New to the Group

[Guest guest]

Hi Alison -

I just wanted to say that I am sorry that you have

been suffering for so long. It's hard enough to deal

with the urticaria but then on top of it to not be

able

to participate in the activities you love is the

worst. I am an animal lover too (I have 4 cats and a

dog) but I am allergic to them. It's not really

severe (yet) but there is no way that I would ever

give them up. Some of them make me break out in hives

when their fur touches my skin and sometimes I get

itchy eyes. I can't imagine my life without my

animals and so I feel for you.

This is such a cruel disorder in so many ways. It is

annoying but potentially life-threatening. Doctors

and other people don't really take urticaria

seriously. There's no " glamour " in it like with some

other disorders - no celebrity spokespeople, little

research being done, no publicity. People think

urticaria is " comical " and no big deal. I happen to

be allergic to cold - I break out in a red blotchy

rash when my skin gets cold and when I say that to

people, they look at me like I have 3 heads. In a way

it is kind of comical - I am allergic to temperature!

Now how on earth do you control that? Fortunately I

have discovered that my condition could be linked to

hormonal changes because it seems to flare up at

certain times of the month. I don't know exactly what

to do with this information buut at least I know when

I can expect problems.

Have you been tested for any other allergies. It

concerns me that you are having increasing reactions

to other substances. I think it would be very useful

to know what you could potentially react to. They

would test your blood (RAST test) as opposed to skin

testing since that would likely give false positives.

Please keep in touch and let us know how you are

doing. This is a wonderful group and you will find a

lot of support here.

-Sheryl, staying warm in NJ

--- Alison Archambault birdvet@...> wrote:

> Hi Everyone:

>

> I just joined your group a couple days ago and

> after reading several

> hundreds of posts, thought I'd introduce myself. I

> have had Chronic

> Urticaria for almost twenty years. I never had

> allergies as a kid but

> began to get them in my early twenties when I moved

> to the ette

> Valley in Oregon - the allergy center of the world!

> I developed seasonal

> rhinitis, eye irritation, but nothing that

> bothersome. My major trigger

> was when I began working with large numbers of

> parrots.

> I was a nurse with a background in microbiology.

> I was trying to get

> into veterinary school and had always had a big

> interest in parrots. I

> offered my time to a parrot importation center to

> set up a

> laboratory/hospital to care for parrots that were

> ill. Those were the bad

> old days of wild parrot capture for the pet trade

> before importation into

> the US ended and before veterinarians knew much

> about parrot diseases. It

> was a terrible time for wild parrot populations, as

> if capture wasn't bad

> enough, housing conditions for the captive parrots

> could be deplorable.

> Since I was working under the same conditions, I was

> exposed to massive

> amounts of parrot dander, grain dust, molds, mouse

> droppings plus everyone

> that worked there (but me!) smoked. After some

> months, I began to notice a

> heaviness in my chest. I developed asthma. After

> working at the

> importation center for almost 2 years, I went to

> veterinary school. Even

> though I was now away from the parrots, I found that

> being around any type

> of dust brought on my symptoms of asthma.

> Now you'd think a person would not pursue a career

> with something that

> made them ill, right? But I guess it's hard to deny

> the things we love.

> After vet school, I specialized in parrots. At the

> beginning of my

> career, I worked with pet birds (individuals) but

> after a time I worked

> only on parrot farms breeding threatened and

> endangered species. So I

> continued to be exposed to high levels of allergenic

> stuff.

> Early on in my career, I developed urticaria. I

> suddenly found myself

> itching and developing red welts all over. I

> remember I had a little

> parakeet and as he walked up my arm his little foot

> prints appearing on my

> skin were my first introduction to dermatographism.

> Friends used to

> delight in writing their names on my skin. I

> recall people asking me

> " What happened to you? " then they would point out a

> huge red welt across my

> face (or neck or wherever). Trying on clothes became

> a nightmare as I

> always got covered with welts. I did see a doctor

> at the beginning and the

> only interesting finding was that my IgE levels were

> extremely elevated.

> I think I have been on every antihistamine there

> is. Seldane used to

> actually work pretty well for me. When it went off

> the market, I would

> buy it on my travels overseas and bring home as much

> as I could. I am now

> on Allegra which sort of works if I take at least

> twice the recommended

> dose. I always feel somewhat itchy no matter what.

> I sometimes am on

> prednisone when I can't control the symptoms.

> I had to give up my practice three years ago as I

> became so ill from

> being around the birds. It was very hard to lose

> that life that I loved

> even though it was killiing me. At the end of my

> career, I was extremely

> in denial because I would see clients then have to

> lie on the floor

> breathing oxygen so my lungs could function - then I

> would go ahead and see

> more clients {{grin}}. I just couldn't quit!

> Now, even not being around the birds, my urticaria

> is a bad as ever. The

> other aspects of my allergies keep accelerating. I

> developed Hashimoto's

> Thyroiditis. Breathing in any type of particulate

> matter or being around

> smoke gives me asthma. I have developed allergies

> to nuts. It initially

> manifested as the palms and soles of my feet

> itching, then body itching,

> then asthma. For the first time, a few nights ago,

> I developed angioedema

> of my tongue and throat when I ate some plain

> chocolate (afterwards I read

> the package: " the product may have been in contact

> with almonds " ). That

> was fun. I sure hope I don't get that one again.

