Systemic Mast Cell Disease:

[ahmo]

Here's the vid presentation that woke me up. Dr Theoharides is a pharmacologist, mast cell researcher, and I'd say, an extremely nice guy. Understanding that I have a mast cell issue, even though my cluster of symptoms are relatively minor, has not only given me another clue to my adrenal health, but I've been able to manage them using royal jelly, mangosteen, rutin. They also flare when I'm in oxidative stress, which I now manage per Martin Pall's recommendations re NO-ONOO- (links in my sig)

Mastocytosis with Theoharis C. Theoharides, MS, PhD, MD, FAA‬http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ
http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ

Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

Neuroprotek http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c
http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c
this Neuroprotek vid could be classified as an advert. I was reluctant to try it. However, Dr. Theoharides' qualifications as pharmacologist + mast cell expert convinced me. I've been using them now for about a year. I don't always need them, but when I'm having a flare, or when my mental chatter is over-the-top, I take one. It stops the mental chatter within 15 minutes.
http://www.youtube.com/watch?feature=player_detailpage&v=pNQsK9PQL3c

 

[GracieJ]

This is all so new to me. I feel like Alice in Wonderland, right down the rabbit hole but in a good way for once.

I am cautious starting quercetin, having started other therapies for other things and immediately meeting up with bad reactions. I also usually read and read and read before trialing - but this one clicked in two seconds because of severity of symptoms. This one was so right. What a blessing.

Soaking it all up is more referring to the flood of new information I need to cover and digest. Just want to know right now and feel better.

My forum reading will be focused on the mast cell section. I started with the list of threads from the earliest date, so no surprises if I wake up other old threads or ask questions that are already covered. One piece at a time to see what has already been discussed.

Is @camas no longer active? She posted a lot of good things, but seems to be off the forums now.

I found a link for the chapter on management that is referenced earlier, possibly the same as the primer??

Ahh.... no luck getting the link to copy in.

 

[Sherlock]

Here's a review (2010) showing a list of receptors:
http://www.biotrend-usa.com/archive/file/content/biotrend-reviews/BTReview_Jan2010_Mastcell.pdf

There are other lists that vary somewhat. It's really not necessary to study the list. Suffice it to say that there are a lot of substances that trigger MCs, and some that inhibit MCs. The numbers and types of receptors can vary from person to person, from one spot to another in the same person, and can change over time.

I just noticed that Adenosine has opposite effect depending on concentration:

 

[GracieJ]

@Sherlock

I have not had trouble swallowing food, thank goodness.

Upon awakening the past several weeks, I have trouble swallowing, like something is stuck in my throat. It is mostly annoying and disconcerting, and may have other causes. Not sure, but had started reading up on dysphagia, it was such a strange symptom. The first forum reading I did here referenced EoE, white blood cells, etc. Still tracking this one down, but watching to see if querceetin helps.

 

[Sherlock]

when my mental chatter is over-the-top, I take one [Neuroprotek]. It stops the mental chatter within 15 minutes.

Interesting that it's so powerful and so fast for you. Yep, histamine is also a neurotransmitter. I find tart cheery (which is a flavonoid, as is quercetin) to be anti-anxiety to some extent for me. It also creates a sort of ceiling.

Theo's #1 flavonoid is luteolin, which he used to get from olive pits. The Greek connection. I've never tried luteolin myself. Is his high priced formulation better? I dunno, but I buy whatever flavonoid is on sale and am happy with it.

 

[justy]

This is all so new to me. Unfortunately I am reacting to nearly everything I take. Drugs, supplements, some foods, chemicals, inhaled substances. This makes it really hard to trial new things to stop the reactions.

@Sherlock have you come across this before with mast cell issues - the Zantac, at only low dose is making me more itchy, and at one point I felt like maybe the cetirizine was as well. I am waiting for tests back to see if I am having issues with titanium dioxide, which is literally in all drugs. I have read up on some mast cell blogs that people have issues even with antihistamines and have to keep certain ones for emergency only. I am so scared of getting worse as I seem to be reacting to more and more things.

