Mast Cell Activation Disease - The Modern Epidemics of Chronic illness - Afrin

A Book Review by Remy

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Cort submitted a new resource:

    "Never Bet Against Occam: Mast Cell Activation Disease - The Modern Epidemics of Chron - A book review

    Read more about this resource...
  2. Who Me?

    Who Me? Well-Known Member

    @Cort There is one huge paragraph if you could break that up and under genetics there is something in code.
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Still working on it....should have it done soon!
    Who Me? likes this.
  4. Who Me?

    Who Me? Well-Known Member

    Sorry I didn't see where you said "under construction". Carry on Lol
  5. Veet

    Veet Well-Known Member

  6. Who Me?

    Who Me? Well-Known Member

    @Veet I just read that over the weekend! I'm going to do it. Got some stuff including ketotefin.

    Started Quercetin this morning and am slowly upping my Rutin. Not sure Luteolin did much. I know you mentioned mangosteen so I'll keep that on the list to try.

    @Upgrayedd Here you go.
    Upgrayedd and Veet like this.
  7. Veet

    Veet Well-Known Member

    @Who Me? Excellent. I didn't realize there was a new workshop until I just copied and posted this.
  8. Who Me?

    Who Me? Well-Known Member

    Oh and reminds me I have to dig out my Suntheanine. I took my last one last night and I know I have a new bottle in the recesses of my stash!
  9. Who Me?

    Who Me? Well-Known Member

    Can someone tell me where bromelain fits into all this? I've seen it with quercetin and I was curious
  10. Who Me?

    Who Me? Well-Known Member

    Thanks for the great review @Remy I'd never be able to read the book and you wrote it in a way that I can understand.
    Remy likes this.
  11. Who Me?

    Who Me? Well-Known Member

    @Veet or @Remy. If you know your going to do something that causes
    Inflammation (for me it's flamingo). I had to leave that autocorrect for talking lol, is there a way to stop it before it starts?
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Yes, thanks very much to Remy for that excellent review of a subject I know little about. Much appreciated!
    Remy, Lissa and Who Me? like this.
  13. Issie

    Issie Well-Known Member

    Most of us with MCAS don't use Tagament as it can cause issues with an enzyme that can potentially cause more issues with histamine.

    Zantac is my favorite for an H2, and I only use a half. My preference for an H1 is Allegra. It causes less issues with brain function, for me.

    I am one that also has hypogamaglobulinemia with MCAS and POTS along with EDS. this we refer to as the trilogy. Seems many with EDS and POTS have MCAS. FYI, you need to use a H1 with an H2.

    Using an H2 alone causes it to convert to an H1 and causes allergy symptoms to be worse.

    GastroCrom has been a HUGE help to me. I find it to be extremely beneficial for many reasons. It is also a mild calcium channel blocker and helps with tachycardia of POTS. I was able to use it without ketotifen. Though some need both.

    Singular wasn't a good fit for me. But some need it too.

    As mentioned in the article; emotion, activity, heat are also triggers. For many, sex and arousal is a trigger.

    Many women who just can't seem to get their hot flashes under control - it could be MCAS.

    Alcohol is a big trigger for most of us.

    Overly hot baths or showers are not good. We tend to have problems with regulating our body temperatures.

    I have had times where I can go off my meds and stay strict to my diet and do pretty well. I have found being gluten free and mostly vegan to be a big benefit.

    But put me under stress and meds are necessary.

    I do have an epipen as I've had mast cell "attacks" with my heart. Called Kounis Syndrome. Appears just like a heart attack and the treatment is nitroglycerin and massive antihistamines along with saline IVs. But thankfully there is no heart muscle damage.

    I also have to use herbals to keep my blood thinned out. Thick blood and blood clots run in my family. There appears to be a genetic connection too. We feel quit certain, My mom had it too. All the signs were there, just undiagnosed.

    Yes, it can affect every function of your body and give some very uncomfortable symptoms. But it can be managed.

    It's not a true allergy but an over activation or degranulation of mast cells. Sometimes there is no rhyme or reason for it --- it just is.

    Last edited: May 10, 2016
    Lissa likes this.
  14. Tory

    Tory Member

    Sorry I can't read it all at the moment so sorry if I repeat anything and I am not very scientific either but just wanted to say I think hormones play a big part. I had a cough and sneezing at the same time every month and now I am going through the menopause it is following a pattern with what my hormones are doing.
    This is why I think some people say they never get colds while others say they get every cold going, I always used to think I was coming down with a cold but it never developed further, now I know that it is my hormones causing it.
  15. Who Me?

