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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Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

Discussion in 'Mast Cell Disorders/Mastocytosis' started by 792e31d6, Mar 28, 2016.

  1. 792e31d6

    792e31d6

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    actup, SickOfSickness, ahmo and 3 others like this.
  2. Gingergrrl

    Gingergrrl Senior Member

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    @792e31d6 Wow, this book looks really interesting and I had not heard of it before. Thanks for posting about it!
     
  3. Firefly_

    Firefly_ Senior Member

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    Yes, thank you. It's also available on the kindle for free if you are an Amazon prime member. I'm going to start it tonight.
     
    actup likes this.
  4. msf

    msf Senior Member

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    But what causes the mast cell activation?
     
  5. justy

    justy Donate Advocate Demonstrate

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    People on the mast cell forums etc have been reviewing it and it is meant to be FANTASTIC! cant wait to read it. I think its only free on Kindle for US prime members.
     
    actup likes this.
  6. Sidereal

    Sidereal Senior Member

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    Looks interesting. I've just downloaded it on Kindle.
     
    justy likes this.
  7. 792e31d6

    792e31d6

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    This is what Dr. Afrin says in the book

    "What causes the disease? That question alone will require decades of effort by an army of researchers. Given that there is a familial predilection for mast cell disease but that different affected members in a given family almost always bear different mutation sets in their mast cells, clearly the mutations causing the mast cell activation in any given patient are not inherited. And yet, if there is a familial predilection for the disease, something involved in the development of the disease must be getting inherited. As I hypothesized earlier, perhaps there is some sort of a “genetic fragility factor” that is inherited and which, upon interaction with one stressor (e.g., infection) or another, causes in the marrow stem cell the mutations that eventually “filter down” to the mast cell. If so, perhaps certain mutations result from interactions of certain stressors with the fragility factor, or perhaps the mutations that result occur at random. Or perhaps there are multiple such fragility factors, further increasing the potential complexity of interactions between them and various stressors. Or perhaps this entire line of reasoning is cockamamie and there’s some other theory that can explain at least as plausibly both the disease’s observed familial predilection and its observed intra-family mutational heterogeneity. What do you think?"
     
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  8. msf

    msf Senior Member

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    Since you ask, Dr. Afrin, I think that in the case of ME it is triggered by an infection.
     
    justy likes this.
  9. ahmo

    ahmo Senior Member

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    Symptoms of MC
    : Interview of 2 women by Dr. Theorharides for EDS group, June 2015
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    I don't have a kindle but my husband does (and we are members of Amazon Prime) but it said you also had to have a more expensive upgraded kindle membership for it to be free which he does not have.

    In any case, we are still planning to get the book in the future. I am old-school and do better with real paper books.

    As far as what causes MCAS, that is the million dollar question and I suspect for me it was a combination of genetic predisposition, viruses, severe mold exposure and possibly immune modulating meds (plus a tendency toward the autoimmune side with newly discovered auto-antibodies.)
     
  11. 792e31d6

    792e31d6

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    @Gingergrrl, one thing Dr. Afrin stresses in the book is that when he digs deep enough into the medical history of his patients he can find signs of the illness go back decades and even into childhood. I'm wondering if that is the case with you?

    It is certainly the case with my wife who was hospitalized when she was 4 for severe uncontrollable vomiting. After that she always had a lot of intestinal troubles which were always assumed to be due to IBS. Even though none of the standard IBS treatments had any effect.
     
    justy likes this.
  12. stridor

    stridor Senior Member

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    Thanks for the recommendation. It is next to buy. I am still having a hard time getting on board the whole MCAS thing. I have always had dermographia and the odd hive here and there but the poop never hit the fan until the 8 months of antibiotics for mycoplasma.

    Dysbiosis and SIBO plus leak(ier) gut are suspected and I am trying to stuff the genie back into the bottle. (Stupid genie mistook what I meant when I said that I wanted "a little more scratch").
     
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  13. Lynn

    Lynn Senior Member

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    Hi Gingergrrl,

    If you have Prime and a Kindle device you can borrow one book a month from Amazon. You have to search for the book from the kindle device then look for the borrow button. I just borrowed this one so it should work for you. I'm looking forward to reading it.

