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

[Who Me?]

Glad to help @Upgrayedd I'm taking Singulair, Zyrtec, quercetin, Rutin for now. I have some ketotifen coming and some pepsid. I take doxylamine and chlortrimeton for sleep. Oh and I added suntheanine last night.

From what I've been reading treatment is very individual. What works for one does not for another. No clue if your allergist is right or not. I never thought I had food issues but now I wonder so I'm working on that.

I just posted something about Mangosteen which is on the list.

Not cured yet though.

 

[Who Me?]

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.

I managed to read some of it. After awhile my brain just 'checks' out and I can't read anymore.

 

[weyland]

Seems many with EDS and POTS have MCAS.

Some of this may be iatrogenic. There are several recommendations in the medical literature not to use beta blockers on POTS patients because it may trigger onset of MCAS.

 

[Darden Burns]

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...

I've been looking into the mast cell thing for the past year. Its an overlapping condition with EDS, which I have. I have tryptase levels that are slightly elevated, enough to diagnose me with some kind of mast cell disorder. I do not however any allergic type symptoms (flushing, itchiness, dizziness, GI symptoms) so it does not seem appropriate to take an antihistamine (ketotifen was prescribed) as these only block H1 & H2 sites. I'm highly reactive to most drugs, stimulants, nutritional supplements, sugar and foods with histamine (histamine intolerance).

My reactions manifest themselves as agitations of my central nervous system - elevated muscle tone in head and neck, feelings of agitation, fatigue and poor sleep. My tryptase levels are pretty consistent even when I am in a reaction.

Out of curiosity I had my tryptase tested after a particularly good night of sleep when I felt very relaxed and before I ate breakfast. My levels were slightly higher at that time - an unexpected result that changed my thinking about all of this.

I have a hypothesis about what might be going on. Like many people with CFS, I have low cardiac output - low blood pressure and slow pulse when resting and I suspect low blood volume as well.

There is such a thing as cardiac induced mast cell activation, although not a lot is known about it. I think the mast cell activation may be keeping my heart from slowing too much. That would explain why my tryptase levels are higher when I am very relaxed. I tried taking quercitin - a mast cell stabilizer.

The first time I took it I slept through the night and had a normal bowel movement the next day - two unusual occurrences for me. The second night it worked half as well, the third night not at all and then it began to agitate my system. I believe my system was threatened by the stabilization of my mast cells so it quickly built an intolerance to the quercitin. (I have experienced this phenomena with other therapies).

It may turn out that the chemicals produced from the mast cells are actually helping me - stimulating my cardiac function. If that is the case I believe it is counterproductive for me to either block the effect of the mast cells or to try to stabilize them.

 

[Who Me?]

@Darden Burns Please put in paragraph breaks. Many of us here (me) can't read huge chunks of texts.

@Cort can you fix this?

 

[Issie]

I can't read it either. More paragraph breaks would help @Issie

Page breaks are put in. @Cort, I'm not getting any notices of updates or comments.

 

[Issie]

Some of this may be iatrogenic. There are several recommendations in the medical literature not to use beta blockers on POTS patients because it may trigger onset of MCAS.

This is a definite. Beta blockers seem to be one of the first meds tried for POTS. what a diaster of a trial that was for me. Horrible.

 

[Remy]

This is a definite. Beta blockers seem to be one of the first meds tried for POTS. what a diaster of a trial that was for me. Horrible.

"Beta blockers" are such a wide class of drugs though. They have very widely varying mechanisms and side effect profiles. It's really not fair to lump them all in together even though medicine seems to have done just that. It's also possible that many wouldn't work and another one would be like a miracle unfortunately. Trial and error sure does suck.

 

[Who Me?]

"Beta blockers" are such a wide class of drugs though. They have very widely varying mechanisms and side effect profiles. It's really not fair to lump them all in together even though medicine seems to have done just that. It's also possible that many wouldn't work and another one would be like a miracle unfortunately. Trial and error sure does suck.

I also wonder if there is a difference between selective vs non-selective beta blockers? I've tried 3 different ones for an intermittent problem and the only one that works for the problem is propranolol, a non-selective BB.

 

[Issie]

"Beta blockers" are such a wide class of drugs though. They have very widely varying mechanisms and side effect profiles. It's really not fair to lump them all in together even though medicine seems to have done just that. It's also possible that many wouldn't work and another one would be like a miracle unfortunately. Trial and error sure does suck.

I tried at least 4 different ones. None were a good fit for me. Most were tried before MCAS was figured out.

 

[Cort]

For some reason Mike's very interesting comment did not go through (sigh)

This is an amazing write up For me, I want to thank you Cort.

In brief Dr Klimas suspected some form of Mast Cell dysfunction. Along with all the typical symptoms of ME/CFS a year ago I began experiencing severe neural mediated syncope w tachycardia. Symptoms continued to get worse. Not only was blood pooling in my feet, my veins were so dilated they looked like pipes about to burst.

