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

As to post #300, the gut flora change can exert some symptoms on it's own. But most of the symptoms come from the gut flora enabeling HERVs, and healthy people may have some subtle symptoms as a result of a changed gut flora, and people who are ill may get worse rapidly when the gut flora changes (because of stress, sugar etc) both as a direct result as gut->symptoms, but more so as a gut->activating HERVs->symptoms.

 

Reminder to self. Rewrite the "Why is it increasing so very much in prevalence in the Western world?" paragraph. Focus more on the bacteria than the food, to avoid people closing their minds. Begin with how overgrowth of the wrong bacteria in the mouth happens, how that almost only happens when the bacteria are fed the western diet. We've learned to tackle that (with fluoride), but... What about further down.

 

Dr Lewis checks food intolerances and CFS people improve, also balances gut bacteria.
http://www.cfsdiscovery.com.au/
Ask for the information sheet of 6 pages
the gut bacteria if not right can affect the immune system
GcMAF

 

thanks GcMAF, I sent them a request. do you currently get treatment with Dr. Lewis or know anyone who does?

 

Hi,
I am considering taking the tests,he has about 1000 patients.
I am in contact with him and I am convinced by his logic and protocol.:-
The problem starts with the wrong food and the wrong gut bacteria.
This causes leakage of the gut and toxins/cytokines get into the blood stream.
This causes inflammation and a defective immune system and can lead to a downhill spiral.
Hence we get diseases throughout the body.
causes for example parkinsons, MS and rheumatoid arthritis.
GcMAF which is used for CFS, cancer, aids etc is even helping autism patients
http://drbradstreet.org
So need to correct this by detecting food intolerances and rectifying gut bacteria.
After this all/most of the patients of Dr Lewis improve.
This inflammation problem is consistant across cancer, alzheimers, diabetes, probably heart problems, probably most diseases.
I am collaborating with Dr Brendon Coventry at the University of Adelaide in looking at the use of GcMAF. He initiated a vaccine for late stage melanoma. We are looking at getting funding for our work.
some of the people on this site are with Dr Lewis.
I hope this helps
GcMAF

 

Hi,

I'm a patient of Dr Lewis' in Melbourne. For me it has definitely been a gut problem - I was diagnosed with fructose intolerance which I've clearly had my whole life without knowing (had various tests when I was young, but they hadn't a clue back then, i.e. in the 70's). I was sick and unable to work for 4 years. I've been under treatment for just over a year now. I've gone from being mostly housebound with severe brain fog almost constantly, to now working 25+ hours/week; a huge improvement. Still have some problems, but minor compared to how I was a year ago. Now I no longer have the time to hang out on these forums - too busy!

I would recommend to everyone that you get tested for celiac disease, fructose and lactose intolerance, and IgG food antibody testing. Also a CDSA - but only if you have a doc who can read the results and knows what to do with them.

 

Thanks for this post; athomeinRwanda
I have set up a group Australia and New Zealand CFS treatment so that help like this becomes more widely available.
I am trying to consolidate the information.
I have posted this there, if its ok with you?
GcMAF

 

Sure - fine with me. I won't be contributing to the discussion much. Just too busy. Sorry. Will give details to specific questions when I can.

 

redo I think the gut is the most logical explanation for fatigue in my case, I have only read the first page of this thread but can you go into more detail about the concentrating thing? Becasue I have found concentrating on certain things can make me very anxious/panic, put me in a wierd state of mind etc.

Stress definetley worsens my symptoms and I was under a lot of stress around the time of getting ill.

Have you heard of gaps diet? http://gapsdiet.com/
This diet has apperently cured many mental diseases like autism through healing the gut flora.
I tried it but unfortunatley could not proceed due to bad "die off" symptoms that were probably due to lactoflora in the yoghurt. But it is evidence that it is indeed a gut flora issue I am dealing with.

 

I can only speak from my own experience, which was this:
Early in my illness I went to a naturopath who said it was all in my gut. He put me on $500 a month worth of pills and potions for three months, designed to clear out 'bad' bacteria and parasites and restock it with 'good' bacteria, and to repair damage supposedly done to the gut lining and wall.

I continued to get sicker.

I also went through the whole food intolerance diet (Failsafe) and for a long time felt I was gluten, dairy, egg, soy, nut, preservative intolerant and did not eat those foods.

I continued to get sicker.
I stopped the whole limited diet thing and went back to eating "normal" but healthy diet with the exception of milk, because I just dont like it anymore, and found that I got no sicker than I already was.

I belive that when when I was doing the intolerance diet and reintroducing different foods as a test, what I was interpreting as various foods making me sick was probably more a factor of exertion and stress that what I was eating. I was still trying to go to work at that time.

So I think the whole gut thing is another of those chicken and egg situations with MECFS. People probably end up with bad gut flora and maybe even food intolerances as a RESULT of having MECFS. An out of kilter immune system may fail to do its job and keep gut flora under control, and may over-react to some foods.

But I don't think gut flora is the root cause of MECFS.

 

This is a tricky area. I don't have any 'bad' flora according to any tests I have done (both culture and genotyping). But I do have severe upper fermenation. I don't know if it is yeast or normal flora thriving in the upper gut.
But I do think the current treatments to modify the gut flora content are ineffective. A lot more information is needed in this area. In my case, I do think this upper gut fermenation is the cause of my CFS. I've done so many treatments to no avail and I don't know why. Diflucan helped some as did lufenuron which points to yeast overgrowth. I am getting a camera pill test soon to rule yeast in/out.

 

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.

 

I'm not sure if someone has already mentioned this or not, but Ayurveda, an ancient Indian healing system, says that digestion is the most important thing to health. I think they refer to digestion more broadly than just the gut although that's probably the biggest aspect. There's a saying that a person with good digestion can turn poison into nectar and a person with poor digestion can turn nectar into poison. Although that's a metaphor, a literal example could be of sugar causing problems for those with candida.

 

good article

http://www.ncbi.nlm.nih.gov/pubmed/20442871

 

why is this thread dead? ive always wanted to check for food intolerance. there are also histamine intolerance, etc.
but last time the doctor wouldnt get me even i involved in a debate for nothing. but im still trying.
most of my life my gut always bug me. and my symptoms really correlate with it eventhough im not sure which comes first. its a vicious cycle.

 

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.

 

anyone here try to regulary make cultured veggies and consume them? i read its really beneficial for our healths esp digestive because it contains good live bacterias.
Sparrowhawk: food allergy and food intolerance or sensitivities are different.

 

but doesn't prof demeirleir think that HERV activation is the actual cause? HERV in the plasmacytoid dendritic cells, which mess up the cell function. these cells can produce massive amounts of cytokines....and in part, control NK cell function.....these cells are in the lymph tissue....of which 75% is in the gut.....

 

He also finds a lot of infections in the gut too. I have had a lot there that responded well to targeted abx treatment followed by super high dose probiotics.

Sushi

 

redo : Don't forget foods just as well as pathogens can trigger autoimmunity, which leads to damaged gut (not just changed flora), which makes perfect environment for viruses/candida/parasites etc. PWME are perhaps more sensitive- esp. once one or more of these things has already weakened gut. The 70% of the immune system in the gut is not functioning properly. It throws off every system of the body- hormones, metabolism, etc. I think the key is addressing all these factors simultaneously. Leave one out and the vicious cycle continues to perpetuate itself. Not to mention the nutritional deficiencies and compensations the body has made while the PWME's gut is sick.