I can say I have absolutely no arizona recommendations at all! So far totally inept allergists etc.   I won't bother to list the ones I've tried, hers one I was considering, Dr Lara Ispas http://www.sonoranallergy.com/syst_mast.php, another that was recommended in the phx area is  both of these are chances, Dr Lara actually wrote a paper on masto a while back. I emailed her office to see if they do treat masto patients and didn't hear anything back. Right now I'm holding to just wait and go see a specialist, travel for me is also almost impossible, but I'm currently done with allergists unless they actually know something about Mast Cell disorders. another is Duane Wong, MD Arizona Allergy Associates 705 S Dobson Rd Chander AZ, not a mast cell specialist but I've been told he is at least investigative......  The last would be Dr Leonard Schultz in Tucson
someone that has masto goes to him,  I've been to another physician in the practice it was awful absolutely awful. However the "wait" for the physician I should have seen was too long so they gave me the schmuck. So definately wait for Dr Schultz if you want to try him. Sorry to sound like such a downer! Thats just where I am at the moment, just done with Dr egos, and back to self medicating as best as I can and using my GP.  There was a doc at Mayo, I was seriously considering but my Insurance does not cover him, his page says mast cell disorders and eosinophil disease. Which was another subject I wanted to broach with you, Eosinophil disorders are quite higher in arizona as compared to other states. They've not figured out why yet, I saw a childrens eosinophil specialist in Tucson who would have been smart enough to figure me out, but had no absolute no desire to. I was used to dr shock, but really didn't expect it from this one I figured he'd be intrigued bigtime with an adult and want to figure me out! NOT! Oh it'd help if I gave you the Mayo Doc in phx wouldn't it?
Dr John C Lewis, Mayo Clinic heres the web address
http://www.mayoclinic.org/bio/10540024.html
Possibly give one of these a try!
Sandi

Very Frustrating Deb! In my opinion Dr ISPAs Ponas should have investigated further! Arggghh these allergist drive me bonkers! I've heard the same story from mayo, basically started a masto patient on chemo that should have never started it.  My gastro here in tucson had more hope in the phoenix doctors than tucson...  I'm on current holdout for Dr Phillip Miner Jr, in Oklahoma City, OK, he's really familiar with mast cell disorders/ eosinophillic with regard to gastrointestinally challenged peeps...... He was at the conference in tucson this year and was great to hear, I wish he could have spoken longer.  Have you looked into autistic spectrum diseases also for your son? Possibly Peg tube feedings of hypoallergenic food may alleviate his symptoms. Deborah and the girls that have technical knowledge are transferring info over to this board but possibly go over to the old board to read up on all of us and medication regimens and keep working on your dosages/intervals. I didn't get to read all the other replies so sorry if I'm repeating myself!  It seems truly even with the "right" doctor a lot of self awareness is needed to manage severe symptoms.  You have to constantly be aware of products in use around you, things you are in jesting down to every single ingredient
hormonal cycles, the filtration of water,,,,, If I remember right you have severe food/ chemical intolerances also so you already know. So Im def repeating myself, keep on keeping on! This is no fun yourself, but when your child is ill that is awful, and frustrating. Oh from the lefora site, I'm the one who recommends visual head butts when you are ready to scream sitting in front of the latest doc who tells you it's all in your head or Wow, I've never seen this before, or hmmmm I don't know, you'll just have to figure it out theres really no research on people with your problems...... I have this terrible problem of jumping on here when I'm exhausted and then I make no sense, ramble on and on (easier than getting up and going to bed
my spelling and grammar got to the birds!!! I'm in Catalina, a rural community N of Tucson Where the coyotes keep you up at night

Hi, Sandi.

I'm on 100% pure cromolyn sodium, 1-2 200 mg. caps upon rising, before meals, before chores (I'm an organic farmer) and at bedtime. The chloropheneramine needed a filler so the pharmacist had me bring in certified pure DE, food grade, that I further tested for purity (iodine test to ensure it wasn't cut w/ flour) just to be sure.

This has been a lifelong venture for all 3 of us.  For the past 28 years, every day has pretty much been a matter of survival.  I've gone to great lengths to get my sons' special needs accommodated, even initiated and worked into state law legislation that set nationwide precedence.  Our current home was custom built to accommodate our health problems.  We built on virgin desert in an area that had never been used for AG or industry, nor anywhere nearby.

I've put my  son back on an elimination diet.  While at the shelter, they gave him foods that we know he's intolerant of.  I'm pretty sure the event that triggered his neuro meltdown last weekend was physical exercise.  He had gone on a 30 some mile cycling event (pre-MS-150 fundraiser) with his dad and brother.  The confusion is starting to lift some and he has resumed eating and can communicate better, but now he's super pumped, restless and manic.

I am working on getting him a referral to Dr. Ispas-Ponas, in hopes she can help us get him worked up next.  She doesn't dx or treat, she says, because she doesn't have the needed facilities.  Her private practice is set up for allergy shots, that's it.  I am very thankful for her part in getting me worked up this far, and for the referral to a decent hematologist.  My son has an appt. w/his PCP next week for getting the referral he needs.

My son has seen dozens upon dozens of specialists over the course of 28 years and none can figure it out.  Most get frustrated and pass the buck, kinda' like hot potato.  I can't take him to the ER, all they do there is stabilize w/drugs, which only worsens his condition and turns him psychotic and combative.  He's on medicare/medicaid so it'll probably be even more difficult to get him to a masto specialist...and we're running out of time.

