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A Role for TPN in CFS?

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

  1. Graeme

    Graeme almost there...

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    My experience and experimentation over the last few years has led me to a theory of ME/CFS I can't at the moment prove, and yet can't shake. Truthfully, I've been obsessed with it for the last year. Apparently to the extent I've begun delivering lectures in my sleep. I'd originally intended to write a detailed account of how I'd come to suspect this certain treatment to be integral to recovery, but have since decided to keep my anecdotals to a minimum. A methodical explanation is redundant. I believe the result of two severely afflicted PWC's recovering speaks for itself. However, I'd like to give some reasoning as to why this treatment might work. Of course this is all just my belief, and I may be wrong, so I apologize in advance for presenting it as if I actually understand the minutia of this puzzling condition and how it all fits together. Also, it's too bothersome to continually write "I believe", "maybe", "perhaps". So that said, here's what I think.

    Cytokines are responsible for low energy

    Our cellular energy problem is the result of immune activation. Cytokines are perpetuating the disease by creating excitotoxicity (ET) which burns through cellular antioxidents and deprives us of our ability to handle the byproducts of normal energy production. This is what's causing the oxygen toxicity Dr. Cheney is gauging with his Echo Terrain Mapping (ETM). He also uses ETM to measure universal toxicity among PWC's to a number of supplements. The same supplements that worsen ET in myself: MB12, CoQ10, GSH, vitamin D, fructose, etc. Symptoms of an excited state are very common if not universal in this disease, but why not everybody experiences this worsening of ET when these supplements are taken is beyond me; though I, too, went years without it. What I experience after a dose (if taken while well rested) is a state of excitement that's not at all unpleasant, but does lead to a worsening of symptoms the following day. If it's continued the negative effects take over completely and get progressively worse.

    Wormwood, however, counters this and increases tolerance to the ET substances. It also, when taken for several days, greatly reduces all my symptoms:

    electrical sensitivity (ES)
    fasciculations (muscle twitching) in the arms and legs
    post-exertional malaise (increased threshold)
    cerebral hypoperfusion and cognitive symptoms
    feeling wired
    nasal congestion
    sweaty palms
    "housekeeping" symptoms; GI problems (P 450 decoupling), sore tendons (hyaluronic acid deficiency), and depleted looking muscles (inability to convert to glycogen).

    This corresponds to Cheney's finding a 50% increase in superoxide dismutase among PWC's receiving Artesunate (a wormwood derivative) for three days. And judging from the rapidity of improvement and diversity of cells affected I believe the mode of action here to be as an immunomodulator, not an antiviral. This is not to say there's no boogy man pathogen. I believe there is a complicit intracellular, perhaps several, pulling strings, but the idea it's physically messing with mitochondria in every affected cell is far fetched.

    LPS's role in the storm

    "Ive always noticed that abstaining from food is helpful for me for short periods. On the converse many ME/CFS patients experience a considerable letdown 10 minutes or so after they eat. It seems that food does make a difference but this is occurring long before, one would think, food reaches the gut. Do you have any idea whats going on here?" -from Cort's interview with Dr. Logan


    Another intervention that's been successful in relieving symptoms is fasting for three days -that number three again. In fact this works even more impressively on symptoms than wormwood, but leaves the low energy pretty much unchanged. Symptoms then return within 10 minutes of eating, regardless what. Surely food is still in the stomach, as Cort points out, while this is happening. Somehow the mere act of eating triggers an immune response. Two symptoms that arise in this way and I find especially curious are electrical sensitivity (ES) and fasciculations, both fairly common in ME/CFS. Manmade EMF is ubiquitous outside and inside the body, yet the sensitivity occurs only after the immune reaction following a meal. It's manifestations are systemic, in my case: burning/swollen eyes, skin irritation, a worsening of cognitive problems, arhythmia, and at its worst the inability to sleep. What strikes me here is the diversity of cells affected; it shares the same all-pervasive quality as the energy problem. Fasciculations are curious in that nerves firing out of control seems to indicate ET. Also the twitching is greatly exacerbated with mental exertion (as is ES) and Cheney's PWC-toxic supplements. Furthermore fasciculations can be completely stopped with a good dose of GBL (think bioactive Xyrem) which acts as a GABA receptor agonist, like benzodiazepine, at calming neurons.

    Seeing as all my symptoms appear to be the result of this reaction to eating, why not excitotoxicity? What if ET/oxygen toxicity (Cheney's control point) is the result of, or dependent on, a cytokine mini-storm caused by LPS leaking into the bloodstream, triggered by the act of eating? This being what leads to the redox shift which enables intracellulars to thrive; cleverly evolved bugs that have developed a method of compromising our systems to ensure their survival. And what better or more immediate target for the old TH2 dominant trick than the trillions of intestinal flora? According to Cheney oxygen toxicity is universal in our population. According to the DeMeirleir and Maes studies bacterial sensitization is universal. What I know to be the case is either excitotoxicity causes a leaky gut, or leaky gut causes excitotoxicity. I admit there's a chicken or the egg problem here, but since my symptoms indicative of ET follow eating, I'm betting on the latter.

