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

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by redo, Mar 26, 2011.

  1. Rockt

    Rockt Senior Member

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    Yes, I would have to concur with that Redo. Here in Canada we have a very real doctor shortage, so they are in demand, whether they are good or not. In fact, everyone just assumes they are good because any doctor is better than no doctor. Some, (not all, thankfully), especially the specialists it seems, act like rock stars. And despite the fact we are the originators of the very good Canadian Concensus Documents for ME/CFS and FM, I've yet to be able to find a doctor that has anything to do with CFS. Almost everyone I've seen steers well clear of that subject, some even denying it exists, (honestly, that happened to me just before Christmas - I was stunned).
  2. topaz

    topaz Senior Member

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    Thats my best guess too. So many critical neurological processes take place in the gut that this is where I think the problems originate, at least thats my thoughts at this stage. What I believe happens is that an impaired gut causes gradual erosion of health (which is very gradual and we are able to by and large function somewhat effectively still) and then one thing happens, be it a very stressful event, usually as part of a series, or the body's inability to ward of a harmful pathogen (that would otherwise have been dealt with in "normal course" - Im not talking about some super pathogen that even a "healthy" body may be unable to deal with) and that event is the straw that broke the camels back,
    I agree.

    Post script - After posting this, I was catching up on posts and came across this one by Richvank which pretty much aligns with my view (or vice versa as he is the superior mind in this area :)).

    Refer para 6-8 in his post, #8 here http://forums.phoenixrising.me/show...morphism-test.&p=190686&viewfull=1#post190686

    [/QUOTE]I am not suggesting antacids and probiotics. I am saying it would most likely have the same effect as implanting. But that said, I have never heard of anyone who's recovered from eating well and taking probiotics. I have tried that myself for very long (no carbs at all), but it didn't work for me. I am glad if it could work for others, but I am thinking the odds aren't good. Improvement, yes, but cure, no.[/QUOTE]

    I apologise, I assumed you suggested to take antacids with probiotics to overcome the stomach acid. My mistake in interpreting. Antacids with probiotics would defeat the purpose of implanting as antacids destroy too many good flora.

    I totally agree with you about a good diet not being sufficient to provide a "cure" or remission. To digress, I have started to use the term remission rather than cure as cure is defined as permanent and I believe that maintenance is required to maintain the level of recovery achieved (Freddd is a typical example of what Im referring to).

    Having said that, IF the gut is a likely cause (and we seem to agree that this is a likely hypothesis), then by improving the gut you are both assisting your protocol (whatever protocol one is following) and also guarding against a relapse later. If the problems start in the gut, then you need to ensure that the gut is restored to equilibrium and good health to either augment your protocol and to guard against relapse. I am referring to general good gut flora health here and not a specific bad bacteria or parasite which would need to be addressed and then good gut health maintained.

    As I believe, the conditions setting you up for CFS are likely to be occurring for quite some time until the "straw and camels back" incident (refer above). The PWC has been running on empty for so long (which the body is able to do) that it takes a specific protocol ie methylation or other to restore the deficiencies to equilibrium. That is, mega dosing (for want of another term) is required to restore the deficiency. I agree, a good diet would unlikely be sufficient to bring one to recovery or result in even significant improvement but should be part of the recovery program as the protocol addresses the symptoms only. Symptom relief being paramount ofcourse!


    Did you mean Borody? I am curios to know where you found that info.[/QUOTE]

    Yes. My typo. I found that from your link at post #162 - video 3 or 4 of the series of 9 (it was a struggle to get through. The interviewer was not very good - not dynamic in his responses which were straight from his sheet of paper no matter what Borody said and the sound wasnt loud enough, but worth struggling through as it was interesting)
  3. redo

    redo Senior Member

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    When you quote, you use this symbol "/" to mark the end of a quote.

    So a quote goes like this:

    [Q0UTE] What the person said [/Q0UTE]

    I justed a zero so that it wouldn't turn up as code.

