I was diagnosed with Urticaria Pigmentosa this summer from a skin biopsy.  When I was tested, I had a Tryptase of 22 with CD117 stained cells, and a slightly increased M:E Ratio, but my bone marrow did not have the abnormal clusters or spindle shaped mast cells.  Stains for CD2 and CD25 were only seen on some T-Cells and NK cells, but I did not have many mast cells present in that sample.  The local hematologist did over $15,000 worth of blood testing, pathology, and cytogenetics, and came to the conclusion I did not have systematic mastocytosis yet.  I was also having no allergy symptoms at that time.  

Since that time, the dots all over me have just multiplied.  This is the first Fall that I have ever had sinus drainage that has continued for over 6 weeks with no end in sight.  

I believe something environmental triggered an allergy response, which created an upper respiratory infection because of constant drainage.  It took me 1 week to fight that, which was replaced with a lower respiratory infection, in which I took an antibiotic.  That was then replaced by another upper respiratory infection, which I took an antibiotic and used a Neti Pot for.  That was replaced by a sore throat and ear pain from a blocked Eustachian tube that was very painful.  Finally they ran a culture and did a chest x-ray which both came back normal.  My PCP did not want to do a Tryptase test because he said he would not know how to read it.  I have the reactions, but not the source of the problem.  The only thing that helps me, is taking large amounts of OTC allergy pills, RX Xyzal, allergy nasal spray, and liquid Benadryl at the same time, but it only acts as a temporary fix, because it consistently comes back.  And when I wake up the next day, I feel even worse if that is possible.  But I have to admit, that feeling better for a short time is better than the constant misery.

I was wondering if anyone else has had the same scenario and if they found anything that can help it?  I cannot imagine living like this much longer.  I have always had sensitive allergies, but this is truly disrupting my life.  I think I made the local pharmacies a nice profit these past 2 months.  If anyone has any helpful advice, or could send me the right way, I would appreciate it.  

Thank you so much for responding.

My problem is, I do not know exactly how many allergies I have, or how bad they are. I do not think I have any chemical reactions.  I take anti-inflammatories and pain killers for my spine pain, but they seem to only help, not hinder.  I am around the same triggers as before, and the same medicine, but for some reason I am losing the battle.    

As to my history, I have been in shock from Brazil nuts a few times in my life.  A wasp one time paralyzed my leg for a day. Mosquitoes and insects cause welts for weeks.  Sulfa based drugs almost kill me.  I believe the anesthesia  they used on me for surgery wrecked havoc.  I had serious pet allergies when I was a child, but they have seemed to calm down quite a bit.  

I once went to an allergist when I was about 12, and they did a scratch test for all the trees, mold, dust, and environmental factors around me.  When the Doctors checked back on me a few minutes later, they were in full panic mode because my entire back was swelled up with welts.  But I am not sure if that was from them actually scratching my skin, or if it was from the allergies themselves.  I was completed covered in welts.    I was given an epi-pen.

I had shots in college, and my allergies seemed to subside.  But I was in an accident 5 years ago, and it was after that, that I started getting the dots, which I just thought were moles because of aging.  Then after I had spine surgery and anesthesia  2 years ago, the spots went rampant.  That is when I decided to get the moles checked out, just to make sure they weren't skin cancer since they covered my entire body.  

I now carry an epi pen again, but as to how the mast cells are impacting my symptoms, I don't know.  My local doctors don't know either, and because it is out of their league, they don't even want to try to find out.  They have a list of every cell that was present in the testing samples, but not how to apply the knowledge.  Reminds me of the saying 'The more you know, the more you know nothing'.  I just wish they had some clue as to what the different cells mean.  I guess that is why they have research, but I wish they would create a poll listing everyone's symptoms and their cell structures, if known, and look for similarities instead of just filing the data away to be lost on a dusty shelf.  All that testing, and nothing that can answer how it is impacting my health, and how I can get better.

That is why I am hoping I might find someone who has been where I have been these past two months, who might have some idea how to solve this sinus dilemma. That is, if the mast cells are causing it.  

I am very happy, everyone is so involved in this website.  Maybe we can help each other and find some answers out there.  Gives me hope

Hi,

  I have a few thoughts.  First of all, I would contact the mast cell disorder specialists at Brigham and Womens in Boston and ask them to review the specimens and lab results you have.  All of your symptoms and the meds helping and the elevated tryptase might indicate a systemic mast cell disorder.  However, it will require someone knowledgeable to read and interpret the tests.

  It's not always easy to know the difference between allergies and a mast cell disorder.  You should not have skin tests again, unless it's been okayed by a mast cell specialist.  If you want to be tested for allergies, you can have blood drawn and do RAST testing.  That wouldn't rule in or out allergies or mast cells as 100% the cause of your problem, but it might help you figure out some things to avoid in your diet or environment.  About 20% of patients with mast cell disorders also have allergies, the same as the general population.

  Two things jumped out to me regarding your medical history, besides the UP spots.  One was the reaction to the wasp sting.  Those can lead to mast cell disorders, according to Dr. Castells.  

  The other is the sinus "dilemma."  You didn't mention a sinus scan or sinus culture, and I would think that would be in order to rule out mold or bacterial colonization in the sinuses.

  I believe you have enough test results and symptoms to warrant review by a mast cell disorder specialist.  As you've found out, other doctors don't feel comfortable with their knowledge about these rare conditions to treat you.  Time to move on.  You need a specialist to diagnose you and get you on a regimen of meds that keep your symptoms to a minimum.  You can find posts on this site that will tell you what meds other people take, but do run them by your doctor if you plan to increase what you're taking.  Most of us find that taking the same regimen daily and then adding more if we're flaring or know we'll be in contact with triggers or lots of stress, is the best way to manage our symptoms and to avoid big reactions.  Good that you carry an epipen.  You might also want to carry fast-acting antihistamines, such as Benadryl.

  The suggestion of trying a low histamine diet is a great one.  You can Google.  I like the one put out by ICUS.  It's a chart that's clear and easy to read.  You might also want to keep a food and symptom diary.  Sometimes a runny nose can be caused by eating certain foods or food groups, but it isn't a true allergy.  There is a nasal spray, ipratropium bromide (Atrovent), that is made for this problem.

  If you are unable to go to Boston, or if they won't review your test results and BMB, you might want to post your location and perhaps someone will give you the name of a specialist in your area.

Happy to hear you're considering going to Boston.  You can trust that what they tell you there will be accurate.

If you are putting liquid Benadryl on your skin, that might not be a good idea.  Some people can become allergic to it if it's applied on the skin.  Strange, but true.

If you're going to take an H1 antihistamine, take a full adult dose per the package, especially if you feel like your throat is closing.  You might want to try a long-acting H1 antihistamine, such as Zyrtec or Allegra.  They last longer and might help keep you from reacting.  Most of us also use an H2 antihistamine, such as Zantac or Pepcid.