Hello,

My name is Todd.   I'm 48.  I live in Tennessee, and I have a mast cell disorder.   I am still officially undiagnosed.   But I am quite sure this is what I have.   I will give a brief history:   Upon reflection, I believe I have always had some type of subtle immunopathology.  Nevertheless, I was a physically active child, who ran with a very active crowd of peers.  Other than having more colds and flus than others, and less stamina, my history is unremarkable until age 19.   At that time, I came down with a very bad case of mononucleosis.  I never fully recovered, and went on to decend into Chronic Fatigue Syndrome.   About 15 years following this, I had my first symptom of what I now see as a mast cell disorder.  I ate a banana and had flushing a burning skin in my face afterward.  I was puzzled.   This reaction continued to expand to many other foods and chemicals, mold, etc..   Now my illness seems dominated by the mast cell disorder.   No one could ever understand my symptoms, although one doctor correctly tested me for carcinoid syndrome, for which I was negative.   Finally, a doctor suggested I take some niacin to see how I reacted.  I did, and my body just went nuts !   He correctly suggested this was a pathology involving histamine and mast cells, and prescribed anti-histamines, which of course, helped enormously.   I still had no suggestion of mastocytosis.   Later, I independently learned of this disorder while reading on the internet.   The symptoms fit me very well.    I need to get to a good masto doctor (Boston?), but this is problematic due to finances.   I will briefly mention some things that were key in my illness.  1) Two years before I originally became ill I had my wisdom teeth cut out (age 17).  I carried silent infection there, in the bones, for 18 years until I was very depleted.  I had "cavitation" surgery for this and made a nearly miraculous 24 hour turn about.  The transformation was astonishing, with my mast cell symptoms decreasing probably 50% overnight.   Later, our house had some mold remediation.  I was horrified to find my mattress infested with green and black mold.   It was really, really bad, sickening even.   We tossed the mattress, but my condition did not improve.  I saw Dr. Shoemaker in Pocomoke MD., but he was unable to help.   My condition regressed again in several years to where I currently am.   A second series of cavitation surgeries two years ago was not helpful this time.   So that's my story in a nut shell.    I continue to puzzle over my situation, its relation to viruses/retroviruses known and unknown, gene expression, environment, possible therapies, etc..  I am hopeful that medicine with come up with more effective therapies for these disorders, esp. with the growing field of regenerative medicine, but I must admit sometimes I get pretty worn out.   I want to thank Deborah for this forum.   I'm please to be a new member.   Thanks for listening,
Todd in Tenn.      

Todd, welcome to the forum! Your gonna love it here. Great information and support here. I live in Alabama just a few short miles fron the TN border. I was not able to find a mast cell doctor close by so I'm drive to South Carolina to see Dr Afrin this coming Monday. He is open to and receptive to email communications if you are interested. Glad you found this forum and glad to have you here.
Kim

Tod there is an outfit out there called Angel Flight.  It is a charitable organization of pilots that donate their time and plane, small plane to fly ill patients like us to doctor appointments and for other medical reasons and like I it is a charitable thing and does not cost.  They have helped me 5 or 6 times.  Although my destination is not as far as you have to travel you may be able to get help through them to get to Boston.  
I know some have flown to FLA from Mass.

They are throughout the country and how they would work to get you from TN to Boston I am not sure but I have known people that have flown them for longer flights than I take.  I use the northeast section for my flights so I have the northeast section's phone number.  If you need it or for that matter if anyone feels they would like to check it out, send me a PM and hopefully they will be able to help.

To get around Boston is somewhat easy.  You should be able to get a room for under $100 a night...I think last time I stayed just for a night it was about $80.