    Lynn
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Absolutely I believe I had subclinical signs of MCAS that go back to childhood (but nothing to the level of anaphylaxis reactions to food dyes and food itself until March 2015- one year ago.) But lifelong there were many higher histamine foods that I could not tolerate (bananas, eggplant, certain fruits & veggies, etc), was always allergic to aspirin, would bruise easily, lifelong severe period cramps, constant nausea as a child, etc.

    I would not have believed it either until one year ago when I got anaphylaxis to a yellow food dye (Tartrazine), then a red food dye, then to certain foods and then to all foods but water. I finally ended up in hospital and my doctor did a phone consult with Dr. Afrin re: my case. It took IV Benadryl for me to be able to eat food. Now I have an MCAS specialist and have a good med regime and no ANA since July of 2015 (but am on a restricted low histamine diet and all my meds are dye free.)

    I don't actually have a kindle (my husband has on old version of one) but we want to buy the book to own it and am thinking of just buying the paper version on Amazon Prime. I just bought another book that I haven't started yet. I am always very slow to start books but then once I start, I can read it fairly quickly.
     
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  15. brenda

    brenda Senior Member

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    I bought the Kindle version and read it. I can see that l have had it since l can remember with all sorts of problems like frequent infections which affected me badly especially childhood diseases, l was particularly ill with whooping cough and measles soon after. I had seizures.

    Then later had to be resuscitated after nitrous oxide at the dentists, very strong demography, extremely painful periods, brain fog, feeling cold at night, and probably a pile of stuff l cannot think of ATM. Oh and headaches and remember l would not take the asprin my mother told me to take. I don't remember if that was due to a bad reaction or was because l had some intuition about meds being bad for me.

    This was no doubt triggered by mercury but later became so much worse after chronic pesticide exposure in my home. I developed severe allergy symptoms requiring 12 medications. I was able to wean off them later but the skin reactions were extreme. Also many rashes and hives through my life.

    I recognised many things as l went through the book. That's as far as usefulness for me goes however as l will not take medications and especially now that the autoimmune paleo diet is working and l am imoroving. I cannot believe how much better my skin is. I don't have any life threatening stuff but have had in the past and breathing problems yes.

    What shocked me was the medical history of the people in the book and the meds they were on and the surgeries they had had. It made me thankful for the medical neglect l have had in the UK.
     
  16. Lynn

    Lynn Senior Member

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    I developed allergies when I was in high school after we moved to a house that was over 100 years old. My mother didn't really believe I was having allergy problems but I was old enough to start taking antihistamines myself. I became an antihistamine junkie. I am kind of worried what that will do to me in later years.
     
  17. Sushi

    Sushi Senior Member Albuquerque

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    When you buy a book that is on Kindle you just click to download Kindle to your computer--you don't have to have a separate device. It is free. Though I know you may want a paper version.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and I did not know that but I think I will wait and get the paper version so I can highlight it and write future questions for my MCAS doc. My brain just does better with paper books, I can't explain it!
     
  19. Gingergrrl

    Gingergrrl Senior Member

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    I take a lot of antihistamines, too, since March 2015 so it's now been one year but with my level of MCAS reactions to food, I did not have a choice. I honestly never think what it may do to me in the future b/c the anaphylaxis was so scary. I am also a very slow metabolizer so I take much lower doses than my fellow sufferers on the Masto boards.
     
  20. brenda

    brenda Senior Member

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    Actually l should try to get a diagnosis and probably an epi pen as l have had anaphylaxis reactions quite often though not all caused unconsciousness, like the time a dentist gave me a local containing adrenaline/epi, and my heart rate went up to 120 and l nearly passed out, then when a doctor gave me the first jab for allergy treatment. Also when l put some antibiotics ear drops in my ear.

    The pesticides caused vomitting then blackouts and two years ago two vomitting bouts from shell fish included seizures. Don't have much hope of being taken seriously though.
     
    justy likes this.

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