Transcript Of Mast Cell Lecture With Dr Afrin

[Christy_D]

For those with MCAS or interested in looking into it, I found this interesting transcript of a lecture Dr Afrin held in June 2011. It is very lengthy but very interesting.

http://www.mastocyto...ut%20slides.pdf

Christy

[jpjd59]

Christy:

Thanks for posting this transcript!

Pam

[ophelialit]

Thanks so much for posting this--I, too, found it fascinating. It read like a transcript of my life...the strange symptoms, widespread inflammation, frustration for me as well as a bevy of confused docs. Here's to hoping the research continues and more answer become available!

[RichGotsPots]

the Prostaglandin D_{2 test mentioned is very interesting. I read that having high levels of} Prostaglandin D2 causes vasodialation... Any Mast person ever have this test?

[DoozlyGirl]

Rich,

My urine and blood samples were recently sent to Mayo for PGD2 testing by Dr Afrin. Dr Castells at Harvard/Brigham and Women's is also testing for PGF2, another prostaglandin metabolite. FYI: N-Methylhistamine (urine and blood) as well as Anti-Xa Unfractionated Heparin (blood) and tryptase (blood) are the other available mast cell mediator tests.

Lyn

[Christy_D]

Yes, my sons MCAS diagnosis was based on PGD2 being 2.5 times too high. He was taking aspirin to suppress the PGD2 but wasn't having any benefit and was having issues, ie worse chest pain. He also said he could feel his blood moving in his veins and felt his heart beating all over his body. So we stopped the aspirin (very high dose) last weekend.

Also, his heparin was 8 times too high. Higher than Dr Afrin had ever seen in any patient.

[LindaJoy]

Wow, great transcript. Thank you so much for posting it, Christy. I will be undergoing testing with Dr. Afrin soon, but in the meantime, this transcript gave me the idea to send my latest EGD / colonoscopy biopsies to Dr. Afrin for proper testing with the appropriate stains. I'm hoping they finally show what we've all suspected for years now, MCAD.

This man is amazing. I love how he believes his patients, doesn't give up on them, etc. I really, really want to go see him.

Thanks, again, Christy.

Lindajoy

[CharmedLinz]

Thanks for posting this christy.

Question...

For those that have had heparin tested....

Has your seratonin been tested???

I ask because I looked up the heparin test which will have to be a send out from my lab, and another available test is the the serotonin release assay along with the heparin unfrac as a panel. It has a link to information about heparin auto antibody.

So I wonder what the relation is as I've had a high serotonin level.

Also on the pgd2 is that really different than the pgf2?? My doc ordered the pgd2 couple years ago and the lab switched it to pgf2 which showed nothing??

Which lab runs the pgd2??

Thanks!!!

[ramakentesh]

Isnt Prostaglandin just a cytokine? How does that definitvely demonstrate mast cell disorder?

[LindaJoy]

It's my understanding, Ramakentesh, that when mast cells release their contents during reactions, prostaglandin is one of those things released in abundance, along with histamine, leukotrienes, histamine, etc.

I may be wrong, but that's been my understanding since I was diagnosed with a mast cell activation disorder and wondered why I needed to be on different medications at the same time, all addressing the various chemicals released by mast cells during a reaction. Most people think all we need blocked is histamine, but other chemicals that are released in abundance also cause symptoms, so they need to be blocked, as well.

Linda