    TPN as treatment

    Total Parenteral Nutrition (TPN) is intravenous feeding. I think a period of this along with immunotherapy is the key to treating this condition. It would work on two fronts. Firstly, we'd be calming the immune system, just like fasting did. Only now we'd be fueling cells which would replenish and recycle antioxidents in the absence of the costly cytokine storm; thereby normalizing energy and redox, and enabling us to control intracellulars. The second front, and just as important, is the gut. Even after six weeks of wormwood, with an improved redox status, and a 75% improvement of all symptoms I returned to the pre-wormwood state within a few days of discontinuing the herb. And no amount of gut modification made any difference. I believe the reason for this is the system is still sensitized to good and bad bacteria in the gut, and the bad bacteria likely has an ongoing aggravating effect on mucosa that hinders recovery. Complete relief from the antigen, in the case of good bacteria, will weaken the immune response. TPN would accomplish this. Some bad bacteria cannot be eradicated while being fed, just as one can't effectively manage candida on a diet of Toblerone. Sulfate Reducing Bacteria are an example of this. Starvation along with immunotherapy is the only way to control these guys. Another bonus is that gut health mirrors the health of the entire system, so while you're normalizing cellular energy you enable the changes in the gut to take place.

    However, the proof may be in the pudding. The following recovery stories share similarities I believe critical to success in treating this disease.

    http://aboutmecfs.org/Story/MECFSRecovery.aspx
    http://www.noeticholdings.com/ken/

    What are the odds of two individuals suffering severe ME/CFS, coming to the point of starvation, receiving IV nutrition/TPN, some immunotherapy, and recovering, a meaningless coincidence? Calculate the odds of: the near zero recovery rate of this degree of CFS after several years, factor in the perverted notion of sick people starving themselves, and cross that with the extreme rarity of a therapy few outside those suffering the worst forms of Inflammatory Bowel Disease are likely to ever see. To my mind it's worth a try. Though I'd throw in some GcMAF, Enzyme Potentiated Desensitization, and eventually copious and assorted probiotics, too.


    Two interesting points:

    -According to Dr. Cheney autism is an oxygen toxic disease as well. It's also a leaky gut disease.

    -The Norwegian B Cell depletion discovery is compatible as it would pretty much cripple humoral immunity's soldiers (B Cells), weakening the response to LPS, and thereby strengthening energy and redox. Of course when the cells come back they bring their old habits with them. As long as the antigen is still around the immunological flare will ensue.
  2. ukxmrv

    ukxmrv Senior Member

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    I just wish that fasting had worked for me. I'm XMRV+ and fasted before in the past. The only result was vomiting, fainting and a downturn in my health. Artusenate is something I am currently trying but no positive effects so far.

    For much of my time with ME (acute viral onset) stomach problems didn't feature highly at all. I've done so much on diet and it's been the area that has returned the least results.

    The internet is full of stories of people recovering but we don't have enough data on what they were suffering from. Regardless, we are all different and it may be an individual effect.

    I don't think that you should apologise at all for presenting theories and talking about your own experiences. There may be others in the same boat who can gain from this.

    XMRV+ in the UK
  3. Wayne

    Wayne Senior Member

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    Hi Graeme,

    Thank you, thank you, thank you for your post.

    I'm having a hard time replying to you because the message board keeps telling me my message is too short. I'm trying again to see if it goes through. If so, I'll try a longer reply later.

    Thanks much, Wayne
  4. Sasha

    Sasha Fine, thank you

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    I get that message sometimes, Wayne, even for a long message! If I log out and log back in it seems to fix it (you can of course copy your text before you log out and then just paste it into a new message once you log in again).
  5. Michael Dessin

    Michael Dessin Senior Member

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    Hey, I guess I'll comment too since my story was mentioned and pertaines to Graeme's orignal post.

    I agree with a lot of the comments/assesments Graeme made, especially the biological issues with the disease. One big issue that affected me the most was lactic acid build up in the nervous system, especially the brain...this lead to all kinds of chaos for me including dementia, which is an issue for many of the patients in the most severe stage of the illness.

    I think detox is great and alone can help many patients, at the same time detox may be too difficult for many of the patients, due to the fact it is sooo difficult for us to detox like normal people. Ultimatley toxins and virus thrive on eachother and for the most part they usually have to co-exist..so targeting one or the other should bring about relief. However its alot easier said than done. The best route to go would be modulating the immune or nervous system as a whole.

    Unlike the 1st story..Celiacs and lactose intolerance were not primary issues for me but secondary effects of ME as a whole. I have no problem with wheat or dairy at the moment but at my sickest they were intolerable. Also, it seems the person in story one had his gull bladder removed which brought him relief, which might have been causing his problems to begin with. I also have severe neurological ME and viral as well, not sure if thats the case for subject one on Graeme's post.

    Unfortunately it doesnt seem there is one treatment that fits all...whether it be Ampligen, stem cells, neural therapy, cranial work, general detox..e.t.c...all of which folks have had some recovery from doing and some not.

