Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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question, does any ME/CFS'ERS not have either all ergic or non-allergic/chemical hypersensitivities?

Discussion in 'Hypersensitivity and Intolerance' started by osisposis, Aug 12, 2016.

  1. osisposis

    osisposis Senior Member

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    airway involvement? maybe some only with stomach involvement that may be a indigestion cause instead of inhalation/environmental exposure, some unsure?

    I know I got ill from exposure in two moldy houses that were very different as was some symptoms and the outcome from each, my airways were heavily involved so no doubt here, now either I got the herpies virus, and EBV virus before and it never caused illness but stayed dormant in the body until these environmental exposures and the severe hypersensitivity disease it caused brought the EBV virus out of hideing and that reaccures everytime a exposure to certain triggers (like mold, chemicals,voc's, allergen, irritants) sets it off or I got it afterwards as a seceptability factor because of the injury from exposure, it doesn't really matter.

    something I've realized is that yep, when I get a cold or flu or something it does not present like pre-ME/CFS did. and the big notice is that it makes my hypersensitivity reactions more severe again! but also seems to wipe out that bug pretty quick in the process. I don't know about how other ME/CFS'ers view the process in witch their disease accured, but interested in hearing from others.

    for me this disease is first and formost severe hypersensitivity disease with seceptability to other pathogens, and fungal infection being opportunistic invader just like other pathogens, they all need to be treated. including the hypersensitivity. and I'm pretty possative fibromyalgia is caused by inhalation, sinus/brain involvement so more specificitly are there people with no chronic sinusitis/rhinosinusitis, severe asthma here?

    environmental exposures can be through inhalation, ingestion, and by durmal /skin, there can be secondary effects to these areas but likely if they are directly involved in your ME/CFS you know it. point is we may all be here because of environmental exposure, in this case the cause needs to be realized as preventive medicine , just like if theres many here that don't get the lengths they need to go to to avoid their triggers, that's important to do with hypersensitivity exspecially when you are reactive to so many things, the immune system is disperate for some relief and it helps the severity overall to practice avoidance of your triggers and it requires paying close attn. to your disease to figure out what a lot of them are and first step is to basicly get all possible triggers out of your living space, food, water, off skin, as much as possible.
     
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Your symptoms appear to match up with MCAS mostly. There are lots of threads here on the subject of Mast Cell Activation Syndrome and there are a few good websites for it as well. There are some people here who do have some experience with these issues.

    http://forums.phoenixrising.me/index.php?threads/what-is-mcas-like.43625/

    http://forums.phoenixrising.me/index.php?threads/has-anyone-taken-ketotifen-for-mcas.38299/

    I wouldn't agree that fibromyalgia is associated with allergies primarily (if I understand correctly). Although one can have both.
     
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  3. osisposis

    osisposis Senior Member

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    theres quite a bit of research showing it's the chemical exposures that induce both allergic and non-allergic hypersensitivities, didn't say fibromyalgia was caused by allergens, lots more involved in the air in a high moisture water damaged building/house. even more so when it's been remoldeled but the water intrusion problems not fixed and mold hasn't been completely removed. secondly the immediate effects to the brain with re-exposures to triggers are not all about allergy, chemicals and voc's play a role and probably a few other things.
     
  4. Battery Muncher

    Battery Muncher Senior Member

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    I find people with ME/CFS tend to fall into two categories:

    1) significant hypersensitivity - heavily affected by basically everything, every medicine or supplement they take has a major effect

    2) significant insensitivity - rarely affected by most things, medicines (such as paracetemol) seem to have less impact than when healthy

    People who are in the first category typically seem more severely affected.
     
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  5. osisposis

    osisposis Senior Member

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  6. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I disagree that MCS is the cause of ME. I didnt have any chemical issues or food intollerances. I got these only after many years of being sick (after I had been doing part time cleaning work for a while while ill). I didnt even ever have an true allergy till I'd had this long term. So I believe MCS is just another symptom of whatever this illness is.
     
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  7. osisposis

    osisposis Senior Member

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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    There's been discussion here on PR as to whether ME is more than one illness.
    Together we represent a huge number of symptoms. The best we have at the moment is the diagnostic criteria Canadian: https://fm-cfs.ca/support/patients/cfsguidelines/ME-Overview-1.pdf or International: http://solvecfs.org/international-consensus-criteria-published-for-myalgic-encephalomyelitis/

    Some opine that we all have Lyme disease or that ME is EDS (Ehler Danlos syndrome). Many people with ME have other health issues that seem to cluster around having ME.

    I don't know what the answer is to any of this but I think we might leave open the possibility that not all of us have the same illness or to look at it differently we have subsets of the same illness. But not all of us can be described as having what you have.

    I believe it could be possible for mold to create some kind of illness but not everybody who is exposed to mold gets sick so something outside of the environment is also at play.

    There may be good reason to see medical facilities set up to deal with environmental illness but that would not help many people who have been given the ME diagnosis (by default). It would be interesting to sort out what percentage various subsets are. But I would expect this to not be totally reliable as many (especially those newly ill) may not be aware of alternative diagnoses and we may be self reporting in error.
     
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  9. osisposis

    osisposis Senior Member

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  10. osisposis

    osisposis Senior Member

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    holy cow, yes, I'm upset, after the moldy house exposure I was diagnosed with PTSD, highly sensitive to multiple molds and mold mixes, dignosed with fibromyalgia, CHRONIC SINUSITIS/RHINOSINUSITIS,IBS,EEG testing off the charts , had specific Ig testing , dignosed with fibro a few more times, diagnosed with CFS and fibro again, believed by a infectious disease doctor in 2007 but he prescribed pain killers I had already told him I couldn't tolerate, cant even go to the denest without suffering reactions from just the smell and when injected with numbing agents my whole body went into trimmers mode. it's been one thing after another, don't bring up Shoemaker, been there, he didn't like me because I couldn't tolerate CSM and sorbital , he refuses the allergic side of this and he doesn't have all the answers like others in that field largely because they have ignored the voc's the allergies, the mast cells, been to Gray in Az. ignored that to because they all on the mycotoxin band wagon even tho they say they consider everything involved in the water damaged building. I'm a outcast because I'm in the severely ill group of ME/CFS and the larger portion of people exposed in water damaged buildings/moldy indoor environmental don't show allergies to the molds they were exposed to.
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    I understand the fear of trying something like an antiviral if you have significant sensitivities. It's always easy for the medics to say do this or that and you'll be well. Perhaps getting the sensitivity under control--does it not help you if you take antihistamines or are you sensitive to those?

    I know there are others here struggling with sensitivities--it sounds horrible to deal with.
    We all could use some better expert medical solutions.
     
    osisposis likes this.
  12. Horizon

    Horizon Senior Member

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    I break out in hives or itchy bumps from random stuff. It's not a "real" allergy but obviously I'm sensitive to something.
     
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  13. osisposis

    osisposis Senior Member

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