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Genius Wanted ~ Anyone have a big picture theory?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Koan, Sep 14, 2009.

  1. Koan

    Koan Be the change.

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    Genius Wanted ~ Anyone have a big (gut) picture theory?

    I posted re gut stuff in another area where anxiety (bowel/brain) is being discussed but thought I'd also post here for others like me who are overwhelmed, but heartened, by all of the info re the gut and ME :)

    I'm hoping that some genius on board is able to sythesize the information we're getting. I'm not able to think my way through the various threads and theories and make sense of it all. However, my gut feeling, so to speak, is that this is pivotal to, if not recovery, major improvement of symptoms and quality of life.

    Anyone care to take a stab at what this all means?

    Please!

    Many, many thanks!
     
  2. Dreambirdie

    Dreambirdie work in progress

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    Finding a genius in the fog

    Hi Koan--

    So let me get this right...you are looking a genius in a group of people prone to serious brain fog? :confused::confused::confused:

    I'm certainly not going to qualify as genius, but I have given a lot of thought to pondering this condition over these past 32 years with it, and to observing the results/or total lack thereof in consulting the 126 practitioners/methods I've attempted so far for it.

    So here's my synthesis of CFS: This a complex multi-systemic disorder, that can affect most, if not all, of the major organs, glands, and systems of the body (immune, neuro, endocrine, digestive, musculo-skeletal, cardio-vascular, respiratory, excretory), which is most likely caused by 1) an overload of environmental toxins, 2) a serious viral, bacterial and/or parasitic infection, in combination with 3) nutritional deficiencies, dietary excesses, food allergies.

    Though there is no known cure, many PWC's have found symptomatic relief and improvement in their overall energy and functioning by addressing the following issues, in no particular oder: 1) detoxification of bio-accumulated toxins, especially heavy metals, 2) reduction of infectious agents through various supplements and prescription drugs, 3) elimination/avoidance of allergens in their environment and diet, 4) addressing any nutritional/digestive deficiencies unique to their individual case, and improving absorption of essential nutrients with digestive aids and probiotics, 5) attaining proper hormonal balance through the use of supplements or bio-identical hormones, 6) improving and getting deep sleep.

    In all the universe there is no condition as puzzling, baffling and frightening to live with as CFS. Most MD's are seriously lacking in the skills (and intelligence) necessary to diagnose CFS properly, and have no clue as to how to proceed with PWC's, usually reducing them (us) to psych cases. Most patients are left on their own to find the answers that work best for their particular symptoms and needs. What works to aid the improvement of one person's CFS, may not (and most likely will not) work for the next PWC. In spite of this, there are those who are able improve their condition over time and those rare few who completely recover. Hallelujah.
     
  3. Dreambirdie

    Dreambirdie work in progress

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    Hi again Koan--

    Okay, I just realized that I think you want a summary of the GUT information only. And I just spent an hour summarizing the entire CFS forum. :rolleyes:

    Brain fog guilty as charged.
     
  4. Koan

    Koan Be the change.

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    lol!

    Dear Dreambirdie,

    I'm so glad you replied to yourself because, in my fog, I was not at all sure how I was gonna break it to ya.

    Yeah, it's the flurry of new gut info I'd love to see synthesized.

    By the by, I've been at this nearly as long as you - viral type onset in 1979. I gotta say, I've never felt closer to a breakthrough in understanding than I do now. Well, not me personally :eek:, but in general.

    All the mist,
    koan
     
  5. Dreambirdie

    Dreambirdie work in progress

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    I'm so glad I spared you the agony. :rolleyes:

    My gut seems to be happier these days due to regular Betaine HCL (3 caps is my optimal amount, with each meal), to help me digest the animal-source proteins--which are "the building blocks" for not only immune cells, but also the neurotransmitters. AND fairly high doses of probiotics. In my case either alone doesn't cut it--I need both to have a fully functioning digestive tract.

