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ME/CFS and the Magic of the Canine Factor
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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. redo

    redo Senior Member

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    Gut flora linked to late onset autism and personality. Fascinating:
    www.theepochtimes.com/n2/science/gut-bacteria-may-influence-our-personalities-study-56415.html

    I've got a pretty strong shift in personality together with joint pain, vision problems and hair falling off when I relapsed because of a anti viral treatment. I really think gut changes are the only likely explenation. I also got OCD like symptoms coming from "nowhere".

    And just to clarify; I've never had, or even have had tendencies to have, psychiatric problems. But I got a OCD like symptoms out of nowhere as part of a symptoms package when I relapsed. Which bacteria dominate the gut will turn on and off genes. I am pretty much a blue print of my dad, but when I relapsed I got a personality shift which matched my mothers side very much. It's the strangestt thing, I know.
  2. redo

    redo Senior Member

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    I really think much OCD is caused by harmfull gut bacteria.
    www.ncbi.nlm.nih.gov/pubmed/16400252
    I don't meet the criteria for neither (IBS or OCD), but I've got some OCD like symptoms (as part of a relapse symptoms flare).
  3. Glynis Steele

    Glynis Steele Senior Member

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    Hi Redo,

    Not sure if this has been mentioned here, but in autism, there is a condition called PANDAS which is caused by a strep overgrowth, and causes OCD behaviours. I saw a programme a few years ago, where it was talked about at Great Ormond Street Hospital, but believe it is not a well known condition.

    Glynis x
  4. redo

    redo Senior Member

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    Fascinating. It may be that what turns out to be the common nominator is that the gut immune system is out of control (perhaps because of XMRV, perhaps something else), and what makes us get CFS, RA or perhaps even OCD is just which gut bacteria which overgrows when the body is unable to adjust the gut properly. Just some loose thoughts.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Dan,

    Hope you don't mind, I moved my reply (from http://forums.phoenixrising.me/show...ed-as-of-Today&p=181380&viewfull=1#post181380) over to this thread as it is relevant here.

    I can only comment on treating Prevotella with ABX from what my doctor is doing! He obviously thinks it is a good idea and is giving me one ABX (that is specifically for anaerobic infections) for 8 days on month one, followed by VSL-3 the rest of the month; a second ABX (again for anaerobic infections) on the same schedule the second month; and the 1st ABX again for the third month.

    I don't know the answer about hiding in biofilms but perhaps someone else here does.

    Parasites....hmmm! I've had to treat them in the past but seems like you doc should have explained "taxonomy unavailable."

    What do you do next? That is the big question...and how to find a doc you trust!

    Best wishes,
    Sushi
  6. lizw118

    lizw118 Senior Member

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    Hi Sushi
    Prevotella came out kind of high in my metametrix G.I. profile. What are the ABX that treat prevotella? Have you started them yet?
    Liz
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Liz,

    I'll reply by PM as the ABX take into consideration my whole health picture and might be different for other.

    Sushi
  8. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hi all,

    Has anyone who has ever had a Colonoscopy, where you have to take all those laxatives to essentially completely clean out your colon, experienced relief from their GI symptoms for a periods of time?

    Years ago I had one and I felt so "Clean" for about a week afterwards- literally no GI symptoms. This was, however, before my full blown viral induced ME/CFS.

    I am too ill to go for colonics. I don't know if there is anything one could take at home to literally
    "clean house" down there LOL. Most of the colon cleanse products are harsh and just cause diarrhea. Which would be especially bad if you are in a flare, kinda hard to run to the john :)

    I think it is very possibly that I do have an overgrowth of bad bacteria in my gut.

    However, EVERY probiotic I have ever taken has made me worse. They have all caused severe gas/bloating. And it doesn't go away with continued use.

    Years ago I also took Xifaxan but it did not help as far as I remember.

    Of course if some have an enterovirus, could that alone disrupt the good/bad gut microflora? I also wonder if the bad reaction to probiotics could be due to enteroviral infection.

    P.S. Could taking high doses of digestive enzymes with meals help? I already take them but sometimes I feel like I could use 3-4x the amount to get rid of that feeling of food just sitting in my gut.

    Also what about consuming plenty of soluble and insoluble fiber? For example, Oat bran (dirt cheap, and yummy!) is a high source of these fibers.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Moon,

    Here's the thing--you don't really know what is going on down there and what you need to clear it up until you get some good digestive tests--and not the kind your local Gastroenterologist is going to do!

    Trying different things that have worked for others, could, in fact make your condition worse--cause without knowing what it is--you are shooting blind!

    I was very surprised at the stuff found in my gut and can see why the wrong "good" treatment would make it worse.

