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Simon Wessely on Multiple Chemical Sensitivity (MCS): "related to expectations and beliefs"

Discussion in 'Other Health News and Research' started by Laelia, Apr 14, 2017.

  1. hixxy

    hixxy Senior Member

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    I'm Australian and I certainly wouldn't want to do things the American way. We also don't have anywhere near the UK's anti-ME, pro-BPS problems.
     
  2. Mary

    Mary Senior Member

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    Americans may be spoiled in many ways, but not in terms of health care. Have you ever talked to anyone who had to fight with their insurance company to get treatment covered, or who was denied treatment because of a "pre-existing condition", or who just couldn't afford health care insurance altogether? Insurance companies spend a great deal of time and money denying coverage and payment for services, despite exorbitant premiums. Medicare works very well because it's a single-payer health plan and not at the mercy of insurance companies.

    A 2014 Commonwealth Fund study ranked the U.S. last in terms of health care, in comparison with 11 industrialized nations, although we spend the most (this was before widespread implementation of ACA). http://www.commonwealthfund.org/publications/press-releases/2014/jun/us-health-system-ranks-last

    Some of the key points were:

     
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  3. Hip

    Hip Senior Member

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    We need to be a bit careful with words and concepts here, because when you say smells could trigger your MCAS symptoms, I believe you mean that an environmental chemical in the air (which just happened to have a smell) was able to trigger the MCAS, presumably by the direct action of that chemical on the mast cells.

    But the actual smell of that chemical, as perceived by your olfactory system, would not have been involved in triggering the MCAS symptoms.

    I think these sort of conceptual complexities can make it difficult to distinguish MCS from MCAS.
     
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  4. hixxy

    hixxy Senior Member

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    Yes. Ketotifen is also a calcium channel blocker.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    I am solely reporting on my own experiences combined with the explanations of my MCAS doctor. My first reaction was caused by a yellow food dye. Then all dyes, then certain foods, then all foods, then smells etc. It may not apply to anyone else. This was my experience. Have not met anyone else where IVIG put their MCAS into remission but it has happened to me.

    Wow, I did not realize that. That is fascinating to me. Do you know which calcium channel it blocks?
     
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  6. Hip

    Hip Senior Member

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    This is new to me, and interesting. I've just been trying to find some more info about TRP channels.

    This paper goes into detail about the various transient receptor potential (TRP) channels involved in MCAS. They say that in mice at least, TRPM4 plays a critical role in mast cell activation; and in mast cell derived cell lines, TRPC1, TRPC5, and TRPM7 are found to play a role.

    Some info about TRPM channels 1 to 8 given here.

    This page give some info about TRPM4:

    It is interesting to see in the Wikipedia TRP channel article the list of the substances that can activate TRP channels:
     
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  7. hixxy

    hixxy Senior Member

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    @Hip They also have relevance for microglial activation too seeing as they also exist on microglial cells. So might be something else you'd like to read about.
     
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  8. Hip

    Hip Senior Member

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    That's interesting too. So perhaps if ME/CFS involves chronic microglial activation induced by a brain infection, mast cell stabilizer drugs like ketotifen might modulate these microglia.


    Coincidently, I have just started experimenting with ketotifen. I don't have many complaints that fall within the typical MCAS symptoms, but I wanted to try ketotifen anyway. I do have constant nasal congestion, anxiety, irritability and IBS, all of which I read can be due to MCAS.

    Ketotifen doses for IBS are 6 mg twice daily, but I understand with ketotifen, you need to titrate up to the full dose slowly over several weeks. Ref: 1

    However, at them moment I am finding that even very small doses of ketotifen noticeably increase my fatigue, so I have had to begin my up-titration at the very low starting dose of ⅛ of a 1 mg tablet. I am hoping this fatigue side effect will go away after a while.
     