    As far as the anxiety goes... I saw you mention that on the other page... in my case that was, and is still, caused whenever my adrenals get too tired--low cortisol. I've not noticed a mood change with the probiotics. But who knows, maybe my mood changes, and I didn't notice. :confused:

    I'm glad your general feels a close breakthrough. On the front lines of this for three decades, my general has retreated to the beach for back-up. :cool: My brain prefers the sound of crashing surf to the sound of the computer hum.
     
  6. Frickly

    Frickly Senior Member

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    I hesitated to answer this because I am far from a genius. In fact, without my handy book I would not be able to get three words out about this interaction between the gut and brain. The following is an excerpt from my book that I think described this well and I hope it helps.

    "Molecules and proteins from food act on the brain. The opiate-like peptides found in foods that contain gluten and casein are particularly relevant to autism. A peptid is a particle of food protein that would normally be digested in the GI tract before being absorbed into the boodstream. If digestive enzymes are abnormal and the gut lining is injured, peptides that normally would not be allowed can cross over into the bloodstream, i.e., leaky gut. Gluten and casein peptides can attach to opiate receptors in the brain and in the body. Opiates act as both neurotransmitters and immunomodulators. Exogenous opiates can interfere with our natural endogenous opiate function, changing the balance of neurotransmitters. Examples of other exogenous opiates are morphine, heroin, and other narcotics. Obviously these drugs have neurological effects and are addictive, but they also affect bowel function (slow motility) and weaken the immune system. Although food derived opiates are not as strong as these drugs, the biochemical effects are similar, including how they make people feel." Bryan Jepson

    Anyway......I hope this helps a little. Gluten and casein seem to be the most talked about in the autism world but we are all different and have different reactions to different foods. We are now looking into Phenal's being a main issue for our son.
     
  7. Cort

    Cort Phoenix Rising Founder

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    The website is always looking for people who want to dig into an issue and try and explain it - so if there's anyone who wants to do this (or another subject) - let me know. There's a tremendous amount of knowledge in the Forums that's for sure. Victoria just finished a really nice page on aromatherapy for the website - something I know nothing about and could not do. It'll be up soon

    I agree that it is a big complex issue. I am going to give Gut Issues a try after Dr. Maes comes back with an interview he promised to do. I doubt that I'll do justice to it though since I'm spending alot of my time learning computer programming (or rather TRYING to learn computer programming).
     
  8. Victoria

    Victoria Senior Member

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    I'd love to get into this subject, but my "real" job calls today.

    Gosh, it's a B..ch when you've got to work full-time.

    I suppose you are all thinking "What is this menopausal idiot saying"

    She's actually able to work full-time, but let me enlighten you. It's B.....hard work, especially today, becauseI' veg otdyslexia today. Those drugs & strees from my heart test last Wednesday must have short fused my brain.

    But what I meant to say on this subject is........

    Has everyone with gut/bowel symtoms had Faeces sample testing?

    (or is this a stupid question - you've all had it done, right?)

    My 2 1/2 yrs of daily chronic diarrhea, excruciating bowel pain for 4-5 hours every night for months on end, virtually stopped on the day I had to swallow all that white drink the night before my colonoscopy/gastroscopy.

    23 trips to the toilet in one day is no mean feat. In the end I sat on the toilet reading a book for 3 hours. At 9.00pm I decided to stop drinking the "stuff" otherwise I never would have got any sleep before my 8.30am colonoscopy the next day.

    Even a teaspoon of water went straight through. It's a wonder I didn't keel over with dehydration.

    I had had a Blastocystis Hominus (parasite) infection for some years which was not eradicated by mutiple doses of antibiotics.

    The "clean-out" fixed the problem! I thought you only got these parasites on Asian holidays (it was 30 years since I'd been to Asian countries), but apparently not so. I used to eat a lot of raw food - salads, vegie juices every night etc. Maybe I didn't wash the food enough?

    Anyway, those that haven't been tested might like to consider it?

    Victoria
     
  9. Koan

    Koan Be the change.

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    Thanks Geniuses

    Very interesting things to ponder, there, thanks much for all your input.

