Disability/Contact List

[Guest guest]

Has anyone with Samter's tried to get on disability and if you have,

were you successful, was it difficult or near impossible? Did you

have to use a lawyer, etc... I would really appreciate any

information that anyone can give me on trying to get disability as I

am very severe with this illness and haven't been able to work for

over 15 years and am only fairly controlled. Taking loads of

prednisone, antihistamines, asthma medications, using a low to no

salicylate diet, etc...(Please feel free to e mail me privately). My

HMO insurance is going up again and is getting near impossible to

continue the premiums, so I am looking at alternatives.

Also, someone on this list said that they were going to try using

Melatonin. I am wondering if that person ever tried that and how did

you respond to it? The study from Russia said that Samterites have a

pathological response to exogenic melatonin and acetylsalicylic acid

(if I read the study correctly) but since the study used peptide

bioregulators – the epiphysis extracts – Epithalamin and Epiphamin

(which are derived from pineal glandulars, from what I could find

out), I am thinking of trying a pineal glandular. It would have the

whole complex and not just extracted melatonin and/or the epithalamin

and epiphamin bioregulators. I am not sure if we would react to a

whole glandular complex and if this would work or not but am going to

guinea pig myself since I doubt that the peptide bioregulators are

even available in the states. Again, I am curious as to the response

of the person who said that they were going to try melatonin or had

tried it.

I tried to talk to my respiratory doctor a couple of weeks ago about

some of this latest research and he just brushed it and me off. HE

didn't even remember what disease I have even with my chart/records

in front of him. I have been going to him for 2 years now and have

seen him 6 times, called countless times for prescriptions and

medications for chest/sinus infections and he doesn't remember what

my disease is???? IT was very discouraging to say the least. He

wasn't even interested and tried to tell me that having a sensitivity

to aspirin wasn't unusual with asthmatics. I didn't even try

to " enlighten " him as to this illness. He had never heard of it

before me and still doesn't know anything about it and doesn't care

to know. What was scary to me was what if I had of been in an

emergency situation and he came into the hospital and didn't even

know what my records said and tried to treat me!!! God only knows

what could have happened.

Anyway, I will be going to an allergist in Albuquerque, New Mexico at

the end of July. This doctor takes the HMO insurance I am currently

on. He did his internship at National Jewish in Denver and is in

their data bank for treating Samter's. I will let you all know what I

think after the appointment.

There are also two other doctors in the Albuquerque area who are on

the National Jewish data bank for treating Samter's. One is a

pulmonary doctor and one is an allergist from National Jewish who

travels down from Denver for the clinic, twice a month. These two do

not take the HMO insurance I am on so it will be " iffy " if I go to

one of them.

Thanks for any info!!

New Mexico