    I wouldnt recommend fasting but were all different and thats a personal choice. Fasting tends to release alot of toxins from fat as fat burns off and can over burden the body, which may create more problems as detoxing is already difficult. Were not like normal folks, all the stuff mentioned in story one that helps many people get well can create real misery for true ME/CFS patients so always be very very careful with any detox.

    Mike
  6. slayadragon

    slayadragon Senior Member

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    I think you're right on target with a lot of this, Graeme.

    I've encountered a number of people who state that fasting improves or in some cases even wholly controls their ME/CFS symptoms. This is especially the case with the "sensory storm" type symptoms. Some people just eat every other day, others go for long periods of time just eating a few foods. In some cases, they can find just one or two foods that don't trigger the response.

    I have been thinking about TPN as well, for the same reasons you're discussing.

    If you substitute "toxic mold" and "toxic cyanobacteria" for all your mentions of "food," then you will have more of a sense of the experience that I (and other people who have recovered from ME/CFS through biotoxin avoidance) have.

    What I'm thinking about is that there is a boatload of research that suggests that a combination of Stachybotrys (the toxic mold that seems associated with ME/CFS) and various LPS-producing bacteria is far more damaging than either one alone.

    So if you remove the Stachy from the mix (as I do), then food becomes harmless (which it is for me).

    But if you still have Stachy exposure, then attending to food will provide some relief.

    Note that the "three days till recovery" is what happens with mold avoidance too. That's how long it takes the system to reset.

    On another note, trichothecenes (chemicals made by Stachy and certain other toxic molds) create perforations not only in the intestines but also in the blood brain barrier. This especially becomes problematic with gluten, which is highly inflammatory for people susceptible to it. If the Stachy tears up the gut, the gluten gets out; and with the perforations in the BBB, the gluten gets right in. "Neurological" gluten intolerance (like, I think, "Neurological" Lyme) is related to the BBB perforations.

    You and I should chat more, I think. This feels very very close, to me.

    Thanks much for your post.

    Best, Lisa
  7. Wayne

    Wayne Senior Member

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    Hi Lisa,

    I was hoping you would notice this post, as it seems to be very close to your way of looking things (mine as well). I think you're spot on with your above comments. I want to post more here soon, but for tonight, I just wanted to briefly mention something you may find interesting.

    A friend of mine, who has MCS and is highly mold sensitive, described to me recently how he experiences various kinds of exposures. He shared how his brain would "feels on fire". In the past, he discovered that eating meat as soon as possible after an exposure was one of the best ways to begin to put this fire out.

    Just recently however, he discovered that taking a teaspoon of curry as soon as possible after an exposure worked almost miraculously for him. He said it calmed his brain down much quicker than anything he had ever tried before.

    I've heard reports about curcumin being widely used in India, and that they have very low rates of Alzheimer's disease. I've read other reports about the neuroprotective aspects of curcumin and curry. This makes me wonder if you've ever tried curry or curcumin to ameliorate some of the effects of your mold exposures.

    I'll try to get back tomorrow sometime.

    Best Regards, Wayne
  8. mojoey

    mojoey Senior Member

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    Thanks Graeme. Like Lisa, I can completely relate to what you're saying here, although my long response to you yesterday got deleted when i x-ed out the browser for no reason. Talk about cognitive impairment. I'll try to recall the main points:

    I've had some of the same thoughts about fasting, but the verdict hasn't been clear to me because the benefits of lowering LPS are often muddled by the hypoglycemia. Of course, if we all had access to IV nutrition (aka TPS) the hypoglycemia issue might be moot. There have been several patients in our office that end up relying on IV nutrition, but by that time they're usually so malnourished and underweight the benefit of lowered inflammation might also become overlooked. However, I think an analogue without complications of needing a PICC line and also without the hypoglycemia issue is an enema. Here's why I think so:

    My secretory IGA in my latest metametrix stool test is much higher now than it was back in 2008 (from 40 to almost 200), yet my noticeable reaction to LPS and food restrictions are much higher. My anti-gliadin IGA has gone up as well, although it's still within about 60th percentile. When I tested it back in 2007-2008, I didn't show any antibodies and could practically eat gluten without any issue whatsoever. For the record, I had acute infectious onset back in 2006, so I practically went through 3 years of being severely ill without anywhere near my current level of gut inflammation. The interesting thing is my C4a was 28,000 (very high) in 2008, so it's not like my proinflammatory state was a sleeping giant. I've been doing regular water and coffee enemas since 2008. Nowadays when I do it, my symptoms temporarily go away. It's the only therapy I've ever done that makes this happen, and I've done just about everything. It's not a cure by any means, because the symptoms come back by the next day and it's not even like a 2 steps forward, 1 step back: over time the symptoms really haven't changed. However, the value in doing them is telling me just how important resolving the gut inflammation is. It certainly does seem like proinflammatory conditions are always one-way roads, at least spontaneously, and resolving them always requires aggressive measures whether using immunosuppressive therapies, extreme fasting, or extreme mold avoidance. Even then, Lisa will tell you that as soon as she's back in a moldy environment her symptoms come back. The only therapy that seems to have long-term potential IMO is a combination of immune modulation and, perhaps, antiretroviral therapy especially if the retrovirus(es) are the cause of the "smoldering" nature of the cytokine response and hence making it more or less constantly upregulated.