    Yes, I said they would do the same purpose, but I wasn't suggesting it, because I doubt it'll be effective. But if you're saying it would be harmful to push the pH in a more alkaline direction, than that's another reason.
  4. Rockt

    Rockt Senior Member

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    If the problems start in the gut, then you need to ensure that the gut is restored to equilibrium and good health to either augment your protocol and to guard against relapse.

    Are we sure the gut can be restored to equilibrium? As stated previously, I've tried just about everything, for a long period of time, and mine is definitely not restored. And there are many who suffer IBS, Chrons and colitis, UC, etc. who do all the right things and still have their conditions. Maybe once it is severely out of whack, the gut can't recover. Maybe, (especially if we're going on the theory that gut issues are at the root of our CFS woes), that's why remission is so elusive.
  5. topaz

    topaz Senior Member

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    I do not know whether the gut can be restored to equilibrium in all cases, but I hope and anticipate that it can. However, I believe that the gut can be restored in the majority of cases. For the others its a case of more diagnosis and treatment.....

    For my part, I have had IBS for over 12 years and have kept the bulk of symptoms under control by diet. I am very disappointed with the information and treatment for this condition provided to me by my GP and general information. I should have started looking into thsi much earlier and for this, I have regrets. I believe that the IBS ultimately led to CFS (as one in a series of factors). CFS resulted in me recently looking at this area recently and I am about to embark on a self healing programme soon but first want baseline results for my stool analysis before I commence.

    I feel for you Rockt as it appears you have tried so much without the success you were hoping for.

    I think once its seriously out of whack, then you need an equally serious form of attack. i can only speak from personal experience and await the results of my test but my new integrative medicine doctor believes that what can happen is that by altering the diet, a parasite or bad bacteria may lie dormant and then respond to the slightest dietary lapse that enables it to feed (this is a hypothesis he is exploring in my case and this ofcourse may not be similar to your case).

    In your case it has to be something (or is this my own determination speaking?). Do you have IBS or other?? The problem with treating IBS is that it can be caused by either- parasites (there are a few examples cited on this forum about stool analysis returning negative results for parasites only for the patient to see them with their own eyes (Freddd is one example)); a bad bacteria such as Klebsiella (which is a possibility in my case); food allergy; or yeast/candida. The problem here is that if you are lucky, its only one of the four causes but in many cases, 2, 3 or even 4 of these causes are all present in the same person and often people seldom look at more than one.

    You say "there are many who suffer IBS, Chrons and colitis, UC, etc. who do all the right things and still have their conditions", but are they doing the "right thing"? (this is a rhetorical question btw) There are so many "right" protocols and the devil is often in the detail, getting a good diagnosis to start with. It doesn't help that this area has been neglected for 100 lost years and that we are only now starting to look at it seriously.

    I agree with you final point about remission and its elusiveness.

    As Richvank said "Sometimes I think the Devil himself devised CFS, because there are so many exquisite combinations of problems that interact with each other to increase the misery. This is a case in point: Glutathione depletion cuts down stomach acid production. This allows yeasts and bacteria that come in with the food to survive to reach the gut. Other CFS-related problems do other things to the gut, including slowing its motility. This gives the yeasts and unfriendly bacteria lots of access to the food coming in. They burn the sugars. Meanwhile, because of the HPA axis dysfunction, which I suspect is caused by glutathione depletion in the hypothalamus and pituitary, the sugar level in the blood goes down. This gives the person a craving for sugar. If they consume sugar, it feeds the yeasts and bacteria. If they don't, they can't relieve the hypoglycemia, and their brain doesn't function very well, because glucose is normally the main food for the brain. See what I mean about the Devil? :)-)"
  6. Rockt

    Rockt Senior Member

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    See what I mean about the Devil? :)-)"

    YES! So frustrating.

