1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

A Role for TPN in CFS?

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Graeme, Oct 21, 2010.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    53
    Has anyone had Food Allergy testing done? Would it be helpful? I don't seem to have a negative reaction to any food specifically- (although I hardly eat any wheat/gluten at all, and no meat anymore, I don't drink milk....I'm down to so few foods already!) but it feels like my body can not digest anything. Bloating, feeling drugged sometimes (doesn't matter really what I eat, it can happen with any food I put into my body)....... Would testing for food allergies be helpful? Is a food "sensitivity" possible without allergy?
    I had the leaky gut test done years ago- normal. I was tested for celiac disease years ago (before CFS)- negative.

    My body seems to need digestive enzymes or it feels like the food just sits there, making me ill. I wonder, if a person has an enterovirus, could we be "feeding" it and making it worse?

    I did have several nasty stomach viruses prior to CFS- In fact I've had them throughout the years, what one would refer to as the stomach flu. Twice where I couldn't stop throwing up for hours on end. Tested positive Coxsackie B4 once through bloodtest.
  2. Wayne

    Wayne Senior Member

    Messages:
    2,174
    Likes:
    1,238
    Ashland, Oregon
    The treatment of patients with mycotoxin-induced disease

    Hi Joey,

    The Townsend Newsletter waits about a month before they post their most recent articles online. This would explain why you can't access it at this time. I think you'll enjoy your new subscription to TS. The articles and topics seem to be right up your alley.

    I did a little searching and found the following link, which should provide some of the finer points you mentioned. I've not read it yet myself, but discovered it talks about "dose neutralization". This link takes you to the full paper. I'll paste the abstract below.

    The treatment of patients with mycotoxin-induced disease

    William J Rea1, Yaqin Pan1 and Bertie Griffiths2

    Hope this helps. I'm looking forward to reading it soon.

    Wayne
    ....................................................

    Abstract

    Twenty-eight incapacitated individuals (average 43 years old, 7 males, 21 females, range 12-70) exposed to molds and mycotoxins were studied and treated with a protocol of cleaning up or changing their environment to be mold free. Injections of the optimum dose of antigens were given as part of the treatment protocol as was oral and intravenous (i.v.) antioxidants; heat depuration (sauna); physical therapy with massage and exercise under environmentally controlled conditions; oxygen therapy at 4-8 L/min for 2 hours with a special woodgrade cellophane reservoir and a glass oxygen container. Many patients were sensitive to plastics; therefore, exposures to these were kept to a minimum. Autogenous lymphocytic factor was given as an immune modulator. Of 28 patients, 27 did well and returned to work. One patient improved but did not return to work during the period of study. Keywords Antigens neutralization, anti-fungal drugs, oxygen, vitamins, chemical sensitivity, rotary duct
  3. andreamarie

    andreamarie Senior Member

    Messages:
    195
    Likes:
    2
    TPN has a very high mortality rate. If your central line gets infected, which is common in home TPN, you will get an infection in your heart. I have Crohn's disease and wrote for the Crohn's and Colitis Foundation. I interviewed patients on home TPN; it was keeping them alive. One had an infection, went into a coma and died. A few yrs later my cousin was wasting from AIDS and went on TPN. It gave him six months but a horrible six months because he got infections and was constantly hospitalized. I would do ANYTHING to avoid TPN; I see it as a treatment used when nothing else will keep them alive. I attended a funeral of a twenty yr old MIT student who's line became infected. It was twenty five yrs ago and I'll never forget it.
  4. slayadragon

    slayadragon Senior Member

    Messages:
    1,076
    Likes:
    342
    twitpic.com/photos/SlayaDragon
    I have a huge amount of respect for Dr. Rea, especially with regards to his theoretical grasp of the material in his books. The most recent one ("Reversibility of Chronic Degenerative Disease and Hypersensitivity: Regulating Mechanisms of Chemical Sensitivity") is especially terrific.

    Unfortunately, Rea's clinic is in Dallas. This is a bad city in general with regards to air quality, but a bigger problem is that it is one of the worst places for the "?" (an outdoor biotoxin of some sort that seems associated with particularly problematic CFS symptoms).

    He knows the air quality is bad, and insists that people stay inside with air purifiers on. I find it hard to imagine that any treatment that Rea might give me would compensate for the exposures that I might get there, and thus have avoided the area.

