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Exercise as Detox

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Jan 2, 2012.

  1. mellster

    mellster Marco

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    My PEM (and other FM related symptoms) also gradually vanished over the last 9 months. I might have had FM for 2 years and "just" post-viral fatigue for the past 9 months, but I am now having longer-term (hopefully not chronic) tonsilitis and associated lymph swelling and neck tension. Whenever I exercise the swelling and general lymphostasis decreases immensely and when I rest too long it comes back. I have had mild gradual improvement from this so far and while I am still completely beat by the end of the day (need 9 hours currently), I know I would clearly be worse off without exercise. So I'd say do what you can do, but do it with caution.
  2. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Mike Dessin used HGH when he was recovering. (He moved to a good apartment and got rid of all his stuff, then was treated with neural therapy, homeopathy and a few other supplements before starting it.) He made a huge amount of progress (going from starvation/emaciated to working-out-regularly buff) in only seven months.

    So conceivably it can be helpful for some people, in certain circumstances.

    Lisa
  3. Rockt

    Rockt Senior Member

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    I'm assuming it's a prescription item?
  4. citychanger

    citychanger *****

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    Yeah and not cheap at all
  5. slayadragon

    slayadragon Senior Member

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    I think Mike said it was about $300 a month for him. It depends a lot on how much people use. Just a small amount might make a difference.
  6. citychanger

    citychanger *****

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    Kina (the moderator) has informed me that PR's policy is that users cannot have dual accounts, although they make exceptions for special circumstances. I informed her that my reasons for wanting to remaining anonymous with respect to biotoxin avoidance are both professional and personal, but she won't let me off the hook without giving her specifics (which would kind of go against the point of remaining anonymous).

    In any case, my account may be deleted which unfortunately means I would discontinue my discussion about avoidance on this forum. If that happens and anyone would like to continue discussing avoidance, please contact me via my blog ampligen4me.wordpress.com
    anne_likes_red likes this.
  7. Dainty

    Dainty Senior Member

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    Er, why did you presume in the first place that you were exempt from the very clearly stated rule that multiple accounts are not allowed? Everyone here is expected to read and abide by the forum rules - it isn't the moderators' fault that you chose to breech them. If you felt you had good reason to require an additional account the reasonable thing to do would have been to... ask.

    The fact that they're discussing it with you all shows me they're very kind in giving you a chance. Other forums I know of wouldn't do that in cases of such blatant disregard. Your attempt to garner public sympathy and make a moderator out to be the "bad guy" is pretty low in my eyes.
    Enid and Valentijn like this.
  8. citychanger

    citychanger *****

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    Dainty,

    I left out an important point, which is that I informed Kina she can by all means delete my account. I very clearly informed her that is an acceptable outcome, especially in light of the forum rules, so no I never assumed I was above the rules. If she had chosen to delete my account, I would never have begrudged her the right and basis to do so.

    However, my point was that I do not wish to discuss the specific reasons about why I wish to remain anonymous, besides that they were personal and professional-related, and that she insisted on me giving her more specifics, which then led to a stalemate in discussion.

    This has nothing to do with garnering public sympathy. I was merely expressing the reason why I would soon be deleted and inviting anyone interested in the topic to continue discussing with me on my blog.
    anne_likes_red likes this.
  9. Mark

    Mark Acting CEO

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    Citychanger, we attempted to resolve this issue with you privately, after you publicly mentioned having a duplicate account (which is clearly against the rules, as stated, and is not normally permitted on most forums), because if there are legitimate reasons for having a duplicate account we want to be sensitive in accommodating that. But by discussing that private conversation publicly, you have put us in a very difficult position now. I'm sure this could have been resolved satisfactorily in private, but you haven't helped the situation by discussing it in public and presenting that private discussion in the way that you have. You don't seem to have left us with any alternative but to close your duplicate account.
    Lou, Enid and Valentijn like this.
  10. Kina

    Kina Moderation Team Lead

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    I would just like to clarify that I never mentioned deleting citychanger's account, I discussed closing it. It is our policy not to delete accounts. It is also against stated forum rules to have more than one account--
    unless there are very good reasons that a second account should be allowed. Citychanger could not provide us with a good reason why he should be allowed to post under two different usernames, therefore we have closed but not deleted the citychanger account.

    Please carry on with the dicussion related to "Exercise as Detox". This thread should not be the place to comment on moderators actions.

    Thank you.

