RE: what's it gonna take?

[Guest guest]

Ty!

I never saw you write so much...lol...but, I am with you totally. What you wrote, I've thought many times, believe me. With all the 'wonders' of modern science, why can't they devote a little more research to our problem(s) and find some answers?

I know there are worse problems (and I myself have had a life-threatening illness, cancer), but I really don't want to live the rest of my life like this. I never know how I will look/feel when I wake up in the morning. I've had to go to important meetings looking like a monster. Aside from our group, how many people have to live their lives this way?

The question is, can we get our voices heard and how?

I'm with you,

Tami

[Guest guest]

If you mean, Sarna, I tried it and it was awful. Didn't help a bit!

Tami

[Guest guest]

Dan, what do you think stopped your hives. What did they do in the emergency

room that made this happen. I remember you were in bad shape and your wife

was scared and crying. We prayed all weekend for you. Do you think it was

medicine or prayer?

We too need help to make them go away. Please share the answer to your

leaving with us. Love Carolyn

[Guest guest]

One reason I am out there telling my story about my horrible ordeal with a root canal. Telling people what it did to me health wise and the difference it made getting the tooth out. Doctors and dentists are not going to tell you amalgam fillings are 50% mercury, they are not going to tell you root canals can be dangerous. After what I went through, in my opinion, dental work is behind alot of mysterious diseases.

[Guest guest]

has anyone tried sarina, an anti itch lotion?

what's it gonna take?

So we have over 600 people on this mailing list, all that have or know someone that has urticaria. I notice a lot of people here have had problems with doctors that have no clue what we have, what to do, or simply, don't care. My doctor has a wall full of awards and certificates, ( Mayo clinic, Special Forces, etc.) so you would think he knew what he was talking about, yet my mom diagnosed me, before he even had a clue. I also notice that if you search the word "urticaria" on MSN's search engine, you come up with 25,356 matches. Now we are all screaming for support and help, but are we screaming loud enough? I have found some comfort in Doxepin, but it knocks me out. Then other people have to take all kinds of combinations of meds just to get a little bit of a handle on things. Somewhere in my young, impressionable,maybe naive mind, I am convinced that there has got to be a way to produce some type of drug (one, not 3 or 4) that can control this with minimum side effects.Some of you have had this for many years longer than I have, and I can't imagine that. I don't want that. I think that maybe people, including doctors, don't take it seriously because, "it just itches" so they say. So most people I have dealt with here have the mentality that it's not deadly or contagious and it just itches so what's the big deal.Is there any way that our very large and international group (not to mention the other support groups out there) can stand up and say that this is a big deal and we need help.I'm 21 years old and I don't want to grow older with my hands swelling so bad I can't bend my hand or my butt cheeks swelling together so I can't go to the bathroom (yes, it happened).I would feel 90% better if I knew that, somewhere out there, someone was looking for a better means of control or, God willing, a cure. What, if anything, can be done to fascilitate this? Let's brainstorm.Can you tell I'm a little nit aggravated? :)Namaste,Ty~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribe ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~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. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.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 Ty, I loved your venting ) As a fellow venter (hee hee) I know where you are coming from. Indeed something needs to be done. I believe the chain of events that will lead to more help for cu'rs starts right here. I believe we help every time one of us walks into our doctors office armed with medical journal articles and suggestions and the willing doctors read them and become more knowledgable. I also believe some doctors lurk around the site to find out what is really going on ) I also believe there are attempts at better medications. Zyrtec is fairly new and there is Clairinex and others that have yet to hit the market. The problem is that it takes so long and there are so many hurdles before a drug can hit the market. I think we all just have to keep spreading the word, keep educating those that are willing and to keep asking for more from the medical profession. I see this even more with people with Masto. They may be suffering from a rare disease but they have a strong voice. Always concentrating on awareness and research. And every bit of me prays every single day they find a cure before my girls get older and it could get worse for them. Hang in there Ty, I feel your frustration. Love, ~Alena's Mom

what's it gonna take?