    I've not heard that Rea's treatment is the miracle that he suggests that it is in this study, at least for CFS. I have to think that, like Dr. Shoemaker, he is treating just mold illness rather than CFS patients. (Though what the difference is between mold illness and CFS - in terms of the underlying factors - I'm not absolutely sure.)

    I'm really interested in what people here think of the idea of autogenous lymphocytic factor as an immune modulator. Thoughts please???

    Antigen injections are something I've not tried. I have yet to figure out whether he's doing the same thing that any allergist might do. Insofar as this is a toxin, antigen injections would be counterproductive. But at some point the hypersensitivity reaction starts to be more like an allergy, possibly. I have enough respect for Rea that I don't want to dismiss the idea that anything he suggests might be helpful.

    All the other treatments he suggests (hyperbaric oxygen, sauna, massage, IV and oral nutrition, cholestyramine and other detoxifiers, candida control, clean food/water, environmentally safe housing) seem like good ideas to me. I've benefited from all of them.

    It would be nice to have been able to get them in a one-stop-shopping place. If his shop had been just about anywhere other than Dallas, I'd have stopped off there myself.

    Best, Lisa
  5. slayadragon

    slayadragon Senior Member

    Messages:
    1,076
    Likes:
    342
    twitpic.com/photos/SlayaDragon

    I suggest a book called "The Pulse Test" by Arthur Coca M.D. I found this to be much more helpful at allowing me to identify problematic foods than any food sensitivity tests.

    What it involves is using pulse elevations to identify food reactions.

    So for instance, this is what would happen:

    Noon: Pulse = 70. Eat large serving of strawberries.

    12:30 p.m. Pulse = 80.

    1 p.m. Pulse = 110.

    1:30 p.m. Pulse = 75

    This sort of pulse jump suggests that the food is prompting a reaction.

    I found this test to be far more helpful in allowing me to control my symptoms than the other tests that I had done.

    Part of it may have been that in some cases, I was reacting to contamination of the foods (e.g. with aspergillus, DON or other mold toxins) rather than to the foods themselves. Corn and peanuts were two foods that came up fine for me on food tests but that made me (at least on occasion) very sick when I consumed them.

    I wonder a bit whether it might be that some foods make us sick because they are genetically modified, treated with chemicals or in some other way different than the pure forms of the food that the labs are testing.

    The other benefit of this sort of test is that it can be repeated as needed, and that it's cheap.

    Mostly (at least as far as I found) it's just accurate.

    Best, Lisa
  6. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    9
    Ohio
    Andreamarie--Thanks for your post, infections are a common problem...The entry site needs to be taken care of and cleaned properly to minimize the risk of infection.
  7. Wayne

    Wayne Senior Member

    Messages:
    2,174
    Likes:
    1,238
    Ashland, Oregon
    Joey, I'm also wondering what "dose neutralization" might entail and how similar it might be to NAET. We have a friend who is an ND and I went to get some NAET treatments from her several years ago. We got together for a couple hours or so daily for about 3-4 days to get through the entire spectrum of vials she had in her kit.

    I experienced a pretty dramatic improvement in my symptoms during this time, and came away from this feeling very optimistic about what it might continue to do for me. Despite learning the finer points of it, and continuing with it once we got home, I found the improvements I had experienced gradually began to fade away.

    Looking back, I think this result was from not having access to the variety of vials that she had, which had some very specific vibrations. For instance, the vial I responded to most intensely was EMFs. But we werent able to duplicate that and others once we got back home.

    I also came to believe that until some underlying core issues are addressed and resolved, it was unlikely NAET would ever have the capacity to get me over a the CFS hump. Because of my generally positive experience however, I'm quite interested in Dr. Rea's "dose neutralization" methods. I've not seen a detailed description of this, but wonder if it works on the same principle as NAET, and/or is perhaps more effective.
  8. Shellbell

    Shellbell Senior Member

    Messages:
    226
    Likes:
    55
    TheMoonIsBlue - I am very much like you in relation to food. Since being sick, I didn't see any negative reactions to food. I just always seemed to stay the same no matter what I ate, with the exception of caffeinated type foods and alcohol.

    It wasn't until this summer after seeing a new doc that I realized I was having problems with food. I was given a good allergen/sensitivity test and found that I did in fact have allergies/sensitivities. So the answer to your question is yes, you can have sensitivites without an allergy. This was done through one of those standard food blood panel test.

