1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.
  1. slayadragon

    slayadragon Senior Member

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    I just watched a movie called "Fat, Sick and Nearly Dead," about a couple of chronically ill guys (urticaria/hives, obese) who did extended juice fasts and regained great health.

    http://www.youtube.com/watch?v=Gv3vEXy_EwU

    Along with another recent report, it's seeming to me that urticaria must be a disease of toxicity (scary since some really toxic drugs that diminish T cell functioning are used to treat severe cases).

    Since CFS also seems a disease of toxicity, I'm wondering about whether juicing is appropriate for this condition.

    Is there something specific about CFS that makes it different? I wonder what that is, if so.

    FYI, I also have read a lot about the Gerson Therapy, which uses juicing along with coffee enemas, a few cooked foods and some specific supplements. Here is what their book says about CFS:

    >People suffering from the series of symptoms identified as CFIDS or CFS get along just fine on the Gerson program, but they should see significant improvement after a short time, with recovery after about nine months. These Gerson Treatment participants are allowed to have the full 13 glasses of juice daily if desire.

    >CFS patients commonly feel worse after taking enemas in the early stages of treatment because of toxicity escaping from their body cells. Two enemas daily are normally suggested initially, working up to four.

    >Too many enemas can trigger strong adverse reactions. And patients with chronic fatigue syndrome tend to experience extremely strong emotional responses, such as depression and crying, during and between reaction periods. From a psychological perspective, they often present difficulties in management.

    http://www.amazon.com/gp/product/B0...&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846

    Has anyone tried doing a juice fast, the Gerson Therapy or anything similar? How did you/they fare, if so?

    Thanks,

    Lisa
    vli likes this.
  2. Wayne

    Wayne Senior Member

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    Juice Fasting (with Kefir)

    Hi Lisa,

    I've had a fair amount of experience doing juice fasting, going back over 30 years. When I first started doing juice fasts (before CFS), I thought it was a miracle how I felt so much better than when I was eating solid food. Looking back, this experience seems to indicate I already had significant difficulties with digestion, and was, at least in part, setting the stage for my later developing CFS.

    I continued to do juice fasts over the years, but noticed I had much less stamina over time to withstand some of the strains of fasting. I assume this was because of my advancing age, but much more likely had to do with my descending into full blown CFS.

    I highlighted the above quote, because I'm of the opinion that the "psychological" factors they reference, is more likely due to the rigors of fasting (especially without an efficient detoxification system) than to any particular psychological makeup of the individual with CFS.

    I've not done any juice fasts for many years now, but I've continued to wish I had the ability to do so. A couple years ago, after I began drinking copious amounts of raw goat milk kefir, I began to experiment with more of a modified partial fasting program which included varying amounts of kefir.

    By adding this kefir to a more traditional juice fast, I found I was able to tolerate a partial fast much better than I have in the past. I believe a primary reason for this is because I feel I was "protein starved" for a long time because of poor digestion, and that the kefir pretty effectively addressed this protein deficiency.

    My own perspectives regarding pwCFS doing juice fasting: Only do what your body can comfortably tolerate. Modify it in whatever way necessary so that it doesn't lead to undue "psychological stress", because this is most likely indicating a lot of physical stress. I believe any type of fast should for the most part be enjoyable and uplifting. "Grinding" through an overly difficult regimen is most likely going to be counter productive.

    Best Regards, Wayne
    Fogbuster, August59, merylg and 2 others like this.
  3. xrunner

    xrunner Senior Member

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    I wouldn't recommend either fasting or juice fasting out of personal experience. It may work in individuals with a healthy detox system but in CFS we know that's not the case and you'll likely end up mobilising more toxins that your system can't get rid of. I tried coffee enemas and apart from causing insomnia they did not seem to do much else.
    merylg likes this.
  4. gracenote

    gracenote All shall be well . . .

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    I just started juicing again this week and doing one coffee enema a day. There are times when this is not possible, but I think doing the Simplified Methylation protocol for the past year, and also doing a liver/gallbladder cleanse, has helped. I also spent the last several months blending my greens into a smoothy.

    I would not recommend starting with a fast. I think these things need to be introduced slowly and carefully think in terms of months and years rather than days.