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  9. justy

    justy Donate Advocate Demonstrate

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    Sensitivty to smells is extremely common in the mast cell disease population, including those with Mastocytosis. In fact increased ability to smell things is a common symptom, and one which became unbearable for me a couple of years ago when I couldn't even be in the house when people were cooking and had to eat outside. mY SENSITIVITY TO SMELLS IS NOW LESS but if I can smell something strongly I know this may be something that will trigger me - I am on a lot of mast cell groups and this is a common experience.

    I don't understand what the difference is between the two and how you could tell them apart. For me it was the other way round - had mild MCS all my life, turned full blown MCAS a few years ago. I now believe, and it fits Afrin's hypothesis that I had MCAS all along - before M.E even and it has 'stepped' up in intensity over the years as normally happens with MCAS so I didn't have MCS all along, but mild MCAS.

    I think you need to also be a bit careful with what you are saying - as you explained yourself you know nothing about this area. MCAS can be triggered by a wide range of stimuli, including smells. Its well known and common.

    wHOAH! 12 mg a day!!! you have to e kidding right? for MCAS it is 1 mg twice daily and only if tolerated due to its sedating effects. I had to start on 1/4 mg tab and couldn't increase it for 6 months - am now 18 months later on 3/4 mg at night, the other 1/4 mg in the am. Be careful or you may knock yourself out.
     
  10. brenda

    brenda Senior Member

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    Thanks @justy, that is really useful. I have also had symptoms in childhood that is to say, reactions to fumes in filling stations which l attribute to the damage caused by mercury poisoning from medications before l was a year old, which were later removed from the market.

    Can you recommend good MCAS forums? Also do you know of any allergists in the northeast?
     
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  11. CarolB

    CarolB

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    I identify with your comments completely. My chemical sensitivity has improved over the years, but I have often reacted to a substance before I could even smell it. An example is that unbeknown to me, someone lit a joint in the cinema. My vision blurred and I started to feel light headed. My heart rate increased and I felt shaky and nauseous. I couldn't understand why this was suddenly happening, as I was beyond the stage of my illness where I regularly suffered from these symptoms out of the blue. It was only after about a minute of wondering why I felt so ill that I became aware of the smell. The same happened recently when I entered a hotel lobby and began to experience the same symptoms. It was only after a minute or so that I realised that I could smell chlorine from the spa. I didn't even know that the hotel had a spa when I entered the reception.
     
  12. keenly

    keenly Senior Member

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    'Epidemiologist' :D:D:D:D:D:D:D:D:D:D:D:rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl:

    That means nothing. Why give credence to what imbecilic sociopaths say?

    Acquiescing with the establishment has not helped any of us.
     
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  13. Hip

    Hip Senior Member

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    I don't know much, but from my Googling, I could not see any support for the idea that the actual smell of a chemical wafting in the air triggers MCAS; rather it is the direct effect of the chemical itself on the mast cells that does the triggering. I think that's pretty well established.

    Whereas in MCS, which is much less well understood that MCAS, one of the theories is the reverse: that the chemical wafting in the air does not trigger MCS, but rather it is the smell of that chemical that triggers the MCS symptoms. By the smell I mean the way your olfactory organs sense the chemical and signal this sensory info to the brain. The kindling theory of MCS proposes that it is the actual sensory smell of the chemical that triggers MCS (and so under this theory, any chemicals in the air that are odorless could not trigger MCS symptoms).

    But the kindling theory is not only theory of MCS; there are others in which they propose (similar to the MCAS mechanism) that the direct effect of the chemical itself in the body might cause MCS, not the smell of that chemical.


    Given this, if we want to be precise, it may be a good idea to distinguish between a chemical wafting in the air, and the smell of that chemical.
     
    Last edited: Apr 16, 2017
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Trouble is, the smell of a chemical IS that chemical binding to smell receptors in the nose, or at least the result of that binding. No chemical wafting, no smell. I agree that it seems unlikely that the smell of a chemical will trigger mast cell activation.
     
