Judy,

I have NEVER heard of anyone saying this before!!!  And it really makes no sense otherwise we´d all be told to be OFF of our antihistamines and they wouldn´t premedicate us on purpose to get us reacting during the BMB!   There are plenty of us who do react during the BMBs, I´m one, and they have to knock me out due to how reactive I get.  It put me into 2 hours of syncope afterwards and I kept reacting for about 3 weeks!  Did they find any MC aggregates?  NO!  

According to Dr. Luis Escribano, if your tryptase is low, which mine is at 4.6ng, the chances of finding the neoplams is also very low.  In order to do so, you would have to go through a very expensive and very special flow cytometry process which can be done at only 4 labs in the world.  This process does a very special enriching of the mast cells and only then are they able to see them to study them.  So, based upon your son´s tryptase levels, you will NOT find those mast cells!

Does that mean you should not do the bone marrow biopsy?  NO!   If your doctors are looking specifically for Systemic Mastocytosis, then no, you should not do the biopsy and only do it based upon the tryptase levels.  However, if you are talking about the other forms of masto, then, due to how reactive your son is, I´d say yes.  The reason why is because there is a great deal that can be learned by studying the bone marrow and it can reveal what is going on with your son.  

In my case, I was diagnosed as MCAS based upon my bone marrow as well as the other biopsies we´ve got.  We couldn´t rely upon my tryptase and we even cancelled another planned BMB because we were going to try the enriched flow cytometry to see if we could find those MCs but Dr. Escribano felt my tryptase being so low made it not worth the investment.   However, it was very worthwhile for the other pathological changes that were found are only found in mastocytosis and this indicator along with the slightly raised but normal tryptase as well as the elevated histamine levels ended up PROVING that yes, I do have a mast cell disorder.  Pinning down the exact form to my doctors is interesting only on an academic level for we know what we´re working with now and how to treat it and really, Judy, that´s all that really matters, isn´t it?

Judy, haven´t you been in contact with Dr. Escribano as well?  I think that this is a question you should pose to him, for I don´t think that person who told you is correct.  If he is, then I´m one who would appreciate an authority´s confirmation of it!  


I hope this helps!

Lisa

Ps - Joan is 100% correct!!  Don´t stop those antihistamines!  If your son is as sick as he is, you could put him into serious danger by not having been properly medicated prior to that exam.  You need the REMA protocols that we have here on the site and to have him properly pre-medicated prior to that and any procedure, Judy otherwise you put him into serious risk if he is indeed a masto patient!  

Judy, we all know how desperate we can get for answers and a diagnosis, but don´t put that as a priority over his safety.  What use will be a diagnosis if in the process of getting it he ends up either dying or having serious damage happen in the process?  I had a doctor pull me up short with this very argument and it made me realize some very important things.  He was 100% right!!!