Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
My LLMD is wanting me to get tested for MCAS, but I'm doubtful I have it.
I read Dr Afrin's book in which he tells the stories of patients he's had and I don't think I have anything as severe as them.
But the biggest thing to me is that antihistamines are supposed relieve symptoms but they cause problems for me.
Antihistamines leave me wired and anxious. I've known this for years and if I'd known that they were going to use benadryl for my last colonoscopy I would have told them not to. I found out later.
I know I have high histamine from testing and genetic reports so try to eat low histamine. I don't get anaphylactic shock but do experience foods that irritate my mouth/throat and make esophagus ache.
I'm also gluten sensitive so am gluten free and some foods and NSAIDs give me fluid under eyes.
Does anyone know if my reaction to antihistamines would rule out that I have MCAS?
Posts: 1297 | From USA | Registered: Dec 2002
| IP: Logged |
posted
Others with mast cell react to antihistamines also so this doesn't rule out the condition.
It also can take 3 weeks of daily antihistamine use for them to make a difference/take down symptoms when you start taking them. Its not an immediate improvement.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
| IP: Logged |
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I wouldnt make it to 3 weeks because I would be so wired.
I'm wondering if rather than do the test which my insurance covers but would cost them $3000, if cromolyn could be tried? Or something else.
Maybe that's expensive too though. This MCAS is even harder to understand than Lyme and cow's!
It just seems odd to me that if I'm high in histamine and i am--that antihistamines do that to me!
Posts: 1297 | From USA | Registered: Dec 2002
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Lymetoo knows a lot about MCAS. Maybe pm her.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic