Not Exactly Pots Question, But Would Like To Have

[LindaJoy]

Hi, everyone. I'm still in the hospital in Ann Arbor. Yes, I've lived in hospitals a lot the past few years. I can no longer tolerate any foods without severe reactions. Even--get this--plain sugar in packets gave me problems. I guess there's corn powder in those packets, and I'm highly reactive to corn.

TPN is not an option as I had that done two years ago and 1, developed 3 blood clots within a day (I've since learned that I have a high clotting factor), and 2, they use egg in the formula, which I'm highly allergic to. What they're doing here is just loading me up on Benadryl (I'm very sleepy, yet my body is buzzing), and allowing the more tolerable reactions in the name of having to eat. The Benadryl is helping a bit, but I'm still flushing and itching after eating, with severe GI pain, lots of arrhythmias, migraine, etc.

I've been talking a lot with mastocytosis people because the doctor here thinks I have either masto, histamine intolerance, or something as yet discovered. My doctor wants me transferred. My two options are Brigham and Women's, or Johns Hopkins. He said that whatever I have needs even better experts than Cleveland Clinic or Mayo can provide.

Now, here's my delimma. There is a mast expert at Brigham, but what if it's not mast. Seing as that would be the focus, if I go there, and it's not masto, I go home, yet again, still sick, unable to eat and suffering.

If I go to Johns Hopkins, they can look for whatever is causing this, yet, they don't have a masto expert, and what if it is masto? They do have an allergy unit that admits, though

I don't know what to do. I know that my reactions have gotten so bad that my heart is actually going into a bad rhythm, I guess, called elongated QT interval, during the episodes after I eat (caught on EKG). My cardiologist said I'd better get whatever underlying issue is going on, under control, or I could have severe heart complications.

Those of you familiar with these places, what do you think? I know some of you have gone to Johns Hopkins. Were you happy with their treatment? Any of you go to Brigham?

I hate to start all over with yet another set of doctors, especially at a teaching hospital, but I guess it's what I need to do if I want to find out what is wrong with me. Even my elemental formulas have begun to cause reactions (they both contain aspartame, which I guess is a histamine releaser, so if I have histamine intolerance, a condition caused by toxic histamine levels in the body, the aspartame can cause all of that histamine to activate in my body, causing systemic problems). I know this has nothing to do with POTS, although my POTS is pretty bad right now. I got moved to the telemetry floor when my hr went into the 40's for a couple of days. Now, it's going tachy.

Thanks, everyone. Hope to hear from you.

Lindajoy

[iheartcats]

I cannot offer much advice, but I feel for you. I have a nut allergy, and I know how awful allergic reactions can be (and that sometimes they are hard to get taken seriously in the outside world).

That you can eat virtually nothing is frustrating...I hope they find out what's wrong.

If you are having this much of a reaction, I've always been told it's because of histamines ' on attack.' I wonder if yours is more Mast related then? It's a hard decision to make.

Let us know how things go!

[MightyMouse]

I don't know about Brigham... but our family has friends who moved back from rural Mexico because their infant son had terrible allergies and they took him to Hopkins, where he received treatment and finally was able to keep food down after months of vomiting, losing weight, and major allergic reactions.

What ever your choice, I wish you the best!

Nina

[mom4cem]

I can't offer any input but just wanted to say I'm keeping you in my thoughts and I wish you the best. Yes, please keep in touch and let us know what you choose.

[juliegee]

Hi Linda Joy,

Sorry that you're in the hospital again- how frightening for you. You've been dealing with this for so long without adequate relief...

I've passed along contact information to you several times for Dr. Marianna Castells, one of few mast cell experts in the country. She's at Brigham and Women's. She actually sees patients at a satellite office several miles from B & W hospital. That's where I saw her as an outpatient. If you're too ill to travel and need to be transferred directly to another hospital, I'm sure your docs could arrange that via her office. I am confident that she can come up with a good treatment plan for you. She specializes in figuring out puzzles like you :-) Since she DXed me with mast cell activation disorder, and put me on a good regimen, I am doing so much better. I also have an emergency plan from her that I am supposed to take to the ER (if necessary) and a pre-medication protocol before any X-rays, CT scans, procedures, or surgery. Just having that makes me feel so much safer.

I know they've previously ruled out mastocytosis for you- beacuse your serum tryptase isn't elevated? Right? The other two masto specialists in the country are: Dr. Joseph Butterworth at Mayo/MN and Dr. Cem Akin at the University of Michigan. Of the three, Dr. Castells is in the forefront of MCAD, which is what you're most likely to have.

With mastocytosis, the patient has too many mast cells. In MCAD, your mast cells simply behave badly and overeact. MCAD presents exactly like mastocytosis without the obvious laborartory markers, i.e. elevated serum tryptase, etc. Dr. Castells looks extensively for other laboratory markers and clinical evidence to come up with a DX. She's the best of the best. I joined a masto forum to find her.