    Thanks for this Topaz. I have 2 questions for you, and/or anyone else who might have insight:

    1. Do we know if coffee, (caffeinated) and D-ribose will interfere with our gut rehab measures? (I ask because in another post I read that Dr. Myhill recommends this combo. as a help for energy production).

    2. Do we know if Beatain HCL is OK or not. I thought Rich Van K said that PWC's have low stomach acid, but that BHCL can interfere with... something, (please don't hold me to this poor paraphrase - I'm going by (poor) memory.
  7. topaz

    topaz Senior Member

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    Hi Rockt

    I am not able to provide definitive answers but will share what I know and let others step in.

    Caffeine and D-ribose

    I am not very familiar with Myhill's protocols as Ive only looked at her site a couple of times but like her approach. I searched her site and was unable to find the reference to taking caffeine and D-ribose together so could you post a link?

    On caffeine, the references I found on Myhill's site generally guide away from coffee (from no caffeine on the Reduced Carbohydrate Diet to no more than 3 cups for brain fog). She is a supporter of D-ribose (http://www.drmyhill.co.uk/wiki/D-ribose ) but provides these two problems:

    "Two problems I sometimes see:

    1. The fermenting gut. If there are bacteria or yeast in the upper gut then D-ribose may be fermented to produce alcohol and gas. In this event I suggest reducing the daily dose to 5 grams, holding it in the mouth as long as possible - some will be absorbed here. Space doses throughout the day.
    2. Corn sensitivity. D-ribose is derived from corn and some CFSs who are corn sensitive will react allergically to it. I do not know of a corn free preparation of D-ribose. "

    Caffeine is not allowed on anti-candida diets and advised against for people suffering from adrenal fatigue, which affects a number of PWC's. It also has a detrimental impact on insulin, At first blush, I would advise against it and am about to kick the habit myself! General "consensus" is that caffeine damages beneficial gut flora but in the interest of full disclosure I found one (and the only one) article that said the oppostite! (http://www.naturecity.com/blog/?p=275 ). Personally, subject to reading what Myhill says about combining the two, I would eliminate caffeine. PWC are fragile and we need to protect our bio-environment as much as possible as our bodies are already overburdened.

    the issue of D-ribose and candida was raised on several sites and it appears that it is not a problem for candida sufferers (many of whom blame candida for their CFS).

    The energy yield comes from two and three carbon compounds created when ribose is fermented by intestinal bacteria (the gut again).

    Several sources that I came across recommended a product called Corvalen M which contains D-ribose, magnesium and malic acid. Supporters say they get better results than D-ribose on its own. As i take magnesium in any event (do you?) I would stick with just the D-ribose but if you dont then consider this product. Myhill recommends magnesium as a cofactor. Just make certain that your magnesium is not in the oxide form which is the least bioavailable.

    HEre is the link to Richvank's post that you referred to (I had it bookmarked thankfully!) at #14 http://forums.phoenixrising.me/showthread.php?9723-The-3-P’s-–-A-Closer-Look-at-the-Middle-One/page2


    HCL

    I dont know much about this either but my general understanding is that it does assist gut function, indirectly via improving stomach function. I really have not come across any disagreement.

    First read this (http://me-cfsmethylation.com/viewtopic.php?f=1&t=104&start=0 ) to do the low stomach test. the same test is also mentioned here http://bb-cfs.blogspot.com/2010/07/hypochlorydia-low-stomach-acid.html

    To assist with low stomach acid, you are apparently not supposed to drink fluids with meals (to avoid dilution of stomach acids), chew thoroughly to assist digestionn, avoid snacks between meals and dont eat when stresssed.

    glutathione (l-glutamate) is supposed to assist with low stomach acid but on the methylation protocols it is not recommended as removing the methylation block will enable glutathione levels to restore to normal levels. this you already know.

