Mast Cell Activation Syndrome: What treatments help you?

Posted by rhawk314 @rhawk314, Jul 20, 2022

I was diagnosed with MCAs about 4 years ago. Since being diagnosed
I have received multiple treatments that either never worked or worked for a short period of time. My symptoms are pretty severe including hives, high blood pressure, Low Vitamin D3, memory loss, brain fog, sweating, flushing, Chronic diarrhea, stomach bloating , etc…
I have been treated with Xolair injections that seems to help for about 7 months until my body began to reject it. I have also tried Chromium. I take multiple anti-histamine daily with little to no effect.
I currently live in Los Angeles and finding a doctor that specializes in MCAS is almost impossible.
I was wondering if the MAYO Clinic in Arizona has any doctors that specialize in the treatment of MCAS.

Best regards, Robert

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I know that the Mayo Clinic in Rochester has a mast cell program. They may have the largest program.
Google "The Mast Cell Disease Society." They have a list of centers. Arizona is not included. The website is tmsforacure.org
In California, Stanford is listed.
Good luck. We have a friend with this condition. She goes to Rochester Mayo.

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rhawk, I was diagnosed with cutaneous masto almost 40 years ago. I am Case #138 ever identified in the US. I am now self-diagnosed with MCAS and had positive results with DAO Enzyme. Unfortunately, recently I've lapsed back into multiple episodes of diarrhea every day despite eating a much lower histamine diet after educating myself and taking 8 capsules of DAO every day (2 capsules, 4 x/day).

How did you get diagnosed with MCAS? I'd be delighted to be wrong about myself. Of course, I'd be even happier to get this under control. My H1 Blocker and H2 Blocker were all I needed to keep my cutaneous masto under control–for decades.

Struggling and searching!

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There is very helpful information on Mastcell360 Dr. Beth O'Hara, I have found the most useful information on this site for helping myself navigate this very complicated issue, figuring out which supplements , meds and why certain ones were making me sick when told to take them by other Dr's. I cannot take DAO, nor H1, H2 . I take Holy Basil, Nettles, Chinese Skullcap, VitC
Rotate and manage my histamine foods. Freeze ALL leftovers. It takes some getting used to.

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@juy77

There is very helpful information on Mastcell360 Dr. Beth O'Hara, I have found the most useful information on this site for helping myself navigate this very complicated issue, figuring out which supplements , meds and why certain ones were making me sick when told to take them by other Dr's. I cannot take DAO, nor H1, H2 . I take Holy Basil, Nettles, Chinese Skullcap, VitC
Rotate and manage my histamine foods. Freeze ALL leftovers. It takes some getting used to.

Jump to this post

Hi @juy77, I thought I would post the link to the Mastcell360 site that you found useful so that others can read the information

— Mast Cell 360: https://mastcell360.com/

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@juy77

There is very helpful information on Mastcell360 Dr. Beth O'Hara, I have found the most useful information on this site for helping myself navigate this very complicated issue, figuring out which supplements , meds and why certain ones were making me sick when told to take them by other Dr's. I cannot take DAO, nor H1, H2 . I take Holy Basil, Nettles, Chinese Skullcap, VitC
Rotate and manage my histamine foods. Freeze ALL leftovers. It takes some getting used to.

Jump to this post

Thank you, juy77! I recently flagged (saved) my latest email from Beth. Why? Part of the article was devoted to other histamine blockers that were new to me.

I have never had digestive problems before but am also taking digestive enzymes. All of this began after the Pfizer double jab!

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@johnbishop

Hi @juy77, I thought I would post the link to the Mastcell360 site that you found useful so that others can read the information

— Mast Cell 360: https://mastcell360.com/

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Many thanks, John. Will check them out again. I believe I've saved something from them as a PDF. Maybe I need to review the info, tweak my daily regimen.

My diet is already so limited. Getting to the point where I'm afraid of food. Under 120 now, which is my benchmark. I've been able to keep my weight up with 4 tablespoons of organic extra virgin olive oil.

Just have a gut feeling (no pun intended) that if I fall to 117 or below, that I'm in big trouble. I'm 5' 5" with long strong muscular/curvaceous legs, broad shoulders and top heavy. So, 120 is as low as I should go.

At my age (going on 70) I never thought I'd be concerned about keeping my weight UP!

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@juy77

There is very helpful information on Mastcell360 Dr. Beth O'Hara, I have found the most useful information on this site for helping myself navigate this very complicated issue, figuring out which supplements , meds and why certain ones were making me sick when told to take them by other Dr's. I cannot take DAO, nor H1, H2 . I take Holy Basil, Nettles, Chinese Skullcap, VitC
Rotate and manage my histamine foods. Freeze ALL leftovers. It takes some getting used to.

