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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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. topaz

    topaz Senior Member

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    Redo, Im very glad that you posted this as I have started research into gut bacteria. As you stated, there is a very strong correlation between CFS/Fibromyalgia and abnormally high levels of bad gut bacteria. Proper levels of good gut bacteria are essential to proper bodily functioning, including but not limited to the key areas of vitamin and mineral conversion and absorption -especially those relating to neurological function (common problem amongst PWC's).

    AB's are known to disrupt gut bacteria balances, in favour of the bad and as many PWC's have no doubt been prescribed these, many are likely to be affected. NSAID's adn acidity regulators such as Mylanta and Nexium also detrimentally impact gut bacteria.

    I am coming to believe in the "gut-brain axis" as it is often called. The gut is called the second brain for good reason. Many of the vitamins required for proper neurological functioning are processed and absorbed in the gut.

    I believe taking probiotics (in pearl form) can only assist any other protocols that a PWC may be on. For example, restoring the gut may remedy in the "break" that causes methylation problems (genetics aside ofcourse). Ditto for other protocols.

    I personally do not think that it is the "sort of bacteria mix in their SIBO which would cause CFS symptoms" but the "interference" in normal bodily processes which SIBO disrupts that in turn, eventually, causes CFS symptoms.

    When you start to look into this, there is so much information that it cannot be ignored and in my opinion needs to be addressed as a support to other protocols also.

    The number of bacteria in our bodies outnumber body cells 10:1 - essentially we are hosts for bacteria! These bacteria evolved over many millions of years with us and as evolution takes 100's of thousands of years to result in even a small change, the changes to our basic diet over the last 40-50 years are so great that our bodies are not designed to cope and cannot adapt in such a small time frame. I personally believe that diet is one of the reasons why so many are ill with "garbage bin" diagnoses such as CFS - by garbage bin, I mean that the causes and cures are not known and similar symptoms are dumped in as one syndrome or anotehr.

    Unfortunately, curing the gut will not happen overnight. It can take 3 months - 2 years and must be assisted by eliminating foods that encourage the population of bad bacteria in the gut.

    I think by and large my diet is appropriate (no carbs other than vegetables and no sugars other than occasional fruit) but I will start by supplementing with homemade kefir which is very high in probiotics and much higher than yoghurt. I plan to build on from there.

    Interesting thread and I look forward to others view.

    I have some links that I can share but will need to post later as I must log off now.
  2. redo

    redo Senior Member

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    Great topaz! Is this paid research or pro bono? I am just curious. I have been involved in some pro bono myself a couple of years back.

    I do believe that antibiotics can be a double edged sword. Some may cause c.diff., some may alleviate c.diff., some may contribute to CFS, some may alleviate CFS. That's my own personal experience. I got better with many different antibiotics, and worse with various tetracyclines.

    Agree. As the person with methylation problems didn't have them earlier when they felt healthy, and got them after they got CFS (which in many cases are set off by EBV, vaccines, flu, surgery, food poisoning, you name it), it's reasonable to assume that it can't all be genetics.

    Please do elaborate. What I mean by that I think it's the sort of bacteria mix in their SIBO which would cause CFS symptoms, is that if we get those bacteria cleared out, the CFS would (hopefully) vanish. But, I do believe it's a domino chain (just like it is with almost all pathogens), that the pathogen disrupts X (which could be methylation, (in most cases) the immune system, the liver, digestion and so forth), and that's what causes the symptoms. Just like it's not dangerous to fall, it's dangerous to land.

    Please do come with your own put in on this. It's only nice to have someone disagree with me. Get a new perspective on things is always valuable.

    That sounds very plausible. And I totally agree about the garbage bin diagnoses.

    Well. Here's how I look at it. If we take a look at the garbage bin diagnoses: CFS, MS (also unknown cause), Parkinson (unknown cause), RA (unknown cause) and Crohn's (unknown cause), I do believe that chances are, they may come from pathogenic gut bacteria.

    Take a look at CFS. Many people report getting worse after eating something they react to. And many react negatively to high doses of refined carbohydrates.

    And here's a quote about a procedure called HPI (replacing the gut bacteria) used on various patient groups:
    "Over the past decade, Borody has noticed that some of his patients also see improvements in symptoms of their other diseases, including Parkinson's, multiple sclerosis (MS), chronic fatigue syndrome (CFS) and rheumatoid arthritis. "Some CFS patients, given a faecal transplant, will regain their energy quite dramatically, and their foggy brains will get better,"

    Here's a interview about HPI on Crohn's. How it works in many cases, and how the consensus is slowly shifting towards the pathogenic gut bacteria cause.