    Regarding artesunate, I wish more patients reacted like you did to that. Chronic lyme and CFS patients have been taking arteminisins for years without reporting any significant changes, myself included. However, that doesn't mean it's not a necessary part of the puzzle. Artesunate does work both as a direct antiviral (for herpes) and both artesunate and wormwood as anti-parasitics, and that's why it fits so well into Cheney's model of attacking the bug + inhibiting redox (which I think you interpret as balancing th1/th2). By the way, Cheney's patient told me that adding butyrate to artesunate makes it much more potent, but iron intake needs to be eliminated/reduced on this protocol. Definitely do monthly liver panels on this
  9. slayadragon

    slayadragon Senior Member

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    I've been doing coffee enemas just about every day during the past three months, since I've been living in Chicago (meaning in civilization rather than in the Godforsaken wilderness where there's no toxic mold/cyanobacteria/etc.).

    These are really helpful for addressing gall bladder issues (I cleared a whole lot of black mucus when I first started), which are a big problem in mold poisoning. And since I've been continuing to "push" detox over the past months, it may be that continuing to move toxins out is helpful. I feel dizzy and hung over a lot these days, and the coffee enemas do reduce those symptoms. (I tend to think that those are more detox than inflammation, since I never had them when I was bedridden with CFS nor when I now get acute mold exposures.)

    But I think that what Joey's saying makes sense too. Perhaps what they're doing is compensating for the biotoxin exposures that I'm getting. Not a cure - I'm gradually slipping back down again regardless of doing them - but certainly more helpful in giving me immediate improvements than anything else I've tried except Vitamin C IV's (which decrease oxidative stress).

    Does it make sense that some foods would be more acceptable than others? I recently interviewed a woman (Lake Tahoe epidemic in 1980s, sick until just a few years ago) who attributes her near-full recovery to extreme gluten avoidance (e.g. making sure to not use the wrong toothpaste or open the wrong can of dog food). She also did Yasko for three years, a lot of antibiotics and some other stuff, but thinks that the gluten is what made the difference. I'm putting a quote below.

    She sounds just like me with the mold, in terms of how obsessively she must follow this in order to remain well. But she is eating some things - just restricted. Is there a reason why some foods would be more acceptable than others, according to this theory?

    A long time ago, when I still was actively sick, I was quite stringent with my diet in terms of a variety of foods. (Oddly I never thought gluten made much of a difference, but maybe it's like mold: if you don't get down to the last speck, the benefits are minor.) After mold avoidance, all foods became tolerable.

    What would be nice would be to do moderate mold avoidance and moderate food avoidance, but it doesn't seem to work that way. It's seeming like it's one or the other: moderate mold exposure (I don't think anyone can live in a really moldy place and get better) + extreme food avoidance, or no mold exposure + eat whatever you want.

    I have some arteminisin that I'd not yet experimented with. I'm going to try it for the next few days to see what happens. What dosage should I take?

    Thanks for your comments here.

    Best, Lisa

    *

    Following a gluten exposure, Sue often remains affected for a few days. “It might actually be longer than that, maybe at most a week,” she said.

    After giving up gluten, Sue experimented with eliminating other foods. “It was a matter of finding foods my body could tolerate,” she said. “Mostly I eat protein and vegetables. Zucchini and lettuce are good. And carrots. There’s a breakfast I make with whey protein, blueberries and egg whites. But my body doesn’t like any kind of grain or night shade vegetables. I stay away from fruits, except berries. Watermelon is terrible. And MSG doesn’t agree with me at all - my brain is very sensitive to that.”

    Sugar is particularly damaging for Sue. “Sugar will bring me down,” she said. “I crave it constantly, but it makes me feel terrible. It causes inflammation and suppresses the immune system.”

    Whey powder has been particularly helpful. “It’s easy to digest, which I need,” she said. “I notice within 20 minutes after taking it. My body really needs it.”

    Looking back, Sue thinks that giving up gluten and various other foods gave her 80% of her total health gains. “I had to have that,” she said. “I never would have gotten well without it.”
  10. slayadragon

    slayadragon Senior Member

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    After reading your note last night, I decided to take five capsules of Pure Encapsulations curcumin (500 mg each). I'd used this before and never thought it made much difference, but it felt like it was time to give it a real try.

    Usually right around the beginning of November is when the weather effect (what Erik calls "suicide season") kicks in, and last night was the first rainy day in a couple of weeks. And it was starting to affect me.

    I still feel really crappy today. But maybe I'd be feeling even worse if I hadn't taken the curcumin. I'll keep experimenting.

    I do find that I do really well with meat in general. And most of the people I've interviewed who've recovered from this disease also rely on meat as a main part of their diet. I've not noticed its helping as immediately as you suggest, but I'll try that too.