    I understand that HCl capsules should taken in increasing doses with meals until symptoms of excess acid occur ( which is a burning sensation in the stomach). HCL should be taken one hour before taking a probiotic to assist the functioning of the probiotic and taken 30 to 45 minutes after a main meal. Dont take more than 500mg/day to start with and build up to around 500mg/meal (or up to 3000mg day - per Mark Hyman). Also HCL should not be taken by individuals with peptic ulcers.

    Unpasturised sauerkraut is beneficial for increasing both stomach acid and good gut flora. Apple cider vinegar is recommended on anti-candida diets so it may do the same thing.

    that's about it.

    As an aside, in researching candida, there are so many sufferers who I believe really have CFS but do not realise it, attributing all their symptoms to candida - which may very well be valid btw but the population of PWC is definitely larger than present estimates, whatever they may be.

    Did you mention what type of gut problems you think you may have?
  8. ukme

    ukme Senior Member

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    So true....
  9. Rockt

    Rockt Senior Member

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    Thanks Toapz.

    So, we think Betaine HCL is OK? I've personally had some success with it - much better digestion when I take 3 caps. a half hour or so after dinner, (when Digestive problems show themselves - OK after breakfast and lunch).

    I thought as much about coffee and haven't had any for about 1.5 years, but then I read that post claiming Dr. Myhill recommending it with D-ribose, wish I could find it), but your info. would seem to contradict this. In any case, I'll continue to stay away from coffee for now.

    I've not been able to tolerate magnesium yet, but I'm going to try small amounts of mag. glycinate(sp?) which is rumoured to be easier to tolerate.
  10. Rockt

    Rockt Senior Member

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    Found the Myhill quote:

    'And now for a bit of good news! You will have read (and will read again) that AMP cannot be recycled. Actually, AMP can be recycled, but it happens very slowly. For practical purposes for patients who are very fatigued, this recycling is so slow that it is clinically insignificant. Interestingly, the enzyme which facilitates this recycling ("cyclic AMP") is activated by caffeine! So the perfect pick-me-up for CFS sufferers could be a real black organic coffee with a teaspoon of D-ribose! Not too much or one can run into calcium problems.'

    I have not heard the above assertion regarding the ability to recycle AMP in very limited quantities, however am keen to find further sources that arrive at the same conclusion. However, it should be noted that the amount of additional ATP that can be recovered or recycled by consuming caffeine is relatively small, and one may wish to offset this against the negative effects of caffeine and/or coffee consumption (i.e. acidic pH, toxicity, diuretic qualities.)
  11. topaz

    topaz Senior Member

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    Shame that you have difficulty tolerating mg. Try the glycinate. I personally like a mg power product that I tend to mix with my Vit C powder.

    Epsom Salt baths (magnesium sulfate) really do work via transdermal absorption. Use about a cup in a bath and soak for at least 15 mins. dont use soap as this can interfere with the absorption. Studies have verified that transdermal absorption of mg works. Mg oil is available for transdermal absorption also. I have not tried personally but would consider it.

    ps: In looking for something else, I found this Richvank reference to HCL: #12 http://forums.phoenixrising.me/showthread.php?12827-Fibromyalgia-and-treatments&p=193496#post193496
  12. topaz

    topaz Senior Member

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    I found this excellent link to her book. Im glad that your question resulted in finding it! SEarching for caffeine, I found that she advises against it except for the above where she says that it *may* help *if* you can tolerate caffeine. She also suggests green tea as a source of caffeine. http://www.drmyhill.co.uk/cfs_book.pdf

    Interestingly, reference in the link to the transdermal mg absorption study and she does recommend taking D-ribose in small doses throughout the day.
  13. Rockt

    Rockt Senior Member

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    Thanks again Topaz.

    Myhill's book looks interesting, but I could never get through it, (barely got through the table of contents). From reading her theories before, though, they all seem to make a lot of sense, but... are people getting markedly better from her treatment? Is she THE CFS doc? Not criticising Dr. Myhill, I just wonder if her advice actually works. Dr. Cheney has always had great theories and like Dr. Myhill, works tirelessly for us, but he doesn't exactly have a great success rate. Sorry, I'm ranting a bit, but it's frsutrating to see answers that might not fit the questions.