    I also agree with Wayne that the "emotional" element is a physical response to the protocol rather than any sort of "psychological" problem. Detoxing too fast can bring on severe depression and other unhelpful, intolerable symptoms.

    I personally would not try the full Gerson protocol at this time.
    merylg likes this.
  5. aquariusgirl

    aquariusgirl Senior Member

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    I also spent the last several months blending my greens into a smoothy.

    Can you share your recipe? Most of the stuff I make tastes like crap~ i can hardly choke it down!
  6. gracenote

    gracenote All shall be well . . .

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    Ha ha ha ha. Most of what I make doesn't taste so good, either.

    For the smoothies I used kale, spinach, parsley, celery, cucumber, granny smith apple, lemon, chia seeds and some sprouted something-or-other protein powder. I added a little stevia.

    Right now for juicing I am using a mixture of greens, granny smith apple, carrot, beets, celery, lemon and not sure what else. I'm also doing a modified liver / gallbladder cleanse so that's why I'm including beets and apple. They don't seem to be aggravating a candida issue so may keep them in for awhile.

    I'm just guessing at things at the moment and seeing what works (meaning doesn't make me worse).
    merylg likes this.
  7. ukxmrv

    ukxmrv Senior Member

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    I did juice fasts and enemas in the early years of ME. Caused a downturn in my health and no improvement in symptoms. There were a range of bad side effects from stomach problems, vomiting, fainting from the juice fast. The enemas had no good effects on me at all. I carried on with these past the juice fast stage which I couldn't tolerate.

    Part of the problem for me is that I cannot tolerate much fruit or green veges. Fasting in general just leads to fainting and weakness and takes a long time to recover from. It's a knock-back for me.

    There were no emotional reactions other than the quite normal frustration in trying something that made me so physically worse. None of the other ME people in my group at the time had any good benefits from this regime. It's a bit of an oldie. If it worked we would know.
    justy likes this.
  8. SickOfSickness

    SickOfSickness Senior Member

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    I was told that people who are eating a worse diet, and not used to eating greens, would find it worse tasting. I don't know if that's true, but a friend who didn't eat vegetables that much found it terrible. I found a greens smoothie not too bad, the very first time. I ate green vegetables regularly.
  9. slayadragon

    slayadragon Senior Member

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    Wayne, I think that as usual, you are right on target in your observations and conclusions about this.

    Over the past several months, I've been experimenting with a variety of semi-fasting methods. (I'm far enough along in my recovery that I can do that; I certainly wouldn't have done it earlier on. And as with all detox, I don't think that people living in a problematic environment -- which just about all of England seems to be -- can do it effectively, so it doesn't surprise me that some people have tried to pursue this and not found any success with it.)

    I spent about a week doing a supervised fast (just 16 ounces of green juice, some vegetable/bone marrow broth and a small amount of pureed vegetable soup per day). This went better than I thought it would -- I didn't have any more problems than the other people there, none of whom had really serious health problems.

    I was suspicious about the idea that this would change what I wanted to eat, but it certainly did. I ended up with incredible cravings for organic fruits and vegetables, and started consuming 4+ cups of green smoothie mixtures per day. I was also consuming up to a quart of homemade kefir (either raw cow milk or pasteurized goat milk -- I wish I could get raw goat milk!), some cooked veggies, nuts, occasional brown rice or popcorn, and small amounts of very good beef or wild salmon (maybe 4 ounces every couple of days). It was like my body had been starving to death for years (probably true) and wanted as much good nutrition as it could get. This went on for a couple of months.

    Then I killed off a tapeworm in my small intestine and it released a whole lot of really acrid toxin, and I think it fried my whole digestive system because I stopped feeling like eating anything except organic popcorn with good butter (which Dr. Guyer highly approved of for the motility) and kefir/yogurt. I think that stage is about done now, and I'm ready to go back to an "intensive nutrition" phase.

    I've been doing lots of enemas (up to four coffee enemas per day plus an initial cleansing enema) or colonics this whole time. This seems really excessive, but when I stop I feel so much worse that it seems important. The toxins were flowing out like mad, even before I killed the tapeworm.