    I think that what we are looking at is in some ways a main pathogen, and various side pathogens. The main pathogen is something practically all CFS patients have. And the side pathogens are ones which contribute to the vast differentiation in the symptom profiles of CFS patients. I also believe that they act somewhat like hard to treat c.diff., in the way that (some) antibiotics may alleviate symptoms for a while, but the relapse most often come shortly after the antibiotic treatment has ended.

    That's my thoughts on this.
  3. Rockt

    Rockt Senior Member

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    Apologies, I've come upon this late and could only skim it. However, I can't believe the gut doesn't have huge implications in ours and others illnesses. I have complete dysbiosis, confirmed, and who knows what other gut issues. So is there any concensus on what might be the answer, or at least, what might help?

    Personally, I've had some success with B12 - I'm digesting much better. Betaine HCL helps too, but then I read that it can interfere with something, (always a "but"). And the low carb, higher fat/protein diet helps.

    I've had no success with VSL#3, or any other probiotics. I've heard that any probiotics taken orally are killed by stomach acid - who knows, all I know is they haven't helped - and I took them for at least 2 years. Have seen the Youtube video that proclaims probiotic enemas to be the answer.

    Has anyone had experience with this product:

    http://www.naturalprobiotics.com/Prduct Info/spectra_info_main.html

    or capsules:

    http://www.naturalprobiotics.com/

    I took it for awhile, but it seemed to make me feel a little worse, (die-off?), plus I thought, (perhaps wrongly), that it didn't jibe with the low carb diet, so I disconinued it. Now I'm wondering if it might be worth revisiting.

    Would love to hear input.

    Thanks.
  4. redo

    redo Senior Member

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    You can take a proton pump inhibitor, and you wouldn't get any problems with stomach acid killing the probiotics. But it's not so very effective despite that (in most people). You'd gave to get the whole flora for it to be really effective. And you'd get that from the content of another human's intestinal tract (yes, feces). If it would work is a whole other question. It does work against c.diff.

    I don't have any experience with The product you linked to. But if you decide to try it again, then please do write a report on how it goes.

    Speaking of B-vitamins. Have you tried this?
    http://www.iherb.com/Twinlab-Niacin-B-3-Caps-1000-mg-100-Capsules/4344?at=0
    It's really cheap (whereever it's bought) and it has a good effect on some. I know three people taking it. It can be bought at any local supplement store, but I think the key is high dose (500 mg and up).
  5. Rockt

    Rockt Senior Member

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    Tried Niacin quite a bit. I actually like the flush you get and at first I assumed that it might get some blood flow to my beleaugered brain. But it doesn't actually do anything for me long term.

    Has this fecal transplant idea actually been used and studied. Effectiveness? What about the probiotic enema?
  6. redo

    redo Senior Member

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  7. Rockt

    Rockt Senior Member

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    This is interesting. I live in Ontario, Canada and we are currently experiencing some problems with C.dif. in some area hospitals. There are several doctors saying that fecal transplantation is 90-100% effective in treating c.dif.

    Have there been any reports, anecdotal or otherwise, from CFS patients who have tried this?
  8. redo

    redo Senior Member

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    Follow the link and you'll be taken to a link to an article in NewScienist where PWCs are among those mentioned.

    I've been thinking lately; simple logic:
    For thousands of years, people have been eating much the same. Then came the industrial revolution, we got cola, candy, and all other sugar food - and than the teeth decayed. There were bacteria there which now acted differently, and became pathological.

    Why wouldn't we have the same thing in the intestines?

    There are sooo much more IBS, CFS, MS and whatnot now than for 100 years ago.

    And I really think diabetes type 2 is also some bacteria. When they change the bacteria in the gut, the insulin resistance (the major symptom of diabetes type 2) dropped drastically.

    The only thing is, I think we normally need something to set the CFS off. Perhaps a viral infection, perhaps something else. And the body will be unable to hold back those pathological gut bacteria. Much the same as with the teeth, only for teeth problems, we doesn't need an immunological trigger...
  9. topaz

    topaz Senior Member

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    Apologies - Ive botched the quotes in this reply (CFS brain fog??). I hope you can follow. I apologise for not being able to elaborate further with references but I am very pressed for time - again, apologies.

  10. Enid

    Enid Senior Member

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    Thank you all for this interesting thread - (I've had bowel/IBS problems for years, periodic jaundice like or periodic hepatitis like too and unable to get any antibiotics from my GP). Just recently my Dentist insisted on the removal of 4 roots left behind after crumbling teeth and falling crowns. I was put onto high dose Amoxcillin for a week as some infection was seen in XRays (use of masses of probiotics after). The net result was not only an oral improvement but the bowel problems too. Sorry to be explicit but stools colour corrected, no gas etc. It does seem as if some bad gut bacteria have been eliminated.
  11. topaz

    topaz Senior Member

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    Not just sugars but carbs also. These really can play havoc with the gut flora balance.