Interestingly though, although the Zantac makes me itch my breathing problems are much better the last few days and hardly needed to think about my breathing at all - this has been a massive problem for the past 6 months and my lung consultant basically told me to go away because it was all in my head, and whilst asthma meds where helping they didn't work as they should have - I now know this response to meds not working as they should is a red flag for mast cell issues.

No idea how to go about treating my chronic infections with this problem, whether it can be bought under control or even cured and whether it is secondary to Lyme and co infections - im sure this is what my LLMD will think, but no idea how he will try and treat me.

So glad to see others on here having help from mast cell treatments...

 

[Sherlock]

@Sherlock have you come across this before with mast cell issues - the Zantac, at only low dose is making me more itchy, and at one point I felt like maybe the cetirizine was as well.

Sorry, I don't know... I never have GI intolerance problems, and can even consume high histamine foods at will.

Interestingly though, although the Zantac makes me itch my breathing problems are much better the last few days and hardly needed to think about my breathing at all - this has been a massive problem for the past 6 months

Maybe you can get or make something like this:
Quercetin inhalation inhibits the asthmatic responses by exposure to aerosolized-ovalbumin in conscious guinea-pigs.
http://www.ncbi.nlm.nih.gov/pubmed/18563360

The two pharmaceutical drugs in the U.S. that I'm only casually aware of are ketotifen (which also happens to be available in OTC eye drops at Walgreen et al) and cromolyn (which is preferred above all else for EoE since it also inhibits eos).

But lookee here:
http://www.mayoclinic.org/drugs-supplements/cromolyn-inhalation-route/description/drg-20067594
Cromolyn (Inhalation Route)

 

[CantThink]

Are there any references for this? To my knowledge, even higher doses are antihistaminergic.

I thought so too. I read it in the paper below, and I'm following that protocol, so for now I am sticking with 750mg or less. I don't know how they figured that maximum dose out, as they provide no supplementary evidence that I can see.

Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options

• Gerhard J Molderings,
• Stefan Brettner,
• Jürgen Homann,
• Lawrence B Afrin

http://link.springer.com/article/10.1186/1756-8722-4-10?LI=true

 

[CantThink]

Yes, I think this is a misunderstanding. The only quote I could find was this :



http://www.jhoonline.org/content/4/1/10

All this means is that the author recommends no more than 750mg per day, not that it increases mast cell activation.

I read the higher doses degranulation thing somewhere else. I'll try to find it, but I'm feeling very unwell at the moment and can't find where I read it.

 

[CantThink]

I was tking 500mg of vit c every three hours as I thought that would help. I have since dropped it donw to only one measly 750mg once a day... as I heard what cant think said above. Is a shame as Vit C helps me with other issues...

Don't listen to me. I probably have it all wrong Justy.

 

[adreno]

I thought so too. I read it in the paper below, and I'm following that protocol, so for now I am sticking with 750mg or less. I don't know how they figured that maximum dose out, as they provide no supplementary evidence that I can see.

Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options

• Gerhard J Molderings,
• Stefan Brettner,
• Jürgen Homann,
• Lawrence B Afrin

http://link.springer.com/article/10.1186/1756-8722-4-10?LI=true

This is the same paper I quoted. There was no other mention of vitamin C in the paper. The authors don't say anywhere that higher doses have opposite effects. There could be many reasons why the authors chose 750mg maximum limit for vitamin C.

 

[CantThink]

This is the same paper I quoted. There was no other mention of vitamin C in the paper. The authors don't say anywhere that higher doses have opposite effects. There could be many reasons why the authors chose 750mg maximum limit for vitamin C.

Okay. I said above that I read it elsewhere,but I can't find it anyway. Sorry. I'm leaving the thread now. I'll go back and delete my posts.

 

[Sherlock]

I'll go back and delete my posts.