    My suggestion is to get some very good stool/digestive and food sensitivity testing done and then you and your doc (supposing you have one!) work out a program to deal with it. This is harder than trying various things that might work, but probably more effective long run. A lot of insurances will even pay for these tests.

    Here's to good digestion! :thumbsup:

    Sushi
  10. acer2000

    acer2000 Senior Member

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    Just curious, what have your doctors been telling you about "parasite present, taxonomy unavailable"? My doctor didn't seem to know what to make of it.

    I think I am pretty sensitive to VSL3. Its making me feel pretty anxious and jittery, kind of OCD... My doctor doesn't know what to make of that either, but google says some people can't tolerate the strep in it? In that case, what is a suitable alternative to re-populate my gut?
  11. maryb

    maryb iherb code TAK122

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    In general I couldn't tolerate probiotics before seeing KdM but after testing with him he advised specifically a lactobaccillus probiotic (I use Culturelle) and I've been absolutely fine with it, so I think the others are right you need to know which bacteria/s you are lacking and when supplemented you can tolerate them.
  12. acer2000

    acer2000 Senior Member

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    So how long did it take for the negative effects from VSL3 to wear off after you stopped it (for the people who couldn't tolerate it)? I have a call into my doctor, but I hope this doesn't last a long time.. its pretty uncomfortable.
  13. redo

    redo Senior Member

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    VSL#3 hasn't done me no good either. I just used it for some weeks, but I got worse (it might have been other reasons though, I wont rule that out).
  14. redo

    redo Senior Member

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    Thanks for posting. Looks interesting!
    http://en.wikipedia.org/wiki/PANDAS
  15. coolron33

    coolron33

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    I think basically what you say is true. But I think you can't get an imbalance unless something hits you, such as a virus. Does the virus hit and go and you are left with the imbalance? Don't know. Does the virus stay around so you can't get rid of the imbalance? Don't know. Does the imbalance and virus work hand in hand? Don't know. I'll tell you what, though, making outlandish statements about autism and parkinson doesn't help our cause any.
  16. redo

    redo Senior Member

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    I totally agree. We don't know.

    But much of what's written are speculations. I try to emphasise that. Sometimes I forget, but most of time I add a line or two about that.

    Autism is interesting to me because I've got many clearly autistic symptoms after I got ill. And adult onset autism interests me because of that. I like tossing ideas back and forth, but that said it should be noted that I, and most others, know that it's loose threads and not verified facts. If you disagree about the value of speculating, working out hypothesis, and - in my case - testing them. Then I don't think arguing about it would get us any further.
  17. Shellbell

    Shellbell Senior Member

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    Redo, I here what you are saying. I have some autistic qualities to my illness as well. I found a video about a woman who was classified as suffering from adult on-set autism from a vaccine in college. Hearing her story rang bells for me in many ways. Her gut and nervous system were heavily effected. It took her approximately 7 years to mostly recover. She still deals with some neurological damage, but she is now well enough and working as an elementary school teacher. As a teacher myself, that is hard, stressful work. So, she must be pretty good now.


    Interestingly enough, I have a friend who has CFS, brought on by an ADR to levaquin. She also has 2 children with autism. They all share many of the same qualities as if it is the same disease. Their DNA tests are similar in nature. They all have partial methylation blocks. Their treatments are individualized, but basically the same. They are fixing the gut, which is helping their nervous systems repair and doing fairly well now.

    My illness started with an adverse reaction to a cipro and I have never recovered. I am 4 years into my illness. In my case, the worse my gut feels and behaves, the worse my symptoms are. We are very similar! The only difference at this time is they are recovering, while I am still floundering. I was hit much harder than she was.

    BTW, in no way am I saying that CFS is the same as austism. I am just saying that it is very similar in presentation in many ways and treatments sometimes are very similar for recovery. So, I hope I am not offending anyone here by my post. It just goes to show you that CFS is so different in each individual.
  18. Richard Lee

    Richard Lee

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    My CFS-like symptoms began with gut-dysfunction. But they were not relieved by dietary changes or probiotics but by B12 therapy. There are more neurons in the gut than in the brain - see for example
    http://www.scientificamerican.com/article.cfm?id=gut-second-brain

    I think, at least in my case, that the problem in the gut was not microbes but neurotransmission. If the gut's getting the wrong instructions and giving the wrong feedback then it's little wonder that microbial colonies go feral.

    The link with antibiotics might just be that the gut is unable to restore normal flora afterwards due to a dysfunctional feedback mechanism.

    Regarding colonoscopy relieving some symptoms, I had the same experience, but that might be explained by less demand on the neurotransmitters.

    And Redo, your own issue with numbness rising from your feet suggests to me a common neurological origin.
  19. richvank

    richvank Senior Member

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    CFS and autism

    Hi, all.