Jump to this post

Just reread your reply, juy.

If you have the time, please share why you cannot take DAO, H1 Blockers or H2 Blockers. Verrrry interested.

I am a "health nut" who learned the efficacy of supplements waaaaaay back in the early 1970s. That's when the older brother of my best friend steered me to B Complex (especially B12), Vitamin D3 and cod liver oil. May have saved my life. My dear, dysfunctional family included a bipolar/manic depressive mother (her fourth suicide attempt was successful), severely autistic brother and an alcoholic, wife beating, child molesting stepfather. My life circumstances had not changed but with those supplements I was better able to cope and ceased considering suicide.

Now I take dozens of supplements! Again, they may be keeping me alive since my diet is so limited. I had to cease taking some of them since they're high histamine. However, I get all the basic nutrients and more.

I have yet to add Holy Basil or Skullcap to my regimen. I will definitely look into both of those. I do take Stinging Nettle Leaf and Quercetin with Bromelain.

Via a company called something like Advanced Labs Food Intolerance, I learned I'm low in magnesium. Not surprising when my worst months included up to nine episodes of diarrhea per day. But I've yet to find the right magnesium that won't have a laxative effect. All the supplements in the world won't do me a bit of good if I can't keep them in my system long enough to be absorbed.

Thank you for reading this far. Genuinely interested to learn about you versus DAO and histamine blockers. I have a couple of mottos: God's Pharmacy First and Mother Nature Provides.

Very grateful!

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@frenchie333

Just reread your reply, juy.

If you have the time, please share why you cannot take DAO, H1 Blockers or H2 Blockers. Verrrry interested.

I am a "health nut" who learned the efficacy of supplements waaaaaay back in the early 1970s. That's when the older brother of my best friend steered me to B Complex (especially B12), Vitamin D3 and cod liver oil. May have saved my life. My dear, dysfunctional family included a bipolar/manic depressive mother (her fourth suicide attempt was successful), severely autistic brother and an alcoholic, wife beating, child molesting stepfather. My life circumstances had not changed but with those supplements I was better able to cope and ceased considering suicide.

Now I take dozens of supplements! Again, they may be keeping me alive since my diet is so limited. I had to cease taking some of them since they're high histamine. However, I get all the basic nutrients and more.

I have yet to add Holy Basil or Skullcap to my regimen. I will definitely look into both of those. I do take Stinging Nettle Leaf and Quercetin with Bromelain.

Via a company called something like Advanced Labs Food Intolerance, I learned I'm low in magnesium. Not surprising when my worst months included up to nine episodes of diarrhea per day. But I've yet to find the right magnesium that won't have a laxative effect. All the supplements in the world won't do me a bit of good if I can't keep them in my system long enough to be absorbed.

Thank you for reading this far. Genuinely interested to learn about you versus DAO and histamine blockers. I have a couple of mottos: God's Pharmacy First and Mother Nature Provides.

Very grateful!

Jump to this post

I have Lyme as well as co-infections of tick bite I got back in 1993, Alpha Gal is one of those, so Mammel meat and products sourced from them. Such as DAO and magnesium stereate, the H1, H2 made me feel horrible. Not many man made foods or meds I can take. I keep it very clean, organic and simple. Fowl, Salmon, veggies and fruits, some low histamine nuts.
Fresh is best or frozen!
Best of luck to you, it is hard to navigate.

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Hi @rhawk314, I'd like to add my welcome and some info to add to the great info you've already received from @juy77 @frenchie333 @hsminc and others.

You may also be interested in this related discussion"
– Mast Cell Activation: https://connect.mayoclinic.org/discussion/mast-cell-activation/

Robert, you ask about Mayo Clinic and MCAS specialists at Mayo in Phoenix. Regardless of location Mayo Clinic doctors from several medical specialties work together to provide you with the best care possible. Your team may include specialists in allergic diseases, hematology, dermatology, gastroenterology, neurology, endocrinology and pathology. To submit an appointment request and ask questions about being seen at Mayo Clinic AZ, start by filling out the online form on this page http://mayocl.in/1mtmR63. Once submitted, a coordinator will arrange a phone interview to talk about your needs and whether Mayo is right for you.

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I have a suspected case and have had two major episodes. Just to be clear, this is different than mastocytosis.

I'm curious if Mayo has any resources around this disorder as it's very common as secondary or follow-on to Covid probably partially explains Long Covid.

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