your instinct that the gut is not the root cause of your CFS. But it is definately part of the cycle for many people and a good place to start.

But I take your point. For example, when I am at my sickest, the gut stuff does nothing. The only thing that helps are immune-modulators. At that point I have no appetite and it is all I can do to eat an apple or a smoothie (if someone makes it for me) or some broth. And eating light for months and months like that DIDN'T get me better. Not with viral and parasitic infections. (Eating poorly did make me worse though.) Only astralagus, Equilibrant, Kutaja- (and I could have done with some good antivirals if I had had a good doctor too)- got me better. When I have just the plain old 'pain in the but' CFS- (exhaustion, PEM, mild viral symptoms, in bed alot but ambulatory,etc.), not only addressing the gut but hormones and metabolism through nutrition is essential. I have gotten to a medium functioning person this way. And I think if I went all the way with this- the bad stuff would never come back. Working on it. Keep you posted.
 
Daffodil

Daffodil

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not doing too well ....on antibiotics and vsl-3....constant diarrhea and now sebhorreic dermatitis on the face.
 
Daffodil

Daffodil

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hi neilk. i dont know. i left a message for my doc and am waiting for response. i have read many forums where people say they got diarrhea from VSL-3 so they stopped taking it...but maybe it is temporary during die-off? no idea. 2 of the antibiotics i am on also have diarrhea as a side effect but probiotics are supposed to help with that...so not sure what it all means.

certainly the sebhorrea is interesting....its an autoimmune reaction often linked to the gut.

xox
 
heapsreal

heapsreal

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Sparrowhawk said:
Is sacchromyce bouldarri something you have used with success?

On edit, this was pretty informative on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296087/
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Yes i use sacchromyce bouldarri and was advised by my doc about this supp, its a non pathogenic yeast which can help with gut flora and i use it especially when on antibitocs which i have been off and on for awhile now which i think has helped me avoid candida etc. If i do ever get a gastro bug i just up the dose some for awhile, seems to work for me.
 
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Elph68

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598
Sparrowhawk said:
No need for the thread to be dead! Whether chicken or egg, gut health is clearly a factor for many of us here.

I'm not sure, but was considering taking the ALCAT test (supposed to show food allergies) -- a friend of mine who was collapsed for 3 months, and had food issues since she was a teen was immensely helped following the recommendations after this test but I'm not clear on the science of how they do this. E.g. if my NK cells don't react to pathogens, is this ALCAT test actually going to tell me anything (will my cells react at all to foods). I know I'm intolerant to many foods because my body tells me after I eat them. Last summer broccoli and asparagus we're totally great, since winter I can't eat them without IBSD, pain, bloating etc.

If I were to do food allergy testing, what would folks here recommend?

I've tried probiotics and they worked for a while to normalize things, now if I take them it just seems to make IBSD worse.

I've just read the threads about fecal transplant option -- if indeed those work for some subset of CFS/ME folks then there's ample evidence for the original thesis on page 1 of the thread. If not chicken then perhaps egg, but once the gut gets back in balance, things may improve (nutrient absorption --> healing).

I'm eating such a limited number of foods now (pure paleo -- have hypoglycemia in addition to food intolerances) that I have to assume I'm missing out on some nutrients. And I'm not tolerating supplements more than every few days (stomach pain, nausea, delayed emptying, all of which resolve within a few days of stopping supps), so it's making it hard to keep up with nutrient losses due to IBSD. Lymphcytic colitis can be caused by taking asperin long term, so I wonder if the supplemnts themselves are causing some of the issue, like if I developed a sensitivity to some of the fillers, or what.
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Hey Sparrowhawk ... just throw my 2 cents in .... Enterococcus, streptococcus and prevotella are the most consistently overgrown bacteria in the gut of CFS patients (University of Melbourne) commercial probiotics have lost the ability to connect with epithillial cells and therefore are only transient and also contain sugars as binding agents which feed the bugs I just mentioned. Enterococcus, Strep and lactobacillus are proliffic H2S and lactic acid produces and produce an environment which reduces the good bacteria .... Enterococcus and streptococcus produce enzymes and toxins such as gelatinase, streptolysin, cytolysin, mytolysin, and hylaundranise which damage and destroy epithelial cells causing inflammation (in all the mucous membranes ... how many people started with a sore throat?) and sends the immune system into overdrive ....

Stop the cause of the inflammation, stop the disease .... www.superbugskill.com
 
aimossy

aimossy

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I had the sore throat thing elph68 at the beginning.
recently made a mess of my gut very bad on probiotics and got the sore throat back. may have been the lactic acid thing I discovered about on here.:)
 
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Elph68

Senior Member
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598
Hey Aimossy .... most likely viridans strep was the cause of your sore throat .... pathogenic normal flora .... can develop into cervical gland lymphodynia .... (swollen neck glands) .... I bet all your throat swabs are/were normal ....
 
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