    Dreambirdie, my general will meet your general at the beach. I have one a block away from me - it can be glimpsed behind me in my pic.

    Frickly, Thanks much! I'll have to read that a few times but I wouldn't be at all surprised if that wasn't a part of it.

    Victoria, Bummer about the parasite! Sorry you're struggling. Looking forward to your aromatherapy thread - the fastest way to the brain is through the nose!

    Cort, I think you have already created the best sythesis possible in the title of this thread. Thanks for this and forgive my impatience, please.

    I think it's too early for anyone to have formulated a big picture theory which covers all the new gut info although several links seem to have been formed. Some tantalizing links seems unconnected at present.

    For instance, the whole d-lactate - aka lactic acid desomethingorother - thing. Could this be the reason why Kifir and some probiotics, but not others, are helpful for symptoms including anxiety? If you inject a Panic Disorder patient with lactic acid, they will have a panic attack. This is a recognized method of distinguishing between Panic Disorder and other anxiety disorders.

    I'd love to see Chia, DeMeirleir, Maes and Lemles in the same room having a gutsy conversation.

    Thanks again for all your input!
    Koan
     
  10. Dreambirdie

    Dreambirdie work in progress

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    Hi Victoria--

    I'm glad you brought this up. Sometimes parasites can be VERY difficult to diagnose. I had amoebic dysentery that went undiagnosed for many years, because the labs couldn't find it. And I've heard this kind of story many times from others as well.

    On another forum I found out about Paragone, from a PWC who had picked up a nasty bug in Bangladesh. He was able to get rid of it in four days with this stuff. He said he preferred doing a round with it, rather than hassling with labs that would most likely miss the problem. I thought I'd pass this along to anyone who is interested.
    http://www.renewlife.com/products/paragone.aspx
     
  11. Catseye

    Catseye Senior Member

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    CFS explained

    Having spent the past few brain fogged years figuring it all out and finally curing myself, here's what I've concluded:

    First of all, that I AM a genius for being able to get to this point. I'm all high on myself now, can't help it, sorry, hehehe:p

    I go into more detail in my thread "what you need to do and why" in personal stories. But this is the very condensed version because you wanted it short and sweet.

    CFS (most cases, there are always exceptions but I'm talking about virtually all cases) begins with intestinal dysbiosis - the bacterial flora is out of balance. The causes are most likely bad diet and lots of antibiotics, but could be lots of things. Dysbiosis means there is not enough good bacteria and too much bad bacteria. One of the good bacteria's most important jobs is managing the integrity of the intestinal lining - making sure the intestinal wall is protected. It has very small pores in it that let nutrients and things we need pass through it. If the good bacteria is not there, the bad bacteria and yeast will infect the lining and the pores will get bigger.

    Food intolerance can cause inflammation which will also injure the intestinal wall. The pores get bigger and start letting all sorts of things through: undigested food particles, bad bacteria, waste, etc. The good bacteria also help digest food so when there aren't enough, you have undigested food particles accumulating. All these things can now pass through your intestinal lining which has developed intestinal hyperpermeability or leaky gut syndrome.

    Now your bloodstream is full of nasties so your liver and kidneys become overwhelmed. They stop functioning optimally. You are now starved for nutrients from impaired digestion and have more than your liver can handle to detoxify properly.

    All other organs and metabolic systems start to suffer from toxin and undigested food particle overload and starvation of nutrients. No two people react to these failings in the same way, that's why our symptoms are so different.

    On top of all this, as if it couldn't get any worse, heavy metals start building up in the body and start getting deposited all over. The body seems to treat metals like slimy corporations treat toxic waste - they try to dump it where it won't do any immediate harm but they can't really do anything to it to make it any safer. So your poor broken body starts dumping mercury, lead, thallium, tin and platinum wherever it can.

    Those were my own high metals and I suspect them to be in my hypothalamus/pituitary (the master gland system which controls all the other ones, so his job is compromised), in my adrenals/kidneys (making my adrenals not able to perform properly or my kidneys able to balance fluid optimally) and my liver, since it just seems to be taking a licking and yet keep on ticking. And finally, some of the metals must be in my brain because my memory is shot. At least I've gotten back my ability to concentrate and problem solve - and this just from the gut fix! Oh, did I mention I also feel great and can do some easy exercise?

