Re: More disapointment...

[Guest guest]

Hi :

I have been taking either Benydryl or Claritin. It really works because I

dont have time to scratch all of the time. I wish you well. I never knew

many other people suffered with this

>===== Original Message From urticariaegroups =====

>theresa

>i sure hope the water works!!!! How I can relate

>i went to a Buddhist healing ceremony for skin problems last year--yes I am

>willing to try anything........it did not work

>i have had hives every day for a solid 2 1/2 years--it is so dishernting

>pred did nothing for me==did not stop the hives at all--nothing

>and it helps os many..............and heaven knows i have been tested and re

>tested for everything and taken mega amounts of meds --all sorts

>to no avail

>what can i say--my body is awful-my arms are ravaged-I have welts, bruises

>and i am ashamed ot say huge scabs where ei have sctracted so much--the itch

>is so unbearable and scratching brings wonderful relief--i am embarrassed by

>my skin--my back looks horrid--well NOW that I am thinking about it-my entire

>skin does-except i have been so LUCKY in that my face is not affected--i do

>have angioderms of the eyes but no hive son face

>werid h

>uh

>well thanks for listening

>i understand what yu say and how you feel

>brenda

>

>

>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>If you do wish to unsubscribe then you can click on the following link:

> <mailto:urticaria-unsubscribeegroups>

>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

>This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide cyber-family.

>

>We share whatever needs to be shared to help one another in our struggle with

Chronic Urticria.

>

>Any posting that is off the main topic of Chronic Urticaria, we post with a

prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

Theresa Earletta McCoy

The Washington University

School of Business and Public Management

(202)483-0168/(202)242-0089

************** " IF IT IS TO BE, IT'S UP TO ME! " ***************

[Guest guest]

brenda,

hi.. i understand your predicament...i too experience the

same thing... i have bruises and scars all over my body

and they're really unsightly....well i just don't think

about them more often...

i have hives eversince i was 5 months old and now i'm 21

they are still here if not even worser, i've tried alot of

antihistamine but they are not consistent... i just pray to

the lord that i will be healed or just let my hives appear

less frequent...i'm really hoping for the best because..

you know i'm graduating and about to seek a job... i'm

afraid that my condition will hinder me from taking agood

job....

just hope for the best and i'll pray that we will all

find the solution to our problems..

thanks...have anice day and GOD bless!

__________________________________________________

[Guest guest]

Theresa and

I live in NC and I went to see an allergist in Va. back in March of this

year. I have been breaking out since Oct. 8, 1999. I was overexposed to a

pesticide at work. I started having some bits and pieces of allergic

reactions at work which I had no idea it was going to lead to massive hives

and swelling. The worst thing is even with me being on all these meds., if I

come in contact with certain farm chemicals and now even perfumes and most

scented things tear me up. I can't be around Clorox, tylex, etc., etc. The

Dr. in Va. mentioned Dr. Kaplan in SC and said that if this Dr. could not

find your problem then no one could. But, I am going to try another route

first. I have been talking with another list called the

(CHEMICAL-ILLNET@... (Chemical-Illnet). This is a group of

people who have been injured by pesticides, chemicals, etc. I have an apt.

with Dr. Leiberman in ton, SC on 10-25-00. He has a detox

program that I may be eligible for. My allergist here in NC does not want me

to go. This has all happened to me from my place of employment and I am

fighting a big battle. I just hope he can give me some proof. The forms I

have had to fill out have been unbelievable! I know how you feel, believe

ME!! In addition to the hives and angio., I have sever headaches, muscle and

bone pain, dizzy and fainting spells and I also stay so sleepy and fatigued

it is not funny. I am working towards SSD but I know it is going to take a

while. I have done a lot of research on MCS (multiple chemical sensitivity)

which I really fall into this category. I have never seen such a thing, but

I would not wish this on my worst enemy. If you want to check out his web

site, it is (coem.com). This stands for the Center for Occupational and

Enviromental Medicine. If I don't get any results from Dr. Leiberman then I

will probably try to see if I can get in to see Dr. Kaplan. Best of luck, I

my Prayers are with you!!

Mandy in NC

[Guest guest]

HI i have been seeing Dr Kaplin for over 6 months and yesterday i had

the worst day of my live with the stupid Hives. Im still on the prednisone

and on alot of other meds too and still having all kinds of trouble. Im not

saying anything bad about Dr Kaplin but im still not well and im looking for

another Dr. I live in Columbia and i travel to Charlston about a hour and a

half away and it is getting old because it is the same old dance every time i

go. He is on vacation and the nurses sure did not help me out yesterday they

just said up your pred. thats all they ever say and that stuff is going to

kill me if i dont get off of it. I have gained so much weight and my bones

feel real weak amung all the other things. Well today is my birthday and im

going have lunch with my girlfriends and try to have a better day than

yesterday. Let me know what you decide about Dr Kaplin and was wondering

where you lived? Have a good day Therese in SC

[Guest guest]

Hi

Just a comment on yours about " scratching brings wonderful relief " . I find

it does bring wonderful, blissful relief but only for a very few minutes at

most, and then the itching and burning comes back ten times worse than

before. I have learned the hard way that scratching doesn't help, it only

makes it worse, but I do give in to it sometimes just for those few minutes

of joy, but I know I will pay the price. That's when I get the Chinese

cream out, or get up and DO something.

