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Am I “Allergic to Life”?

Discussion in 'Phoenix Rising Articles' started by Russell., Nov 4, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
    Last edited by a moderator: Nov 6, 2013
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  2. xks201

    xks201 Senior Member

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    Great article.
     
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  3. BeatriceL

    BeatriceL

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    I took the QEESI test and scored low to moderate on the sensitivities part. However, my life has been pretty much halted by CIRS, and I scored 75 on the "effect on your life" portion, but it was due to mold avoidance, not chemical sensitivity. I can go into a mold-safe building even if it has a lot of chemical odors etc, but cannot go into an odor- and chemical-free building if it is contaminated by mycotoxins. I wouldn't stay inside a building that has odors but I have no particular reaction to it; it is an intellectual decision to not expose myself to this stuff.
     
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  4. anniekim

    anniekim Senior Member

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    Really interesting article, thank you. I am a bit confused though, did the incident in Costs Rica happen after you became ill? Thanks
     
  5. JanisB

    JanisB Senior Member

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    Yes, it was the winter of 2010-11 and I'd already been sick more than 20 years.
     
  6. JanisB

    JanisB Senior Member

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    Yes, it was the winter of 2010-11 and I'd already been sick more than 20 years.I
     
  7. JanisB

    JanisB Senior Member

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    Interesting. It's quite possible that the hypersensitivity that arises from mold is a different mechanism than the one that produces chemical sensitivity. Or that there are other factors which determine whether a person becomes TILTed to a severe level.
     
  8. plant

    plant

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    Good article!

    It's a great message - for people to prevent more severe MCS before it starts by recognizing risk of TILT.

    As for whether the genes stay permanently messed up - we don't have that many people who have really managed to detox to the point of significantly decreased sensitivity, and those who do tend to take years or use very intense detox methods (IR sauna, coffee enemas, and more), so the assumption "it doesn't go back" could be true for people still being exposed but not necessarily true across the board.

    (Just as many conditions that seem incurable, but could be incurable only for malnourished people, since they tend to resolve when people are getting really high quality nutrition, such as Gerson/juicing.)

    I feel like my gene expression is changing from mold detox. I find that my brain feels entirely different, too. Much calmer. So I think I'm getting amygdala calming too from the detox (without having to specifically focus on amygdala retraining).

    In my experience with mold avoidance and detox, I've come to think that the gene expression changes and sensitivity aren't a mistake but are probably smart moves on the part of the body. I almost never assume the body makes mistakes anymore. I don't see it as a malfunctioning body, I see it as a body trying to guide me to detox. Also, when I find things that detox me, my body grabs onto them in almost an addictive way. It knows what it wants. And I do get decreased sensitivity from detox, as well as a lot of other neurological improvements.

    I'd also comment that something else I'm shocked by is the sheer volume of toxins I had in me. I've experienced all different sorts of things coming out of me at different times with different side effects, but just a massive amount of stuff. It just keeps coming. I keep having to dig deeper with deeper detox methods, but I'm still getting improvements.

    I think the body was right to make me hypersensitive (to mold at least) to try to get me to detox like this. Maybe this would have been simpler before toxic mold was so rampant, and I could have just wandered away from a swamp and been "clear" easily in prehistoric times. But these days, countering the toxicity seems to involve good locations as well as tricks to speed up detox. Or at least that's what I'm doing.
     
  9. plant

    plant

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    Just wanted to comment that if people want more information on the possible link of mold toxins and CFS, this is a great book for info on Erik Johnson's discoveries along those lines early on in the Tahoe outbreak that led the CDC to recognize "CFS":

    Back from the Edge: How One Man's Discovery Brought Him From Desperately Sick with Chronic Fatigue Syndrome To the Top of Mt. Whitney in Six Months
    http://www.amazon.com/dp/B00EDGEHT2
     
  10. AbbyDear

    AbbyDear

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    Great article - it fits me pretty closely. I am the model MCS patient, highly sensitive (intolerant) of chemical, food, and to some degree environmental (dust, mold, pollen). I can not tolerate most places. Among other things, pain is increased. I am quite certain circulation is restricted also, especially in chemical environments. Most doctors just do not even know this is a heelth condition to diagnose, much less treat. I do question the studies suggesting emotional/psych basis, though I do consider the brain (physiology) to be part of the problem (or could be).