So we have over 600 people on this mailing list, all that have or know someone that has urticaria. I notice a lot of people here have had problems with doctors that have no clue what we have, what to do, or simply, don't care. My doctor has a wall full of awards and certificates, ( Mayo clinic, Special Forces, etc.) so you would think he knew what he was talking about, yet my mom diagnosed me, before he even had a clue. I also notice that if you search the word "urticaria" on MSN's search engine, you come up with 25,356 matches. Now we are all screaming for support and help, but are we screaming loud enough? I have found some comfort in Doxepin, but it knocks me out. Then other people have to take all kinds of combinations of meds just to get a little bit of a handle on things. Somewhere in my young, impressionable,maybe naive mind, I am convinced that there has got to be a way to produce some type of drug (one, not 3 or 4) that can control this with minimum si! de effects.Some of you have had this for many years longer than I have, and I can't imagine that. I don't want that. I think that maybe people, including doctors, don't take it seriously because, "it just itches" so they say. So most people I have dealt with here have the mentality that it's not deadly or contagious and it just itches so what's the big deal.Is there any way that our very large and international group (not to mention the other support groups out there) can stand up and say that this is a big deal and we need help.I'm 21 years old and I don't want to grow older with my hands swelling so bad I can't bend my hand or my butt cheeks swelling together so I can't go to the bathroom (yes, it happened).I would feel 90% better if I knew that, somewhere out there, someone was looking for a better means of control or, God willing, a cure. What, if anything, can be done to fascilitate this? Let's brainstorm.Can you tell I'm a little nit aggra! vated? :)Namaste,Ty~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribe ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~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. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.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]

Ty,

I'm 43 years old,and I know what your going through as a young man with urticaria.When I was in high school I had to get into a fight with a guy,for no reason either.At my senior prom,to justify my face,and lips swelling up....I couldn't tell my date what was happening,so I thought if I got into a fight,and got my ass kicked,it would be the only way out....well,I got my nose broken too...fun night...huh?It's been almost a month now,and no hives...not one.They went away,just like they did 25 years ago...Ty,don't give up hope,don't ever give up...be positve....I can remember as a kid,that I could wish them away ,when I broke out(no meds back then)...and as an adult,with a more positive attitude,and a strong will(I quit smoking..cold turkey 5 years ago)I could do it also,but the bad breakouts,that put me in hospital scared the hell out of me...after I got out I told myself and my wife and daughter that I would never go through that again...I prayed to God to give me the strength and power to control the demon...and guess what...it's been a month now,and I know they are gone..I can feel it.The bottom line Ty....never give up,be strong...the Doctors don't really don't know what to do...it's up to you...you have the power of control.

Thanks,

Dan Armstrong

Badawg's Desktop Themes

http://www.badawg.com/

what's it gonna take?

[Guest guest]

Hi Ty,

Kind of figured this one out! Why should the drug companies put monies into developing a new drug for CU, when they have a rapt audience in the present ones that are already on the market. In other words we use the same meds developed for those with allergies, and they know it. If they develope a new med we'll be leaving Zyrtec etc. behind, they have our bucks in the already developed stuff. Someone had a good idea to be in touch with Oprah. Maybe Rosie would do an article in her new magazine. Can

you imagine how many folk suffer from this night-mare? 600 of us here alone, and all the poor souls who don't know how to reach out to us, or haven't the means to own a computer. People suffering alone, and in silence. The isolation dealing with this without

support has got to be unbearable. As many of us stated, we felt like freaks till we found each-other.So many bright, informed individuals here, we've got to get our thinking caps on as to how we can get this subject out to the media.Is anyone friendly with

a journalist with a major newspaper, or a national magazine? Let's do it! You got my hackle's up Ty! How's the sinus infection? Just

e-mailed mom a few minutes ago. She's the best! I feel like I've known her a thousand years. Be well. Hugging you in my heart.

Ging

[Gingeos@...] what's it gonna take?

So we have over 600 people on this mailing list, all that have or know someone that has urticaria. I notice a lot of people here have had problems with doctors that have no clue what we have, what to do, or simply, don't care. My doctor has a wall full of awards and certificates, ( Mayo clinic, Special Forces, etc.) so you would think he knew what he was talking about, yet my mom diagnosed me, before he even had a clue. I also notice that if you search the word "urticaria" on MSN's search engine, you come up with 25,356 matches. Now we are all screaming for support and help, but are we screaming loud enough? I have found some comfort in Doxepin, but it knocks me out. Then other people have to take all kinds of combinations of meds just to get a little bit of a handle on things. Somewhere in my young, impressionable,maybe naive mind, I am convinced that there has got to be a way to produce some type of drug (one, not 3 or 4) that can control this with minimum side effects.Some of you have had this for many years longer than I have, and I can't imagine that. I don't want that. I think that maybe people, including doctors, don't take it seriously because, "it just itches" so they say. So most people I have dealt with here have the mentality that it's not deadly or contagious and it just itches so what's the big deal.Is there any way that our very large and international group (not to mention the other support groups out there) can stand up and say that this is a big deal and we need help.I'm 21 years old and I don't want to grow older with my hands swelling so bad I can't bend my hand or my butt cheeks swelling together so I can't go to the bathroom (yes, it happened).I would feel 90% better if I knew that, somewhere out there, someone was looking for a better means of control or, God willing, a cure. What, if anything, can be done to fascilitate this? Let's brainstorm.Can you tell I'm a little nit aggravated? :)Namaste,Ty~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribe ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~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. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.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]

I am with you on this. It seems to me whenever drug companies have

come up with a new product thats supposed to be specially good for

CU, it turns out to be the same old antihistamine product they use

for allergies just 50% stronger - don't they realise most of us are

taking more than that amount daily anyway!