In short I went on Zaditen and it turned my syncope around to slightly elevated blood pressure w tachycardia. My local Hem/Onc tested me for Tryptase and KIT D 816 Mutation and referred me to U of Michigan. In the interim the test was negative and he sort of said to blow off U of M and a biopsy. I knew something wasn't right and that Zaditen, Neuroprotek, and Seeking Health Histamine Blocker (DAO Enzyme Supplement were helping. As I learn more I will follow up with more detail but wanted to post the community that this is real and Dr A and Klimas are clearly on to something. I apologize for brevity but will elaborate when I have more time and information!

Thank you Cort for keeping me going with this lead!

 

[Cort]

For some reason Mike's very interesting comment did not go through (sigh)

This is an amazing write up For me, I want to thank you Cort.

In brief Dr Klimas suspected some form of Mast Cell dysfunction. Along with all the typical symptoms of ME/CFS a year ago I began experiencing severe neural mediated syncope w tachycardia. Symptoms continued to get worse. Not only was blood pooling in my feet, my veins were so dilated they looked like pipes about to burst.

In short I went on Zaditen and it turned my syncope around to slightly elevated blood pressure w tachycardia. My local Hem/Onc tested me for Tryptase and KIT D 816 Mutation and referred me to U of Michigan. In the interim the test was negative and he sort of said to blow off U of M and a biopsy. I knew something wasn't right and that Zaditen, Neuroprotek, and Seeking Health Histamine Blocker (DAO Enzyme Supplement were helping. As I learn more I will follow up with more detail but wanted to post the community that this is real and Dr A and Klimas are clearly on to something. I apologize for brevity but will elaborate when I have more time and information!

Thank you Cort for keeping me going with this lead!

Now check out this rather amazing email Mike sent me:

In short Ketotifen turned my Neural Mediated syncope (60/40)and tachycardia into regular BP w tachycardia.
Amazing.. Prior I had to use midodrine, salt, etc- not only did I have pooling in feet - my veins were so dilated they were popping out.
I then was clued into vasodilator RX - alpha antagonist - like trazadone that was exasperating the situation and cut that out. Switched beta blocker to Ivabridine.

However, I tested negative Tryptase and the Kit.

Who would have thought that Ketiotifen would have fixed his neural mediated syncope (drop in blood pressure causing fainting)?

But now Mike dealing with the mastocytosis problem that Remy alluded to: because he tested negative for it - his doctors are not interested in mast cells anymore (lol)

Just found out the Mast cell specialist at U of Michigan has left. They won't see me bc I tested negative for Mastocytosis????

It's great to hear that Dr. Klimas is fully in the game as well. Not a surprise, really; that woman has a mind like a supercomputer and she just wants what works...

 

[Cort]

@Darden Burns Please put in paragraph breaks. Many of us here (me) can't read huge chunks of texts.

@Cort can you fix this?

Fixed...

 

[Cort]

@Remy - does Dr Afrin's book give a list of MCAS doctors?

Mike is looking for a specialist in the Midwest I think.

 

[Who Me?]

Afrin is in Minneapolis I think.

 

[Remy]

@Remy - does Dr Afrin's book give a list of MCAS doctors?

Mike is looking for a specialist in the Midwest I think.

I don't recall seeing one unfortunately. I know of the group in Boston, Dr Afrin in MN, and there is also a doctor in Long Beach CA.

 

[Cort]

You are so right plus Afrin's website has a list of MCAS knowledgeable physicians

http://meandmymastcells.com/dr-lawrence-afrin/

Muchas gracias

 

[Who Me?]

@Cort I was googling mast cell and histamine the other day and found some MCAD forums. They were talking about docs. At that time Afrin was new to it and they did talk about a doc in Boston but I don't remember the name. One of those forums would be the place to go I think.

 

[Cort]

Really good blog here - http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/
and a warning about testing:

A word of caution about laboratory testing… many of the labs that can be ordered need to be sent on ice. If the labs are drawn at a facility that does not understand what is necessary, the samples may come back falsely normal. Testing is ideally going to be abnormal immediately after a flare up of symptoms. It would make sense to wait for testing on a “bad day.”

There are several labs that can be ordered to help identify mast cell activation, but none of them are 100% accurate and all should be interpreted with care.

This doctor is at Scripps in San Diego

Dr. Andrew White is board certified in Internal Medicine and Allergy & Immunology. His practice at the Scripps Clinic in San Diego, California focuses on immune deficiencies and allergic disorders, including MCAS and mastocytosis. His research focus is on aspirin exacerbated respiratory disease.

 

[Cort]

@Cort I was googling mast cell and histamine the other day and found some MCAD forums. They were talking about docs. At that time Afrin was new to it and they did talk about a doc in Boston but I don't remember the name. One of those forums would be the place to go I think.

Could it be Theoharides?...good idea. Afrin has a forums as well.