    Once my doc realized what my sensitivities were, he went through the list and eliminated foods that he felt were related to those that I had actually had sensitivities to, even though I actually tested ok for those items. Such as, I didn't show a sensitivity to gluten, but he eliminated it anyway because I had an allergy to wheat and other gluten type foods. My sensitivity to beef lead to reducing my intake of bison even though I didn't test sensitive to bison.

    He had me stay on the elimination diet for 12 weeks. After the 12 weeks, I was then able to start adding back in those foods that I was sensitive to one at a time, adding in no more than one item no sooner than a week apart. While doing this he started me on the pulse test (like what Slayadragon mentioned) to monitor my reactions to see if I was still having problems with a particular food item. Btw, the pulse test can actually tell you if you are in fact allergic to a food, not just sensitive. If your pulse still reacts to a food months to a year after eliminating it, then it usually means that it is a true allergy. Thus removal from the diet permanently is suggested.

    Sure enough, I was still having problems with peanuts. This could be an allergy or it could be the mold factor. This is a bummer as peanut butter is my comfort food. Before this test, I never realized that peanuts were a problem until I eliminated it from my diet and reintroduce it. He finds that the pulse test in invaluable in his practice. The food allergy blood test that he starts with is exactly that, a starting point.

    In doc's practice he finds that an elinimation diet along with rebuilding resources (through supplementation, acupunture, etc. and dexoting helps inflammation to go away and sensitivities to go away!)

    You talked about your need for enzymes. What he is giving me at this point are the following: broadspectrum enzymes, Beta Plus for liver/gallbladder/pancrease (eventually moving over to Beta TCP), and HCl.

    I was really struggling with the enzymes for a bit. But recently, he suggested to stay on the broad spectrum enzymes while adding in special enzymes per what I eat heavier of during a meal. For example, if I eat heavy in fat, he has me add in extra lipase enzymes. I only started this a few days ago, but so far it seems to be helping. The broad spectrum enzymes I take at every meal. I also started taking them for some of my snacks.

    The Beta Plus wasn't helping me much until recently. Doc suggested I pulse the dosages per day. Example, one pill per meal on day one, two pills per meal on day two, three pills per meal on day three, then back to one, etc. Since I started doing this, my gallbladder and upper abdominal pain has greatly reduced. Sometimes I don't even notice it's there.

    The next step to help my digestion is to treat the adrenals and to address my B12 deficiency issues. Funny thing is a member here mentioned treating adrenal dysfunction in relation to the gut to me in a pm just a couple of days ago. My doc says the same, that treating both will help improve the digestive dysfunction even more.

    Just a note, I do not have a high load of pathogens in my gut. I had food poisoning last winter which the bacteria is still hanging around. Doc said that he will address this at some point. He also said that as some things repair, other things will likely pop up that will need to be addressed.

    Hope this helps.

    Shell
  9. Wayne

    Wayne Senior Member

    Messages:
    2,174
    Likes:
    1,238
    Ashland, Oregon
    Thanks much Shell for your comprehensive post. Lots of good and helpful information for me to digest (pun intended). :Retro smile:

    Best Regards, Wayne
  10. Graeme

    Graeme almost there...

    Messages:
    339
    Likes:
    204
    Montreal
    So if food x mold = inflammation, and people never get free of the mold, food's going to seem like the relevant variable. Once you get really free of the mold and then find out what it's like to be re-exposed, it seems like the relevant variable. (I'm going to posit that mold - being a toxic substance itself - may be more effective to avoid here than food, but I have no evidence of that.) So it's all in how you look at it, maybe.
    Avoiding food seems less desirable (if possibly more easy) than avoiding mold. Avoiding oxygen also seems less desirable than avoiding mold. Even if we have to resort to food avoidance or oxygen avoidance in order to feel better (e.g. because extreme mold avoidance isn't practical) doesn't mean that we should lose sight of the idea that it's the toxic mold that's, um, really the toxic stuff here. -Lisa

    Lisa, I really agree with your last comments...Doesnt matter how much you avoid foods if you dont take other steps as well. This is a multisystemic disease, so addressing an individual issue such as the gut by avoiding foods should bring some relief but so much else needs addressed as well -Mike


    I'd like to make absolutely clear that my theory has nothing to do with food sensitivity. Phrasing it as such only serves to confound the matter. What I'm talking about is the near universal sensitization to LPS in PWC's that I believe is responsible for the cellular energy problem. Also, I don't think this is likely to lead to the elusive 100% recovery for most. We all have our individual complications such as mold sensitivity/biotoxins (esp. Lyme), MCS/chemicals, heavy metals, and of course intracellular bugs that do so well in the environment provided by TH2 dominance. So well that you'd have to think they engineered it.

