• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Mast Cell Issuers new page on PoTs UK

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi,

No, an antihistamine.

Antihistamines block either H1 or H2 receptors. You can get both types over the counter, I.e. cetirizine and ranitidine respectfully.

Ryan
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I found the link to POTS/ MC a couple years ago. I consider myself having 'POTS-lite'. In fact, I'm not having symptoms now. I take royal jelly daily, twice if I'm having MC symptoms. Also mangosteen when I have symptoms. And rutin (non-citrus origin) does me for histamine reactions.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
There is a route to take a lot of drugs, but there are many natural substances that will work.
  • Increasing methylation with 5-MTHF, MB12, and cofactors
  • Helping NAT2 with lots of B5
  • Vitamin C
  • Curcumin
  • Quercetin, rutin, luteolin
  • Boswellia
And then, there's Gleevec.
 
Last edited:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
That's what my naturopathic doctors think.

I'd had all kinds of allergy symptoms for years, was on fexofenadine, ketotifen, cromolyn, benadryl, asthma inhaler, etc.
Then started naturopathic treatment 8 years ago. I did LDA, but other than that, after avoiding my food allergens, my allergy symptoms were 95% gone on the nutrient protocol my ND had me on.

I was surprised recently after my ME/CFS doctor, who'd gone through my history, diagnosed me with MCAS. Histamine and tryptase have been normal for the past 3 years, but I had elevated prostaglandin D2 and Chromagranin A. My inflammation symptoms had flared after I started IVIG recently.

I told my ND the bad news, puzzled over my lack of symptoms. He said, "That's part of why we've had you on so robust a methylation protocol and vitamin C. You're taking curcumin and boswellia for the flare, and we also need to bump up your B5 to about 6g per day as your NAT2 pathway can go faster to get rid of the histamine, etc. than methylation can."

My ME/CFS doctor is dubious as I am about all the standard MCAS meds as most contain my allergens, corn and milk, and would be expensive to compound all of them.

He's recommending we look at Gleevec, in the future, which Dr. Afrin and he have been having good results with. It costs an arm and a leg, though. He also has patients on folate, B12, and Neuroprotek, which contains quercetin, rutin, and luteolin.

I'm not sure what the right answer is, but many of the natural things are mentioned in the attached.
 

Attachments

  • Afrin Drugs for MCAS.pdf
    891 KB · Views: 8