    What does help a bit is sugar. I've been relying on that way too much since being back in Chicago, and clearly I should stop. :(



    Per Graeme's comment:

    >Two symptoms that arise in this way and I find especially curious are electrical sensitivity (ES) and fasciculations, both fairly common in ME/CFS. Manmade EMF is ubiquitous outside and inside the body, yet the sensitivity occurs only after the immune reaction following a meal. It's manifestations are systemic, in my case: burning/swollen eyes, skin irritation, a worsening of cognitive problems, arhythmia, and at its worst the inability to sleep. What strikes me here is the diversity of cells affected; it shares the same all-pervasive quality as the energy problem.

    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.

    If I'm in a really moldy building, I get just as sick in the middle of nowhere as in civilization. After my car and stuff got doused with the "?" (some kind of insanely bad outdoor biotoxin) in Lake Tahoe, it continued to make me extremely ill even after I went way outside of cell phone range in Wyoming (in a place where grizzly bears came right up to the campground).

    However, I don't think it's a coincidence that the places that felt super good to me ALWAYS were right outside of cell phone range. Even though my car/trailer/stuff remained just as contaminated, getting far enough into the wilderness pretty much erased the effects as long as the contamination was just moderate. I had good reason to notice this too, since if I could have found a super-good place with cell phone reception (and a Starbucks within commuting distance....well, I can dream!), I'd have stayed there indefinitely.

    So manmade EMF is not ubiquitous outside the body. (I didn't have any electricity running in those good places either.....just the laptop, when I had it on.) You just have to look really hard to get away from it. But I think that you're right that there's some kind of interaction going on.

    When did Lake Tahoe get cell phone service installed???

    I'd like to read more about EMF's, in terms of how they might fit into this. Someone gave me a massive list of articles at one point, but suggestions on where to start would be great.


    On another note, if we're talking about things that have helped acutely, the one thing that's had the biggest effect on me recently was taking three pellets of Lauricidin (coconut oil derivative). I felt almost catatonic for two days. Then I felt 100% well (much more energy/exuberance than a normal person my age, but in a good way) for a day, even though I was getting lots of mold exposure and not doing anything else special. Then I went back to where I was before (the mild/moderate chronic fatigue without other CFS symptoms that I tend to have these days when in "civilization" - better than three years ago, but by no means truly well).

    Whatever the Lauridicin did, it reduced the inflammation down to zero. But it didn't last. Guesses as to what happened?

    (Despite having been on full-strength Valcyte/Famvir for a year, my herpes virus levels are still extremely high. I assume other relevant viruses are as well.....)

    Thanks, Lisa
  11. slayadragon

    slayadragon Senior Member

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    This thread is circling around all the issues that I currently think are important, so I keep coming back to it.

    Recently I realized that some probiotics are pro-inflammatory and some are anti-inflammatory. The Lacto ones (the most common) seem to be pro-inflammatory, I think.

    Would driving the pro-inflammatory ones out by supplementing large amounts of anti-inflammatory ones be effective for us?

    One thing that I've done recently that seems to be of value is to start on a probiotic called ThreeLac. The name is misleading, since it has no Lacto probiotics in it. It has enterococcus faecalis, bacillus coagulans and bacillus subtilis. Unfortunately, I can't find a lot of info on these particular probiotics on PubMed. (It is made in Japan, and I can't find much non-scientific literature either.)

    The other probiotics that people suggest for us (in terms of anti inflammatory) are VSL#3 and MutaFlor. I've actually heard negative reports about the former though. MutaFlor is a Cheney recommendation, but I'm not sure if people think they've benefited.

    Is there anything else creative that we might do to address the intestinal issues without starving ourselves?

    Thanks, Lisa
  12. Graeme

    Graeme almost there...

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    UKXMRV, you raise an interesting point about fasting. It's not surprising it didn't work for you, just as it didn't work for Mike or Ken. What's more, in the past two years it hasn't worked for me either. I attribute this to P450 decoupling -Yeah, I've drunk the Cheney cool aid. P450 lines the GI tract and as Cheney explains, becomes decoupled under low energy conditions. This produces superoxide, causing more oxidative stress for the mucosa to the point, I think, leaking can no longer be halted with fasting alone. Still, that it turned around for Mike and Ken heartens me. Mike ended up on IV nutrition because his throat was swelling up after meals. This started happening to me two years ago while I was reaching new lows. I've discovered as long as I stay within my limits the swelling doesn't occur, but a warmth through my gut remains and is felt from time to time since fasting ceased to render results. It's gotta be... P450.
  13. Graeme

    Graeme almost there...

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    Hi Lisa, thanks for your support. You're one of those I was hoping to interest in this idea. Mold and biotoxins have piqued my curiosity for some time. In fact reading a post of yours about six weeks ago prodded me to revisit Shoemaker's site and subsequently my doctor's office for a RX of cholestyramine. Regretably it's still in my wallet.

    I originally shelved Shoemaker because of the result of a fasting experiment. Both he and Leo Galland posit similar ideas about biotoxins being absorbed as the result of toxic bile. Dr Galland's version has it this bile is causing gut irritation leading to hyperpermeability and bacterial sensitization. Although plausible I don't believe it to be the case with me. My experiment was simple: fast until symptom remission and then do a Hulda Clark liver flush. Everything went as expected but it wasn't the bile-inducing olive oil/grapefruit juice cocktail that brought back the symptoms but the dry lettuce I consumed some hours later. I've repeated this several times with different foods; cucumber, rice, etc., always the same thing. It's the act of eating, not what's eaten or toxic bile that causes the leak. Perhaps the gut's immunity is cranked up in anticipation of possible incoming pathogens, or maybe a circulating cytokine is drawn to the gut with the blood shunt following a meal, or some combination of this and bile... I don't know. The fact that wormwood has eliminated this reaction to a large degree implies it's a cytokine thing. NFkB? I've tried other NFkB inhibitors without real effect.