    We evolved over millions of years together with these bacteria. The bacteria in our bodies outnumber body cells 10:1 - some say even higher. Until recently, these have been too ignored (read since turn of 20th century) with focus in medical school on pharmacology and not biochemistry. The tide is slowly turning. Our bodies are not designed to cope with chemicals in processed food and our environment in the quantities that they are subjected to today. We evolved in what is known as today as an "organic" environment and it takes many thousands of years for the smallest evolutionary change to occur. Soil no longer provides us with essential minerals for healthy plant life.... I'll stop here as Ill sound like an evironmental fundamentalist which I wasnt and still am not but the deeper you dig into the causes and treatment of the symptoms that we are treating (whether it be methylation or other), you soon see that it is a tangled web. The butterfly effect. The impacts filter through, sometimes insidiously as in non-viral caused CFS, amongst others.

    Sometimes it is just a cumulative effect of not the best biological/physiological health (ie gradual deterioration, baby steps at a time.) that causes the onset of CFS and not just one trigger. This would be too simple and I believe the cause would have been found by now (maybe wishful thinking on my part). Organic or healthy eating will not provide the cure as mega dosing of vitamins is required (per methylation) or AB's to cure certain pathogens or other protocol - but once in remission, one needs to ensure that CFS does not return. PWC's clearly have a predisposition (genetic or biological) and this needs to be addressed, even when the wonderful day of remission arrives.
  12. topaz

    topaz Senior Member

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    Rockt, Redo suggest antacids with probiotics.

    I would strongly advise against taking antacids. These are known to destroy the good bacteria and are one of the causes (along with AB's) of causing gut flora imbalances.

    The problem with probiotics is that so much is unknown. It takes a good delivery system to ensure that they survive stomach acid (the same applies to vitamins, btw) which is perhaps why the enemas were developed.

    I am in the process of research into this area but have not been able to test on myself yet as I need to do a stool analysis to get a "base line".

    I referred to the "pearl" probiotics in an earlier post and these are supposed to be the best oral form. Having said that, I myself intend to embark on natural probioitics ie kefir, sauerkraut etc as these are traditional foods which humans have eaten for hundreds if not thousands of years (fermentation is an ancient food preparation).

    I would suggest getting a stool analysis if you havent already done so to eliminate virus, parasite and bad bacteria (c.diff included as well as many others) as well as other "gut function" parameters. At least then you would have a clearer way of tackling the problem if you can eliminate some possibilities. You never know, you may have candida or krebsiella??

    Its good that you're on a low-carb diet. I am too and this helps a lot but I am wondering if I should eliminate (unfermented) dairy to see if this is having an adverse impact on me.

    As per my post above, I wouldnt try the faecal transplant until you know what the problem is and not until other measures have been tried. I do believe it to be an effective measure however. Do you know if Dr. Kenny De Meirleir does this?
  13. Rockt

    Rockt Senior Member

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    I did a lot of reading on fecal transplant yesterday and I'm intrigued.

    I've been working on my gut off and on for a long time, but at least the last 21/2 steady, including kefir, sauerkraut, VSL#3 and Bio K, plus strict, disciplined low-carb eating, (no dairy), and the results have been less than stellar. Adding Betaine HCL helped more, but only since embarking on the B12/methyfolate regimen has my digestion been anywhere near normal - and I'm still a little gassy.

    I've done stool analysis. No parasites or viruses, but complete dysbiosis, (interestingly, it did not show candida, but several live blood analyses show yeast swimming about in my blood stream).

    So I'm thinking that if fecal transplantation can cure chronic c.dif. in 90%-100% of patients, after 1 enema, it might be worth a try. Pretty simple and low risk, why not?

    I don't think KDM does fecal transplants. I think he does ABX pulses + probiotics, which though he may be a very good CFS doc, I fear this will turn out to be a classic medical mistake, (where it goes OK for some, but bad for enough people, that the doc quietly discontinues the protocol and moves on to something else - more anitbiotics just doesn't seem like it can be a good idea).
  14. Rockt

    Rockt Senior Member

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    Just found this on Professor Thomas Borody's Probiotic Therapy Research Center website (http://probiotictherapy.com.au/pages/contact.html)

    Although transient passage of cultured probiotics can improve symptoms it should be noted that oral probiotics commercially available are incapable of implanting permanently into the gut flora as they have lost their capability to adhere to epithelial cells through the process of culturing in the commercial laboratory. It is only fresh human probiotics from another human being that retain that capability and hence can be implanted to reverse damage and side effects and then stay in the bowel to protect in the future.

    And in case you're interested, it's not easy or cheap:

    Overseas Patients

    We are a small private facility in Sydney with limited resources and as such we do not have the resources to engage in continued email exchanges with overseas patients suggesting treatment options.

