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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Fisetin, a flavonoid antioxidant, is a Mast Cell inhibitor

Thinktank

Senior Member
Messages
1,640
Location
Europe
I still has intestinal symptoms, so my doctor dropped the fexofenadine and added ranitidine (Zantac) and cromolyn sodium, which finally controlled the symptoms.

Did you notice an increase in symptoms when you started taking cromolyn sodium?
I've tried it but it made my GI symptoms and pain so much worse, such reaction is quite normal - worsening before stabilization but i couldn't handle it.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My symptoms actually improved. I'd been outputting little cannonball for a week after IVIG snd 400mg (in liquid oral form) 4x a day normalized things...:thumbsup:
 

jason30

Senior Member
Messages
513
Location
Europe
Hoi :)
No brain fog and better concentration? That's amazing, i've been living with cotton in my head ever since i became ill.
I will order some fisetin to try soon. Which brand are you using? I can only find one on iherb.com

I'm currently going through the medical mill and i will see a new doc. next week about mastocytosis and MCAS. In NL there's not much knowledge if any at all about MCAS. There are two expertise-centers for mastocytosis and that's it.

It is unfortunately for a short time though, after Fisetin it comes back rapidly :)

Do you remember when your brainfog started?
My brainfog started after taking r-ala, and then I discovered the heavy metals in my body which contributes to it.

I use this Fisetin: https://www.iherb.com/pr/Doctor-s-Best-Best-Fisetin-Featuring-Novusetin-100-mg-30-Veggie-Caps/43592

Indeed, there is limited knowledge in NL about MCAS. But also about MCS, mold illness and many more. Much to learn. :)
Hopefully the new doc will give you some new insights.
 

jason30

Senior Member
Messages
513
Location
Europe

Thinktank

Senior Member
Messages
1,640
Location
Europe
It is unfortunately for a short time though, after Fisetin it comes back rapidly :)

Do you remember when your brainfog started?
My brainfog started after taking r-ala, and then I discovered the heavy metals in my body which contributes to it.

I use this Fisetin: https://www.iherb.com/pr/Doctor-s-Best-Best-Fisetin-Featuring-Novusetin-100-mg-30-Veggie-Caps/43592

Indeed, there is limited knowledge in NL about MCAS. But also about MCS, mold illness and many more. Much to learn. :)
Hopefully the new doc will give you some new insights.

My brain fog started in uni 15 years ago, but i also had periods of milder brain fog in high school.
 

jason30

Senior Member
Messages
513
Location
Europe
I was diagnosed with MCAS in the US by a specialist. He measured tryptase and histamine, which have been normal, but repeated Chromagranin A and Prostaglandin D2 tests have been consistently high, verifying the MCAS.

My symptoms were pretty well controlled with optimal methylation, B5, and vitamin C, but IVIG flares it up, particularly in my intestines and I get swelling in my neck and brain.

My doctor prescribed ketotifen and fexofenadine to begin with. Boswellia is effective for the brain swelling, and I get curcumin IVs the day after IVIG to reduce the flare (I take 3g a day of Thorne Meriva curcumin already.)

I still has intestinal symptoms, so my doctor dropped the fexofenadine and added ranitidine (Zantac) and cromolyn sodium, which finally controlled the symptoms.

It's a lot to take, so I'm interested in reducing the meds to just what's the most effective. I'm concerned about the Zantac is not good for the microbiome and don't need an acid blocker so am wondering if there is an alternative that could block H2 without affecting the microbiome.

I've attached Dr. Afrin's list of MCAS meds.

Why do you use IVIG?

You often see that ketotefin, Benzodiazapenes and Marijuana is used in mast cell disorders.

I stopped taking Zantac because of 3 reasons:
  1. It inhibits phase 1 of the liver. Which is good for people with MCS. Good in terms of temporarily. Inhibit phase 1 for the long term is not adviced, because that will give other issues in the body (I remember something about a heavy load on the galbladder).
  2. Some states that zantac have some anticholinergic activity! Like: https://www.peoplespharmacy.com/2017/05/04/where-can-i-find-a-list-of-anticholinergic-drugs/
  3. I have read on healinghistamine.com about blocking h2, which Zantac does, makes it more worse in long term. I don't remember why, but this is my experience as well. Since I have stopped taking Zantac it goes better.
Alternatives which I use since I have stopped taking Zantac are: feverfew, quercetin, royal jelly and cromolyn and NEEM.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Why do you use IVIG?
For immunodeficiency and autoimmune POTS. See the attached case study.
You often see that ketotefin, Benzodiazapenes and Marijuana is used in mast cell disorders.
I'm on ketotifen and do take CBD oil for nausea and headaches. I wouldn't touch a benzodiazepine.

http://www.drcourtneycraig.com/blog/2014/11/29/medication-induced-mitochondrial-damage