    I recall your pointing out recovered individuals often having had symptoms stretching back to childhood. Though not yet recovered, you can count me in as well. I've suffered the cognitive effects of this disease all my life. I remember despising the flourescent lights in my kindergarten classroom -a flat roofed building, you might be interested to learn. Also, I could never run longer than 5 minutes without getting winded. Plus a whole lot more. Sadly I wouldn't experience a clear head until I was 32, after giving up carbs and eating prodigious amounts of garlic (fixed 75% of the fog), then starting wormwood (the remaining 25% +energy). I've considered the possibility I've that genetic succeptability to mold detoxification Shoemaker speaks of. My aunt fell ill with mold illness and shut down the Nova Scotian high school she was working in at the time. Incidentally, my elementary school was only a few doors down from our house, growing up. Two other young people on our street, one a child, would go on to develop CFS. Chances are they went to that school, and there are only about eighty houses on the street. Also, my brother and sister seem to have some ADD-like cognitive symptoms, though not to the extent I've had. Shit, now that I write it all down, I think I might fill that RX, or find a sanctuary. Still, I'm pretty sure my cytokine storm comes from within, though perhaps complicated from the outside: molds, EMF.

    Interesting what you say about most probiotics being proinflammatory. I've yet to find one I tolerate. They all produce excitotoxicity in me, VSL#3 and Mutaflor included. I don't allow myself to worry about it now as there's nothing I can do other than watch my diet -just meat and low starch veggies. I believe we're sensitized to good and bad bacteria alike; LPS shouldn't be in the bloodstream and the only way to stop this is by plugging the leak and desensitizing. TPN may be the only way of accomplishing this. With NAET and EPD, therapy is followed by strict avoidance of the offending substances. I don't think it should be any different with gut flora.

    Concerning EMF, who knows where to start. That reputable researchers like Cheney, Pall, and Klinghardt believe it to be a factor, coupled with my personal experience, leads me to chills when I think about the flare of CFS, fibromyalgia, and autism in recent years. Both Cheney and Pall speak of EMF's ability to upregulate NFkB. That could be enough. And of course Cheney has shown cell phones to be deleterious to cellular functioning.

    Thanks again, for showing interest and for your input. I'm confident there's something to this so let's keep the ideas flowing and see if we can't find some maverick doctors out there to try this out. Graeme
  14. slayadragon

    slayadragon Senior Member

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    I thought all day about this thread, and in particular whether all the things discussed on it might be pulled together into some kind of overall treatment strategy.

    It seems to me that the reason that most people with this disease fail to get better is not because they're not doing the right things, but because they aren't integrating them in the right ways or in the right order. That's why I've been doing interviews with recovered people: to try to get a sense of what they did. I'm not done with the interviews yet, but putting together a vague theoretical model still seems like it might be worthwhile (with the assumption that it's all tentative).

    The first comment comes from Joey, and the idea that the inflammatory response almost invariably gets worse over time. The question is: why would that be?

    The one thing that I think is clear about this disease is that toxicity builds up over time. Even those who aren't sure that toxicity is at the root of the disease seem to buy that (e.g. as a result of the P450 decoupling).

    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.)

    This next part is the biggie in terms of our getting well.

    Erik stated long ago that it was his observation that the body did not like to release toxins unless it is in a pristine environment - meaning one that is good enough for inflammation to be damped down. I found this to be extremely accurate, and others who have done mold avoidance report it as well. "Pristine" varies from person to person - some people need to be in a much cleaner place than others, in order to get the inflammation under control. Just being anywhere outside of a bad building is good enough for some people (which, I think, is why some less sick people do okay on csm). But for people who are hyperreactive (as a result of a lot of toxic accumulations and a lot of viruses), something more is needed. If you push it in a bad environment, the results are both extremely painful/damaging as well as really ineffective.

    This is why I spent so much time in the Godforsaken wilderness. From six months after pursuing moderate avoidance (living in a mildly bad apartment in Chicago, after having gotten rid of all my contaminated stuff), I was doing moderately okay. Not full functioning, but at least more at the low end of qualifying for the CCC. But I was sort of pissed at the time, because I still hadn't recovered cognitive functioning (which is why I wanted to get better to begin with). And after I got some experience getting really clear and realized just HOW toxic my body was, it seemed like it had to be a good thing to get those toxins out. It really was a leap of faith though.....which is why I keep saying that it was a trip down the rabbit hole.

    I am as surprised as anyone that it actually worked. After 18 months of super-intensive detox (plus a prior additional year at a much less intensive clip) and a year of Valcyte/Famvir, I now can detoxify fast even in a moderately bad place. My cognitive function returned, I can take a lot more toxic exposures without getting sick, and the symptoms are milder and more short-lived when i do get exposed. Hopefully if I continue on, I will get more improvements.