    Okay, what to do quickly: get a CDSA (comprehensive digestive stool analysis) done by a qualified health practitioner (NOT a medical doctor) and start fixing the dysbiosis - this has to be done first. As you do this, the intestinal lining will begin to heal gradually. It took me a year to fix the dysbiosis. Then I started adding some carbs to my diet and I'm about to do another stool analysis on Monday. If it looks good, I can begin chelating heavy metals. If it's bad again because I got stupid and ate some carbs, then I have to restrict my diet again.

    If I start chelating heavy metals, there is no telling how long I may have to keep doing it to get them all out. Andy Cutler, an expert, says anywhere from 1-4 years, depending on how bad you got. I was pretty bad, bedridden for 3 years.

    So that's what you do: get the CDSA to gauge the severity of dysbiosis, fix the gut while supporting the metabolic systems that you can with supplements, then chelate the metals. Sounds easy but this will literally take years. Not to put you off, but just so you don't find yourself expecting to be back to normal in 6 months and giving up when you still have problems. It took years to get like this, we've already been sick years and it did damage, and so now to fix it takes yet even more years. But what else do we have to do? Sit around feeling like everything sucks? It's all do-able but you have to do a lot of your own homework so you can understand what you need to do.

    It's a tough fix, and it's expensive and you have to develop an enormous amount of willpower when it comes to food. Those of us who have been bedridden and felt like we were dying for a long time have already developed infinite patience and infinite willpower when it comes to food. My own attitude is that I will do whatever it takes to get better. I won't waste any time because it takes too long. So no cheating on food, not even a morsel. I found my expert at becomehealthynow and if you look at beatcfsandfms.org, they have the protocols for CFS and fibro and they can help you find a doctor.

    I also have extensive notes on how to deal with depression/brain fog, energy problems and other things all with the use of specific supplements. I had been experimenting with supplements for a few years before I figured out I need to fix my gut so I was getting pretty good at managing certain symptoms. I at least stopped the dying feeling and was able to get out of bed and start thinking.

    The gut fix I did was all done with a carb restricted diet and supplements. I had severe hypoglycemia, too, and that was completely gone within one month of starting my gut treatment.

    I also wish there was a way we could all sue our medical doctors for not only failure to diagnose dysbiosis and hyperpermeability, but also for the misdiagnosis of CFS which is just a BS term for "gee, we don't know what's wrong!":mad:

    I have to end on a pleasant note, though. Even if I had to stay like I am now and leave the metals in place, that would be okay. I had lost my good feeling for a very long time, even contemplated suicide because I couldn't take the agony and didn't know when it would end. But I'm glad I hung in there. My dad got me a mac laptop for Xmas in 2005 and it saved my ass. Thank God for Dr. Google. I'm now on my second laptop since I dropped the first one a few times because I was a mess and it didn't work anymore. But I do!!! DO NOT GIVE UP!!!;)

    Oh, have to add because it's very important - when you google for health related things, always include the words "natural remedies" in with your search terms. That way you will exclude all the medical profession's advice which is misleading and useless to us. Sometimes it's even the exact opposite of what we should do.
     
    helen1 likes this.
  12. kurt

    kurt Senior Member

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    CFS is the cure for the pathology of believing oneself a genius.

    This is an interesting idea, synthesis of all the information about CFS. Maybe a meta-analysis of all the new CFS research is in order, that might be an interesting project, would take a team I think. Maybe we need a competition for a genius grant, or even an X-Prize to solve CFS?

