National Jewish Medical and Research Center - Trip Report

[Guest guest]

Hi Gang,

The below message was just sent to the F.A.S.T. list, but thought you would

benefit from it too. I've been off the Eosinophilic list for about 3 months

due to some large changes in my life.

Best regards,

Kenny

I've been away traveling (as usual), and just wanted to give you an update

on my recent trip to the National Jewish Medical and Research Center in

Denver, Colorado. If you are not familiar with National Jewish Center (or

NJC for short), let me give you a little background.

NJC was started nearly 100 years ago (I think) and is currently rated the

number one hospital in the USA for respiratory treatment. In addition, they

also specialize in asthma, allergy, and immune related problems. Some of

the top people in these fields practice at NJC. Usually NJC gets all the

problems that traditional doctors cant fix... need I say more?

For those of you who dont know me, the basic way to sum up my allergy

problem is " My immune system is broken, as I am allergic to almost every

food " . In addition, I have colitis, eosinophilic gastroenteritis, reflux

esophagatis, sinus problems, ulcers, and other intestinal problems. For the

past 5 years, I have been playing " stump the doctor " and never getting close

to understanding what is wrong with my system. While I intuitively know my

system is " broken " , every doctor to date has only treated the symptom, and

has been uninformed (nor willing to find out) about any potential underlying

imbalances that could be causing all my health problems (which I KNOW are

all tied to food in some way).

NJC takes a unique team-approach to medical diagnosis. During my 6 day

visit to the hospital, I saw the following types of doctors: case doctor,

food allergy specialist, nutritionist, eczema/dermatology specialist, and

psychologist. In addition, a battery of tests were run: blood tests for

enzyme and immune imbalances, skin scratch tests for allergies, double-blind

food challenges, asthma tests, CT sinus scan, and a few others.

As my set of problems are very unique for an adult, and it took a while to

finally find the right doctor at NJC. Most people thought they

were only dealing with food allergies, and in most cases, these specialists

are all that are needed. But it was only the eczema/dermatology specialist,

Dr. Leung, who finally started to unravel my unique set of problems.

It will take time to try various procedures to get my immune system

balanced, but Dr Leung is one of the top dermatology guys in the USA, and

his whole background is understanding the immunological response.

So for the first time in 40 years, I finally have some sense of hope, at

least to reduce my level of reactivity (I am not planning on a cure, just an

abatement of my reactivity). As mentioned, it will likely take months to

begin to understand if my immune system responds to the proposed treatments.

Anyway, if you have stalled in your quest to find treatment for yourself or

loved one, I would HIGHLY recommend the NJC. But depending on your

insurance, an evaluation session at NJC can be EXPENSIVE.

Below are some notes which which were sent to the FAST list, but I

thought it would help to have the above information as context as you read

them

Feel free to ask questions about my experience, but note that I will be

traveling (again) and will depart on Friday, and be gone for over 2 weeks.

Best regards, Kenny

-----------------------

asks:

>I think that's great about the medical center! Do they have any new

>theories about food allergies or anything?

I can't say there are new theories about

food allergies, but here are a few key things I learned:

1) If you recall, I have serious food allergies, with other complicated

immune problems... I FINALLY found a person who actually is an eczema expert

(likely one of the top in the world) who looks at eczema as a systemic

problem, and food allergy is only a part of the whole problem. This guy

immediately knew what was going on with all my indices (enzyme levels, IgE,

IgG, etc) and my history of health problems. ALL my health problems are

interrelated (how come I know that, but this was the only doctor who knew!)

We are on a course to try and modify some of my enzymes/antibody levels,

which in turn should reduce my food reactivity.

Actually, I saw this doctor on my last day there, and I was already thinking

I was going to leave Denver with the following evaluation from the

food-allergy specialist: " You have a lot of food allergies, have a nice

life! " Most food allergy guys, even world experts, are typically only

looking at

food allergy. Nutritionists only look at nutrition, and dermatologists only

look at the topical skin. It is rare that you can find someone who can

look at the systemic aspect, and immediately recognize that the food allergy

is just one small piece of a larger puzzle.

My case doctor, and the food allergy specialist had nothing to add to my

understanding of my food allergies than any other doctor. It was only Dr.

Leung, the eczema specialist, who started to unravel my problems. It will

take some time to make any changes, but the first line of attack is to try

and boost my LOW gamma globulin level. Depending on how my system responds

to a few vaccinations they gave me, will determine the next step.

2) Skin-prick antigen extracts often degrade over time. Thus there can be

a high number of false negative results. Based on my own elimination and

food challenge process, I felt there were many false negatives on the skin

tests (for those of you who know me, I do not beleive in skin tests, as they

only test for IgE mediated responses) For many of my negative results,

we did " puddle testing " , where they make an extract using fresh food, on the

spot. I reacted heavily to most of the puddle tests. Again, one must be

wary of any allergy test!

3) There is a study underway for testing a new anti-IgE drug. The test is

primarily aimed at people who are allergic to peanuts, but the drug is not

specific for peanuts, and just lowers the IgE level and body reactivity.

Thus those with other food allergies will also benefit.

I may move to Denver for a few months to participate in the study! But when

they tested me last week, my IgE level (generic IgE blood level) was over

5000!!! The limit for the study is an IgE level of 700. If my IgE level

remains that high, I will not be allowed to participate in the study. No

matter how much drug they give me, they dont think it will lower the IgE

level enough to make any difference.

If you like, you can post this message to the group.

I'll be around this week, but as noted, will be out of town the following

two weeks.

Best regards,

Kenny