    The kefir seems really essential to me, with regard to doing any sort of fasting long term. (I've also started making homemade probiotic yogurt with Guyer's 18-strain probiotic and think that is equally helpful though a bit different. I thought the yogurt maker was going to be a waste of money, but I really like it.) My feeling here is that insofar as this illness specifically involves mold poison, it would make sense that kefir/yogurt would be really helpful during the detox process, as the toxins go through the gut. Mold toxin kills off a wide swath of bacteria in the environment (that's its raison d'etre), and it seems to me that it does that in the gut too. If I supplement enough probiotics with homemade kefir/yogurt (store brands or capsules of probiotics don't have anywhere near enough), it seems to make up for what's being killed. In addition, according to Nourishing Traditions, kefir is helpful with regard to the gut lining, which (according to a bunch of studies) trichothocenes do a good job of destroying.

    Most of the people who suggest doing all raw foods diets claim that the body can take the amino acids in the veggies and piece them together into whole proteins. That may be true for most people, but considering that trichothocenes disturb protein synthesis, that may not be true for us. So having some kind of animal protein seems like it may be more important for us than it is for most people. (Credit to Janis for pointing out this idea, btw.)

    I think the thing that distinguishes CFS patients from other people who might be doing Gerson (such as people with cancer) is that CFS seems more specifically a biotoxin disease. I think that certain kinds of biotoxins may make people more likely to get cancer, but those patients also may have a wider range of other toxins in their bodies. Biotoxins are specifically neurotoxic, causing lots of psychological symptoms both upon exposures and during the detox process (especially if the toxins are not being escorted out of the body in a speedy manner as they're released). I've certainly experienced a lot of weird psychological symptoms as the toxins have come out, and most of the people with CFS who have detoxed while doing avoidance report to me similar experiences. I thought it was interesting that the Gerson people brought this up -- it actually made me more inclined to believe they actually had experience with true ME/CFS. (This all is wholly physiological, I believe strongly. It's not so much that the stress of CFS causes psychological issues, though that could be an added factor, and it's certainly not that psychological issues cause the CFS. It's that the specific inflammatory toxins involved in this illness cause both.)

    I'm not sure if I should stay with green smoothies (I have a Vitamix now) or give juicing a try. There's something intriguing to me at this point about doing even more intense nutrition, such as Gerson's 13 glasses of juice a day. Insofar as the goal is to flip an epigenetic switch, maybe that would do it. That or stem cells.

    Aquarius Girl, in terms of green smoothie recipes, here is one person who has some good ideas:

    http://www.incrediblesmoothies.com/

    https://www.facebook.com/IncredibleSmoothies

    Here is Victoria Boutenko's recipe site:

    http://greensmoothiesblog.com/recipes/index.php?view_page=recipes&timestamp=1327158565

    If you happen to know Jana, her husband comes up with mixtures that always sound good to me -- he really seems to have a knack for it. Try asking her what's in their blender.

    Best, Lisa
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I become interested in juice fasting several years ago and did some reading on the subject. I read that people with hypoglycemia were not good candidates for fasting and should do so only under medical supervision. Since I have hypoglycemia and could not afford a supervised fast, I did not do one.
  11. Wayne

    Wayne Senior Member

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    Pumpkin Seeds for Tapeworms

    Lisa, I've been meaning to get back to you regarding your tapeworm experience. I grew up with a story about how my grandfather had gotten rid of a tapeworm using pumpkin seeds. After I read your own account, I did a search of "Pumpkin Seeds for Tapeworms", and came up with links to several medical journals dating back to the mid-1850's. Below is just a handful of those links:

    Northwestern medical and surgical journal, Volume 12


    Boston medical and surgical journal, Volumes 46-47

    The New York medical times, Volume 3


    Medical brief, Volume 7

    Eclectic medical journal, Volume 36

    Each article seems to have a slightly different variation on the pumpkin seed protocol, but they all seemed to be equally effective. As I remember, it appears that pumpkin seeds don't kill the tapeworm per se, but temporarily paralyzes it. When this happens, it is not able to cling to the intestinal wall, and is fairly easily flushed out with a kind of purge, such as castor oil or epsom salts.

    In short, given how easy it is to pick up a tapeworm, and how difficult it is to get a positive diagnostic test for it, it sounds to me like an occasional pumpkin seed remedy for possible tapeworms would make a lot of sense. You can do the pumpkin seeds on an empty stomach first thing in the morning, and do a purge a couple hours later. Apparently, pumpkin seeds are used extensively in China for all kinds of different parasites. It's on my agenda to give it a try. Sounds benign enough, even for my sensitive system.