    I'd also like to remind readers that LPS is no more innocuous than mycotoxins or biotoxins. It's just as immunologically incendiary and damaging to the system. It's no coincidence it's the agent of choice by researchers wanting to drive a lab rat's immunity nuts.



    I can just about tell within 20 minutes after entry into a building when mycotoxins are present. There is nothing else that gives me that distinctive hot taste on the sides of my tongue, queasy stomach, headache and sensitivity to the fluorescent lights found in nearly all office buildings. -Shoemaker

    There's some kind of connection between EMF's and toxic mold/biotoxins that I don't quite understand.
    If I'm really clear of mold, I'm not bothered by EMF's at all. To prove the point, Erik (my mold mentor) took me hiking right under the cell phone towers in Truckee (near Lake Tahoe), and we both felt great. He says he's camped there for days and continued to be perfectly well, as long as he wasn't carrying mold contamination with him. -Lisa

    Hi Lisa. I'm 100% free of electrical sensitivity in the absence of the immunological reaction to LPS. What we're talking about here is a cytokine flare. Yours, like Shoemaker's, is triggered by exposure to mold, mine by LPS. It's two ways of arriving at the same place. The fact that your avoidance has led to the elimination of electrical sensitivity and what we're calling recovery, only encourages the same may be possible for me.


    RE the intestinal permeability: I agree with your hypothesis the food rather than the mold toxin that's leaking through the gut and causing the acute inflammatory flare. It's my belief that the role that the mold plays in this is to cause the perforations in the intestines, allowing the food to get out. Pretty consistently, moderate mold avoidance (decent residence, decent air, no contaminated stuff) leads to resolution of food reactivities within 6-8 months. (MCS often declines at this point as well.) Peculiarly though, it's the acute exposures that seem to be responsible, since my food reactivities didn't come back even when I was detoxing like mad in the godforsaken desert. Maybe it's because they were all being sucked up by csm (I did take a lot of it), but it seems to me that maybe it goes beyond that. -Lisa


    That the gut is leaking LPS specifically following meals, yet before the food reaches the intestine leads me to believe the problem is not physical (food passing through perforated intestines) but immunological. That wormwood and artemisinin seemingly inhibit this strengthens the idea in my mind. I've another, more impractical way of disabling this response to LPS that further suggests it to be immunological.

    I'm going to posit that it is at the root: that the reason that our systems initially get so screwed up is because of accumulations of inflammation producing toxins. Mold seems the biggest one: such a high percentage of ME/CFS'ers have such terrible Shoemaker genotypes, and so many (based on our "perceptifications") are living (or have lived) in such awful environments, that the opportunity for toxic accumulations prior to illness seems high. But there are other inflammatory toxins (e.g. mercury) as well. Other toxins (e.g. pesticides) are less specifically inflammatory, but seem to have potential of adding to the toxic goop.

    Exactly why this toxic terrain would lead to the activation of various viruses and other pathogens, I'm not sure. Amy Yasko discusses the idea of their being bound up together, but I've never quite understood that.

    My feeling is that the pathogens (maybe specifically XMRV?) that cause the Th1/Th2/Th17 shift. (Okay, I still don't know quite what the difference between Th2 and Th17 is.....I'm just parroting Gerwyn here.) This is based at least to some extent on my experience that just doing extended detox did not cause my mold reactivity to go down much at all; it was the antiviral that I took after a long period doing detox that did it. And it did it fast - within three days. (That number three again, hmm.)


    If I understand it right: mold/toxin accumulation causes viruses; viruses cause sensitization to mold. I'm at a similar conundrum in my theory, just a slight variation: LPS sensitization messes up redox which allows intracellulars to warp immunity against LPS (and anyything else TH2). So which came first the bug, the TH2 sensitivity, or the accumulation of toxins? I'm guessing the bug but I believe we need to address all three, and perhaps more, simultaneously.
  11. Graeme

    Graeme almost there...

