Hi, My name is Janice and I am a retired RN of 25 years. My story started when I presented w/flushing and itching in June. I tried OTC antihistamines but nothing worked. I then went into Walgreen's take care clinic. I was given a 5 day dose of 40mg Prednisone but my symptoms returned after TX was finished. I was given a stronger
prescription H1 med but it felt like my whole body was burning. I took the initiative to research and found out when H1's do not work, try H2. So I bought OTC famodidine 20mg and took once daily with 80% relief. At this time I was only taking a low dose beta blocker for hypertension that was started back in Jan of this year but I had gained 10 lbs and now my B/P was no longer low, it had spiked to-150/90. I saw my new primary doctor  July 1st and he increase my H2 to twice daily. I  had an appt with an allergist the following day.

I met w/my specialist and based on my symptoms, he thought I had a rare disorder and proceeded over the next month to run a battery of tests. The only ones that came back positive was the tryptase, 32 and a 24 hr urine test for D2 prostaglandin. Based on my results, he said I needed a bone marrow bx to confirm diagnosis.

I set an appt with a doctor at U of Chicago who had seen SM patient's but couldn't get one until mid Sept. I had a benign cyst removed from my finger using a Ester local in August. (I found out later that was contraindicated and should have been pre-medicated). After the minor surgery, the H2's stopped working and and I tried increasing them and even added a  PPI but to avail. I was getting diarrhea. So I stopped it, and my doctor told me to buy OTC Benadryl  50mg. I also took Tylenol 50mg along it 3-4x a day. I still needed more relief after 2 wks and didn't want to take to take more Benadryl or Tylenol, so I called my allergist to see if I could add Singular (luecotrine). He agreed to prescribe 10mg. It caused terrible chest pressure, brain fog, and stomach gas/bloating, but took my flushing away. I asked if I could go on a lower dose after 2 days and he started me on 5mg  chewable tab. My symptoms resolved.

I continued to research and found the low histamine chef who had mast cell disorder but after a year wasn't on any prescription medication. She was controlled totally by a combination low/high histamine foods and natural supplements. She mentioned Quercetin+ Vit C from Twin Labs. I ordered it and took 1 in the morning and 1 at night.
It helped a lot with flushing. I then found out that beta blockers are contraindicated with MCD so I asked my primary if I could switch to a calcium channel blocker? My B/P returned to normal after 1 wk after starting a low dose generic Norvasc and I lost the 10 lbs after 2 weeks.  I also tried eating low histamine foods and it helped. I realized that if I exercised, I notice I had no flushing for the rest of the day (next 5 hours) and I could reduce or eliminate my evening OTC benadryl.

I finally saw Dr. Godley and she ordered a bone marrow bx. It was scheduled for Oct 1 and I was pre-medicated with Prednisone 20mg 12/2 hrs prior to procedure. I am still waiting for one pending test result to receive my diagnosis but spoke with the my doctor and she says there are no mast cells seen? I have a follow-up on Nov 1st. After trial and error,  my regime now  is Benadryl 50mg/ Tylenol 500mg,  Quercetin 2 caps in AM. Benadryl 25mg/Tylenol  (5-7 pm). Less or none if I exercise. Singular at bedtime.
I walk 1-2 miles 4 days a wk, bicycle 5 miles twice a wk, and low weights/high reps 4x a week.