    From the babiochemical perspective, CFS and the regression type of autism are pretty much the same. Here's something I wrote about this a few years ago, which was published in the Townsend Letter:

    February 21, 2006



    Autism and Chronic Fatigue Syndrome

    by
    Richard A. Van Konynenburg, Ph.D.
    (richvank@aol.com)


    I have been studying chronic fatigue syndrome as an independent researcher for nearly ten years. Over the course of several years, I developed a hypothesis for the pathogenesis of this disorder that prominently featured the depletion of glutathione, and I presented a poster paper on it at the AACFS (now the International Association for Chronic Fatigue Syndrome) meeting in October, 2004, in Madison, Wisconsin. This paper can be found at the following url:

    http://aboutmecfs.org.violet.arvixe.com/Rsrch/GluAACFS04.aspx

    Anecdotal experience of people in the CFSFMExperimental internet group (Yahoo Groups) who suffer from CFS and others who acted upon my hypothesis suggested that while some were able to raise their glutathione levels by various means and experienced benefit from doing so, others were not able to do so. At the time of writing my poster paper, I was aware of this, and I acknowledged in the conclusions of the paper that there appeared to be factors that were blocking the raising of glutathione in CFS. At that time, I was not sure specifically what they were. I also knew that there was evidence for a genetic predisposition in CFS, but I did not know the details of the genetic variations involved.

    Shortly after that, I became aware of the work of S. Jill James et al. in autism (American Journal of Clinical Nutrition 2004 Dec; 80(6):1611-7). They found that glutathione was also depleted in autistic children, that this was associated with a partial block in the methylation cycle (also called the methionine cycle), that this partial block was associated with genetic variations in the genes for certain enzymes and other proteins associated with the sulfur metabolism, and that it interfered with the synthesis of glutathione. They found that by using certain supplements (methylcobalamin, folinic acid and trimethylglycine) they could lift the block in the methylation cycle and restore the glutathione level.

    In response to learning of this work, I became very interested in possible parallels between chronic fatigue syndrome and autism. I went on to attend the conference of the Defeat Autism Now! project in Long Beach, California in October, 2005, sponsored by the Autism Research Institute, headed by Dr. Bernard Rimland. As a result of this experience, I became convinced that the genetic predisposition found in autism must be the same or similar to that in a major subset of chronic fatigue syndrome, and that the resulting biochemical abnormalities were also the same or similar. As far as I know, the genetic variations in people with chronic fatigue syndrome have not yet been studied in detail or published, but I am optimistic that this will occur soon, because of the rapid advances in the technology for doing so, and the current active interest of at least three groups in the U.S. and the U.K. in genomic aspects of CFS.

    There are obviously also major differences between chronic fatigue syndrome and autism. I believe that these result primarily from the different ages of onset. Autistic children experience onset early in life, before their brains are fully developed. I believe that this gives rise to the very different brain-related symptoms seen in autistic children from those seen in adults with CFS. However, there are many similarities in the biochemistry and symptoms of these two disorders as well, including oxidative stress, buildup of toxins, immune response shift to Th2, and gut problems, for examples.

    The triggering factors for autism and chronic fatigue syndrome are also largely different. Although this subject remains controversial, there appears to be substantial evidence that vaccinations (containing either a mercury-based preservative or live viruses, many given within a short period of time) were responsible for triggering many of the cases of autism in genetically-susceptible children (D. Geier and M.R. Geier, International Journal of Toxicology 2004 Nov-Dec; 23(6):369-76; and A.J. Wakefield, several publications beginning in 1997).
    In CFS, a variety of triggering factors (physical, chemical, biological, or psychological/emotional) have been found to be involved in various cases, as reviewed in my poster paper, cited above. All these factors have in common their demand on glutathione.

    It appears that genetically susceptible persons are unable to maintain normal glutathione levels, and once glutathione drops sufficiently in a genetically susceptible person, the sulfur metabolism becomes disrupted. In many cases the methylation cycle (part of the sulfur metabolism) becomes partially blocked, and the result can be a depletion of some or all of several important sulfur-containing metabolites, including S-adenosylmethionine (SAMe), cysteine, glutathione, taurine and sulfate. A vicious circle is thus formed, and the depletion in these metabolites causes an avalanche of pathogenesis, since they all have very important functions in the body. I think that much of this pathogenesis is common between autism and CFS. In autism, the loss of methylation capacity because of the drop in SAMe appears to be responsible for much of the interference with normal brain development.

    There is also a major difference in the sex ratio between autism and
    CFS. In the book mentioned below, Jon Pangborn discusses possible
    reasons why autism is more prevalent in boys. In my poster paper, cited
    above, I suggested an hypothesis to explain the female dominance in the
    prevalence of CFS in adults.