My other son, who's still functional, was dx'd with high-functioning autism. He's the one that used to go into anaphylaxis from the strangest things (water evaporating of skin, etc).  He's actually outgrown it, is  brilliant as ever and has a successful career as a software engineer.  I've read that autism has been linked to masto and childhood vaccinations - interesting!  Like us, he has EDS 3, which I am becoming more and more convinced is a complication of untreated masto.

We need a masto specialist and a magic carpet to transport us there.

Deb Mc

I don't know why I didn't think of this before, but Dr. Theoharides does research on both mast cell disorders and autism.  Why don't you send him an e-mail?  Here's a link to his contact information:

http://sackler.tufts.edu/Faculty-and-Research/Find-People-and-Research/Faculty-P...

Maybe he'll have some ideas for you that other doctors have not.

Heather

Deb;
  My daughter does not have a diagnosis of MCAD yet.  But myself and a couple of her Dr.'s believe this will come.  She has pretty much every symptom (other than UP) and responds fairly well to the meds used to treat MCAD.  She has been to MANY Dr.'s and to Mayo twice.  We have been knocking on several doors trying to get a specialist in MCAD to help us with a diagnosis.  We have been unsuccessful so far but we aren't giving up!! Her story is on this forum under "my daughters story."  I am relieved your son has made it home safely.  I sure hope you get some responses from some specialists that may be able to help both you and your children. Keep us informed.
                                                                    Kim

Sandy, I also wonder how many of us EDS3ers have a mast cell disease as the underlying cause.  I'm pretty sure my histidime/histidine intolerance was inborn.  Ditto my kids.  We all presented at birth w/the same symptoms and my younger son has the exact same food aversions as me!

My pure cromolyn costs me $52 for 120 200 mg caps. It requires a Rx but the pharmacy I use is happy to do it.

I took my son off of cromolyn this morning.  I'm beginning to think it's exacerbating his symptoms, that he - at least at times - has too little histamine.   To test this, I gave him a double dose first dose of the day and it was the worst day he had in the past week, and he's had a rough week.  Interesting to note that his plasma 3-methylhistidine is low but his histidine and 1-methylhistidine are always elevated.  

Another interesting aspect is that I am very sulfer intolerant, all forms, and have been at least since 1982, when given magnesium sulfate IV to stop premature labor (it didn't work and felt like fire was coursing through my veins; throat was burnt raw and was hoarse for months thereafater).  Anywho, sulfer intolerance is associated w/too little histidine, which the body breaks down to histamine.  So now I'm wondering if our problem isn't lack of ability to break these two proteins down.????  The cromolyn and cholorpheneramine work for me and I'm seeing improvement - a difference that complicates our mystery futher.

I'm a waterfowl farmer and egg rancher.  I raise exotic and domestic waterfowl and exhibition and novelty chix and goaties.  The abundancy of wildlife makes growing garden (not to mention pasture) next to impossible.  We have a couple small greenhouses for growing the few veggies and fruit my son and I can eat.  Up until just recently, I wasn't able to eat any fruit or veggies as I'm missing the liver enzymes needed to break them down.  Or at least I was.  Supposedly an inborn hereditary disorder that's not curable yet when I removed all histamine from my diet, I was able to eat fructose!!!

I can't have any FOS, inulin included, no fermented or aged foods and no digestive enzymes or probiotics.  Gave up trying as each time took away use of my hands for anywhere from 2 days - 6 weeks and started the inflammation/dislocation process, or neuromuscular meltdown.

If I find a magic carpet, we'll be sure to swing by and pick you up. BTW, my EDS 3 dx was established by a University Rheumy down your way.  He knows how to evaluate via the Beighton scale but doesn't treat.  Couldn't find a single rheumy up here who could do either.  Ditto our two clinical geneticists.   It really sucks having rare med disorders here in AZ, doesn't it???

Take care,

Deb Mc

Thanks for sharing that, Joan.  My sons and I were all blue-eyed blonds as children. Now that they are grown, both of them are more brunette.

EDS is hereditary. However, the defective gene or cause has not yet been found in the particular type we have.  Most of the EDS3ers I've been in contact with have allergies, IBS or IBD, and many report anaphylaxis, flushing and food intolerances that increase and worsen with progression of joint and muscle problems.  I am convinced mast cell dysfunction is one of the underlying causes of EDS 3. Makes sense.  Afterall, mast cells are part of connective tissue.

Joan, I've tried digestive enzymes with and without bromelain (potent histamine releaser) and can't tolerate them.  I don't know if it's because the enzymes are fermented but I've even tried some from non-lactose, non-soy sources and still no go.  Within 10-15 minutes of taking 1 cap, the inflammation returns to my spine and the nerves in my hands, my left SIJ dislocates, my pelvis twists, setting off the chain of events leading up to neuromuscular meltdown.  I can actually feel the muscles cinching tighter and tighter in my arms, my thumbs and my legs.  Next thing I know, all my EDS 3 and myopathy symptom are back w/a vengeance.  And I just want to die it's so painful and disabling.

The enzymes I'm missing in my liver (Aldolase B and fructose 1,6-Diphosphatase) can't be supplemented or replaced short of a liver transplant and from what I've been told, that wouldn't be advisable.  Since it's genetically coded, my body would kill off those enzymes and possibly reject the new liver.