    Kina.
    mojoey and Valentijn like this.
  11. mojoey

    mojoey Senior Member

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    very glad to see this thread opened up again for discussion. it seems like an important topic (considering that we're hearing of such stunning results from people that are trying this,) so it seems a bit of a shame that it's stuck in the "detox" section. Perhaps there could be a section about biotoxins (or something more specific to ME/CFS, like hyperreactivity to toxins)? Just brainstorming here.
    anne_likes_red likes this.
  12. Freddd

    Freddd Senior Member

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    Hi Mojoey,

    Hyper reactivity to chemicals, meds, supplements, toxins of various sorts, foods, etc are all part and parcel of the methylfolate deficiency and mb12 deficiencies. As exercise is also required to stimulate mitochondria profusion and restoration of muscles along with adb12 and l-carnitine fumarate it seem to be very well placed here but you are welcome to dicuss it anywere else you like. It hardly seems stuck and is getting a good rate of reading and response. You found it.
  13. mojoey

    mojoey Senior Member

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    Hi Freddd,

    I would argue that hyperreactivity to certain toxins are due to methylation blocks. However, it is a common story to hear of biotoxin avoiders that cannot tolerate or do not benefit at all from taking any dosages of yours or Rich's protocols, until they begin doing avoidance. Then methylation seems to be a powerful adjunct upon lowering reactivity.

    Therefore, I would argue that whereas discussion about methylation certainly belong in detoxification, hyperreactivity to biotoxins belongs in a separate category.

    Also, there is that little fact that avoidance of biotoxins has led to loss of PEM in multiple cases, where I have yet to hear of that being the case in avoidance of chemicals, pollution, food, EMFs, or whatever else. When we lump these other sensitivities with biotoxins, I have a hard time believing the topic would ever get the serious attention it deserves.

    I also have a hard time believing that people that have recovered from doing this will chime in if their efforts in doing so will just get followed up by people talking about how avoiding chemicals and foods has helped them (yet they still have classic ME/CFS symptoms) and thus dilute the severity of their responses. Perhaps this is why Lisa rarely posts here about avoidance now.
  14. searcher

    searcher

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    I would also love for there to be a separate section for biotoxin discussion. The effectiveness of Freddd's methylation protocol was multiplied greatly for me when combined with biotoxin avoidance, so I think of them as adjunct therapies.
    anne_likes_red likes this.
  15. Freddd

    Freddd Senior Member

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    I would argue that hyperreactivity to certain toxins are due to methylation blocks

    And what do you think that lack of Metafolin and mb12 causes, among other things.

    However, it is a common story to hear of biotoxin avoiders that cannot tolerate or do not benefit at all from taking any dosages of yours or Rich's protocols, until they begin doing avoidance.

    It took me a year to heal sufficiently that avoidance was no longer so widely necessary. Another 7 years were needed until I finally got a handle on the paradoxical folate deficiency that periodically caused a resurrgence of hyper reactivity. It takes years to heal from all the damage causing the hyper reactivity

    Also, some of the avoiders maintain their hyper-reactivity by continuing to take glutathione, NAC, whey, folic acid, and for some folinic acid and vegetable food source folate and who knows what else. They won't perform the trials that might provide them the answers. I do understand the fears. When I found mb12, there was hardly anything left that I could tolerate to eat. I couldn't go out to eat because of the food and because of the perfumes and colognes and such that caused asthma in me. I do understand the fears, I was damaged by the glutathione, not just unpleasant but reversable, but worsened neurological damage that hasn't recovered.


    When we lump these other sensitivities with biotoxins, I have a hard time believing the topic would ever get the serious attention it deserves.

    So you want to put it into an information ghetto without all this other information being made available? Start a thread where you like. Don't be surprised if other information with a different emPHASis that you can't control creeps in. Tis the problem on the internet, you can't control what other people are going to think or say. So maybe start your own forum and moderate it to keep out everything you don't like. Don't expect to find real solutions though.

    I also have a hard time believing that people that have recovered from doing this will chime in if their efforts in doing so will just get followed up by people talking about how avoiding chemicals and foods has helped them (yet they still have classic ME/CFS symptoms) and thus dilute the severity of their responses.


    I don't know. I think it does well to have people exposed to what works for other people. In that there can be a lot of answers. Lots of people maintain their own illnesses by what their illness adaptations have been. I did for decades. I changed almost everything I thought was true about these illnesses and am healed.