    I think that the reason why the people who have developed CFS as adults did not develop autism as children (even though I suspect that they have the same or a similar genetic predisposition) is that when they were children, not as many vaccinations were required. The schedule of vaccinations required for children in the U.S. has grown substantially over the past two or three decades, as has the incidence of autism. I think this is also true in the U.K.

    Shortly after attending the DAN! conference, I also learned of the work of Amy Yasko, also primarily in autism, but extending to a number of other disorders as well. Working independently of the DAN! project, Dr. Yasko develops her treatment recommendations by analyzing the specific gene variations in each patient. In addition to studying effects on the methylation cycle, Dr. Yasko has gone on to consider the effects on associated biochemistry, including folate metabolism, biopterin, the urea cycle and the synthesis of neurotransmitters.

    My main message is that a great deal has already been worked out in autism by the researchers and clinicians associated with the Defeat Autism Now! project, and also by Amy Yasko, and that I believe that the CFS community would benefit greatly by looking carefully at what they have already done. The doctors associated with the DAN! project treat autism by the use of nutritional supplements that compensate for genetic mutations in the sulfur metabolism. These include such supplements as magnesium sulfate, taurine, molybdenum, vitamin B6 and its active form P5P, magnesium, methylcobalamin, folinic acid, trimethylglycine, and dimethylglycine. They also use certain diets, and they perform chelation treatments to remove heavy metals. The results in many autistic children have been astounding.

    Dr. Yasko, in cooperation with Dr. Garry Gordon, uses many of the same supplements as are used by the DAN! project doctors as well as some additional ones, including RNA supplements, and she is also reporting great success.

    So I want to encourage everyone who has an interest in CFS to look at the results of the DAN! project and of Amy Yasko in autism.

    You can view videos of the talks given at the latest two DAN! conferences on the internet at no cost (unless you are paying for the internet time!). Go to this site:

    http://www.danwebcast.com

    You can choose either the later Long Beach conference or the earlier Boston conference. They cover much of the same material, but both are worthwhile to watch. If you want to see a good explanation of the methylation cycle research, go to the Boston meeting first, so you will be able to view the talk by Jill James, who did not attend the Long Beach meeting.

    After selecting one of the conferences, go to the lower left and register. This is free. They will email a password to you right away, and then you can choose a talk to watch.

    Beyond this, I also want to recommend a book entitled Autism: Effective Biomedical Treatments. This is a new book (Sept. 2005). It is by Jon Pangborn, Ph.D. and Sydney Baker, M.D., a biochemist and an autism clinician, respectively. It is available on Amazon for people within the U.S. For people outside the U.S., it can be obtained from the following website by means of PayPal:

    http://www.autismresearchinstitute.com

    The cost for the book is $30 U.S.

    This is an excellent book. It is a reference book, full of good information and good science, explained clearly. This book deals very practically with developing a treatment program for an individual child. I think that most of it will turn out to apply directly to adults with CFS as well.

    In addition, I want to recommend the book by Amy Yasko entitled Genetic ByPass. It is available from the website

    http://www.holisticheal.com

    as part of the "Nutrigenomics Educational Starter Packet." The price is $49.95. This is also an excellent book. It discusses treatments specifically tailored to the particular combinations of genetic variations found in different patients.

    I think these two books complement each other. I would recommend reading the Pangborn and Baker book first, as it provides a good basis for understanding the technical aspects of the genetics found in the Yasko book.

    Although I have been suggesting consideration of the DAN! treatments and the Yasko testing to people with CFS for only a short time, and it is too soon to draw conclusions, early feedback is very encouraging. While I am going out on a limb to some extent in announcing this now, I don't want to wait any longer, because I think this could help a lot of people. Of course, we should all keep in mind that with the current case definition of CFS we have a very heterogeneous population, and the DAN! treatments may not help everyone who has CFS, but I am convinced that they will help a substantial subset. So I want to encourage those who have CFS and those who treat it to look into this in the strongest way I can. It could be the answer for many of you.

    [Disclaimer: I have no financial interest in anything recommended in this article.]

    Best regards,

    Rich
  20. richvank

    richvank Senior Member

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    Hi, Richard.

    I think the neurotransmitter-related issues are a big part of what's wrong in the gut in ME/CFS. The ones responsible for controlling gut motility are acetylcholine and serotonin. In many cases of CFS, it appears that both are in short supply as a result of the partial block in the methylation cycle, which lowers choline synthesis, and the coupled dysfunction of the folate metabolism and the biopterin cycle. Tetrahydrobiopterin is needed in the synthesis of serotonin from tryptophan.

    My current view is that the methylation cycle and the gut have to be brought up together in many cases of ME/CFS, because there are so many interactions between them, and problems with one hold the other down.

    Best regards,

    Rich

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