That's not necessary. It's possibly beneficial to know that a recommendation has been made.

 

[adreno]

Okay. I said above that I read it elsewhere,but I can't find it anyway. Sorry. I'm leaving the thread now. I'll go back and delete my posts.

You don't have to do that. I'm just trying to get to the bottom of it.

I saw someone posted this on a MCD forum:

Okay I have been doing research on Vit C. I have found interesting info. It seems like too much of it can degranulate mast cells...I do horrible with citrus fruits, mybe for this reason.

• Slow-release Vitamin C (increased degradation of histamine; inhibition of mast cell
degranulation; not more than 750 mg/day)

Molderings et al. Journal of Hematology & Oncology 2011, 4:10
http://www.jhoonline.org/content/4/1/10

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1354561331/8

I think he misread the paper, and the myth just got perpetuated...

 

[eafw]

I am going to ask my GP for a different H2 blocker and if this doesn't work am going to ask for Mast cell stabiliser.

Hope you get something that works. I'm going to read up on it a bit more as have most of the symptoms, but not too badly (touch wood), so will proceed carefully.

 

[ahmo]

Theo's #1 flavonoid is luteolin, which he used to get from olive pits. The Greek connection. I've never tried luteolin myself. Is his high priced formulation better?

I don't know of any other luteolin formulation. I remember @sregan was trying something, I think a Swanson's product. The reason I decided to try this was his expertise as a pharmacologist in getting things to where we want them.

Re Vit C: My limited knowledge is that Vit C + Calcium help mobilize histamines out of the body. I've gotten + results in this respect. OTOH, citrus is on the avoid list for histamine foods. My body rejects rutin from citrus sources, loves the NOW rutin, from non-citrus, Saphora Japonica flowers.

 

[ahmo]

Also, Theoharides and his group have many papers available to read on his website, mastcellmaster.cim.

 

[justy]

Okay. I said above that I read it elsewhere,but I can't find it anyway. Sorry. I'm leaving the thread now. I'll go back and delete my posts.

please don't do that! I didn't mean that I heard the advice from you. I had also read it somewhere else before and then saw you saying it too and it reminded me... I had also read a man who was taking 1,000mg every three hours and felt good on this. My itching is so bad I will try anything, so ive been trying less vit c. To be honest nothing I do seems to make any difference!!

Glad to have your input in this thread, please don't leave...

 

[justy]

I don't know of any other luteolin formulation. I remember @sregan was trying something, I think a Swanson's product. The reason I decided to try this was his expertise as a pharmacologist in getting things to where we want them.

Re Vit C: My limited knowledge is that Vit C + Calcium help mobilize histamines out of the body. I've gotten + results in this respect. OTOH, citrus is on the avoid list for histamine foods. My body rejects rutin from citrus sources, loves the NOW rutin, from non-citrus, Saphora Japonica flowers.

Whn ei asked KDM by email what to do about the itching he told me to take 500mg calcium three times a day with food. TBH I think it made it worse, and some people describe calcium as liberating too much Histamine - again this is hearsay and I cant remember where I read it. Should probably just stick to what the experts say...or maybe will try vit c with calcium again. UGHHH - SO confusing!

 

[adreno]

My itching is so bad I will try anything, so ive been trying less vit c. To be honest nothing I do seems to make any difference!!

You might be interested to know that Tregs suppress the immune response associated with allergies:

Probably the single most important reason we develop IgE related allergies is because of a we aren’t creating Treg cells of the gut, but instead Th2 or Th17 cells. (R)

It does this in 3 ways: by changing the type of dendritic cells that reside in our gut, by blocking Th2/mast cells/other immune cells and actually changing the tissue structure of our gut. (R)

You can read more about that here.

Lately I have been trying rather high doses of astragalus, which supposedly decreases Tregs and enhances the immune response, and my histamine/allergic symptoms are really acting up, so perhaps there is something to it. I think I might have to go the other way, and try to increase Tregs.