    Perhaps this is why Lisa rarely posts here about avoidance now

    That is her loss.
  16. Freddd

    Freddd Senior Member

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    Hi Searcher,

    I avoided for years. It took years of healing and recovery to be able to cease avoidance with caution. I'm glad to hear of your progress. Good luck.
  17. searcher

    searcher

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    Thanks. It's very encouraging to hear about the possibility of one day being able to cease avoidance while still having reduced symptoms. And one day, maybe, no symptoms!
    anne_likes_red likes this.
  18. slayadragon

    slayadragon Senior Member

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    Hi Freddd,

    My own focus on treating this illness is as broad and open-minded as I have possibly been able to be, and I've tried just about every different type of treatment available. (I will say that I have my doubts about Rituximab and am really glad I went a different route from that one though.)

    I've been pursuing methylation for five years now, starting with Rich's protocol and now using something much closer to yours. It feels to me like it's been a really important component of my recovery. And like you, I feel like I'm getting closer and closer to getting the whole thing resolved, with more and more reactivities falling away over time.

    Where avoidance belongs on this board, I don't know. In looking at the data from the CureTogether site (summarized below), it seems to me that the majority of the top-rated treatments involve avoiding one thing or another (mold/biotoxins, gluten, sugar, chemicals, EMF's, allergens, high stimulus environments, stress), and that perhaps having a separate section just for "Avoidance" on the board would be a good thing. I think at some level, people tend to think that having to avoid things is a sign of personal weakness, or is just something that they would prefer not to do. Giving it legitimacy as a true CFS treatment type might help people to see it in a different light and thus consider it more seriously. If you lived in a moldy house yourself, then I suspect that you agree that regardless of how helpful methylation support may be, those living in really bad places are not going to be in the position to take full advantage of it.

    That's not why I haven't written much on this board recently though. I've been involved in a number of other projects designed to help to create awareness of CFS (amongst media, physicians and the general public), of toxic mold (amongst the same groups plus in schools), and of mold avoidance as a treatment for CFS. I do have a summary of my previous writings from PR for those interested in the topic though, and am happy to answer questions from those who want further information.

    Thanks much for your work in this area. Like others, I have found it very interesting and helpful in my own recovery process.

    Best, Lisa

    *

    Some new data on treatments.

    Below (for understandability) I reorganized responses from the Cure Together site by the % showing improvement.

    http://curetogether.com/chronic-fatigue-syndrome/treatments/

    About 1600 people with CFS responded.

    I was surprised that half said that mold avoidance was helpful, since for most people this just means moving. Biotoxin avoidance was higher (likely because only informed people know that word).

    Ampligen and LDN (both immune modulators) scored 50%. It really does seem like those treatments _should_ work on this disease, and its frustrating that theyre not more consistent. My hypothesis is that its because people are getting so much inflammatory stress that it overwhelms the positive effects, and thus am excited to see this blog from an extreme avoider about to start Ampligen:

    http://ampligen4me.wordpress.com/

    Id like to see more reports on oxytocin, the top-rated hormone. T3 also rated highly.

    Antidepressants, CBT and GET helped about 20%. Thus, my guess is that of people diagnosed with CFS, about 1/5 actually have plain depression.


    From 9/4/2011
    % Reporting Mild/Moderate Improvement

    80%+
    Low stim environment.

    70%+
    Frequent rest breaks. Oxytocin (10).

    60%+
    Rest. Personal development. Mindfulness.
    T3. Avoid biotoxins. Wheelchair.

    50%+
    Ignore people who think ME/CFIDS is not real. Meditation. Change job.
    LDN. Ampligen (6).
    Stimulants. Ritalin. Klonopin.
    Avoid mold. Avoid allergens. Diet changes. Reduce sugar.
    Orthomolecular. Sinus treatments. FIR sauna. Invert body position.
    Qi Gong. Massage. Lymphatic Massage.

    40%+
    Go to bed early/sleep longer. Recuperation.
    Treat yeast. Probiotics. Treat methylation.
    Avoid alcohol. Avoid gluten. Avoid dairy.
    Baclofen. Immunovir. Xanax. Antivirals. Ultramadol. Ibuprofen. Guaifenesin.
    Oral magnesium. B12 Injections.
    Stay well-hydrated. Electrolyte beverages.
    Diaphragmatic breathing. Cranial Sacral. Chiropractic. Yoga. Stretching.
    HBOT (7).