Welcome!  Sounds like you do a fair amount of reading.  I hope this helps answer your last question:
Most cases of MCAD and Mastocytosis are not life threatening.  Immune Ablation is.  There are some experimental treatments but these are reserved for those who have the Leukemia version of Mastocytosis.  Several genes may be responsible for mast cell disorders but there is no gene treatments authorized for these as of yet.  
Since mast cells are an important part of the immune system and protect the body.  More over, a stem cell factor is hematopoietic growth factor and the ligand of the cell surface c-kit protein. It is expressed during embryogenesis and is a growth factor for a number of cell types including the MAST CELLS. So I suspect, while you may have an initial decline due to the immune ablation,  as the stem cells start morphing, you may end up where you started but with much more risk.  There is so much that is still unknown.  Due to the fact that no one has been found that was born with no mast cells, it is evident that they are required.  As they are primary in embryogenesis, I would guess that a genetic defect would just proliferate.
Right now there are a lot of observations, studies, and conjecture but I suspect that within the next 10 to 20 years  there will be cures for defective genes that are quite simple.

joan:
i was wondering about the different colors of zantac, mine had always been the red ones now get the organish ones, so far  i can't tell a difference. & daow we may not have to wait for gene cures right now xolair seems to be helping those with MCAD & a french drug mastinib supposedly has passed wordwide phase 3 testing, like DR V was doing at MD Anderson, & is supposed to be approved & out late 1st quarter or early 2nd quarter next year. It used for people like me who have the ckit mutation & have SM especially with heavy cuteanous involvement to attack & kill those leaking bad mast cells. the problem is getting your insurance company to approve either treatment.
mikev

Sorry gang, but the doctors who were pioneers and knowledgeable in Mastocytosis at Vanderbilt are retired now and they left nobody behind who knew.   One of our members here went to Vanderbilt this year and came back totally empty handed - Kim.  She has since recently gone to South Carolina to see Dr. Afrin.  He is heading the investigation now and he is very knowledgeable in MCAD and SM.  

So, I recommend that you not waste time nor money with Vanderbilt, but consider going to an expert instead.


Lisa

Hello Todd, welcome to the most informative group ever! It sounds like you've so done your research and just continue to do so. We all here help each other with information, yet we all seem to be somewhat varied on the medications because our tolerances are so different. The great thing you've figured out is two meds you tolerate! Stick with those brands, generic or not it's what you tolerate. If you are content with your control of symptoms on your current regimine of medications stick with it! Then if symptoms begin to arise add an extra allegra to whack it back under control. I don't have doxepin experience, but if you are managing with your two stick with em. Then if you are feeling you need more, first possibly up your dose of what you tolerate consistently. Then look at adding one more at a time. I'm a fan of zantac for gastro issues along with allegra. Oh and if chemical triggers you to gastro anaphylaxis I'd really try zantac. I was shocked at how well it has helped. That's after a terrible reaction to my first zantac trial. Years later I tried it again but different brand and ahhhhhhh relief!  On a cure, well my bet is on Dr. Theohardies, and the new mast cell disorder clinic in Boston.  Dr Theo really has a passion for figuring this disease out, dear Lord he was so inspiring this last October, he really thinks within our lifetime there will be a cure! He's definitely got the passion to find it. When looking into meds just remember every manufacturer is different even when making the same drug, there are several generic manufacturers and you will find which manufacturer tends to make the best mix of inert ingredients for your system! I'm with Joan I hate the colors, especially reds! Uggghhh migrane city. So far I'm tolerating the "iron oxides" they use in place of the red dyes. I thought I'd react to a iodine based dye, but tolerate it so far. Why do they feel a pill needs a color? What a pointless waste! Do you tolerate benadryl? Make sure you have some dye free benadryl in your arsenal of rescue meds if you do tolerate it.

Thanks again for all the continued welcomes, suggestions, and well wishes.   I have only known about masto diseases for a few years and have been resistant to treating it because I wanted to "get well" and not have to be medicated for the rest of my life.  

Anyway, I think I'm going to begin to focus more and more on this aspect of my disease process.   I so clearly have this (or something like it), and my other efforts at solving my problems are going no where really, really, fast.

Todd in Tenn.