I stopped taking Zantac because of 3 reasons:
  1. It inhibits phase 1 of the liver. Which is good for people with MCS. Good in terms of temporarily. Inhibit phase 1 for the long term is not adviced, because that will give other issues in the body (I remember something about a heavy load on the galbladder).
  2. Some states that zantac have some anticholinergic activity! Like: https://www.peoplespharmacy.com/2017/05/04/where-can-i-find-a-list-of-anticholinergic-drugs/
  3. I have read on healinghistamine.com about blocking h2, which Zantac does, makes it more worse in long term. I don't remember why, but this is my experience as well. Since I have stopped taking Zantac it goes better.
Alternatives which I use since I have stopped taking Zantac are: feverfew, quercetin, royal jelly and cromolyn and NEEM.
Zantac also impacts the pH of the microbiome. I'm not excited about taking it. My functional medicine doctor said I shoukdnt take it more thsn a few months. My ME/CFS specialist says I coild compensate with betaine. I'll look into your alternatives. Thanks!
 

Attachments

  • POTS MCAS IVIG LDN.pdf
    823 KB · Views: 18

jason30

Senior Member
Messages
513
Location
Europe
For immunodeficiency and autoimmune POTS. See the attached case study.

I'm on ketotifen and do take CBD oil for nausea and headaches. I wouldn't touch a benzodiazepine.

http://www.drcourtneycraig.com/blog/2014/11/29/medication-induced-mitochondrial-damage

Zantac also impacts the pH of the microbiome. I'm not excited about taking it. My functional medicine doctor said I shoukdnt take it more thsn a few months. My ME/CFS specialist says I coild compensate with betaine. I'll look into your alternatives. Thanks!

Thanks for the case study.

Interesting about compensating it with betaine.

How long does the effect of ketotifen last for you?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I was on ketotifen several years ago and it made me so sleepy I couldn't stand it. I was dreading being on it again, but this time, it hasn't made me sleepy at all.

I've been told if your gut is really leaky, that's when it'll make you sleepy. I've been working on my gut a lot since the first go around.
 

Sundancer

Senior Member
Messages
569
Location
Holland
Hoi :)
No brain fog and better concentration? That's amazing, i've been living with cotton in my head ever since i became ill.
I will order some fisetin to try soon. Which brand are you using? I can only find one on iherb.com

I'm currently going through the medical mill and i will see a new doc. next week about mastocytosis and MCAS. In NL there's not much knowledge if any at all about MCAS. There are two expertise-centers for mastocytosis and that's it.


today I've been looking at mastocystosis, found Groningen, could you tell me where is the other one? as groningen is very far away for me.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
today I've been looking at mastocystosis, found Groningen, could you tell me where is the other one? as groningen is very far away for me.

Groningen seems to be ok, but the waitlist is like a year or longer.

DON'T go to the mastocytose "expertise center" in erasmus Rotterdam, they know very little if nothing at all about MCAS! I had a very disaapointing experience there.
 

Sundancer

Senior Member
Messages
569
Location
Holland
Groningen seems to be ok, but the waitlist is like a year or longer.

DON'T go to the mastocytose "expertise center" in erasmus Rotterdam, they know very little if nothing at all about MCAS! I had a very disaapointing experience there.

thanks, I'll go talk about it with GP. I live close to Hilversum and in my state now I'm not able to go to either centre. But I recognize much in the descriptions, from early childhood on.
so if preliminaries point in that direction I could make an appointment and see whether next year I'm able to go there
recovery from trip to Hoofddorp took me about 6 weeks and it must not get worse. I was back to almost bedbound for a while.

But maybe antihistamines will be good to try.

we'll see, another thing to try
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Just FYI: but you probably already know that Theoharides has done a study showing quercetin and luteolin being separately superior to ketotifen.

Have you noticed any non-GI benefits to H2 blockers like famotidine? I just tried famotidine once recently and felt no benefit. (I don't have much, if any, GI problems from histamine but thought it could possibly help elsewhere.)

@Sherlock,
Thanks for the Theoharides info!

I am not diagnosed with MCAS yet (and first time in this forum) but famotidine was the second drug added to my profile. (The first was levocetirizine, which I had been taking but new protocol doubled the dose.)

The two drugs together made noticeable improvements: better breathing, less sinus congestion, peed out a lot of water (about 5 lbs), better energy, quicker step. I added prescription enzymes, gastric acid, and probiotics as my next 3 items, so my gut wouldn't go awry too badly. At this point I started to remember what it felt like to be me before I got sick.

I had a bit of a crash after 5 days - don't know if I ate some histamine foods (I'm intolerant), just overdid it (yeah, probably so!!!), or added something else to my protocol that caused it. It's the stuff I added after that, that I should revisit.

But the famotidine, I'm a believer.

-Crit