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

[Who Me?]

Not theoharides. It was a woman. Can't remember her name.

 

[weyland]

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

It probably wasn't NMH then but histamine or other mediator induced vasodilation.

 

[Remy]

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

Drs Akin and Castells run the Mastocytosis clinic at Brigham and Women's Hospital in Boston. They treat MCAS patients too but the paperwork to be accepted there is insane according to my LLMD. You cannot self-refer.

http://www.brighamandwomens.org/Med...s/ppd/2012/April2012/mastocytosis-center.aspx

 

[Remy]

There's a list of doctors here:

http://meandmymastcells.com/category/the-doctors/

 

[Issie]

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

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

Dr Brent Goodman is a neurologist at Mayo, AZ. And there are now two immunologist there that he works with in regards to his POTS patients with MCAS.

Issie

 

[Cort]

Dr Brent Goodman is a neurologist at Mayo, AZ. And there are now two immunologist there that he works with in regards to his POTS patients with MCAS.

Issie

You guys are good...Thanks - I added them to MCAS Doctors resource

 

[lynn]

After starting the book, I decided to try to get an appointment with Dr. Afrin. I live in the Minneapolis area. Unfortunately he is booking a year out. My appointment is in May of 2017. I'll let you know if something comes of it.

In the meantime, I tried adding Pepcid AC twice daily and upped my dosage of zyrtec to twice daily. i got extreme headaches and had to stop after about 10 days. I am pretty sure it was the Pepcid AC because I continued with the increased dosage of zyrtec. Maybe I will give Zantac a try next.

Lynn

 

[Remy]

This is a great short video about one of Dr Afrin's patients...

http://www.cnn.com/videos/health/20...rynn-duncan-mast-cell-activation-syndrome.cnn

 

[Who Me?]

I remember a guy years ago who moved to AZ or NM in completely allergy free home.

I find it interesting that there is carpet in her home.

 

[Hezza]

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.

Issie

Issue,

I have pondered this as a possibility for me & my family (lotsa members manifesting ME/CFS, POTS, FM, IC etc in varying combinations). I've never had a typical severe allergic reaction to anything.

However in the past year I've been blessed enough to get in to see Dr Vera at INIM. Among other slight things showing up my histamine levels were high normal.

She diagnosed a bad case of POTS & began treating that. But this year have experienced, after sipping margaritas for an afternoon, severe BP drops about 12 hrs later (like 65/41). At first we didn't make the connection until it happened 3 more times.

Hadn't "caught" anything in years. Those same years had been severely disabled w MECFS (housebound to bed bound). Dr Vera began slowly treating my immune system: LDN & Vit D 3, then Inosine, then Reishi. I have experienced tremendous improvement in pain levels.

But about 6 weeks ago "caught" a cold. My NP suggested an increase in Vit D3 (CDC protocol for colds & flus) It did indeed cut my cold in half but my pain skyrocketed, sleep went wonky & my eyelids exploded with what looked like severe psoriasis. (Have had patches off & on for years)

Right now I've just come from the dermatologist & she declares this is an allergic reaction. My sister has had the same thing on her eyelids before & ive seen it on my first cousins at times.

Have you ever experienced this as part of MCAS? Or does this sound familiar to anyone?

 

[Who Me?]

@Hezza Talk to @Remy about Vitamin D. She has huge problems with it messing up her sleep and I'm looking into that too since I take a lot.

 

[Hezza]

@Hezza Talk to @Remy about Vitamin D. She has huge problems with it messing up her sleep and I'm looking into that too since I take a lot.

Thanks Who Me?

I immediately laid off the Vit D3, backed off on some of the Inosine & Reishi. My sleep got better & pain levels decreased again. But 4 weeks later "caught" another cold. Just rode it out. But my eyelids have only gotten worse. My sister who has experienced it is convinced the eyelid breakout is viral...???

Has anyone else here experienced this eyelid thing? And could it be connected to MCAS?

BTW Dr Vera has been treating my POTS with Atenolol, among other things...

 

[Who Me?]

@San Diego knows pots and histamine.

