Please let me start by apologizing for not returning to this site and updating on my husband Fabios progress but somehow I just couldn't...I have been in the depths of depression like I've never felt before and barely functioning. I have to say that I'm in a much better place and a huge part of that has been this site...through his most difficult periods I had a place to go as a reference, double check and try to understand things.
A huge thank you to all of you who share all this information and help people like my husband and myself!

Our journey has been full of strange twists, turns, some ups and a lot of downs. I couldn't even write because I was scared out of my mind, I have our businesses to run, a non functioning husband who plays a critical role in our restaurants, a 15 yr old freshman still at home and a dizzying number of doctor visits to constantly go to...please forgive me!

When we went to NIH I was told this is not a genetic disease, it's something you get...well maybe systemic mastocytosis isn't genetic but what we've got going on sure seems genetic to me...
My husband
Tryptase 25, IgE 10,000 range, ANA 1.2, hashimotos, BMB neg,
      Kit and Stat 3 gene not mutated, prostoglandins 89, histamine in urine 500 range
Daughter  21- tryptase 28, IgE 350- some GI prob, rashes, seasonal allergies and oral            allergy syndrome
Daughter 15, tryptase 19, IgE 1650, anaphylactic peanut allergy, ANA 1.
      Histamine is urine normal
Husbands father 77yrs  tryptase 55, IgE 150, hashimotos, colon cancer survivor
Husband sister tryptase 19, IgE 150, ANA 1. hashimotos, raynauds syndrome, anemic
Her son tryptase 19, IgE 150

NIH has been amazing to us and the only silver lining is that we have been able to go back and forth for further testing. Dr Wilson and his team are stellar and have been there for us 100%. He has been entered into Human Genome study to further sequence his DNA and see if something comes up...

In Italy they say "All roads lead to Rome" and with a Mast Cell Disorder all roads lead to Boston. After a lot of testing at NIH I needed to get a second opinion and they can't give me any dosing help with ketotifen. We had a couple boxes from Swiss but I was too scared to just take it and it has lactose so I didn't want to give him rx without a Dr knowing what he was taking. His outside NIH allergist couldn't help me with dosing either and told me not to take it. The Swiss Dr who originally diagnosed him told me to try it and he had quite good results... But he's in Europe and I still didn't realize that it was humanly possible to take so many antihistamines and feel better.

I emailed dr Castells, we had been emailing in the beginning and Fab was already registered at BW. She said to come up and with a little luck she had a cancellation and could see us in 3 days!

Two weeks prior to this my husband went into severe shock, collapsed at the gate from the drop in pressure when landing on a plane. The paramedics wouldn't epi pen him because they said he was too old (any one over 45) and it would give him a heart attack, hugh? I told them NIH gave me the epipens, they were so wrong and just injected benadryl. At the hospital once he got stabilized I asked the Dr to check his tryptase level and explained that he's in a protocol study at NIH for a mast cell disorder ect... He came back with a print out of benign fainting spells and told me my husband just fainted and he'd have a long healthy life. He didn't hear a thing I said, I just smiled and told them to finish the IV and to let me just take him home.
He spent the next two weeks in bed and was worse then ever...sleeping 20 hrs a day, pain, reacting, feeling just awful. When Dr Castells said she had an immediate appt  we took a 7 hr train ride to Boston. We had no expectations and just figured we'd talk, my husband even asked if he thought it would be worth it to go...
We stayed at the Liberty an old prison that's now a hotel...I was going to Boston to try and get my husbands life sentence reduced so I figured why not stay in an old jail. It was also next door to mass general so I figured it was a good location, JIC...
Going there was one of the best decisions we made and Dr Castells ROCKS! She's a  dynamo of a doctor and makes me look slow...slew of tests and she got us in to see Dr Greenberger who was one of the nicest, most compassionate doctors I've ever met!  We  felt like our grandfather just gave us a huge hug, told us everything was going to be okay, he gave us hope. When he pulled out his card and wrote down his cell number and told me to call anytime I practically tattooed his number on my side. JK ...I haven't had to call but he has responded to my emails really quickly.

My husband has slowly started to make progress and stop reacting or short circuiting his system. He's finally started to live a little again and is no longer in severe pain with every meal, his mood, energy, cognitive issues, brain fog is way better, his rashes are pretty much gone (still some on the face from shaving) but nothing on his body!!! He still has a lot of connective tissue, tendon and joint pain but it's not constant. It's nothing short of a miracle because I thought he'd never get better. Our biggest challenge now is trying to get him to sleep, his brain never shuts off.

He takes a ridiculous amount of H1/H2 histamine blockers but what we've found to be the most effective drugs for him are: Ketotifen (4 Mg a day), singulair, gastrocrom and the neurprotek by algonot supplement.

I seriously feel like the neurprotek has been AMAZING and would urge everyone to try it, it's not a cure by any means but this is what I witnessed...after 6 weeks of building up to 4-6 capsules a day...it was like Fabios brain fog, energy, mood everything just started to fade...it's like someone took windex to his brain...his real personality came back and he wasn't this spacey, tired, moody, old man. Also his hair started to grow back - he has hashimotos and his hair was thinning by the minute, dry and felt like hay. Now it's shiny, soft and the bald spot on the crown of his head has hair on it. Now I know maybe his thyroid is working better but whatever to me that's a sign that he's getting healthy.
The neurpotek has potent, pure flavanoids that act as natural antihistamines, anti inflammatory,  NATURAL mast cell stabilizer. It's in an olive oil kernel base that helps the body to absorb the flavanoids and has no weird fillers from who knows where. I think it must be the olive oil that helps with the hair but this has really worked well for us. I have started taking them as well and my hair is off the charts...ive gotten 3 compliments from strangers and I feel great. Dr Theoharides would not put his name on something that was bogus.

