Hi and welcome! So glad that you found us, as you will get all sorts of good tips from this great community! A good place to start is by reading the category, "START HERE! Tips for identifying your triggers and learning how to get better." I have a bunch of tips at the top, "Deborah's tips," which will be helpful to you. (I am a shocker also!)

Enjoy the forum!

Thank you Deborah and Joan.

Joan, sure I'll share my tid-bits.  However, keep in mind I self diagnosed and only used the rheumatologist (for serum tryptase level) and then my hematologist/oncologist for BM aspiration.  Other than that I have pretty much managed my own care. My multiple so called "rare disorders" which include Achalasia, neuropathy and Kounis Syndrome have made me become much self reliant when it comes to my health.  Achalasia is another VERY rare disorder, which I also self-diagnosed (confirmed with manometry study and treated with 2 abdominal surgeries). In researching all this I became more and more interested in medicine and at age 39 went back to school to be an R.N., with luck, I will graduate next week! On a side note, I began "shocking" in 1990. Now to my "current regimen", it does change from time to time:

A.M. Meds:
omeprazole 20 mg
cetirazine 10 mg
ranitidine 150 mg
optimized D3 5,000 i.u.
activated quercitin 660 mg
luteolin 200 mg

P.M. Meds:
diphenhydramine 50 mg
omeprazole 20 mg
cetirazine 10 mg
ranitidine 150 mg
optimized D3 5,000 i.u.
activated quercitin 660 mg
luteolin 200 mg

In addition I take diphenhyrdramine PRN for symptoms.  Also gastrocrom 200 mg (4 times a day)


whew...not sure what I forgot?

I just remembered what I forgot (brain fog?):  My Doc is Dr. John Nelson in Valhalla, NY  He coordinates my care with Dr Teferi from Mayo Clinic in Minnesota.

Mike

Hi Mike,

Thanks for sharing.  You've really been through a lot (and still going through it).  I'm sure you're aware of mast cells/histamine/other mediators involved in your other disorders.  Looks like you have a working regimen of meds and a competent medical team (including yourself!).

A lot of us masto-people take 180 mg. fexofenadine (Allegra) as an H1 blocker.  Some alternate with Zyrtec, and some just take the Allegra.  That's just an FYI, as I don't know whether Allegra is allowed with your other conditions.  

So, fellow masto-people, here are a couple of more rare problems related to mast cells.  I can't help but wonder if some people who have similar symptoms might want to check these out.  There are things to avoid that seem to overlap with our list, at least for Kounis Syndrome.  

Mike, if you don't mind, will you tell us some more about what your symptoms were for the other disorders and also for what reason you take the luteolin?  

From what I read about Kounis, epinephrine might not be a safe way to handle those episodes.  I did see a safe protocol online, though.  How can you tell the difference between it and SM episodes?  I don't know if anyone else has coronary symptoms with their masto, but it might be worth looking into this, if so.  Do you have any special treatment for it?  Is it a frequent event?  Do you mind a thousand questions?

People on the forum sometimes report severe symptoms that aren't really resolved by the usual masto medications.  It's puzzling sometimes, but now I wonder how many other rare disorders there are that involve mast cells.

Some people are very concerned when their tryptase is over 11, but you seem to be functioning pretty well with a very high tryptase.  Has that number been confirmed?  I ask because mine is quite high, but yours seems to be out of the ballpark.  Do you know exactly what causes tryptase to elevate?

Well, I think I've asked all the questions I can muster for one night.  We're all trying to put our information together to help ourselves and others here.  It's a very bright and supportive group.  Thanks!

Hi Mike,

Welcome to our Forum!!  


You said you live in CT!  Mike, I have some cardiologists who could be of help to you.  They are in Boston and they do research on the involvement of mast cells within the cardiovascular system, so they would know plenty about Kounis Syndrome as well as your cardiovascular issues and they would be good options for you if you are needing a cardiologist.


Joan, as you know, we're all such a bag full of tricks that we send doctors into confusion for none of us is the same.   One of the things I recently found out is that not everybody goes through these horrendous reactions that are so severe.  This has ended up being very surprising to me for when I speak with other patients here and on other sites, they talk about their episodes and problems and I've had them to compare to.   What I'm learning is that we patients who go through such extreme reactions may be a relatively small group and this is why we tend to band togehter for our needs are higher due to all of the activity we go through.  We're on the extreme end of masto as far as our reactions are concerned.

However, as the doctors will say, our tryptase levels have NO CORRELATION as to what our reactions are!   You and Mike don't necessarily have worse reactions just because your tryptase is higher.  It just does not correlate at all!   I'm one of those whose tryptase is normal - 4.2ng/mL.  It went up .2 within 3 years!!   In fact, my tryptase is so low that we've had to cancel the bone marrow biopsy and study that Dr. Escribano was going to do because there are just too few mast cells to be found.  

But, you would think that with all of the severe reactions that I have, that my tryptase would be way high and it's just not.   The severity and the amount of our reactivity has absolutely NOTHING to do with the level of your typtase and it's one more way that mast breaks the rules for it would make logical sense for this to be so, but masto is king at breaking the rules of medicine and this is yet one more way it does so.   For some unknown reason, Joan, your reactions don't reflect your tryptase levels.  However, within each patient, perhaps there is a relationship as to their tryptase levels and their own amount of reactivity.  This is something I don't know about and which is a valid question, but it's when we compare patients that the tryptase level has nothing to do with reactivity.  

Lisa