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  15. Hip

    Hip Senior Member

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    Certainly, as we know, the olfactory system in the nose is a chemical analyzer of sorts, and when a chemical lands on the olfactory receptors, those receptors create "snapshot" signature of that chemical, a signature which one could think of as a barcode identifier for the chemical, and that barcode is then transmitted to the brain, by the olfactory nerves. As we know, that's how our sense of smell allows us to detect the presence of chemicals wafting in the air.

    In the kindling theory of MCS, it is that barcode itself, as it enters the brain and activates a kindled response, that is postulated to trigger MCS symptoms. If you anesthetized the olfactory receptors, so that the barcode cannot be transmitted to the brain, under the kindling theory of MCS, all MCS symptoms would disappear.

    But other theories say MCS is nothing to do with the olfactory system, and that MCS is all about the effect of the chemical as it enters the body and bloodstream and causes some biochemical effects. In the list of mechanisms for MCS provided by James Madison University, the section entitled "Immunological Insults" talks about the MCS theory that chemicals entering the body might affect the immune system, and thereby cause MCS symptoms.
     
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  16. Hip

    Hip Senior Member

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    I am glad you said that, because I was beginning to think I was a bit of pansy not being able to tolerate ketotifen very well.

    The paper did say 6 mg twice daily for IBS though:
    But even when I read that paper, I did think that 6 mg twice daily was a pretty high dose, because most other sources I have seen specify ketotifen doses of 1 mg twice daily. I'd be happy if I can get to 0.5 mg once daily.


    Since @hixxy points out that ketotifen is calcium channel blocker, this I guess may be the reason why ketotifen requires slow up-titration, as nimodipine, another calcium channel blocker used in ME/CFS, also has to be carefully up-titrated.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @justy and I agree.

    My MCAS doctor started me with 2 mg 2x/day (so 4 mg total per day for well over a year) but I was in desperate shape at that time to stop anaphylactic reactions. I got it from a compounding pharm w/no fillers or dyes and did not have any bad reactions although it does cause some weight gain. I only take 2 mg per day now (unless trying a new food, eating in a restaurant, etc) and need to be extra careful.

    12 mg would be a very high dose. My MCAS doc said the max dose for me would be 8 mg per day but I have never had to go that high (but he said it would be safe if needed).

    Hixxy and I were chatting about that and I also asked the question in my CA+ autoantibody group (where we all have the autoantibody but have a wide range of diagnoses and symptoms). It is unclear if Ketotefin is actually a CA+ channel blocker w/some very solid articles saying that it is but others saying that it is an antihistamine and mast cell stabilizer but not a CA+ channel blocker. I truly do not know the answer but wish I did b/c I do poorly w/CA+ channel blockers, and was instructed by three Neuro's not to take them b/c of my autoantibody, yet Ketotefin saved my life so if it is a CA+ channel blocker than that whole theory goes out the window (unless perhaps it does not block the N-type Channel and blocks a different channel)? I wish I knew and @hixxy very much might be right and I lack the background as usual to sort this all out!
     
  18. acer2000

    acer2000 Senior Member

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    FWIW I developed MCS this year after exposure to several chemicals related to my car and repairing it/cleaning it. Antihistamines have no effect on the symptoms. Any similar substance causes the symptoms. I also have relatively significant mold reactivity.
     
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  19. justy

    justy Donate Advocate Demonstrate

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    Mast Cell Activation (UK only) Discussion Group on Facebook is the best (possibly only) UK based group - they have a lot of files with lists of Drs in the UK who will or can diagnose MCAS - most are private.
     
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  20. justy

    justy Donate Advocate Demonstrate

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    Antihistamines may also have no effect in people with MCAS - often we have to spend months or even years finding the correct medications, at the correct doses to decrease symptoms - Dr Afrin himself says MCAS cant be cured and most people will have to adjust to a different way of life. Just taking one antihistamine a day did nothing for my symptoms either - I had to take two a day of a specific one, plus an H2 blocker, plus Ketotifen, plus trigger avoidance, plus low H diet - am still not totally controlled and continue to have serious drug reactions.
     
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