He asked what the title was of m a book by Dr Afrin, and she suggested a bunch of other (free) mast cell info instead. Then this:
[edit I have not been here in so long, I forgot to code the links. I will do it now.]
Look at these burning mouth/mast cell papers.
Burning mouth syndrome: mast cell connection
Borelli V, Zabucchi G.
look for the pdf for that one. I don't have a link, sorry. It said,
"We read with interest the article by Lawrence B. Afrin, who proposes a role for mast cells (MCs) in burning mouth syndrome (BMS) pathogenesis. This author reported that “BMS has not previously been attributed to mast cell disease (MCD).” We would like to highlight that we were the first to propose a connection between MC activity and BMS....
This one titled:
Burning mouth syndrome and mast cell activation disorder.
Afrin LB. 2011.
I didn't even remember saving this other thing but there was this link in my notes, when I searched my Notes app for "burning mouth". It's a Q and A from (expert) Doctors Dempsey and Afrin. It does offer alternative causes, which might also be important. Scroll down to the paragraph that begins:
"Can you tell me if there is a link to a burning mouth feeling and MCAS?"
She also wrote later:
Another something along the same lines of burning mouth is nerve pain, like my allodynia. It can be caused by mast cells. Look at today's posts on my FB page. Not all of my posts are public, but as it happens today's are. (You can also friend me.) In one of those I have some mast cell/nerve information from a study. [They can even sort of share their membranes if I remember that post correctly.] I use a mast cell supplement that helps prevent/resolve my allodynia (skin pain) episodes. It might help your mouth...well it could help everything. But it won't cure it.Just help.
Weird (but when I think about it some more, not weird at all), hours later, he replied to her, [I think he is from India...or Pakistan?]
"Exactly same nerve pain I have and my Burning mouth and nerve pain go hand on hand,
I am investigate mast cell angle because this is most probable cause of my issue, I am going to be experimenting with different mast cell stabilizer like qurancetine, lutein, begin ketotifen experiment ...[he does not know how to spell them correctly yet].
Please tell me what supplement helps you in allodynia ??
part of her reply was more general info, supplement info, and this:
"I and many others think fibromyalgia is really a mast cell disorder. There is some study evidence of this."
It's not so surprising that it turned out that he also has nerve pain and muscle pain, and that he also was in a gut group.
I would say your symptoms are a good fit for over-activation of mast cells. She has a couple of friends on FB with EoE in adfition to being mast cell patients. Eosinophils are another kind of immune cell. I don't pay a lot of attention to them discussing EoE when she posts this or that about it, but I gather some people have trouble with both types of cells and the EoE can affect swallowing. Maybe it's the EoE people that I have seen write in mast cell groups that they have trouble with big pills. I'm pretty sure (but not positive) that they are the ones struggling most with the size of the esophagus the most often. Well obviously in anaphylaxis any swelling in the throat is a problem for masties. And people post on occasion that they have trouble with the throat at times when they are not in actual ana., but EoE might be an issue with them, too...maybe they just haven't gotten into a specialist to check into it.
Post Edited (wayup) : 3/9/2019 4:30:18 AM (GMT-7)