    But you wanted to know about digestive issues, right? I am not a genius, but have been down the leaky gut road and while I believe repairing the gut is important, definitely my experience has shown me that at least in some cases, leaky gut is probably not the cause of CFS. For one thing, I know too many people who had very well-functioning guts before CFS, myself included. For some people digestive issues may be a trigger for CFS, for others dysbiosis only follows years of CFS. I know exactly when I contracted CFS, and my gut problem started four years later! Before CFS I had a very good diet, no junk food, well balanced, etc. Also, after I did have gut problems I went through every major gut repair trend, had all the digestive and liver tests, including advanced stool analysis, ELISA-ACT for food allergies, liver detox profiles, minerals/heavy metals testing, the works. And I went on every diet, they are all good, BTW, I was on the Specific Carbohydrate Diet, Body Ecology Diet, various Hypoglycemia diets, Jordan Ruben's diet (complete with all the GOL supplements and the raw goat milk yoghurt), juicing, fermented raw foods, Alkaline Way diet, enzymes and HCL, etc. There were some improvements but definitely no cure. Finally I realized that this was just the natural medicine equivalent of pharmaceuticals in traditional medicine, a type of universal cure-all, and yet another dead end. After all, loads of people have gut dysbiosis today, and they definitely do NOT all have CFS. Why was that not obvious to me? I guess with CFS hope springs eternal. Anyway, I could go on and on, that was years of investment, but ended up being just one of many helpful but not curative treatments tried. Definitely gut issues should be treated if they are present, I think everyone agrees with that. And I stick with the best of the diet habits still today (gave up on the raw goat milk yoghurt though). Gut issues, even leaky gut, definitely can contribute to our toxin load, inflammation and food reactions, and maybe something did heal in me, I can tolerate a little more carbohydrates today. But still have CFS, I think gut issues as bad as they are, are not the cause of CFS, at least not for most PWC I have known. An aggravating factor for certain though. Actually, working on my stress response, focused meditation, self-talk to stop bracing (based partly on Gupta's ideas) has probably helped my digestive processes almost as much as the diets and supplements.

    As far as the rest of CFS, synthesizing everything would be a fun challenge, even for some of us non-geniuses. But that takes time...
     
  13. Catseye

    Catseye Senior Member

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    to Kurt, want to know about your treatment

    I have some questions and comments because I'm wondering about the treatment you went through. I'm not picking at you, the questions are not meant to be rhetorical, I'd really like to know::)

    You said you knew people with well functioning guts before they got CFS, including yourself. How would you know if somebody had a well-functioning gut without having done a CDSA? I'm thinking it's apparent they were starting to malfunction for a while before we got this bad. That people just got worse and worse until the bad bacteria was at "critical mass" and then everything started breaking down, starting with the gut lining. It would have to start out as mild dysbiosis, which probably most people have, to progress to severe dysbiosis later on down the line. Nobody got a CDSA before they got CFS to see if it was functioning well. How could we assume it was? Why do you think that you only developed gut issues after having CFS for awhile and not before?

    A well balanced diet is not necessarily healthy. We have all been eating foods we are intolerant to. And mixing together contrasting food groups renders them indigestible, like meat and potatoes. So we have actually been aggravating the situation with our "so-called" balanced meals.

    Who was ordering and interpreting your digestive and other tests? Was it a medical doctor? Did the subject of possible wheat and dairy intolerance come up? Or any food intolerance, for that matter? Did you do the CDSA? My first doctor was a digestive disease specialist, supposedly the best in town. After a year and a half I realized he was completely ignorant about what was happening to me so I dumped him.

    The food allergies test like ELISA is not necessary because it won't necessarily show an intolerance to the food, they are merely assessing the levels of certain immune responses. Food intolerance can just be an inability for the digestive system to break down a certain food, usually casein (milk protein) or gluten (wheat protein). You don't necessarily have an allergy to the food, you just can't tolerate it because it causes problems without you being allergic to it. My doctor didn't order any food tests, he went by the results of my CDSA to recommend the proper diet.

    The Specific Carbohydrate Diet recommends fruits and milk products along with the other foods. The way my own dysbiosis was, I never would have been able to fix it if I was consuming fruits and milk products.

    I'm really thinking that you maybe just need a better qualified person to analyze any possible gut issues.

    I have done a CDSA about every 4 months or so and I can see the changes my diet and supplements have done to my guts.:D
     
  14. Frickly

    Frickly Senior Member

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    Catseye

    Hi Catseye, Welcome to the forum.:D I am so happy that you have been able to find some releif. I completely agree with most of of your post as I have my son on a GFCF along with probiotics, digestive enzymes and othere supplements. We have also been chelating for several weeks.

    However, I have to disagree when you say that CFS starts with "intestinal dysbiosis". I beleive it starts with a mitochondrial or immune dysfunction and now XMRV is a real possibility. This can lead to all kinds of problems including chemical sensitivities, food sensitivities, allergies, asthma, virus', bacteria, ect.

    My son is on a restrictive diet for his Aspergers, ocd and tourettes and is showing great results. However, I do not beleive this will cure his autism and other issues.

    That being said, I do beleive that changing your diet can greatly releive symptoms for many people and it is definitly worth a try. There are many discussions on this forum about this issue and many that are on different restrictive diets with good results.

    Thanks for posting all this information as I beleive it can be very valuable to those seeking information on this subject.

    Take care,

     
  15. Catseye

    Catseye Senior Member

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    Hi Frickly!

    The mitochondrial malfunction is just because the mitochondria have been starved for the nutrients and metabolites they need to function. It is because digestion isn't working. You can't absorb and assimilate the nutrients out of the food and then your body can't make the proper metabolites it needs to feed the mitochondria. And also, the body moves from aerobic to anaerobic energy production to purposely produce less peroxynitrite, an extremely harmful free radical produced as a byproduct of energy production.

    I studied the mitochondria in depth, especially Cheney's articles, and that's what I got from it all. I also found that if I took many of the nutrients and metabolites in supplement form that the mitochondria are using, then I could increase my energy tenfold. If I explain each thing, we'll be here all day, but this is what I took for the mitos:

    acetyl l carnitine
    magnesium malate
    coq10
    calcium pyruvate
    NAC
    ribose
    Biotec Extra Energy Enzymes (catalase and superoxide dismutase)
    B multi vitamin in bioactive form
    folate
    pantethine

    If you want detailed explanations about the above supps and how the mitos function, I have extensive notes I could post or send. BTW, there are some very rare mitochondrial diseases that have actual mito gene problems, but with us it's just another metabolic disturbance caused by an organ (or organelles in the case of mitos) that is starved for the nutrients and metabolites it needs to function. And the fact that the antioxidant enzymes are not being produced in sufficient quantities.

    The above supplements will help because you are taking concentrated forms of nutrients that are found in the foods that we can't digest properly. Some of them - folate, pantethine, cysteine, extra energy enzymes, ribose, coq10, and calcium pyruvate - are manufactured by the body when it is working properly and not starved for nutrients. But we aren't presently manufacturing them in sufficient quantities so it helps to take them. We're lucky they are available.

    The immune dysfunction begins with the intestinal dysbiosis. See my post "what to do and why" under Personal Statements for a description of how dysbiosis progressed into CFS, including immune system dysfunction.

    And for even more details about why the gut is so important for the immune system, check out a later post on that same thread "what to do and why" called "why the gut is vital part of the immune system". And, finally, check out jill's post about autism on there and mine and Athene's answers to her in that same thread. Why didn't I just say read the whole thread? :confused:


    I think the XMRV is just another opportunistic bug that infected us because the guts/immune system is shot. It's not an issue in itself. All those problems you listed - chemical sensitivities, food sensitivities, allergies, asthma, virus, bacteria, etc. - are all problems caused by dysbiosis and hyperpermeability. I already have epstein barre, lyme, hep c (did chemo to get rid of it, don't know if it's back) and who knows what else but I'm through trying to run them all down because it's not relevant to my treatment plan. You fix the gut/immune system first and then worry about what bug is still around, if any. Besides, you won't be able to stave off a bug if you immune system isn't working. It will just return as soon as you stop whatever "antibug" treatment you are doing to get rid of it.