    Worried about trying D-ribose again. Used it 2 years ago and had a nice boost in energy for about a month, but like everything else that has ever helped, (and that list is very short), it stopped working. Plus, I've had such trouble with yeast and dysbiosis that I hate the idea of ingesting a sugar.
  14. redo

    redo Senior Member

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    Lately I've been thinking this is the way the dots are connected: A retrovirus, perhaps in the MLV class gives some symptoms on it's own, but it's main effect is making the body unable to control the gut bacteria as it should. The result is a higher rate of intestinal perforation. There is always some degree of intestinal perforation (the body absorbs food, and some bugs and toxins come along), but the XMRV makes this function a lot worse. Perhaps because it gets the protective bacteria (protective of the digestive tract, such as bifidobacterium and others) down to way too low levels, perhaps it other mechanisms.

    If the virus is not treated, I am guessing our best bet is trying to restore the gut bacteria the best we could (HPI, perhaps also high dose probiotics can have some positive effects). Tests could be ones such as the CDSA for finding out if there's sufficient helpfull bacteria, and than other tests to detect the harmfull bacteria (although i suspect these are insufficient yet).

    Antibiotics can be used to control many of the harmfull bacteria, but they don't work for all. And they don't eradicate, but they do put a dampen on them.

    I am thinking other effects are secondary to this. Way too high cytokine levels are a result of this. Problems with methylation is a result of this. Low blood flow in the brain is a result of this. Etc. etc. Pretty much all are secondary effects of the MLV+ gut dysbiosis coming from the MLV. With MLV being the enabler, and the gut dysbiosis giving most of the symptoms.
  15. drewmaster

    drewmaster

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    YES!! This is exactly what I think is going on too.

    Drew
  16. lch1

    lch1

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    Could be microbes in the liver, not the "gut". That can be cleared, but it takes time and special attention.
  17. redo

    redo Senior Member

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    I forgot to specify, the good gut bacteria does not only serve as a protective layer (stopping intestinal permeability) but they also have a function as natural powerful antibiotics. When we get just a little of the wrong bacteria in ourselves the good gut bacteria can handle that perfectly well. But when they're not there, we can get much more severe gut problems.

    @Ich1. Yes, that wouldn't surprise me. E.g. bacteria which translocates from the gut and enters the liver. Gut bacteria can also be cleared, the only problem is that if the reason why there's problems there is a virus making the body unable to get the right bacteria flora there, you'd have a very fragile system even if you manage to get it under control...
  18. drewmaster

    drewmaster

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    Redo, do you think its necessarily a retrovirus? Might it instead be an enterovirus, like Dr Chia is investigating?

    Drew
  19. leela

    leela Slow But Hopeful

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    Redo,

    I admit to not having read every post of this long thread, but have you researched biofilms? This is a complicating factor, and these
    intelligent networks of bacteria, fungi, metals and other substances need s special multi-pronged approach of their own, which can include EDTA to break them up, enzymes like nattokinase and lumbrokinase, and some kind of antibacterial agent be it herbal or otherwise.
    Forgive me if you already are aware of this, but I thought I'd bring it up, since biofilms can block other treatments from working.
  20. redo

    redo Senior Member

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    drewmaster. It might very well be. The reason I am leaning much towards it being a retrovirus is by part the massive reaction several people have got to the ARVs (getting worse included). But all options are open at this point. This is just a theory.

    leela. Yes, I have some basic knowledge of the concept, and I do think it's relevant not only for this, but more than we think right now for the persistence of other diseases as well. I am not sure which role they play with gut microbes though. Perhaps supplying our gut with new bacteria once the microbes which are "out in the open" are fought. If so, that's yet another reason why HPI might be effective, because the new flora will than act as a potent natural antibiotic which are there all the time.

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