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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Just wondering why MCAS is so common in certain conditions?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Hope78, Jul 12, 2017.

  1. Hope78

    Hope78 Senior Member

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    Hi! I spend a lot of time reading in mast cell support groups (facebook and so on) and I rarely met a person who does not have something like:

    - fibro
    - cfs
    - mcs
    - eds
    - autism

    The mast cell activation seems so extremley common in these folks. I don't think mast cell activation is the main reason for these symptoms in most of the people, I think it's the other way around and so many faulty metabolism pathways lead to the development of mcad.
    But I am always wondering about the "common denominator" of the mcad. Is it low adrenal function? Immune dysregulation? Dysregulation of the nervous system...?
    What are your thoughts about it?
     
    Malea likes this.
  2. lansbergen

    lansbergen Senior Member

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    Mastcells just doing their job.
     
  3. Hope78

    Hope78 Senior Member

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    How do you mean that?
     
  4. lansbergen

    lansbergen Senior Member

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    Respomse to a threat
     
  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    When functioning normally Mast cells don't respond at all to things that are innocuous/benign. I think this is what the OP is getting at. It is not just doing their job when they respond to the benign.
     
  6. Hope78

    Hope78 Senior Member

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    Yes, that was what I thought, too. I can only eat 10-15 things in small amounts due to mastcell overreactions. That's not normal or healthy at all.
     
    lemonworld likes this.
  7. lansbergen

    lansbergen Senior Member

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    But when there is no test for a pathogen one can not be sure it is benign.
     
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    Well, if you are responding with a reaction to something almost everyone else does not then I think you can categorise that as generally benign.
     
    Hope78 likes this.
  9. Ravn

    Ravn Senior Member

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    I've been puzzling about this, too. There seems to be little doubt that there is some sort of connection between mast cell disorders and ME. In fact I recently stumbled across a study (that I've lost now) that found certain mast cells more activated in ME patients than in healthy controls.

    The real question then is what exactly that connection is. I've come across 3 lines of thought:

    1. ME (or a subtype of ME) is a form of MCAD.
    2. Some part of the ME disease process irritates mast cells and causes them to be overactive.
    3. ME and MCAD are separate conditions but have a common trigger.

    The distinction is important. In case of option 1, succesful treatment for MCAD should help also ME. In the other two cases, treatment for MCAD would only help MCAD symptoms but do nothing for ME.
    Personally I'm tending towards option 2 but that's just a gut feeling.
     
    Gingergrrl likes this.
  10. chilove

    chilove Senior Member

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    Limbic system injury (due to trauma, chronic infections, toxin exposure, TBI, etc...) could be the cause of most of those including MCAS. The limbic retraining folks (Annie Hopper and Gupta) claim success in treating mast cell issues as well as many of those other disorders. The theory is that nervous system dysfunction from a limbic injury creates immune dysregulation as well as endocrine and digestive system issues which can cause all types of problems.

    I've been using limbic retraining and it does help mast cell reactions a lot. Last night I stopped a developing reaction using progressive relaxation and the limbic retraining steps.
     
    Jasper80 likes this.
  11. chilove

    chilove Senior Member

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  12. chilove

    chilove Senior Member

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  13. Jasper80

    Jasper80

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    Hy,

    I am a very Special case, but maybe it Can Help to understand how MCAS occures or why.

    I had a car accidend when I was 8 or 9. A very hard Crash (about 50 mph) in my left side. It seems that I have a sort of EDS because I´m hypermobile and never had any pain in my Spine.

    Unfortunately (I know now) that Trauma caused a MCAS in the area I have been hitten bye the car. Only on the left side. The Mastcells never went apoptosed like they normaly should after a while (They came to repair and protect that area), which is common in MCAS. Not only that they are Hyperactive, they don´t dye like they should.

    So I had inflamation in that spinal area over years, which startetd to affect my nervous System and my Spine. My
    vertebral Body (right word ?) of my spine are chronic blockaded eversince and I never felt any pain.

    Until I got my first Neuropathie and the nerve melted down somehow (also due of a lack of b12 and other methyldonators). The Mastzells are also in my brain. Now my spine is totally damaged and I have nearly no Chance to cure it and the nerves until the Inflammation would vanish. Which is impossible so far.

    i also had a very very stressful childhood and because of the health issues eversince a hell of a life. My ME/CFS gets Way worse when my mastzells are activated. The Inflamation also ruins the gut and the mitochondria.

    Mcas occurs through

    Trauma
    Allergy s in Childhood
    and very stressful Events.

    and it has a genetic Background. Some if the Symptoms you Can cure, but some will last.
    I think the nervous System is one of the main parts.

    Does it make sense? Sorry I am a Little confused today, but I´m really a prototype for all that stuff and I have it all.
     

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