    Are you using a DAN doctor for your son? I think the question of if we get cured, or if an autistic child gets cured, really depends on how bad the damage is after the illness has been going on for awhile; the dysbiosis and hyperpermeability and resulting heavy metal distribution are doing damage and the longer they are allowed to go on, the worse it is. I think if it's not a long time, most of it is reversible but for really long, drawn out illnesses, some of it is going to be permanent. Still no reason to give up, though. I happen to think that children have particularly resilient bodies and I have read of many cures happening from the right fix. Check out autism.com. I hope you have continued progress.

    The treatment I am really advocating is not any one treatment, it's more like "choose the right health specialist" and he will know the proper tests you need and how to interpret them. If you get an individually tailored diet and supplement plan, then you benefit greatly. Anything else is really just guessing. You may get lucky or you may not. It's not worth the risk considering how much time it takes to fix a bad gut. Get on a plan formulated just for you and you speed up the process. My own fix took a year. Then I added back some carbs to see if I could tolerate them. No wheat or dairy, just like some fruit, brown rice and gluten free grains. I'm doing my next CDSA tomorrow morning (oh joy!!) and I'll know in a couple of weeks if these additional carbs were a mistake or not. If it's all good, then I'm on to the next phase: chelation. If it was a mistake, back to the carbless, restricted diet until the gut returns to normal.

    My post to Koan was a brief description of what is going on because Koan asked for basically a summary. And I can literally go on forever about this stuff.;)
     
  16. Frickly

    Frickly Senior Member

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    Catseye


    I hope the best for you and that your message may help others.
     
  17. kurt

    kurt Senior Member

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    A reasonable question Catseye. But look at the logic you are following. Basically you are suggesting that mild dysbiosis can cause CFS. That is just hard to believe. How did I know I did not have gut issues at first? That is a long story, basically I lived a healthy life, had moderate stress but not much else going on, no excesses of any kind in my life. I had a very good diet, almost all food made from scratch. And no antibiotics that I can recall, maybe one or two rounds of antiparasitics when one of my children had ringworm. I avoided excessive sugars and simple carbs, and have done that since I was a teenager, just felt like I should do that.

    Anyway, my CFS started after a 'killer flu', it was gradual onset after the flu, over the course of one year. I found ways to manage my energy and followed a type of self-invented graded exercise program. I noticed that my oxygen and exertion capacity had been cut about in half since the bad flu but worked within that 'envelope'. I recovered enough to go back to work full-time for several years. So I thought I had beat CFS. There were no digestive problems, no food sensitivities, nothing. This was my CFS stage 1.

    Then out of the blue, on a cross-country trip I started having horrible new reactions to simple carbs, even seizures. At that point I think a new level of CFS started, my CFS stage 2, and definitely this time it included digestive dysbiosis. Food allergies, gluten and casein sensitivities, severe hypoglycemia, dramatic weight change, the works. I developed brain fog for the first time, and had long stretches of being bedridden. I became horribly sensitive to molds and mildly sensitive to EMF. This was the dysbiosis version of CFS. And I went through many different treatment approaches over the next several years (I'll detail more below). But despite the treatments I became fully disabled.

    Please do not get me wrong, I am not trying to discredit anything you are saying about treating leaky gut. The only point I disagree with is the idea that LGS causes CFS and if someone like me treated it unsuccessfully they just did not try hard enough. That is a common reasoning trap that many advocates of CFS treatments seem to fall into. I have been told that I did not try hard enough when I was not cured by many other therapies, too many to list here. But they can not all be right, in fact I think all those types of claims are inherently wrong.

    I worked with an MD who had suffered from CFS himself and cured himself with integrated medicine. He became a 'Functional Medicine' specialist, which in my view is the best form of integrated medicine. He knew what he was doing, was a specialist in many key areas. Yes, I had a CDSA and it was properly interpreted and treated through many different methods.

