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HmgGuy

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A few years ago I read about a doctor in NY. I believe he was in Westchester County but am not sure. He was known as the best at diagnosing where other doctors couldn't. My daughter has been suffering with a mystery illness for several years and we've seen all kinds of doctors and ran all kinds of tests many of them multiple times. This year the illness has gotten much worse with the symptoms expanded and intensified. This week she got some allergy results which basically had her allergic to just about everything. This includes more common allergies like peanuts, gluten, soy, dairy but even things like garlic, mangos, carrots etc. etc. The allergies are not the root cause I think but instead something that has resulted from the root cause.

My daughter will be in NY and I was hoping to find this doctor and have her seen but I've totally lost all of his information. Any ideas?
 
I'm not aware of this doctor but have you been to one of the clinics that does collaborative dx like Cleveland Clinic or Mayo Clinc? It's where all the specialities come together to help a patient.
 
We are with Kaiser in California. We've been passed around to a bunch of doctors many of which ran the same tests. The allergy results were actually presented to us as noteworthy by a sleep doctor instead of the original doctor who ordered the tests. He said he was excited to have "a real case" but although he has been the most promising I'm not sure that he's in a position to help us without the other doctors taking things more seriously.
 
Those allergies could certainly account for a lot of issues. Though you don't outline what problems she is having, typically allergies are the cause of other issues not the allergies as a result of something else. I'd certainly be looking at injections for the environmental ones and a restricted elimination diet for the food ones.
 
That is only a small portion of the list we already have and apparently they are now going to test for more.

The biggest problem this year in terms of being the most obvious, has been paralysis. She will be perfectly fine then become paralyzed and semi-unconscious. I've been with her where she is almost awake but she can't speak properly or make any sense or focus her eyes. She'll lose function in her legs usually before she passes out and often she won't pass out completely just can't move her legs.

This started happening only this year with regularity. It happened maybe 2-4 times total in the past 6 previous years. This year it started happening daily then got to where it happened 4-5 times a day.

She started eliminating gluten from her diet and this helped but did not eliminate the problem.

Other issues include sometimes severe acne. One doctor said this was bacterial and not typical acne.

Severe asthma attacks. She was a gifted athlete in high school but had to quit because the asthma became so severe. During one game she passed out and her heart stopped.

Her heart has been tested and retested including stress tests and wearing a 24 hour monitor. They have found no problems. She's had MRIs of her brain, her neck and central and lower spine.

A couple of weeks ago she purchased a gluten free health bar. 0g sugar, 20g protein and gluten free. She took one bite and had a massive asthma attack almost immediately after not having had any problems just moments before.

She was at school and fortunately the campus kitchen has a gluten fee diet because they have several students who have celiac disease. So she got a gluten free meal which unfortunately had a slice of cheese included. This wiped her out and she passed out just from a small piece of cheese. So that is how she found she could no longer tolerate dairy. Up until a few months ago, dairy had not been a problem.

She's also had episodes where her feet and hands turn yellow/orange but we believe this was due to her changing diet and eating a lot of vegetables with beta carotene. We learned only this week that her list of allergies include several of those fruits and vegetables including carrots.

we've explored: Lupus; Cushings, Lyme Disease; Celiac; heart conditions; brain/nervous conditions; sleep disorders; mental illness; and I'm sure sure several others I'm not thinking of right now.
 
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