Peter, there's a difference between the mast cells which are genetically damaged by the defect for mastocytosis and those mast cells which are completely normal.  IgE release destroys mast cells - it doesn't "damage" them.  

This is what I'm saying.  When you have chronic IgE activation you are not damaging any MCs.  A normal, functioning, healthy MC ends up exploding to smithereens when it is triggered by IgE.   So, it can't go on to doing anything else - it's totally destroyed.  

In mastocytosis the MCs when they trigger by anything other than IgE only degranulate and then recompose the granules.  They aren't destroyed and since they are already damaged the triggering doesn't do any extra damage.  It's already damaged.  

Something I didn't know but one of my doctors told me is that when you have any kind of a disease like masto, one that works around neoplasms, there is always a higher risk to having other neoplastic diseases.  In mastocytosis there is a higher risk due to the presence of the defect.  

MCs like all other white blood cells come from a singular mother- progenitor cell (Jilly Bean is the one to really teach this because I still don't understand it all).  This progenitor cell has programed  within it the capacity to modify and change into the cell that it's meant to be.  Somewhere along the line is where the defect comes it so that by the time it forms into a MC, then it is born defective and remains so.  It doesn't die off as soon as it is supposed to and thus begins clumping together and then forming "tumors" which are not in that sense a "true tumor" for the cell itself doesn't divide and multiply, it only sticks together with like company.   So, it forms a pseudo-tumor and even though it's called a "neoplasm" it's not a true neoplasm.   And normal it's so very slow growing accumulation that it's not an aggressive situation in the least.

It's like a band of tumor "wanna-be's" in that these defective MCs have a magnet or are lined with velcro and they stick together in clumps and form sheets of these cells.  In forming these clumps they end up pushing out of the way the normal, healthy cells which should be in their place.  When this happens within the tissues, this is where it gets a "tumor-like" behavior for the body needs those normal cells to be present but the block party turns into a mad, caotic riot of MCs and this makes it so that the tissues and organs fail due to that damage.

Tryptase is usally reflective of this invasive damage and behavior - the proliferation and accumulation of these defective MCs.  According to the researchers the tryptase levels are pretty acurate in showing the MC burden within the bone marrow.  It would be chronically raised because you have a lot of MCs in the bone marrow.  The higher the number of MCs the higher the baseline trytpase.  

So, if your tryptase is lowering, then that means that the MC burden is lowering too.  Yes, defective MCs do eventually die off, but if it disappears I don't know.  According to the research it's a progressive kind of thing but extremely slowly progressive.   But I can stabilize.  Whether it reduces the literature doesn't state.  

However, one thing I've notice in the years I've been on this journey - although the authorities do indeed KNOW this disease, I have seen that they take these STANDS and then years down the line end up saying "oops, it's not quite the way we thought it was!"      This is what happend in 2010 with the MCAS diagnosis concensus by the WHO = they had to EAT CROW and admit that they were WRONG!!!    In the early 80s, Drs. Roberts and Oates wrote an impressive article on the biochemical diagnosis of mastocytosis.  In that article they clearly state their theory of a Proliferative form and an Activation Form!!!   it took 25 years for the present researchers to ADMIT THEY WERE WRONG!!!    

It will be interesting to see what stand they take in another 25 years!!!!!


I hope this helps!


lisa