Mast Cell Activation Disease - The Modern Epidemics of Chronic illness - Afrin

[Who Me?]

Have you tried Costco or Costco mail order? They have good prices on stuff.

I'm going to talk to my NP about it. In fact I have a new pcp who is running labs in July. Now would be a good time to try it because labs will show if it's killing my liver.

Think I might buy some. Just call me Guinea pig.

 

[Who Me?]

Just bought some Khella from purformulas. I'm getting labs done next month so I feel safe enough.

 

[Issie]

Yeah, I'm a lab rat too. Ha! I've tried soooo many things. Guess it won't hurt to try something else.
I did discover recently that I couldn't take rutin. What a horrible feeling. Maybe will just try to find luteolin by itself. Or just drink alot of Camamile tea.
Issie

 

[Who Me?]

@Issie Swanson's has luteolin by itself. I started Neuorprotek LP yesterday. If I don't feel hugely better I'll go back on quercetin which helped. @Veet likes mangosteen so I may try that. I was good with Rutin to start. Excess is not nearly enough!

 

[Issie]

Sometimes good to try one thing at a time. Hard to sort what is doing what. Our liver has to process all of it. Even if it is "natural". In concentrated form, it's a medicine. Not really all that "natural". Unless it's a complete herb.
I finally found a multi that works for MTHFR issues. It's by Thorne, Basic Nutrients 2/day. It will eliminate me having to buy everything seperate. 2nd day on it and all is good, so far. Yayyyyy!!! The doc I talked to adds more folate to his. He also has a MTHFR problem. I think since it does have a very small amount of copper - if I do have a kyrienine pathway problem - I may need to add a little more zinc. But maybe not. We will see.
Issie

 

[SueS]

I've been looking into the mast cell thing for the past year...

My reactions manifest themselves as agitations of my central nervous system - elevated muscle tone in head and neck, feelings of agitation, fatigue and poor sleep...

Like many people with CFS, I have low cardiac output - low blood pressure and slow pulse when resting and I suspect low blood volume as well.

There is such a thing as cardiac induced mast cell activation, although not a lot is known about it. I think the mast cell activation may be keeping my heart from slowing too much. That would explain why my tryptase levels are higher when I am very relaxed. I tried taking quercitin - a mast cell stabilizer.

The first time I took it I slept through the night and had a normal bowel movement the next day - two unusual occurrences for me. The second night it worked half as well, the third night not at all and then it began to agitate my system. I believe my system was threatened by the stabilization of my mast cells so it quickly built an intolerance to the quercitin. (I have experienced this phenomena with other therapies)

This is really interesting @DardenBurns. I've been taking khella for the past four days and felt really good for a few days. I noticed after tonight's dose though I'm getting headachey and itchy. Wondering if I need to back off this now.

Just wondering if it would be worth taking these every two or three days. Kind of to get the benefits but not enough to cause the allergic reaction.

I've got some quercetin/bromelain there. Perhaps it would be worth trying that. Maybe there won't be side effects with those.

It's so hard to know what to do.

 

[Issie]

The Khella didn't work for me. I had to go back on GastroCrom. It's still one of my best meds.
Issie

 

[voner]

Does anybody have any experience with using diamine oxidase (DAO)? I have been trialing it for a couple weeks without any positive results....

 

[Veet]

I started w/ quercetin. I think there's a sulfur component to it. My body prefers royal jelly and mangosteen as MC stabilizers. When I learned that there are possible MC and antoimmune components to POTS, I returned to taking these, and had a reduction in the heat flushes POTS, not menopausal) I'd been experiencing.

 

[Remy]

Does anybody have any experience with using diamine oxidase (DAO)? I have been trialing it for a couple weeks without any positive results....

How much are you taking?

I'm taking one in the AM and two prior to dinner and with all the other antihistamines, I do feel less bloated and crappy after eating.

But when I took it alone years ago and not part of a whole protocol, I didn't get much of anything from it. Maybe effects are cumulative?

 

[voner]

Thanks for the reply, Remy,

I am on a anti-histamine, mast cell protocol, which includes DAO AM, PM. I can't pinpoint any symptomomatic changes.

 

[Issie]

I too didn't find rutin or quercetin to be good long term. I do think there may be some sort of issue in the sulfur pathway. I haven't tried luteolin. I took quercetin for a long time by itself - but don't really think it was doing that much for me. I recently tried rutin again, with a bad reaction.

Integra Lean is a form of mango and helpful for moderating Leptin. I wonder if that's why the mangosteen is helping or is that in a different family than the mango family? I use Integra Lean a few times a week.

Issie