As for your eyelids, who knows. Everyone is different. I have psoriasis and it's an autoimmune response. so maybe it's some other skin crud. (That's the medical term lol)

If you want anyone to get an alert you need to put an @ sign in front of their ID. You know you did it right if it's underlined when you post @Hezza

 

[Issie]

Issue,

I have pondered this as a possibility for me & my family (lotsa members manifesting ME/CFS, POTS, FM, IC etc in varying combinations). I've never had a typical severe allergic reaction to anything.

However in the past year I've been blessed enough to get in to see Dr Vera at INIM. Among other slight things showing up my histamine levels were high normal.

She diagnosed a bad case of POTS & began treating that. But this year have experienced, after sipping margaritas for an afternoon, severe BP drops about 12 hrs later (like 65/41). At first we didn't make the connection until it happened 3 more times.

Hadn't "caught" anything in years. Those same years had been severely disabled w MECFS (housebound to bed bound). Dr Vera began slowly treating my immune system: LDN & Vit D 3, then Inosine, then Reishi. I have experienced tremendous improvement in pain levels.

But about 6 weeks ago "caught" a cold. My NP suggested an increase in Vit D3 (CDC protocol for colds & flus) It did indeed cut my cold in half but my pain skyrocketed, sleep went wonky & my eyelids exploded with what looked like severe psoriasis. (Have had patches off & on for years)

Right now I've just come from the dermatologist & she declares this is an allergic reaction. My sister has had the same thing on her eyelids before & ive seen it on my first cousins at times.

Have you ever experienced this as part of MCAS? Or does this sound familiar to anyone?

Sorry, I'm not getting my messages or any updates, not sure why.......@Cort ????? I don't personally get the eyelid problem, but one of my nephews does. His dermatologist calls it blephritis. He also seems to have MCAS. My mom had blephritis too and MCAS. I'm thinking there could be a connection. But don't know for sure. He has to wash his eyes with mild soap and put a cream on them. It comes and goes with him. Poor kid, he got all the bad genetic things.

Issie

 

[Hezza]

@San Diego knows pots and histamine.

As for your eyelids, who knows. Everyone is different. I have psoriasis and it's an autoimmune response. so maybe it's some other skin crud. (That's the medical term lol)

If you want anyone to get an alert you need to put an @ sign in front of their ID. You know you did it right if it's underlined when you post @Hezza

Thanks again @Who Me? At first I assumed it was proriasis flaring in response to too much immune boosting but the dermatologist swears it is NOT psoriasis but an inflammatory response to an allergen...

 

[Hezza]

Sorry, I'm not getting my messages or any updates, not sure why.......@Cort ????? I don't personally get the eyelid problem, but one of my nephews does. His dermatologist calls it blephritis. He also seems to have MCAS. My mom had blephritis too and MCAS. I'm thinking there could be a connection. But don't know for sure. He has to wash his eyes with mild soap and put a cream on them. It comes and goes with him. Poor kid, he got all the bad genetic things.

Issie

Thanks @Issie & sorry for the "issue" with your name- gotta love autocorrect or not so much. My sister would have break outs at the corners of mouth at the same time as the lizard eyes. She started using an expensive lip balm that has an antiviral in it. Cleared her right up.

Dermatologist says whatever is on my eyelids is reflective of an allergy going on in the mouth- I never had the breakouts on my mouth but for past few days have been applying this lip balm to my eyelids, yes, that's right, lip balm on the eyelids & they are 50% better already. Idk, this illness is so crazy!!

I have a phone consult in June w Dr Vera. I will ask her about the MCAS esp in light of this most informative thread, thanks to all of you!!

 

[Who Me?]

Got my Ketotifen today. Planning on 1 mg 3x/day but I heard it's pretty sedating.

Any suggestions before I start this tonight?

 

[Remy]

Got my Ketotifen today. Planning on 1 mg 3x/day but I heard it's pretty sedating.

Any suggestions before I start this tonight?

Take it 30-60 minutes before meals to help keep your gut calm.

 

[Who Me?]

Take it 30-60 minutes before meals to help keep your gut calm.

I'm going to start with one at bedtime tonight to see how sedating it is.

Does it screw with the gut? If it causes diahrea that's actually a plus for me.

 

[Remy]

I'm going to start with one at bedtime tonight to see how sedating it is.

Does it screw with the gut? If it causes diahrea that's actually a plus for me.

I haven't noticed any gut changes one way or another.