    Who Me? Well-Known Member

    I can't read it either. More paragraph breaks would help @Issie
  16. Who Me?

    Who Me? Well-Known Member

    @Carollynn I'd love to read your post however there is not enough paragraph breaks so it's impossible for me to read. Can you put in paragraph breaks in the big chunks of text? It doesn't have to make sense where you put them. Thanks
  17. Carollynn

    Carollynn Active Member

    Same post as earlier, lots of paragraphs breaks per requests:

    I read up on this two years ago with enthusiasm and brought the info to Dr. Chia who referred me to a local immunologist/allergist, Dr. Chiang. Most of my ME/CFS symptoms read just like MCAS: POTS/NMH/OI; Multiple Chemical Sensitivity, allergies to foods, molds, pollens; interstitial cystitis (IC); recurring sinus infections, low IGG (but not low enough for IV-IG treatment), heat intolerance, etc.

    The only test that Chiang could do within my insurance was a blood test for tryptase, and I came in at the low end (2) of normal (2-10). For FDA measures, that makes me "normal," no MCAS problem.

    Yet just as Cort reports, the only treatments for MCAS are management with antihistamines of various kinds, so in a way it didn't really matter if I was borderline or not. (I'll write about what I take for it, below.)

    Hoping I might benefit from further testing, I called a doctor's office of someone prominent in the field based on the East Coast, asking for a referral--not an official insurance referral, just the name of someone--of a doctor in my area who might be familiar with this, but no return call was made. I believe I left a second message as well.

    Doctors familiar with MCAS are as lacking as doctors familiar with ME/CFS.

    Yet something in the allergy arena but outside of these standardized tests is definitely at work in me. Dr. Chiang has agreed that there is much in immunology and allergy that is unknown--a refreshing thing to hear!

    I have severe reactions to some foods--basil, bell and chile peppers, mango, crab (and yes, I joke that I could do myself in with a Thai Salad!)--in the usual way with hives all over my body, throat swelling.

    I can't have scratch allergy tests because I can't be off of some H2 blockers long enough for them, so I've had blood tests, and all of the blood tests say that I am not allergic.

    Thankfully, a previous allergist, after seeing the pictures of hives all over my torso, said "that's the real test; you clearly have an allergy."

    I carry an Epi-pen, a small bottle of Benadryl at all times. The basil (often hidden in the ingredient "spices") and peppers are the most common sneaker ingredients if I eat out, even when servers and chefs have gone to some trouble to keep me safe.

    There are just some cuisines, like Mexican, with a preponderance of chiles where, try as they do to eliminate them from my meal prep, their cutting boards and pans are infused with chile oils, even when clean. I come home to have a reaction, even if it tasted safe at the time. So I don't try those anymore.

    Something I hope might help others is to know that other serious reactions they may have to foods may not register with allergy blood tests but would be considered allergy on some allergy organization websites and as part of MCAS.

    [For me] It's immobilizing stomach cramping, and then also, just once, a sudden and severe drop in blood pressure. Thankfully fainting because of POTS trained me in what a sudden loss of blood pressure feels like, or I fear that I would have died on one episode, truly.

    In an episode before that--before I recognized that it was cashews that did it--I had such severe cramping at the top of my sternum that I went to the ER, fearing a heart attack.

    After I figured out the cashew connection, I have not experienced these incapacitating cramps. I have wondered if others with ME/CFS have pain because of this when I read about severe abdominal cramping as a symptom.

    Incidentally, mango and cashews are related plants, so it is common to develop allergies to both. Mango showed up for me about six years before cashews. Pistachios are also related, but I can eat them.

    If you become allergic to one food, it's good to know about related ones so that you can be cautiously observant with them. (I have no problem with shell fish other than crab, and can eat oregano and mint but not basil; do fine with potatoes, eggplant, and yellow tomatoes, but red only if they're cooked, in the nightshade family with peppers.)

    Interstitial cystitis is a mast cell problem that impacts the bladder, and strawberries can lay me up for a few days, the worst of all IC foods for me.

    Last year Dr. Chiang did blood tests for bee and wasp allergies, and those came back with some positive results so we began allergy shots. Again, my response was atypical.

    The idea with allergy shots is to start out with a tiny amount of the allergen injected into your arm and to slowly build up the amount, your body adjusting incrementally until you are no longer allergic.

    You get a shot in the shoulder, alternating on each visit, and then wait 30 min. in the allergist's office to see if there is a response. They're looking for redness, swelling at the site of the shot, anaphylaxis/throat swelling--the usual suspects. You go twice a week, maybe for six months or more.

    For me, the first week was fine, but at the end of the week, hours later and especially at night, my shoulders itched.