    Messages:
    339
    Likes:
    204
    Montreal
    Hi Joey. These patients at the clinic you frequent, were they on TPN, as in nil by mouth, or simply supplemental parenteral nutrition? IMHO it's only the former that will bring about the full washout of immunity and the proposed benefits.

    As for the wormwood/artemisinin, I'm not sure why I had the response I did. I admit it's unprecedented. I think it relates to my unprecedented sensitivity to Cheney's toxic supplements. Both share the same mechanism that's being measured by his ETM. It also strikes me that the severity of my two most prominent symptoms (electrical sensitivity & fasciculations) is worse that any accounts I've read of. All this while my PEM threshold is relatively high in that I can walk 5 miles without serious repercussions. Which is to say there are many facets to this disease, but the extremity of these aspects in my case leads me to believe they're connected: since my electrical sensitivity and fasciculations are caused by the reaction to LPS, so then maybe the oxygen toxicity/excitotoxicity/redox shift/energy problem is too. For others the trigger might be biotoxins, mold, etc. All of which I believe are capable in those with TH2 dominance of eliciting a cytokine flare.
  12. Wayne

    Wayne Senior Member

    Messages:
    2,174
    Likes:
    1,238
    Ashland, Oregon
    LPS =Lipopolysacharide = extremely pro-inflammatory cell wall substance.

    Is this a correct definition of LPS as it's being used in this discussion?

    Thanks, Wayne
  13. slayadragon

    slayadragon Senior Member

    Messages:
    1,076
    Likes:
    342
    twitpic.com/photos/SlayaDragon
    Graeme, would you please repeat where you think the sensitivity to LPS comes from to begin with? Why, according to your hypothesis, do things get messed up?

    Regardless, I'm going to object to the idea that my cytokine flare is caused by mold and that yours is caused by LPS. My experience is that it's more the combination that causes it. I would like to posit (like you, without anything but anecdotal evidence) that if people get away from toxic mold and outdoor biotoxins to even a moderate extent, the LPS stops becoming damaging.

    I accept the idea that the mold may not be damaging without the LPS. But I have to come back to the idea that people in general always have had some LPS in their systems without anybody getting CFS. (The idea that ME/CFS of the type that people get now has always been around is not one that I believe can be supported, even though people always throw out mild "neurasthenia" cases -- which I believe were caused by mold growing under the wallpaper invented in the 1850s -- to support the idea.) Toxic mold in buildings, on the other hand, actually IS new. So I'm going to argue that the toxic mold is the problem here.

    It's the same thing as the oxygen toxicity thing. If mold + oxygen = oxidative damage, subtracting the oxygen will (to some extent) control the damage. But what a price to pay! If LPS + mold = damage, and the only way to control the damage is by not eating anything, that's a big price to pay too.

    Of course, extreme mold avoidance is life destroying too. It's easier to get the body to dial down the oxygen (our systems seem to do that automatically) and to put a picc line in our arm for the TPN (even if it requires being really careful not to get infected). But I don't think that this gets around the fact that, um, our tissues are meant to be oxygenated and that our bodies are designed to live on food. Those are the basics of animal life on this planet.

    Resorting to less oxygen or not eating in order to manage our CFS is defensible, considering the horrific-ness of this disease. But I don't think it's helpful to lose sight of the idea that the biotoxins that didn't used to be present in the environment -- and that our bodies are not adapted to survive -- are what's really "wrong." Even if we can't avoid them, continuing to think about them may encourage someone to figure out a way that our systems might be better able to process and eliminate them.

    Apropos of nothing in particular, I'm getting a lot of reports from people in the cities around Lake Erie and Lake Ontario of symptoms that are similar to the ones of the Lake Tahoe epidemic (in particular this "sensory storm" type stuff). I'd not heard Montreal before, but I have heard Ottawa. Something weird happens in some towns around large bodies of water where cyanobacteria is growing. It's not that the cyanobacteria itself is so bad. It seems more that it gets into the sewers and converts into something horrible. I don't think it's a coincidence that nearly all the CFS epidemics since the mid 1980s have been close to oceans or big lakes. So even though this may seem like the most extreme measure of all, if I were getting the sorts of symptoms that are being attributed here to LPS on a regular basis, my first inclination would be to try moving from the area to see if it made any difference. Personal preference though.