    30%+
    ARVs (7). Antibiotics.
    Tylenol. Naproxen. Aspirin.
    Provigil. Benadryl. Cymbalta. Trazadone. Neurontin. Wellbutrin.
    D-Ribose. Myers Cocktail. Malic acid. Topical magnesium.Vitamin D. 5HTP. Sublingual B12. Cerefolin. Betaine Hcl. NAC. Liposomal glutathione. Testosterone. Melatonin. Cortef.
    Kinesiology. Reiki. Tai Chi. Orthostatic conditioning. Soak feet in cold water. Cool shower following exertion. EFT. Distract attention from symptoms. Amygdala retraining. Ayurveda. Eat more produce. Root canal/cavitation removal.

    20%+
    B Vitamins. Omega 3, 6, 9. ALA. CoQ10. DMG. Carnitine. Iodine. Chinese herbs. Homeopathy.
    Xyrem. Altenol. Celexa. SSRIs. Effexor. Amitriptyline. Antihistimines. Caffeine.
    Detox foot baths. Chelation. Ionized water. Skin Brushing. Osteopathy.
    Neurofeedback. Lightning Process. CBT. Psychotherapy. Exercise. GET.

    10%+

    Doxycycline. Doxylamine. Zoloft. Prozac. Paroxetine.
    Gingko Biloba. GABA. Glucosamine/Chondroitin. EPA. NADH. MSM. Monolaurin. Inosine. Undenatured whey. SAM-E.
    Brainwave CDs. Rolfing. Rebounder.

    Less than 10%
    Vitamin E. Cats Claw. Garlic. Alcohol.
    anne_likes_red likes this.
  19. mojoey

    mojoey Senior Member

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    No all I argued for was that perhaps avoidance deserves its own category (or subcategory, technically speaking), unless you consider all the categories that Cort set this forum with "information ghettos." I'm suggesting that the proper framework be given to maximize the productiveness of discussion. If I thought starting another forum were the best solution overall, I would've created one. In fact, other forums on this subject do exist. I just think that PR is a great forum for such a discussion, and the most potentially-receptive audience is already here, but sometimes a tweak is necessary when forum categories are not crowdsourced in quora.com fashion (where anyone can create a category, and said category is ranked by popularity).
    anne_likes_red likes this.
  20. Freddd

    Freddd Senior Member

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    Hi Mojoey,

    You could always petition Cort for a new major category. Personally I don't think this really ranks up there but that is an opinion only and I think that it would not get the traffic to support increased understanding. I have been kicked off certain FMS/CFS boards because I claimed to be cured and said things that didn't support what the boards owners wanted pushed. It is the free interchange of information here that has been the casue of all the progress I've made in the past few years in understanding various forms of induced folate deficiencies and how they impact some sizable percentage of people here and may even be a defining characteristic of some forms of this disease. My own experience is that avoidance was helpful as a coping mechanism but it also tended to progressively narrow my life over a 30 year period and didn't stop the disease progression or reverse it. The most difficult part of recovery was deciding to taper down many medications and see if I could do better without and that was almost all of them.

    Adding foods, places and activities back into my life I did cautiously but sucessfully. That is one of the things that really had to happen if I was going to be actually cured insteqad of merely alleviating symptoms. About the only thing I can't eat is any significant amount of milk and some milk products because of lactose intolerance and that is of an entirely different cause. I no longer have the same problems, lifelong problems, with the detergent aisle in the supermarket, sitting several rows away from somebody with too much perfume, hyper sensitivity to household dust and mites, molds and who knows what else. Pot luck dinners were dangerous. My life became very impaired by all the avoidances. It was a fearful business to put myself in what seemed like harms way after decades of increasing avoidences.

    unless you consider all the categories that Cort set this forum with "information ghettos

    They can be, espcially very narrowly focused ones. Even this methylation menu, which despite being a defining characteristic of CFS/ME/FMS etc lots of people never visit since they have no idea how intimately involved in their problems it is and that it offers the real posibility of a real and effective treatment leading to a cure, this week, not 10 or 20 or 30 years from now if the virus of the week or whatever theory pans out and they get the research . I think that quite a few have given up after all the crap they have gotten from doctors and spent their life savings trying to find somebody who can treat it effectiviely and drugs that make them sick without helping or maybe relieving one or two of a multitude of symptoms.

    There are a whole lof of co-morbidities which can become much more clear after the up to hundreds of confounding symptoms are dealt with. So perhaps the question concerns whether something is a cause or an effect of a different cause. I really don't know what organization of forums will work best.

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