Myself I'd settle for a really effective strong antihisthamine that

controls H1 and 2 without drowsiness, headaches or nausea - that

would be a start - miracles may take a little longer.

-- In urticaria@y..., " Ty Holifield " wrote:

> So we have over 600 people on this mailing list, all that have or

know someone that has urticaria. I notice a lot of people here have

had problems with doctors that have no clue what we have, what to do,

or simply, don't care. My doctor has a wall full of awards and

certificates, ( Mayo clinic, Special Forces, etc.) so you would think

he knew what he was talking about, yet my mom diagnosed me, before he

even had a clue. I also notice that if you search the

word " urticaria " on MSN's search engine, you come up with 25,356

matches.

> Now we are all screaming for support and help, but are we screaming

loud enough? I have found some comfort in Doxepin, but it knocks me

out. Then other people have to take all kinds of combinations of meds

just to get a little bit of a handle on things. Somewhere in my

young, impressionable,maybe naive mind, I am convinced that there has

got to be a way to produce some type of drug (one, not 3 or 4) that

can control this with minimum side effects.

> Some of you have had this for many years longer than I have, and I

can't imagine that. I don't want that. I think that maybe people,

including doctors, don't take it seriously because, " it just itches "

so they say. So most people I have dealt with here have the mentality

that it's not deadly or contagious and it just itches so what's the

big deal.

> Is there any way that our very large and international group (not

to mention the other support groups out there) can stand up and say

that this is a big deal and we need help.

> I'm 21 years old and I don't want to grow older with my hands

swelling so bad I can't bend my hand or my butt cheeks swelling

together so I can't go to the bathroom (yes, it happened).

> I would feel 90% better if I knew that, somewhere out there,

someone was looking for a better means of control or, God willing, a

cure. What, if anything, can be done to fascilitate this? Let's

brainstorm.

> Can you tell I'm a little nit aggravated?

>

> Namaste,

> Ty

[Guest guest]

---

If you mean Sarna? yes, and it works well. You can smell it from 20

paces however.....

Phyllis in Toronto

In urticaria@y..., " malamud " wrote:

> has anyone tried sarina, an anti itch lotion?

> what's it gonna take?

>

>

> So we have over 600 people on this mailing list, all that have or

know someone that has urticaria. I notice a lot of people here have

had problems with doctors that have no clue what we have, what to do,

or simply, don't care. My doctor has a wall full of awards and

certificates, ( Mayo clinic, Special Forces, etc.) so you would think

he knew what he was talking about, yet my mom diagnosed me, before he

even had a clue. I also notice that if you search the

word " urticaria " on MSN's search engine, you come up with 25,356

matches.

> Now we are all screaming for support and help, but are we

screaming loud enough? I have found some comfort in Doxepin, but it

knocks me out. Then other people have to take all kinds of

combinations of meds just to get a little bit of a handle on things.

Somewhere in my young, impressionable,maybe naive mind, I am

convinced that there has got to be a way to produce some type of drug

(one, not 3 or 4) that can control this with minimum side effects.

> Some of you have had this for many years longer than I have, and

I can't imagine that. I don't want that. I think that maybe people,

including doctors, don't take it seriously because, " it just itches "

so they say. So most people I have dealt with here have the mentality

that it's not deadly or contagious and it just itches so what's the

big deal.

> Is there any way that our very large and international group (not

to mention the other support groups out there) can stand up and say

that this is a big deal and we need help.

> I'm 21 years old and I don't want to grow older with my hands

swelling so bad I can't bend my hand or my butt cheeks swelling

together so I can't go to the bathroom (yes, it happened).

> I would feel 90% better if I knew that, somewhere out there,

someone was looking for a better means of control or, God willing, a

cure. What, if anything, can be done to fascilitate this? Let's

brainstorm.

> Can you tell I'm a little nit aggravated?

>

> Namaste,

> Ty

>

>