    Unless you are willing to travel to Australia and undergo Human Probiotic Infusion (HPI) treatment in our facility, which would involve a stay in Australia of 5 weeks at your own expense we are unable to treat you.

    The 5 weeks will involve our diagnostics, 10 days antibiotic preparation and 10 working days of daily infusions. The cost for this treatment is approximately AUD$12,000 - $15,000 in total not including accommodation and living expenses. We do not provide accommodation nor do we provide any nursing assistance in the accommodation you have arranged so it is recommended that someone comes with you for the duration of your treatment.

    Should you wish to proceed with HPI treatment at our facility a telephone consultation is arranged. This consultation will be with our Nurse Practitioner and will cost $200. Following that consultation a $3,000 non-refundable deposit will be requested prior to any further communication (telephone or email contact) before proceeding with all other necessary arrangements.

    The balance of the payments will be payable on arrival to the clinic when each individuals needs have been determined.

    If you have a diagnosis of Clostridium difficile which is toxin positive you can be treated at our facility. However if you are contacting us concerning HPI treatment for Colitis, IBS, Constipation or Neurological conditions such as Multiple Sclerosis (MS) or Parkinsons Disease we will consider each person on their merit. A prerequisite will be that you have a consenting Physician who will be looking after you and a donor available in your country to continue with home infusions, as in these conditions the infusions may have to be repeated and prolonged.

    Once you have decided to proceed, your Physician has consented to monitor your progress and you have a donor an initial consultation can be booked with a Gastroenterologist at $300. We will then need to take payment of $500 upfront for the work required to respond to subsequent emails ($50 per email) during your treatment. If you require more than 10 email responses you will need to purchase another block.

    An overseas patient, not domicile in Australia is not eligible for admission into our research trials.

  15. topaz

    topaz Senior Member

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    Rockt

    You seem to be doing everything right. You've taken/taking a good mix of probiotics and had the stool analysis. I assume you've tried prebiotics too so the probiotics have a food source. I would think that in any event the saurerkraut and kefir on their own would assist greatly here. I assume its home made sauerkraut. Did/do you consume the sauerkraut/kefir daily?

    Could the doctors that undertook the faecal transplants in Canada be an option?

    When was the last stool analysis? Maybe its time for another? There is always a slim chance of contamination or non detection. On the face of it, it appears that general gut flora imbalance may not be a factor here as you appear to be on a good probiotic regimen but you may have a parasite, virus, MAP (except you dont have Crohn's) that needs to be addressed??

    No answers here, only more questions which doesnt help you directly.

    Just as the field of autism assists CFS treatments, maybe when addressing the gut, treatments in areas such as Crohn's need to be investigated further to determine their application to PWC's. I have attached a couple of links that I came across today. The other issue is that seldom do improvements in the gut happen in what we would consider an acceptable time frame (lol!). Even Brody lamented that one study that he referred to should have been conducted over 26 weeks and not the actual shorter time frame.

    http://www.crohns.net/Miva/education/articles/Probiotics_in_the_Treatment_of_Crohns_Disease.shtml
    http://www.crohns.net/Miva/education/articles/Microbial_Factors.shtml
    http://www.crohns.net/Miva/education/articles/Fatty_Acids_for_the_Treatment_of_Crohns_Disease.shtml
    http://www.crohns.net/Miva/education/articles/N_acetyl_Glucosamine.shtml


    Continue to share your thoughts.
  16. redo

    redo Senior Member

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    I didn't say it was just c.diff., c.diff. is an example of a pathogen which antibiotics may promote, or may fight. When we know it is that way with c.diff., it's reasonable to think that it is that way with many other gut pathogens was well. Hence the comment about the double edged sword [something which may cut your enemy, but may also cut yourself as well].

    But what's causing the methylation problems? I am guessing gut problems.

    I agree.

    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.

    Rockt, please give a link to the text you quoted above.

    Did you mean Borody? I am curios to know where you found that info.
  17. redo

    redo Senior Member

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    Here's another fascinating study.
    http://www.ncbi.nlm.nih.gov/pubmed/18401670

    They cut out parts of the small intestines (Roux-en-Y gastric bypass) and the FMS patients recovered. It doesn't say anything about how early the recovery came, and if it came before the weight loss in some of the patients. If it did, than we're really onto something.
  18. Rockt

    Rockt Senior Member

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  19. Rockt

    Rockt Senior Member

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    Thanks Topaz.

    I've emailed a bunch of the Canadian doctors. Got one reply so far, (which is one more than I expected. Me, cynical?), fairly hostile - again, about what I expected.

    Yeah, I think I've done all or most of the things right, but maybe they're just not working. Maybe taking probiotics orally doesn't work, as Borody alludes to.
  20. redo

    redo Senior Member

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    That's just typical. It's so hard to find a duck who acts like a normal decent person.

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