    The problem here is that this exercise was a whole lot of trouble. And considering that (according to Erik) the environment keeps getting worse, it may be hard for people to find anywhere that's good enough for sick people to get better.

    That's where I think the things we're talking about on this thread come in. If there are ways to get the inflammation down other than eliminating every trace of biotoxins, then people should be able to detoxify effectively without having to go out in the wilderness to do it.

    The most interesting idea to me is Ampligen. As far as I can tell (and I'd like to interview some people who have gotten a high degree of improvement on Ampligen), so far it's just been used as a treatment by itself. People feel better because their set point for getting an inflammatory response is higher, which means that they can tolerate more exposures to mold (or whatever) without its getting turned on. The inflammatory response doesn't go away entirely, meaning (I would posit) that people living in really bad environments aren't going to get benefit from it. But for a lot of people who aren't already trying to survive in a place that's much higher than tolerance already, the shift from the drug seems enough to cause the inflammation to be much lower or to (at least at times) be damped down.

    What I'd like to see is Ampligen used not as a treatment in itself, but as a "control point" to allow long term gains. In theory, Ampligen should allow people to get to a point of zero inflammation without going into the wilderness (e.g. living in a decent building in a decent area without a lot of contaminated stuff). They then could use that opportunity to do supercharged detox (helped with csm, methylation supplements, pyrrolia supplements and other things that I've found helpful). This is not fun, meaning it's a leap of faith - most people want to enjoy life when they start to get better, not go deep into a state of (as Erik puts it) being "zonked-out immobilized semi-comatose groggified." But if the goal is to get a life back permanently - meaning going back to pre-illness - I think that process is necessary.

    Eventually after a lot of detox (the amount of time varying by the extent of toxicity), it should be easier to kill pathogens. (My interviews so far suggest that some kind of bug killer is helpful here.) The the baseline inflammatory response should be lower, meaning (eventually) that Ampligen can be discontinued and detox still continue. And then eventually detox should slow (which mine actually has.....the leftover pathogens seem to be the main problem for me now), and everything should reset. Not that it's necessarily bad to stay on Ampligen forever, but it's sort of expensive and - more importantly - to my knowledge hasn't resulted in any returns to total wellness even for those it's helped.

    Insofar as Ampligen isn't available or seems like it's not enough, TPN could be another way to get the inflammation down enough to get the detox process going without venturing into the wilderness. Or maybe just some kind of extremely rigorous diet (like Sue's) could be enough. And anything else that reduces inflammation would be a good thing to add. Maybe arteminisin. And I'd highly recommend Vitamin C iv's as a way to get a little bit of a shift. They don't seem to do anything for people unless they're already right at the edge, but they can be really helpful to get that little extra nudge. Remember: it's the last little bit that counts. Even a small amount of inflammation screws up the whole thing, especially in terms of the body's ability/willingness to detox. It's got to be really damped down, in our experience.

    (Erik's done a lot of detox and decreased his reactivity somewhat as a result of just being in clear places and taking some doxy. But it's my experience that it happens a lot faster and more effectively if the csm, supplements and bug killers go along with it.)

    I need to go visit Jamie and Ali to confirm my belief (based on corresponding with Jamie) that they're currently living in a really good place. (And it's been long enough since they moved from the place where they all got sick that any contamination of their stuff would have died down.) The problem with going straight to any sort of antiviral seems to be the inflammatory flare on the front end, so this would not be my first choice of approach. I was happy to see that they are taking Deplin (the same thing as Folapro/Metafolin) and B12, since those should encourage detox. Jamie's in touch with Ritchie Shoemaker, so perhaps they will experiment with csm at some point too. In any case, it's a really interesting experiment that - I think - is not at all consistent with how I'm looking at things at this point.

    RE the cytokine storms coming from within the body: most people never get clear enough of the mold to get really damped down. It takes some effort, when people are first getting started. Even if people are in a good building in a place with good air, most have their contaminated stuff from their old bad place with them. That's a game-ender right there. And just going into a bad building for five minutes can (without decontamination) keep people upregulated for a week or more (e.g. if it gets on a pillow that's not washed). I don't have to think about those small exposures any more, but I certainly used to.

    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.

    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.

    Probably as I do more interviews with recoverees, this "template" will get more refined or perhaps even change entirely. If I had to start over again though, I think I'd look for a doctor in a good area who could prescribe Ampligen for a year on the front end. The money would be worth it to get a start. But I don't think I'd venture to Lake Tahoe to do it. Erik does okay there because he's prepared to decontaminate every time he runs through a plume, but (especially before reactivity goes down) that's a dangerous game. And even he doesn't much go to Truckee now, since it's gotten a lot worse in the past year or two.

    (When's Peterson moving to Reno? Except occasionally during suicide season, Reno's pretty safe.)