You mention that you're taking lots of benadryl. It's usually not very helpul to masto patients. For some reason, many of us have awful reactions to it, especially when given by IV. Atarax would probably be a better choice now to calm everything down. You're already doing gastrocrom, right? I hope your docs have you on an H-1, and an H-2 daily, like ranitidine and zyrtec. Singulair also helps many of us as it works slightly differently. It's getting the the right combo that's most important.

I've probably never been as badly off as you are Linda Joy, but close. I remember how scary it was, especially when I couldn't eat. It seemed like nobody could help. Nobody could figure me out. You're in my thoughts and prayers. please let me know if you need any phone numbers, etc. Keep us posted.

Julie

[dsdmom]

Hi,

I just wanted to add in my 2 cents about BWH (Brigham). I live in the Boston area and have spent a ton of time @ Brigham - both before I was sick (I was a sales rep and worked in the OR there) and since I became sick. Overall, it is an amazing facility. However, it is NOT a place to go for dysautonomia, but I have heard wonderful things about Dr. Castells from my pulmonologist @ BWH. But, it seems like you are concerned that if it's not masto, then what? Could Dr. Castells not admit you for testing? Could you get in touch w/ her ahead of time and try to come up with a plan if it 's NOT masto? That you don't want to be sent home w/ no answers - can she then point you in another direction, etc?

Good luck....

[juliegee]

Dr. Castells spends her life differentiating masto from other "copy cats" (like carinoid syndrome, etc.) She checked me out for many things before giving me the MCAD DX. I think Linda Joy would be in good hands even if it's not masto. It is definately allergy-related and Dr. Castells is a world class allergist/immunologist. She's helping me with weird immunological stuff I have going on- not masto related.

Julie

[Heiferly]

I was an undergraduate at Johns Hopkins University when I was treated at Johns Hopkins for a "mystery problem" with my liver. I thought it was a wonderful hospital and they were very thorough in helping me with my problem, but I can't say anything specific about the departments you would potentially be dealing with for this. It's a tough decision and I hope whatever you decide that they get it figured out soon you can start feeling better!!

[LindaJoy]

Thank you all so very much for your input and support. I appreciate it more than you'll ever know.

Mack's Mom, I appreciate all of the postings you have given me, and the emails. I have taken it all in, believe me. In fact, you were the inspiration for me to talk with my doctor about Dr. Castells. I even tried to contact her by phone weeks ago, after one of your emails, but then I ended up in the hospital and haven't been home since. But, my doctor here has tried to contact her, as well. Hopefully, he'll keep trying and she will respond.

The pre-meal Benadryl may be helping my flushing / itching symptoms a bit, but maybe Atarax, as you say, would be better to try. I can ask my doctor about it. I know my gut issues are getting worse since I've started to eat again.

I am eating hamburger (no soy added and no seasoning), broccoli, cauliflower (sp?) every meal. Ugh. Not good for breakfast, that's for sure, but it's food. My labs are holding, thank goodness, esp. after not eating for nine days.

I hope this finds all of you doing well. I hope to have some GOOD news soon, to post, esp. after all of my postings for so long now have been majorly depressing.

Hugs to all,

Lindajoy

[Tessa]

Just wanted to tell you that I am sending you my best thoughts and wishes, hoping that you can feel much better soon.

I?ve never had such a severe reaction to food, but had some very scary ones to drugs... And I know how you can suffer...

take care and take your time to recover.

Love,

Tessa

[Ernie]

Hi Linda,

I am sorry you are still in the hospital. I am followed in a teaching hospital and this is the best for me because they also do research and I am a research case. I went to regular hospital and they don't do anything for me.

[juliegee]

Hi Linda Joy-

I hope you can reach Dr. Castells and she is helpfulo you. In the meantime, I just realized that you are probably at the University of Michigan now. Dr. Cem Akins is another reknown masto reasearcher, who practices there. Have you seen him? From what I understand, he doesn't recognize MCAD.....he believes the symptoms are real, but without laboratory markers, he calls it "idiopathic anaphylaxis." He still treats it similiarly as Dr. Castells- no matter what he calls it. He would probably want to do a bone marrow biopsy (to check for excessive mast cells) on you due to the severity of your problems- have you done that yet?

You asked about a mast support group. Here is a link:

http://homepages.ipact.nl/~milco/ivo/masto/

Maybe post your symptoms and ask the folks there for a doctor and/or advice. I hate that you're suffering so much. I'm sending lots of goof thoughts your way.

Julie

[ajw4790]

Hi!

Hope you are able to find some answers and relief soon! Sorry I don't have any specific help to offer, but I am sending positive healing thoughts. I can not imagine all of what you are going through. I hope that things wind down soon for you, and allow for a good holiday season. I would hate being stuck in the hospital through the holidays. I hope that you are able to be seen by one of the masto. drs. and they can help you out!