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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Suggestions for avoiding external triggers

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi there,

Sorry it took me so long to get back to this. Lifestyles of a pwcs, ya know .... Rest, cook, eat, sleep, repeat ..

I went with zyrtec because I read it was better for swelling. I have anaphylaxis and angioedema which is
causing pelvic and bladder pain too. It's helping too as long as I take 25 - 30 mg spread out throughout
the day. I do best taking only 5 mg at a time for some reason. I suspect that's all my body can process
at one time.

I tried brand name zyrtec but it made me sleepy whereas Wal-zyr (Walgreens zyrtec tablets) doesn't. Wal-zyr has corn starch in it and I get a boost from cornstarch.

I have some teeth problems that I need to take care of too. I wonder if dental problems are related to cfs.
I had all my mercury removed between 1990 - 1992, but I have a root canal that probably needs to go.

I've been working on finding pans, laundry soap, etc. I bought a Cuisinart anodized aluminum pan that I have to
take back. I can taste the aluminum. Bleh .. I started tasting aluminum from cans over 10 years ago.

Tc .. X
 

soulfeast

Senior Member
Messages
420
Location
Virginia, US
its taking me a while to respond as well. such a puzzle here. Funny how some of us are fitting this profile. I have been flushing, throat tightening and experiencing that borderline anaphylaxis feelings. Started with light sensitivity, feeling top of my head was buzzing, sinuses inflamming, ears inflamming (?) internally.. then the flushing etc.. creepy feelings under skin.. slight breathlessness. I was off supplements for 3-4 weeks depending on which ones for mito and other tests. Added back in and this happens, not that I didnt prime myself by ingesting a lot of high histamine and histamine triggering foods a day before and day of mast cell tests.

I should now probably experiment with twice a day dosing and start back on d-hist, quercetin or neuroprotek. Probably need to keep an eye on reactions to b6 and methylfolate since I am understanding both can trigger (and oddly help control.. strange... b6 can trigger histamine release but it helps with production of DAO enzyme and folic acid can trigger (best I understand?) and though methylation help control.

Take away these mast cell like symptoms and if I wear compression hose, I am doing so much better. Already experiencing a consistant positive shift after dealing with the dental infections. Just hoping the one root canal does not turn into an issue.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi soulfeast,

Good to hear you're doing better. I'm busy experimenting with various meds and supplements too.
The zyrtec helps me but I wasn't satisfied not knowing what other meds might help. I'm trialing different
cox inhibitors, nsaids, because of prostaglandins role in mast cells.

I think I may have found a solution for my dirty a/c ducts. Method bathroom cleaner appears to be keeping
the pathogens under control. I'm spraying it directly on the fiberglass. I was using bleach successfully but
am trying to avoid those chemicals.

I bought some more
plants too to help clean the air. NASA has an interesting study on which ones do the best job. Just
google nasa plants to find it. I really enjoy plants so that's a bonus for me.

I have a hepa air cleaner but couldn't find any charcoal filters to fit it. I haven't tried looking online yet tho.

Fwiw, I'm allergic to vinegar now but I wasn't always. I used to clean with it but I had to stop.

Tc .. X