LymeNet Flash: Hyperadrenergic POTS in Mast Cell Activation

This is topic Hyperadrenergic POTS in Mast Cell Activation in forum Medical Questions at LymeNet Flash.

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Posted by canbravelyme (Member # 9785) on :

Anyone here with Hyper POTS MCA?

Thanks to TuTu I think I'm further narrowing in on my problem -- sounds like I have Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation https://www.youtube.com/watch?v=YQpAYCzGAC8

I'm on BB's and Florinef -- I'm on a tiny dose of BB and am thinking of skipping today's dose -- it seems to me that I was better when I was on Florinef alone. Is Florinef also counterindicated in Hyper MCA POTS? Thoughts?

Posted by Lymetoo (Member # 743) on :

Hmmm... I don't know. Try looking over this site:

www.tmsforacure.org

There's a good Mastocytosis FB page too.

Posted by canbravelyme (Member # 9785) on :

Thanks, Tu! Do u know the exact name of the FB page / group?

Posted by Razzle (Member # 30398) on :

Quercetin is a natural mast cell stabilizer...

Posted by Lymetoo (Member # 743) on :

canbrave...

Mastocytosis and Mast Cell Disorders-Integrative and Holistic Approach

Posted by canbravelyme (Member # 9785) on :

Thanks, Tu!

Posted by canbravelyme (Member # 9785) on :

Razzle -- I think I'd like to try Quercetin -- it's derived from stuff that makes me nuts -- I assume it's not going to trigger a histamine reaction?

Best,

Posted by Lymetoo (Member # 743) on :

Many with the mast cell issues use Quercetin and most of them have problems with histamine.

I haven't tried it because most formulas contain Vit C which I can't tolerate.

Posted by Razzle (Member # 30398) on :

Thorne makes one that's plain quercetin, nothing else...

http://www.thorne.com/Products/Antioxidants-Flavonoids/Flavonoids/prd~SB330.jsp

Posted by canbravelyme (Member # 9785) on :

Thanks, guys!

The bottle says to take 1 capsule 2x day with food. Any more specific instructions, Razzle? (take 10 min before; away from XYZ meds, etc.)

I also found a brand that contains only Quercetin (plus the capsule casing): http://www.omegaalpha.ca/en/product/139/Quercetin/

Best,

Posted by Lymetoo (Member # 743) on :

Thanks you two! I wonder if my tummy will like those?? The age-old question.

canbrave.. Did you find a price on that one?

Posted by canbravelyme (Member # 9785) on :

$22 CND -- not sure how readily it's available in the US?

Had a MUCH better day today -- low histamine diet helped...fingers crossed, I'm onto something [Smile]

Posted by Lymetoo (Member # 743) on :

Yea!! Good job!! (and thanks for the info!)

If you do the diet for about a month, you may be able to add more foods later.

Posted by canbravelyme (Member # 9785) on :

Had my phone appt. and was told I could take a second dose of antihistamine -- well, it's been 1.5 hours since I took it, and guess who feels physically relieved??

I wonder how much of my misery has been due to histamine reaction?