    Firstly, I could not follow the whole thread/articles - probably went to too many places at the same time. But just to be sure? - Janis wrote this thread, Jill wrote the Discover Magazine article, and Dr. Claudia Miller, MD was referenced quite a bit as an early advocate of this illness and TILT.

    Secondly, I have a number of questions. Not sure if I can remember them all now, but I will try.
    1. I would like to get proper diagosis of this illness, how does one go about doing that ?
    2. Is there any bio marker tests that can be done to confirm?
    3. Are there any clinics that actually do "exposure"/reaction testing to confirm this ?
    4. Are there any direct blood/urine tests that detect micotoxins, biotoxins, ... ?
    5. What is relation to true allergy (IgE) ? do allergy shots cure? help? how can desensitizing a few environmental allergens eliminate (possibly different) response to hundreds of foods and thousands of chemicals?
    6. Can they narrow this reaction down to some immune response, or one of the 5 hyersensitivity reactions (http://en.wikipedia.org/wiki/Hypersensitivity) ? Or is it completely different ? or unknown ?
    7. Is there any relationship to lose of control of the immune system, e.g. low alpha-MSH, low cortisol, or cortisol resistance ? or could something be damaged by high cortisol levels, e.g. PTSD initiated illness ?
    8. Does Dr. Miller, or her clinic in TX diagnose or treat this condition, or is she just in mode to make others aware of this? Is she looking for study patients ?

    Thanks.
     
    Last edited: Nov 5, 2013
  11. jenbooks

    jenbooks Guest

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    Dr. Miller doesn't treat or diagnose. Have you heard of Planet Thrive? You might join it and find some answers there.
     
  12. caledonia

    caledonia

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    You guys are making this way too complicated. It's the same mechanism that causes ME/CFS, i.e. glutathione depletion. Glutathione is the body's main detoxifier. When you don't have enough glutathione to detoxify toxins, you get symptoms. When I take methylfolate and B12, thus building glutathione, my MCS gets better. When I don't take it, it gets worse.

    As to why would you get worse when camping - when you get away from the toxin, you start detoxifying it, but you haven't taken steps to rebuild glutathione. Therefore, you're depleting glutathione even more, therefore you react even more. Over time, once the toxin is detoxified enough, your glutathione is freed up to handle exposures again, therefore you don't react as badly.

    Just avoiding toxins may be enough for some people to recover, but they may always have problems because the glutathione depletion is a vicious cycle i.e., glutathione depletion causes more glutathione depletion. So unless you take steps to break out of the vicious cycle, it becomes a chronic condition.

    Read Rich Van Konynenburg's papers on glutathione depletion. This also fits in with Martin Pall's work. My Methylation Made Easy videos, part 1 and 2 are an easy to understand explanation of this. http://www.youtube.com/watch?v=o4uqEDK6BvM

    Some people can take glutathione directly, and some people can't. The best way to rebuild it and to break out of the vicious cycle, is to do methylation treatment.
     
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  13. AbbyDear

    AbbyDear

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    I have read "Explaining Unexplained Illnesses" by Dr. Pall, and followed many of the suggestions in the Therapy chapter. Did not help, not even a little, not even for a second. I have done glutathione precursors, liposomal glutathione, glutathione IV pushes, ALA, vitamin C, E, minerals, etc. Did not help, not even a little, not even for a second. I have done liver flushes, juicing diets, dandelion-milk thistle and other herbs, and detox fasts, etc. Again, nothing helps, not even a little, not even for a second. I've done methylation supplements, for years. I have spent 10s of thousands of $, nothing helps. I think Janis, and Jill, I think mention limited effects of detox. There must be something to it however, and it may help some, but not me. It's great that some are helped by methylation and glutathione, and its worthwhile to try, but for me, i just gotta dig a bit deeper, and i need a real diagnosis and a doctor who understands MCS and ME - first need to acknowledge/understand the problem before randomly prescribing drugs....and i just really think there is more to it than just needing a supplement or two. They also have to acknowledge the difficulty and seriousness of the problem and be able to admit that they may not be able to cure this impossible illness. I also think about how if we are 100x more sensitive to things than normal, than unless we are 99.999% effective with detox, than maybe there would still remain enough to set things off. I do feel at times like i am being poisoned, but it does not really feel like a hangover/detox to me. I do feel the immune system is all rev'ed up, and reacting to everything and all the effects are difficult to describe. It has destroyed my life.
     