Re the " healing " water, etc - it's good to be positive and open, I guess,

and not give up hope, but I haven't got the faith that some of you have,

which prompts you to try these things. I'm WAY too cynical for that, I'm

afraid, but I hope it works for Therese. Best wishes to all, Carol

Re: More disapointment...

> theresa

> i sure hope the water works!!!! How I can relate

> i went to a Buddhist healing ceremony for skin problems last year--yes I

am

> willing to try anything........it did not work

> i have had hives every day for a solid 2 1/2 years--it is so dishernting

> pred did nothing for me==did not stop the hives at all--nothing

> and it helps os many..............and heaven knows i have been tested and

re

> tested for everything and taken mega amounts of meds --all sorts

> to no avail

> what can i say--my body is awful-my arms are ravaged-I have welts, bruises

> and i am ashamed ot say huge scabs where ei have sctracted so much--the

itch

> is so unbearable and scratching brings wonderful relief--i am embarrassed

by

> my skin--my back looks horrid--well NOW that I am thinking about it-my

entire

> skin does-except i have been so LUCKY in that my face is not affected--i

do

> have angioderms of the eyes but no hive son face

> werid h

> uh

> well thanks for listening

> i understand what yu say and how you feel

> brenda

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> <mailto:urticaria-unsubscribeegroups>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

[Guest guest]

Hi Patti

I have not heard of a connection with chronic urticaria and cataracts,

although I've had iritis, which is another auto-immune problem affecting the

eyes. I had repeated bouts in both eyes for about two years and after lots

of treatment with various drops (and once a steroid injection) it cleared

up, so far, anyway. I hope your eyesight will improve dramatically after

the cataract operation - most people find it does. Lots of luck, and best

wishes, Carol

More disapointment...

> Hello from Pearland, Texas. My reason for writing is...I have hives.

> Sometimes I have big ones and sometimes I have little ones. As my

personal

> input, I do believe it must be caused by some connection to hormones, etc.

I

> also believe it can and often is an auto immune disease. I have taken

most

> of all the previous mentioned meds, because one thing I have learned is

that

> what is good for a goose is not always good for the gander.

>

> My caution to all of you who take or have taken prednisone is this: I

have

> been having ongoing sight lose since last summer. I have used so many eye

> treatment stuff (mast cell stabilizer, etc., stuff). I learned yesterday

> that I have a cataracts that are the type caused by urticaria. Shortened

> it's called PTC but can't recall the real words and besides, I'm upstairs

at

> the computer and it takes too much energy to go downstairs to look it up.

> Anyhoo...just wondering if any of yall know about this cataract connection

to

> urticaria. (I will have the have surgery for this, but not sure when...at

> least six months or so.)

>

> Also...does anyone know of a genetic connection with mast cells which

control

> both histamines and heparin? I am interested in any research.

>

> I often am flippant in my responses and such but mean no such disregard

for

> this type of ailment and am always looking into a way to feel better.

> Also...one little hint for newbies: Write down all the meds, all the

things

> you do or take, all the reactions of the doctors, all the foods, all the

> times, etc., because when I got this stuff 12 or so years ago, I can

> guarantee that this was not worth my time to make all these notes

> because...Good grief, I only had hives. Little do we know.. But it will

one

> day make your life easier if you can hand a doctor all the literature you

> have collected and all the other stuff they have done to you.

>

> Realistic life is so very important. My latest physician (located in the

> hubbub of the Houston Medical Center-well known and all) was older than I

had

> expected and was at first somewhat frustrated because I just knew I needed

a

> real go-getter, etc., to find my cure. One of the first things I did say

to

> him was that I was not really there to change medicines, to retry any

methods

> I've already deemed unnecessary, that I only wanted a doctor that will

really

> listen to me and slowly try to get to the core. He was really great and I

> think relieved when he said that what he wants to do is chip away at all

the

> outside and obvious things and then he said that even that may not be an

> answer for me. What did I hear? A doctor saying he agrees that just not

> enough is known about the mast cells and their implication on the human

body.

>

>

> Just wanted to share...I need all of you and depend on what you may

suggest.

> So, thank you for listening to my smart mouth and my depression of dealing

> with my brothers death, and my long ramblings...uh oh, I doing that again.