    Of course, maybe without XMRV, we'd be able to exposures to even really poisonous stuff (LPS or mold or "?"). I'm not holding my breath though. The only success story I've seen so far is that of Jamie Deckoff-Jones and her daughter, who live pretty far out in the middle of nowhere in New Mexico in what Jamie states pretty emphatically is a good house. I'm not surprised that antiretrovirals would help under those conditions, since Valcyte/Famvir helped me a lot in combination with biotoxin avoidance. An addendum to the general principle, not a negation of it.

    Last week I tried some arteminisin, which caused me great pain in my esophagus. This happened to me years ago, when I tried using a supplement with wormwood in it to kill off an intestinal parasite infection. So this seems not to be a good supplement for me. :(

    I was able to take artemisia without problems, but that seems not to do the same thing.

    Best, Lisa
  14. Graeme

    Graeme almost there...

    Messages:
    339
    Likes:
    204
    Montreal
    I think I've number three here.

    One might think I read dozens upon dozens of recovery stories. In fact I've read less than ten. The reason being there aren't many. However, here's another that just fell into my lap. It's taken from the testimonials section of the book, Earthing: the most important health discovery ever?* It's that of one of the coauthors' son; someone who, uncannily like Mike Dessin, almost died from his illness. The emphasis of the story is on electrosensitivity but I think it can be agreed this poor guy was Canadian Criteria ME/CFS. Click on the link below to read his story via Google Books preview.

    http://books.google.ca/books?id=DtQ...wAg#v=onepage&q=step sinatra earthing&f=false

    Also, he talks in the following video of learning to walk and talk again, just like Mike. Looks pretty healthy for someone who was down to 83 lbs.

    http://www.microcurrentinstruments.com/testimonials_med_video.php

    So I'll ask again: what are the odds of three people suffering mysterious illnesses (we'll agree are CFS) coming to the point of starvation, receiving TPN, and recovering, a coincidence?


    *I've become very excited over the last while about the electrical manipulation of redox. By this I mean earthing and ionized water.
  15. Rockt

    Rockt Senior Member

    Messages:
    292
    Likes:
    12
    I think it was Wayne who mentioned in another thread, a benefit from earthing or grounding material under his computer and mattress.

    Wayne, perhaps you can comment, (and where did you get such material, btw?).
  16. fla

    fla Senior Member

    Messages:
    234
    Likes:
    38
    Montreal, Canada
    Hmmm, one thing that struck me in the son's testimonial was the work environment. I also worked for years in a U shaped desk surrounded by 8 CRT's and 4 computers. I suspect an EMF correlation with my symptoms but it's not based on any hard facts. I also have a "gut" feeling that the minor intestinal problems I've always tolerated might be correlated to the symptoms as well. How would one try a three day fast, just water?

    Lisa said: "my first inclination would be to try moving from the area to see if it made any difference". I'm considering renting a cabin in the woods type thing but I wouldn't know how long the test should be. Also how to measure progress since some collateral damage such as low blood volume and POTS would undoubtedly take some time to reverse and confirming slow gradual progress could be difficult without something quantitative.
  17. Rockt

    Rockt Senior Member

    Messages:
    292
    Likes:
    12
    Slayadragon, can you elaborate a little on your use of Monolaurin, (ie. what it's doing for you and where you get it)?

    Thanks.
  18. Graeme

    Graeme almost there...

    Messages:
    339
    Likes:
    204
    Montreal
    Stone's post, taken from the thread "does anybody feel better when they don't eat?"

    ****I definitely feel much better when I don't eat. This was brought home to me very clearly after undergoing "RnY" gastric bypass surgery in 2004. Beginning about two days after the surgery, while still in the hospital, I was amazed that my symptoms seemed to spontaneously disappear (virtually), which was the opposite of what I had expected having undergone other (unrelated) surgeries in the past and the major flares that had always followed. At first I thought the amazing reduction of symptoms was merely due to the big emotional relief from the stress of anticipating a quite dangerous surgery, and having the scariest part behind me. But as I continued to recover from the surgery itself, being on an entirely liquid diet, the near total cessation of ME/CFS symptoms continued, to my utter amazement and joy. This all started well before any major weight loss began in earnest, before any symptom relief could be attributed to weight loss.