    Last edited: Nov 5, 2013
  14. jenbooks

    jenbooks Guest

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    Abby, I did my 23andme. There are numerous genes involved in detox including liver pathways. I have a double deletion in c677t and in one of those important sod genes. Also some liver issues -- slow acetylator etc. some folks who can't handle dursban ( such as Scott) may have a weak pon1 gene. If you can study your 23andme you can get some clues.
     
  15. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    Has anyone here with MCS and/or CFS/ME tried hyperbaric chamber treatment for detox? In theory, it seems to make a lot of sense and it's exciting to think of a treatment that does not have as many side effects as medication, but I haven't heard of many concrete success stories.
     
  16. jenbooks

    jenbooks Guest

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    Dr. William Rea, who is pretty controversial, does recommend oxygen during a reaction; either a small tank or concentrator. 2-5 liters a minute I think. He also has a source for ceramic masks I think. Don't know all the details.
     
  17. HowToEscape?

    HowToEscape? Senior Member

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    One small quibble:

    "defied the tenets of modern science by walking on hot coals"

    There is a well-understood mechanism by which once can walk briskly over hot coals which have been burning for a while. It's possible to get burned if one changes the setup; one firewalk went wrong when the organizers used burning timbers, rather that charcoal which had burned long enough to form a layer of ash. Result: twenty burn cases. Ouch.

    It's also possible to briefly dip a finger into molten lead and still have an intact, unburned finger afterwards. Not recommended for people with health issues ;-)
     
  18. jenbooks

    jenbooks Guest

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    @BeatriceL, that's likely why you were able to live in a camplite with a short period of off gassing. A chemically sensitive individual couldn't. @plant, yes and no about trusting the body. It's a complex system and can make errors.
     
  19. JanisB

    JanisB Senior Member

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    1. I would like to get proper diagosis of this illness, how does one go about doing that ?
    I don't know the answer to this. There are physicians who treat MCS and others who treat Environmental Illness. Those who are members of AAEM http://aaemonline.org/ and ACAM are most likely to be able to help.

    2. Is there any bio marker tests that can be done to confirm? Not as far as I know.

    3. Are there any clinics that actually do "exposure"/reaction testing to confirm this ? Yes. This is done at Dr. Rea's EHCD http://www.ehcd.com/ as most extensive place in the country. Also done by Martha Grout in Scottsdale, by Kalpana Patel in Buffalo, and by others whose names I don't know, as some stay under the radar. Ask others in your geographic area.

    4. Are there any direct blood/urine tests that detect micotoxins, biotoxins, … ?Yes, RealTime labs in Dallas tests for mycotoxins in urine and is recognized as the leader in this area of testing.

    5. What is relation to true allergy (IgE) ? do allergy shots cure? help? how can desensitizing a few environmental allergens eliminate (possibly different) response to hundreds of foods and thousands of chemicals? There are different kinds of allergic reactions, and when the allergists all moved to IgE, many protested, including Dr. Theron Randolph who is mentioned in this article. You might read his book and get a better understanding of other pathways. Sterling Labs in VA does other kinds of allergy testing besides IgE using blood samples, but most physicians who follow Randolph test the patient. Miller follows Randolph in arguing that patients must be relatively clear of triggers for the testing to accurately determine their primary sensitivities.

    6. Can they narrow this reaction down to some immune response, or one of the 5 hyersensitivity reactions (http://en.wikipedia.org/wiki/Hypersensitivity) ? Or is it completely different ? or unknown ?

    7. Is there any relationship to lose of control of the immune system, e.g. low alpha-MSH, low cortisol, or cortisol resistance ? or could something be damaged by high cortisol levels, e.g. PTSD initiated illness ? All sounds possible. VIP supplementation, which works with MSH and cortisol and ADH, has been associated with reduced sensitivity.

    8. Does Dr. Miller, or her clinic in TX diagnose or treat this condition, or is she just in mode to make others aware of this? Is she looking for study patients ? Contact her directly re study patients. She is not a clinician.
     
    Last edited by a moderator: Nov 7, 2013
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  20. JanisB

    JanisB Senior Member

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    Not everyone is helped by restoring glutathione and methylation. I've been doing this since 2005, but got nowhere living in an environment with my primary trigger, mold. I still take glutathione in various ways daily as well as methylation supplements. Be aware that there are other major detoxification pathways in the body, such as acetylation, which is the one used for pesticides and other toxic chemicals, and this requires nutrients such as niacinamide and B1.
     
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