    Wayne
    August59 likes this.
  12. slayadragon

    slayadragon Senior Member

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    Yes, I would have thought that flushing out parasites would be easy too. However, after I took that drug that killed the tapeworm, it took me many weeks to expel the pieces, and it released a great deal of quite unpleasant toxin. Another person related the same experience on another thread.

    My body feels categorically different since having done it though. Like perhaps the tapeworm was preventing methylation from occurring as a result of absorbing all of the B vitamins? It certainly was bright yellow. I'm not taking any supplements at all now, and my body is continuing to expel large amounts of toxins. I wonder how long this can go on.

    The idea that the parasites hold sequester large amounts of toxins, thus providing the body with a bit of protection from them, seems right to me. I don't think this is any sort of solution, but it does suggest to me that killing them off needs to be done really cautiously maybe.

    The drug I took seemed really benign, in itself. It was the "die-off" that was the problem, I feel sure.

    Best, Lisa
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Wayne,

    If you try this, let us know the results. Is castor oil still available?
  14. Sammy

    Sammy

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    Little as far as I know in australia it is.

    I must say thought ever since seeing Fat Sick And Nearly Dead, the people around me think its my solution - non PH.D folk

    As my symptoms mostly and or originated from the gut(lab proven active leaky gut) I was thinking it was worth a try. However I asked myself the same question, if this was the answer why wouldnt the 'greats' cheney, chia, de meilier etc be onto it already???



  15. slayadragon

    slayadragon Senior Member

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    My strong belief is that the people that the "great" CFS doctors treat are almost all living in really bad places, in terms of mold in their homes and/or the outside air, or the contamination of their possessions from previous bad places.

    One thing that I've learned from avoidance is that pursuing detoxification while in a bad place is a mistake. If people's bodies are overwhelmed with the new toxins that they are taking in, stirring up additional toxins is going to make them even sicker.

    In general, Cheney's patients are extremely sick, which is suggestive that they are living in a bad place. He doesn't suggest any detox of any sort (including methylation support), and I believe this is wise of him. (It would be even wiser if he would advise those patients to work on getting to a better environment, but he seems not to want to focus much on that.)

    Rich developed his protocol in conjunction with mostly moderately ill patients who spend large amounts of time on the Internet. It makes sense to me that they benefit from mild detox, going very slowly.

    For patients who have gotten really clear of these toxins, pushing detox harder in various ways can be productive (though caution still is very appropriate, especially in the early stages).

    Juice fasts are highly detoxifying, perhaps as much so as almost anything else that people might do. Thus, like other detoxification programs (cholestyramine, methylation support, FIR saunas, coffee enemas), they may be best pursued by people who are already pretty clear.

    Juice fasts also have a few other things that may not be appropriate for people with CFS (or biotoxin illness).

    First, obviously they have no protein in usable form. The rationale for why this is okay is generally stated that the body can take the amino acids in the juice and combine them into complete proteins. However, trichothocene mold toxins interfere with protein synthesis, meaning that this may be less likely to occur. Adding small amounts of meat or other protein might be appropriate, therefore.

    Second, people with CFS/mold illness often tend toward blood sugar instability. If this occurs, adding some kind of fiber might be appropriate.

    People with CFS/mold illness may benefit from salt, and the juices have little of that. Some might be added.

    People with CFS/mold illness tend to have gut dysbiosis, and the high sugar content of many juices might end up feeding yeast. As Wayne suggests, adding homemade kefir (or homemade probiotic yogurt) might be helpful.

    It would be interesting to hear if patients could end up using juice "fasting" (with modifications) appropriately in this disease. Wayne's story was really good to hear, and I'm going to experiment some more with it myself.

    Best, Lisa
    Sammy likes this.
  16. Sammy

    Sammy

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    Thanx Lisa

    first thing Im doing is getting out of this place Im in as the MCS may well be originating from a mould biotoxin source and or chemical sensitivity to the brand new renovation. Just exhausting having to pack and wash everything again(as mould transferance has always been a concern for some reason). But now i do beleave as you do the mould biotoxin does play a majour factor. Then i guess take thinks from there....