Now the gastrocrom I am still on the fence with but I'm too scared to stop because he has been so stable. It's just very expensive and a pain to deal with...NIH and dr theohairdes have both told me that it really doesn't do much and the body doesn't absorb well and it goes right out, his cognitive issues are better so I don't want to disrupt things. His diet is still very limited to mostly protein and very few carbs, there are maybe 8 things he can eat. He's learned to deal and just doesn't want to be in pain every time he eats. We will stick with it for a couple more months.

When Fabio has some stressful situation occur or he gets upset ect the first thing to go is his stomach and he has difficulty with his next meal. We usually give him 1 ketotifen and this seems to settle things down.

I forgot to put singular in his medicine box for 4 days , oops and he was more tired, grumpy and had stomach issues. So we know that works pretty good too and started taking it in the am because it helps him with energy.
We are still waiting to see what to do about these absurd IgE levels. We have been presented with trying xolair  but I'm on the fence for now, the side effects just seem really risky.

Current meds he takes - this is what works for him
5am - levoxyl 100mcg
530am 2 x 10mg  Loratadine
          2x 150 mg Ranitidine
           10mg Singulair
After breakfast 81mcg baby aspirin
1pm 2 x 10mg certizine
6pm  4x1mg Ketotifen
        2x 150mg Ranitidine
       40 mg pantapropazole
Bedtime 25mg doxepin 2 x 25mg  Atarax (sometimes 50mg)
600mg total of gastrocrom 3x a day
Neurprotek 3x a day at mealtime total 6 pills
Acidophilus 2x a day, Aloe Vera juice, Vitamin D & C

This whole thing been such a life changer and one of the most "shocking" and horrific things to ever happen to me. I finally just said F### ### disease with the weird name, I will not accept that you are going to ruin my life and I will not accept that my husband has to suffer!!! Enough!!! We can't look back only forward, things are different and I have to turn this huge negative into a positive.
He doesn't have cancer, hes not paralyzed, every day is a gift and we just have to deal!
it's taken 9 months of crying everyday and feeling like I'm having a constant panic attack to get to this point.

I am much stronger and I am no longer scared...I feel like if I need to climb Mt Everest without oxygen to help my husband I ready...I have assembled the best possible team of doctors  to hold my hand and get me to the summit. Fortunately I only need to go to the allergy isle at CVS!

Can someone please just find the customer service department so I can try to exchange this disease for another one... this one really doesn't work with our life style! I'd even exchange for 2 diseases....please??? I actually started laughing out loud because how ridiculous is it that we are in the food business with a Mast Cell Disorder???!!! I guess I'm just glad I can laugh about it now. I know life has it's challenges and this is a big one!
Sorry for the long post, this isn't half he stuff that's happened to us, only the most important. Our story sounds very much like everyone elses and so much has to come from the patient, the right combination of drugs, and the right doctors.
Thank you again to  everyone who shares their stories, heart aches, frustrations and tips...you will never know how much you've helped us!!!

I am new to the board, so can't add much on the medical side. I just wanted to say how fortunate your husband is to have you at his side helping him through this challenge. Having that kind of help with an illness like this is invaluable!

Patricia, I wrote you this long reply then lost it! I wish I could remember all that I said, it was great! So to get to the point, I'm so glad you told us how you guys were doing. Keep up that sense of humor, it's what keeps you sane!! I really hope Fabio starts to get some control over his symptoms. Hopefully his body will start to chill out now that it's on good dosages and you have the best doctors. Stay on top of those medications and make sure that the pharmacies have do not substitute for the brands he tolerates. I'm guessing he's going to be like some of us that are very sensitive to the inert ingredients. It's unreal the difference in brands. I'm right now in a panic trying to get the teva allegra that I've been taking, the pharmacies are no longer carrying it since it went OTC. So far I can only find the 180mg and I take 60 mg all day long like m&m's I seem to do better that way. The 180's in a lot of brands have pregelatinized startch in it and it makes me mega sick. Teva so far does not but I can't take the 180's as often as I take the 60's so I'm hoping I can cut them in half. So Im scurrying to find out the brands that are carrying TEVA OTC fexo now. So far if anyone needs to know its Member's Mark ( Sams Club, Walmart) but only in 180mg so far and perrigo also 180mg only. The key for TEVA is to look to make sure it's produced in Israel. Ok didn't mean to go off on that tangent. Down in the recipe section I have a section what to eat for the I cant eat anything crowd. In case your not familiar with a lot of weird foods like teff. And some brand recommendations. Maybe he could tolerate the teff scone ( it takes imagination, it forms a shape but is like eating a sand castle) but it's nutrition.  Also some brand recommendations that have been good to me for purity. Hopefully Fabio will be able to participate in the business soon. You are taking the world of responsibility onto yourself, make sure you ask for help from anyone you can that does not cause you drama but instead relief. Anything simple Fabio can do to help even when feeling bunk, so he still feels like he's contributing.  I've really got nothing epic to add here, just please know we care and are here for you to vent and think! It' helps so much to throw ideas out there and someone pipes up, I've tried X and it helped me and here you thought you were the only one with that problem!