>

> Thank you all for just being there. Patti I

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> <mailto:urticaria-unsubscribeegroups>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

[Guest guest]

Hi Therese and

My allergist gave me Dr. Kaplan's name as the head of the National Urticaria

Research and Treatment Center and he would really like me to travel to SC for

a second opinion from Ohio. Quite a while ago, I posted all of this

information as well as the addresses and phone numbers on this site. Several

hivers called only to be told that there are no current studies being done,

but they will take appointments. Just last week, when I went back to the

allergist, he showed me the literature that Dr. Kaplan sent. Strange that we

couldn't get information when we called. My Dr. said in a very nice way that

I will probably have to live with it. He said not to let my hives rule my

life. I thought his advice was well meaning.....at least he didn't tell me

they would go away in another couple of months!!! At least I am doing pretty

well right now, just a few hives here and there, while I am still taking

Allegra/Zantac in the AM and Zyrtec/Zantac in the PM. I just wonder what is

the real story with Dr. Kaplan. In the literature my Dr. showed me, he said

the focus of treatment is patient education.....HA HA.......has he ever

visited this site?? Or talked to the really knowledgeable folks here like

Myra??? Anyway, I guess I'll stick to my Dr in Warren Ohio and forget the

trip to SC. Any opinions out there?? Hope everyone is well today.

Cara J. in Ohio

[Guest guest]

Dear Cara:

I am new to the list - but unfortunately not new to hives. I have had

outbreaks since I was in my early 20's, I am now 58. They are accompanied

with angioedema. I have hashimoto's throiditis, pernicious anemia & mitral

valve prolapse w/reg. All of which are autoimmune diseases - which cause

urticaria. Now after another severe outbreak three weeks ago - they are

testing for another autoimmune disease - a deadly form of vasculitis. I

have researched each of these diseases and I feel I am as knowledgeable as

my doctor. He would never admit it - just kidding. I am steroid shots

weekly right now - hopefully todays shot will be the last until the next

episode. I am so tired now, I think mentally I am giving up. I keep

giving myself pep talks and hoping I can get back to some form of normal....

I hope I learn more now that I have found this site. Looking forward to

being enlightened. Joyce

Re: More disapointment...

Hi Therese and

My allergist gave me Dr. Kaplan's name as the head of the National Urticaria

Research and Treatment Center and he would really like me to travel to SC

for

a second opinion from Ohio. Quite a while ago, I posted all of this

information as well as the addresses and phone numbers on this site.

Several

hivers called only to be told that there are no current studies being done,

but they will take appointments. Just last week, when I went back to the

allergist, he showed me the literature that Dr. Kaplan sent. Strange that

we

couldn't get information when we called. My Dr. said in a very nice way

that

I will probably have to live with it. He said not to let my hives rule my

life. I thought his advice was well meaning.....at least he didn't tell me

they would go away in another couple of months!!! At least I am doing

pretty

well right now, just a few hives here and there, while I am still taking

Allegra/Zantac in the AM and Zyrtec/Zantac in the PM. I just wonder what

is

the real story with Dr. Kaplan. In the literature my Dr. showed me, he said

the focus of treatment is patient education.....HA HA.......has he ever

visited this site?? Or talked to the really knowledgeable folks here like

Myra??? Anyway, I guess I'll stick to my Dr in Warren Ohio and forget the

trip to SC. Any opinions out there?? Hope everyone is well today.

Cara J. in Ohio

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

If you do wish to unsubscribe then you can click on the following link:

<mailto:urticaria-unsubscribeegroups>

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria.

Any posting that is off the main topic of Chronic Urticaria, we post with a

prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

[Guest guest]

FiveAlive76@... wrote:

>

> Chris

>

> How do you become eligible for Dr Kaplans study. I would be willing to go to

> SC if necessary to get rid of these hives.

I believe, unless a researcher advertises for research patients, the

means to being accepted is by referral from another doctor. That may be

why the folks who contacted Dr. Kaplan's office directly did not get

invited in. It's also possible he just didn't need anybody at that

particular moment, but has an ongoing need to periodically recruit new

research patients. When we asked one of the two docs in the practice we

use about specifics of Dr. Kaplan's research, he told us that the

research and meds probably benefit Dr. Kaplan's work more than the

patients; kind of a more long term approach rather than a treatment for

right now. He also said Dr. Kaplan's patients often end up taking some

drugs that can be quite potent, with potential side effects we don't

want to get into. will have to get much more consistently worse

before we would subject him to that. But please, be aware that I do not

know much at all about Dr. Kaplan's research nor the meds he studies. I

may have completely wrong info. It is an avenue we would rather not

pursue because of the distance, unless we feel will gain sufficient

benefit.

Chris

[Guest guest]

Dear Kara and all who is interested in Dr Kaplan. I have been seeing him for

over six months and i still have hives everday. Im not telling anyone that he

is not a good Dr but he has not found a cure for me but everyone is

different. Im looking for a new Dr here in columbia that can proberly do the

same thing he is doing for me which is just trying to control all the hives

with meds anyone can do that. I seem to think that im allergic to something

and he swares that im not. Just thought i would share that with anyone that

is thinking about coming to see him. Therese in SC