    I have been down all of those roads, have been off gluten and casein for many years. Are those problems contributory, yes, are they causal, definitely not. I was a professional researcher before CFS and really did study this issue out and spent years on the diet-can-cure-CFS bandwagon. And I am here to say it is a false idea promoted by well meaning people who have some things right but do not understand the full nature of CFS, genetic predispositions, the effects of multiple cellular co-infections, the effects of a blunted HPA system on the gut, liver, brain, etc. The real cause of CFS might be in the gut, I am not ruling that out. My only point is that the cure is not in any diet I have seen or heard about or tried. That includes supplements for the gut, I have tried all I could find. I poured thousands of $$ into gut treatments, maybe tens of thousands. I had a good income and owned a research company when I got sick.

    This is what the leaky gut proponents want you to do, see the difference on the CDSA, and that is great. But the real issue is how you are moving on Bell's scale. I did see my digestive markers improve, and went up 20 points on Bell's scale. But I needed 90 points to get well. So digestive issues just were not even close to the solution for me. And I am not alone in this, have a daughter with CFS and she saw the same good doctor and followed the same regimin, with the same modest results.

    Maybe fixing the gut can heal some PWC, if that is true then I guess we are just not all alike in the CFS world. We seem to have some points in common, and then some differences.

    Frickly,
    I agree with this completely. I have a large family. Several children have ADHD, plus one with some type of low-level Asperger's and one with both Tourette's Syndrome and CFS. And all are high functioning and gifted in some ways. The child with mild Asperger's taught himself to read over about a two week period, and could read at a college level when he was in early elementary school. We all follow the Feingold Diet, and one who is sensitive to casein uses goat milk products only, and that makes life livable.


    A comment on the 'genius wanted' idea:

    I want to see evidence. How will we know when the correct causal model and treatment approach for CFS is present? People like me and many on this forum will finally be well again. When a treatment produces a 95% recovery rate, then I will believe claims that maybe if it is not working the person needs to try harder. Whoever can produce evidence of a 95% recovery rate, and not improvement, but recovery, will be a genius to me, no matter what their IQ.
     
  18. Catseye

    Catseye Senior Member

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    Kurt

    Forgot to ask, what did the metal tests show? Did you do any chelation?
     
  19. Frickly

    Frickly Senior Member

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    Kurt

     
  20. kurt

    kurt Senior Member

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    USA.Earth
    Well, that is something we agree on. The odds against XMRV are pretty high. I think XMRV may turn out to only be present in the sickest PWC. It could be a harmless passenger virus. There are hundreds of harmless MuLV viruses. But that does not mean we have no retroviral problems. HTLV, for instance could be a player in the CFS pathology, or HERV, which is actually one of the most interesting, an endogenous human retrovirus that has been found to be over-represented in PWC by a study at Tufts. And HERV is similar to MLV, a type of gamma retrovirus. But XMRV is far more publishable right now, I think WPI could have picked any of a number of retroviruses to focus on and they may wish they had picked better...

    Good questions, I have high mercury and cadmium levels, and maybe copper. I did a DMPS provoked test for that so it is accurate. I tried several forms of chelation but could not tolerate them. Moving metals around is a very bad idea in CFS. One survey of therapies tried by PWC a few years ago showed metals chelation to be at the very bottom of the list, with the least overall benefits and the greatest side-effects. Given a leaky BBB in CFS I think moving metals at all is risky, one could worsen the brain load of mercury, for example. If GSH levels are built up adequately and the leaky BBB is fixed (and also the LGS), the body should clear those metals naturally, slowly and safely.

    BUT, all that said, I fully agree with your comments about how to correct leaky gut, and that is very important. You should share what you have learned, I think fixing leaky gut and dysbiosis is one of the safest CFS treatments there is. But please note that it does not always work the same for every PWC. That is one of the challenges with CFS, what works for one person can harm another, this is a strange illness. I have learned that lesson the hard way.

    That brings back memories, yes those GT/LD children are amazing to watch. What they lack is somehow made up for in other ways. And definitely concur about the computer, my son is now in 8th grade and programs his own video games, that is a big part of his life. And he remembers every piece of trivia, can talk with adults on almost any topic. These children are in a world I don't think the rest of us can really comprehend.
     

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