    At my 6-week follow up with the surgeon, I happily told the surgeon about the near total remission I was experiencing. The surgeon replied that (get this) he sees this
    happen in most of his patients with Fibromyalgia and Chronic Fatigue Syndrome. When I queried as to why the good doctor didn't mention this to me before the surgery, he said that since it doesn't happen with every patient with my illness, he didn't want to falsely elevate my hopes, which seemed like a reasonable cause for not mentioning this phenomenon to me. The doctor also added that the remission of symptoms usually subsides about 9 to 18 months after the surgery, and cautioned me not to be overly disappointed if this is the case with me as well (as if disappointment could be somehow avoided in such circumstances, lol).

    True to the surgeon's prediction, my symptoms did slowly and gradually return beginning at about 9 or 10 months postoperatively, with a return to my pre-surgery level of ME/CFS symptomatology (minus whatever degree of ME/CFS/FM symptom aggravation previously caused by the amount of excess weight I had lost at that point) at about 15 months post-op. By this time, I was able to take in a good deal greater volume of food than was possible in the months immediately following the surgery. Typically, after the procedure I had done, a person is only able to take in a few ounces at a "meal", an amount roughly the volume of a shot glass or two, depending in what is
    eaten. By about the time a year has passed, one is typically able to take in around 4 to 8 ounces in volume at a meal but this varies considerably from one person to the next and from one food to another.

    Now, almost 7 years later, it is possible for me to eat amounts similar to 'normal' people from time to time, but not consistently, and it depends highly on what the food is, but I would have to struggle to do that. Most of the time, I eat can only very small portions (6 to 20 bites per meal, depending), and I still find that the bypass surgery notwithstanding, I feel much better when I eat much less, as along as I take my vitamin supplements. If I don't take my vitamins, and plenty of them, I'm incredibly
    sick. Now, my ME/CFS is the worst it's been since its onset in 1995, including those first two nightmarish years. I do find that the less I eat, the better I feel. Also, I have recently taken to periodic fasting (for spiritual purposes), and I find this to be a beneficial practice for me both spiritually and physically. When I allow myself to eat at the maximum that I can comfortably eat, even with the reduced capacity afforded by my altered gastric architecture, I don't feel nearly as well in terms of my ME/CFS symptoms as I would if I were to eat a bit less that I am capable of eating or if I am on a periodic fast. I do have to watch that I am taking in enough to maintain my weight, as I do not need to or desire to lose any more weight.

    I really feel this should be studied, in particular the amazing phenomena experienced by myself and many others immediately after gastric bypass surgery. The surgeon actually expected my remission and wasn't surprised in the least when I reported it to him. Food for thought ;-)****


    Am I the only one to find this interesting? That, according to Stone's surgeon, the majority of CFS and fibro patients experience a near total remission of symptoms following gastric bypass? How can this fail to pique curiosity? Well I suppose I'm excited this is further evidence of the theory I posted earlier in this thread: that the spark leading to immune activation occurs within 5-10 minutes of eating, while (as Cort points out in the Logan interview) food should still be in the stomach.

    So two days ( the number I was throwing around was three) following surgery symptoms lift and energy returns -without supplemental B12, CoQ10, GSH, etc. Surely infections are still in place, the difference is the refractory immune system has been calmed. What this spark is I'm not sure. I believe it's in the signaling as the digestive process begins, and the bypass surgery alters this, although not optimally. Which might explain why symptoms usually return between 9-15 months post-op. TPN would halt the digestive process completely while the body is continuing to be nourished. This latter point is of the utmost importance: why would our systems normalize energy while fasting when it has been trained to save energy for the inevitable slaughter of immune activation that'll come with the next meal?

    The other point to address is that the surgery does not induce remission in a minority of patients. Perhaps this can be explained by environmental sensitivities and/or biotoxin exposure, as we've mentioned earlier in this thread. Maybe for some of us this needs to be addressed simultaneously.

    Calm the immune system and nourish the body, the best way to turn the tables (normalize redox) on the pathogen causing the problem. XMRV?
  19. fla

    fla Senior Member

    Messages:
    234
    Likes:
    38
    Montreal, Canada
    There were some Belgian doctors trying to use TPN to treat ME/CFS and they were fined. Googling about it mostly finds non-English articles about the fines and proceedings rather than about the results the patients were getting. I only found this article translated into English and there's nothing about the results except that patients were still trying to get treatment from the suspended doctors suggesting something positive.

See more popular forum discussions.

Share This Page