    BTW, Joey, I think this answers your question. Once you get the decrease in reactivity as a result of the Ampligen, mild-ish exposures even to the "?" don't push people past the threshold needed to trigger inflammation. Being in the wrong place at the wrong time in Incline Village - or, more likely, going back to a really moldy house - certainly would do it, but (since the plumes are shifting/scattered and no one's looking at the moldiness variable) I can understand why no one's picking up on it.

    More thoughts please. I really like this thread.

    Best, Lisa
  15. Enid

    Enid Senior Member

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    Thanks for this interesting thread. Not much to contribute as it all gone through in a haze jumping from one thing to the next to try to ease. Now I can follow along your experiences - many thanks.
  16. globalpilot

    globalpilot Senior Member

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    Ontario
    I know the individual in the second post

    My fiance knows the individual, Ken, in the 2nd recovery story. He did recover but had to maintain a a very strict diet. And last time we spke to him which was spring 2010 he had relapsed and was down to eating very few foods.





  17. slayadragon

    slayadragon Senior Member

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    I gained a lot of relief at one point during my illness through food avoidance. Those foods continued to make me sick until the very (prior to mold avoidance), but regardless of what foods I ate, my condition declined over time.

    I think that's the likely course of all food-based interventions. It seems like they're a compensation for deeper "terrain" problems (meaning whatever kind of toxicity.....not necessarily biotoxins). Insofar as toxins continue to build up, the compensation strategies are going to be increasingly less effective.

    Sue (the gluten avoider I mentioned earlier) got well after three years of full Yasko (a more intensive version of Rich's protocol), a lot of antibiotics, and a course of Valtrex. (She was aware that she was sensitive to mold and had been living in what seemed to her to be a good house - she got it tested to make sure - for 5+ years before making any improvements.) Whether the gluten avoidance would have helped her earlier in her illness, before she did those things, remains unclear.

    I would think it would have helped her somewhat at any time. But whether it would have reversed the course of her illness or gotten her close to full wellness is another question.

    I think that food avoidance can lift people up from the level that they're at. But if they want to make further gains, I think that altering the terrain (in terms of toxins or pathogens) is necessary. And if they continue to get toxic exposures, all the food avoidance in the world is not going to help them.

    Best, Lisa
  18. Michael Dessin

    Michael Dessin Senior Member

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    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.
  19. Wayne

    Wayne Senior Member

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    Environmental Health Center - Dr. William J. Rea

    Hi All,

    I’ve been meaning to put more attention on this thread, but keep getting my attention and energy diverted. I did run across an article in the Townsend Newsletter that touches on a number of topics in this thread. These articles are usually accessible online about a month after they’re first published on their website.

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

    by Jule Klotter, November 2010 Townsend Newsletter

    The Environmental Health Center (EHC) in Dallas, Texas, has developed a multidimensional treatment that helps people disabled by environmental mold exposure return to normal life. The treatment is the subject of a 2009 published clinical study conducted by EHC founder William J. Rea, Yaqin Pan, and Bertie Griffiths. Twenty-nine patients, aged 12 to 70 years (average age 43) took part. All but one regained normal functioning by the end of the study.

    Most of the participants had elevated tricohecene mycotoxins (n = 24) at the beginning of the study, according to urine analysis. In addition, six had elevated aflatoxin, and two had elevated ochratoxin levels. At the end of the study, aflatoxin and ochratoxin were undetectable in all affected patients. Tricothecene mycotoxins were undetectable in 22 of the 24.

    Treating mycotoxicosis is complicated because both the patient and the patient’s environment need to be treated. People cannot recover from environmental illness if their bodies are being continually assaulted by molds and chemicals in their home and work environments. EHC has become expert in making buildings more acceptable to sensitive patients. Rea has written a book, “Designing and building a Health home or Office”, on the subject.
    .........................

    Reducing a patiebnt’s body load of molds, mycotoxins, and toxic chemicals iinvolves several therapies. ..... Food sensitivity complicates the use of otherwise-beneficial nutritional supplements because patients often react to supplements made from a triggering food. Dose neutralization injections lessen reactions to offending foods. Dose neutralization also reduces reactivity to chemicals and molds. In addition to these measures, exercise, massage and the use of an environmentally clean sauna are part of the treatment. Finally, activated charcoal, cholestyramine, and anti-fungal drugs are used as needed.

    [Note: The above is less than half of the original article. I tried to focus on the highlights when typing this up]
  20. mojoey

    mojoey Senior Member

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    Hey Wayne,

    I just subscribed to Townsend but can't find that article on the website. Can you link me to it or PM it to me?

    I'm curious if CSM helps dump the gallbladder dump bile in the process of binding? My indigestion has hit bottom lately because of a sluggish gallbladder/small intestine and I'm wondering if this will help. I've taken activated charcoal and other non-soluble binders but they haven't helped at all.

    II'm wondering what the main treatment in Rea's study was? Was it just living in a mold-free environment? Lisa had told me about the tricohecenes as a possible diagnostic marker in addition to XMRV+ and CCC criteria, so this is really interesting. Also, what are dose neutralization injections? It sounds like a physical form of NAET, but doesn't injecting foreign substances into your body usually trigger an attack not a desensitization

    Either way I'm really interested in reading the finer points of this article. Thanks for posting Wayne!

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