MCAS diagnosis

[Malea]

the only way to be sure seems be a bone biopsie,
But what would this help?

GI biopsies can be tested, too.

 

[pamojja]

Prof T in his talks explains that you need high doses of quercetin for absorption, but at high doses it can affect the gut. He came up with his own formulas that allow better absorption at lower doses such as Neuroprotek

Dr. Theoharis Theoharides: Number one, I never give more than one gram a day, flavonoids of any combination for two reasons... You’re literally destroying your bioflora or the microbiota,

Source :https://www.drkarafitzgerald.com/2018/11/20/mast-cell-clinical-researcher-dr-theoharides/

Just commented that blog-post and really hope for a reference:

...Therefore, beside Orthomolecular medicine, also successfully used loads of botanicals, also Ayurvedics. In average I consumed about 1.9g of Flavonoids (Tannins, Proathocyanidins, EGCG, Punicalagin, Quercetin, Rutin and Hesperidin mainly), 1.5g other Phenolics (Cucurminoids, Silymarin, Resveratrol..) and 2.3 g other Pyto-chemicals (Saponins, Bromelain, Boswellic acids, Phytosterols..) – each and every day for the last 10 years. An ubiome test 2 years ago showed my microbiome more diverse than 93% of all Gut samples tested at that time (about 250 000), and an overlap of 94.6% with samples of individuals reporting no health issues at all. Therefore the statement: “Number one, I never give more than one gram a day, flavonoids of any combination… You’re literally destroying your bioflora or the microbiota,” really needs a reference!

 

[Hd-x]

GI biopsies can be tested, too.

Yes, you are right - this may confirm MCAS, it still didnt differentiate betwenn MCA vs. MCAS nor rule out other illnessses. There are ppl. on FB, YT somewhere doing GI Biopsies in Bonn (MCAS specialists), without that the GI biopsis clarified things. There are MCAS Diagnosis questionnaire papers around from Molderings, my MCAS Score topped out 33 points.
Molderings was the leader in German MCAS research, unfortunatly no longer working.

It seems there are no standardized MCAS criteria at last,
the illness has international ICD code D89.4, but MCAS has not been coded into German ICD catalog and is officially not accepted as illness, here. This makes it somewhat "fishy".

However, I got now Ketotifen, replaced Fenfexadin with Cetrizin (fine for my gut), Cyproheptadine I have as well. Quercetin + some other herbal stuff was ordered, just testing out if anything helps seems (imo) to be the simplest way.

Prof T in his talks explains that you need high doses of quercetin for absorption, but at high doses it can affect the gut. He came up with his own formulas that allow better absorption at lower doses such as Neuroprotek

I noted adverse gut effects @750mg Quercetin daily (splitted on 3x250 mg doses),
will try Neuroprotek next.

 

[pamojja]

Just commented that blog-post and really hope for a reference:

Dr. Fitzgerald's response, also to a second question first quoted below:

Thanks for the interesting interview. Though 2 things really had me startle:

1. Suffered seasonal rhinitis for 20 years (sneezing fits, running nose and eyes). 10 years ago I suffered a 80% stenosis at my abdominal aorta, and a 60% walking disability from that PAD. In lack of real options I started Linus Pauling’s recommendations (high dose ascorbic acid along with comprehensive supplementation of all nutrients and lifestyle changes) and thereby found that 1 teaspoon full of ascorbic acid in a glass of water stops a sneezing fit in approx. 10 minutes. As effective as any prescription anti-histamine and no side-effects at all (in someone tolerating such amounts; However, in total it took 6 years till the PAD-disability got revoked). How come someone so well informed doesn’t even mentions such an effective, cheap and harmless anti-histamine like ascorbic acid powder?

2. In my case beside PAD additionally suffered a whole year a chronic bronchitis (diagnosed as COPD I, asymptomatic since) and T2D. Had my first and very severe anaphylatic shock from a bee sting 5 years ago. Therefore, beside Orthomolecular medicine, also successfully used loads of botanicals, ..

Thank you for those great points!

Vitamin C- it’s effective for some (like you), but not everyone (in my experience)— even going to bowel tolerance. It’s certainly worth trying in any allergy protocol.

I also prescribe higher doses of flavonoids than Dr. Theo recommends, and I don’t believe I’ve seen the GI fall-out he mentions in our conversation. That said, Dr. Theo is brilliant, and has been studying quercitin and other flavonoids for decades. I’ll see if I can get the background on his comment-

DrKF

 

[Hd-x]

I maked a short listing from drugs + herbs, what medication & alternative herbal stuff helps for what.
The intintion is a listing from stuff that is usually worldwide availible (the Afrin sheet lists lots off stuff that is not that easy availible or to get it ever prescribed)
Perhaps the community likes the idea, everyone welcome to enhance the list.



Non sedating H1 Blocker: Ceterizin, Aerius, Fexofenadin,
Ketotifen (sedating)

H1 Blocker helping @ Gut related syndroms:
Cyproheptadine

Non sedating H1 + PAF receptor blocker:
Rupatadin, (LD Alprazolam)

PAF receptor acting:
Rupatadin, (Alprazolam)

H2 blocker:
Ranitidin

Mastcellstabilisator:
Ketotifen, LowDose Amytriptiline
Herbs & alternative drugs: Quercitin, Chromolyn acid, Vitamin C

Boosts reducing Histamine:
Herbs & alternative drugs: Vitamin C

Leukotriene Antagonism (LRA):
Montekulast, Zileutin
Herbs & alternative drugs: Petasin, Curcumin (?), St John woods (?)

Anti IgE:
Xolair

Reduces Mastcell activity:
Curcumin, Ambroxol, Amitryptiline, Diazepam, Rohypnol, Alprazolam, (Klonopin),

 

[Hope4]

@Hd-x Thank you very much for the list. It gives much to think about. I'm sorry you've had such hard things hit you that you've needed to compile that list.

I hope you feel much better really soon.

 

[Hd-x]

I hope you feel much better really soon.

Thank you, and yes I will keep fighting - we all are fighters.