LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu
LymeNet on Facebook

LymeNet on Twitter


The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Hyperadrenergic POTS in Mast Cell Activation

- UBBFriend: Email this page to someone!    
Author Topic: Hyperadrenergic POTS in Mast Cell Activation
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
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?

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.
Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hmmm... I don't know. Try looking over this site:

www.tmsforacure.org

There's a good Mastocytosis FB page too.

--------------------
--Lymetutu--
Opinions, not medical advice!
Posts: 96223 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks, Tu! Do u know the exact name of the FB page / group?

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.
Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Razzle
Frequent Contributor (1K+ posts)
Member # 30398

Icon 1 posted      Profile for Razzle     Send New Private Message       Edit/Delete Post   Reply With Quote 
Quercetin is a natural mast cell stabilizer...

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.
Posts: 4166 | From WA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
canbrave...

Mastocytosis and Mast Cell Disorders-Integrative and Holistic Approach

--------------------
--Lymetutu--
Opinions, not medical advice!
Posts: 96223 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks, Tu!

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.
Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
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,

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.
Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

--------------------
--Lymetutu--
Opinions, not medical advice!
Posts: 96223 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Razzle
Frequent Contributor (1K+ posts)
Member # 30398

Icon 1 posted      Profile for Razzle     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thorne makes one that's plain quercetin, nothing else...

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

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.
Posts: 4166 | From WA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
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,

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.
Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks you two! I wonder if my tummy will like those?? The age-old question.

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

--------------------
--Lymetutu--
Opinions, not medical advice!
Posts: 96223 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
$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]

[group hug]

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.
Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

--------------------
--Lymetutu--
Opinions, not medical advice!
Posts: 96223 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785

Icon 1 posted      Profile for canbravelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
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?

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.
Posts: 1494 | From Getting there... | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
- Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3

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, NJ 08534 USA

| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.