    Btw I have come to beleive that BCAA's are the only real effective way to get our bodys out of a catabolic state through trial and error and forced GYM training, foods or powders, WPIs WPCs etc dont seem to work, for me anyway. There are a couple of O/S's doctors that beleive and also market there own BCAA mix as well, foggy brain cant remember there names. Although if Tony's ready this he may remember...

  17. slayadragon

    slayadragon Senior Member

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    Here is a blog I found about juice cleansing that I think is pretty good.

    http://myjuicecleanse.com/


    Here, she talks about the idea of a modified juice fast for various reasons, including for people with immune system issues.

    http://myjuicecleanse.com/juicecleanse/what-is-a-modified-juice-fast/


    Sammy, how long have you been sick? Have you gotten much worse in your current environment?

    From the case studies that I've seen so far, it's seeming to me that people who get CFS (or who decline precipitously) generally are living with particularly problematic toxins -- ones that, once they're sick, can drive them down into severe illness even in tiny amounts. A lot of people have found that just washing their belongings isn't enough to remediate them, and that they're better off just putting them aside and starting over.

    Of course, this is a real commitment to do.

    I have seen a few people who have been sick for a longer period of time do well by just washing their belongings (and discarding ones that cannot be washed). My feeling is that they were being exposed to toxins that are less problematic -- that are problems in large quantities but not in tiny amounts. (Molds make all kinds of toxins, only some of which appear to be real killers.)

    You would think that "just" washing everything and discarding everything that cannot be washed always would be helpful, and I imagine that it actually is at some level (e.g. preventing people from continuing to decline into the future). In terms of the rapid gains in functionality that people doing mold avoidance have reported here and elsewhere though, that doesn't seem to be enough to make it happen if the toxins are really problematic.

    I don't know much about amino acids and am interested in your experiences.

    I'm not sure what WPIs and WPCs are.

    Best, Lisa
  18. slayadragon

    slayadragon Senior Member

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  19. taniaaust1

    taniaaust1 Senior Member

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    Ive done some juice fasting while having ME. The longest time I think Ive juiced fasted was for a 5 day period.

    I myself get no poor side effects from juice fasting (organic juices) and have had a benefit from a short juice fast of 3-5 days. I found a certain juice combo helped my mind fog.

    (Unfortunately Ive now forgot what the combo was.. it was celery, beetroot? and a fruit? and a spice).

    Not all juice combos I found to be equal eg orange and apple combo fasting I dont find to be any help.

    I think thou some of us certainly shouldnt be juice fasting eg those who have candida issues, also 50% of us are said to be fructose intollerant.

    I myself did have hypoglycemiawhen I used to do those fasts but didnt find that to be an issue with the juice fasting.

    I cant do juice fasting anymore due to hyperinsulinemia.
  20. slayadragon

    slayadragon Senior Member

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    Here is another comment about the Gerson therapy and CFS.

    http://www.chipsa.com/gerson_protocol.html

    Carbohydrates

    Foods such as oatmeal, potatoes, vegetables and fruit provide the chief source of clean fuel that will provide energy for a recovering patient but must be taken in larger quantities, as they are low in kilo-joules. On the Gerson Therapy the high vegetable content is taken mostly in juice form that provides sufficient energy for daily energy requirements and the higher energy demand of regeneration. When carbohydrates are oxidized they do not leave an acidic waste in the body as do protein and fats. The end products are carbon dioxide and water that promote an alkaline environment. This encourages the elimination of sodium from the tissues, reduces toxicity and acidity and enhances the passage of potassium into the cell.

    It is essential that the cell respond to insulin for digestion at cell level and healing of the body. A therapy loaded with carbohydrates will promote good insulin response, however, many people with degenerative disease have degrees of carbohydrate intolerance due to their weakened digestive system. This will be evident in the gut and in other systems such as symptoms of low blood sugar (lethargy, fatigue, poor concentration, mood swings, panic attacks, hot and cold sweats, etc) and 'fuzzy' head after ingesting carbohydrates. Improvements from these symptoms can take days to months to occur, particularly in Chronic Fatigue Syndrome. A person may feel unwell initially on this type of diet but the all important uptake of potassium will slowly improve at the cellular level.

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