    The next week I did fine at the allergist's office for the two shots, but my arms really itched at night.

    The third week I had hives on my torso and arms so we stopped the shots.

    The weird thing is that because my body didn't respond according to the protocols--big reaction within 30 min. of the shot--they couldn't alter how it was administered! I asked if I could have the shots alternate locations, like thighs and abdomen, since they're just subcutaneous, but nope, had to be the shoulder.

    Clearly I'm allergic, but not in a standard way. I will press for treatment again later this year, but it's difficult to have to work it always, always the atypical presentation.

    When I'm at my best I like to think that my questions will help to move the science forward, but when you feel so unwell it's hard to stay that optimistic and persist.

    A few months ago I had sinus surgery, and I'll write about that more in another forum, but right now I feel like having a bit more space in there may help me to not have so many lingering infections hat wipe me out for months on top of ME/CFS t.

    It's Spring, so I've been curious about how my usual seasonal allergies would feel, and I can just say that while I feel them it IS better to have more room in there. But I still have allergies of course, and must continue to take allergy meds.

    Allergies go hand-in-hand with many of the viruses suspect in ME/CFS to reveal a Th2 dominant immune system. (Dr. Chia also has measured in my blood elevated levels of EBV/HHV-4, and HHV-6 as well as enteroviruses, echoviruses, and Chlamydophila pneumonia.)

    I also have chronic shingles, which is HHV-3/Varicella zoster virus, for which I have had to remain on the highest dose of Acyclovir (8000 mg 5x/day) since 2009. I still sometimes have break-through flare-ups, particularly troublesome in my eyes and ears.

    For the shingles/VZV he [Chia] also prescribed Cimetidine (generic Tagamet), the H2 blocker, because it helps tip the immune system toward Th1 as well as holds the Acyclovir in the system longer. I take 200 mg Cimetidine 2-3 times/day. When I have tried to go off of Cimetidine, I get a shingles flare up.

    I take Benadryl as a sleep aid as well for allergies, and Claritin. Because of shingles in my eyes and ears, I can't use anything steroid-based for sinus sprays (such as Flonase or Nasonex) because steroids can wake up herpes viruses, which they did in my ear and eyes, so I use the anti-histamine spray Azelastine.
    I also take Quercetin.

    All in all, I take a lot of antihistamines and histamine blockers! While I can still have a fairly big allergic reaction to accidental ingestion of foods I'm allergic to, all these H! & 2 blockers help my interstitial cystitis; I can have a big mug of coffee in the morning and a glass of white wine at night because of the Cimetidine. Small pleasures like this are much appreciated.

    Just one last note--which is a bummer. Benadryl and many other drugs are anti-cholinergic, a class of drugs recently linked quite dramatically to dementia.

    In time, I would like to get off of Benadryl, but it's such an important part of my sleep regimen. Many of the Rx sleep aids and other antihistamines are anti-cholingerics, too, so it's no an easy task to make this transition.

    For now, the health crisis of ME/CFS is here, with its terrible impact on sleep, so I continue to address this crisis and just hope I live to be old enough to be so lucky to deal with the impacts of older age.

    Modern medicine knows a lot about the common conditions. It's the outliers like MCAS and ME/CFS that remain mysteries. I hope we have Centers of Excellence soon.
    Lissa and weyland like this.
  18. Who Me?

    Who Me? Well-Known Member

    Thanks @Carollynn Why not go back and delete the other post so as to avoid confusion. Delete is the bottom left of the post.
    I'll have to figure out how to read this. My brain is not happy today
  19. Upgrayedd

    Upgrayedd Active Member

    Thanks for looking out for me, @Who Me? !

    I'm very interested in this, as I have always suspected allergies/histamine as an element of my CFS/ME. When I was first getting sick, I would take antihistamines for a few days and feel better, and then stop and crash. But as time went on, I went down in a spiral where nothing worked and everything got worse.

    Years later, an allergist ran a blood test, I don't recall the exact one right now, but basically he told me I was very prone to hives and other allergic reactions, and that there was nothing much I could do about it.

    These days, I do take Claritin on and off. Allegra did not agree with me. I'm thinking of experimenting with adding an H2 med, like Zantac (as @Issie mentioned above) - I never thought to take them at the same time (Claritin and Zantac). Also, maybe adding some of the supplements mentioned in the article.
    Who Me? likes this.
  20. Carollynn

    Carollynn Active Member

    Earlier post deleted. Thanks for the requests.

    Feel better! It's hard to read a lot at once; hard to write it sometimes too. But this is a subject I've been meaning to share about, so I'm thankful for the chance.