> The urticaria is maddening. I would melt down if

> not for antihistamines.

> I don't think I could live. Years ago, I wondered if

> there was anything I

> might do medically to understand why my body was

> reacting this way. I was

> told that it was idiopathic and nothing to be done

> but live with it. So I

> have not pursued any diagnostics and lived with it.

> Then, while doing some research online, I found

> this group. I have never

> met any one else with urticaria - never! So it is a

> revelation to me to

> read all your posts. I am very interested to learn

> anything new or hear

> your own sagas and stories. I am open to advice,

> ideas, jokes, anything.

> So thanks for letting me join the group and I'll

> keep reading. Take care.

>

>

> Alison

>

>

>

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi Alison -

I just wanted to say that I am sorry that you have

been suffering for so long. It's hard enough to deal

with the urticaria but then on top of it to not be

able

to participate in the activities you love is the

worst. I am an animal lover too (I have 4 cats and a

dog) but I am allergic to them. It's not really

severe (yet) but there is no way that I would ever

give them up. Some of them make me break out in hives

when their fur touches my skin and sometimes I get

itchy eyes. I can't imagine my life without my

animals and so I feel for you.

This is such a cruel disorder in so many ways. It is

annoying but potentially life-threatening. Doctors

and other people don't really take urticaria

seriously. There's no " glamour " in it like with some

other disorders - no celebrity spokespeople, little

research being done, no publicity. People think

urticaria is " comical " and no big deal. I happen to

be allergic to cold - I break out in a red blotchy

rash when my skin gets cold and when I say that to

people, they look at me like I have 3 heads. In a way

it is kind of comical - I am allergic to temperature!

Now how on earth do you control that? Fortunately I

have discovered that my condition could be linked to

hormonal changes because it seems to flare up at

certain times of the month. I don't know exactly what

to do with this information buut at least I know when

I can expect problems.

Have you been tested for any other allergies. It

concerns me that you are having increasing reactions

to other substances. I think it would be very useful

to know what you could potentially react to. They

would test your blood (RAST test) as opposed to skin

testing since that would likely give false positives.

Please keep in touch and let us know how you are

doing. This is a wonderful group and you will find a

lot of support here.

-Sheryl, staying warm in NJ

--- Alison Archambault birdvet@...> wrote:

> Hi Everyone:

>

> I just joined your group a couple days ago and

> after reading several

> hundreds of posts, thought I'd introduce myself. I

> have had Chronic

> Urticaria for almost twenty years. I never had

> allergies as a kid but

> began to get them in my early twenties when I moved

> to the ette

> Valley in Oregon - the allergy center of the world!

> I developed seasonal

> rhinitis, eye irritation, but nothing that

> bothersome. My major trigger

> was when I began working with large numbers of

> parrots.

> I was a nurse with a background in microbiology.

> I was trying to get

> into veterinary school and had always had a big

> interest in parrots. I

> offered my time to a parrot importation center to

> set up a

> laboratory/hospital to care for parrots that were

> ill. Those were the bad

> old days of wild parrot capture for the pet trade

> before importation into

> the US ended and before veterinarians knew much

> about parrot diseases. It

> was a terrible time for wild parrot populations, as

> if capture wasn't bad

> enough, housing conditions for the captive parrots

> could be deplorable.

> Since I was working under the same conditions, I was

> exposed to massive

> amounts of parrot dander, grain dust, molds, mouse

> droppings plus everyone

> that worked there (but me!) smoked. After some

> months, I began to notice a

> heaviness in my chest. I developed asthma. After

> working at the

> importation center for almost 2 years, I went to

> veterinary school. Even

> though I was now away from the parrots, I found that

> being around any type

> of dust brought on my symptoms of asthma.

> Now you'd think a person would not pursue a career

> with something that

> made them ill, right? But I guess it's hard to deny

> the things we love.

> After vet school, I specialized in parrots. At the

> beginning of my

> career, I worked with pet birds (individuals) but

> after a time I worked

> only on parrot farms breeding threatened and

> endangered species. So I

> continued to be exposed to high levels of allergenic

> stuff.

> Early on in my career, I developed urticaria. I

> suddenly found myself

> itching and developing red welts all over. I

> remember I had a little

> parakeet and as he walked up my arm his little foot

> prints appearing on my

> skin were my first introduction to dermatographism.

> Friends used to

> delight in writing their names on my skin. I

> recall people asking me

> " What happened to you? " then they would point out a

> huge red welt across my

> face (or neck or wherever). Trying on clothes became

> a nightmare as I

> always got covered with welts. I did see a doctor

> at the beginning and the

> only interesting finding was that my IgE levels were

> extremely elevated.

> I think I have been on every antihistamine there

> is. Seldane used to

> actually work pretty well for me. When it went off

> the market, I would

> buy it on my travels overseas and bring home as much

> as I could. I am now

> on Allegra which sort of works if I take at least

> twice the recommended

> dose. I always feel somewhat itchy no matter what.

> I sometimes am on

> prednisone when I can't control the symptoms.

> I had to give up my practice three years ago as I

> became so ill from

> being around the birds. It was very hard to lose

> that life that I loved

> even though it was killiing me. At the end of my

> career, I was extremely

> in denial because I would see clients then have to

> lie on the floor

> breathing oxygen so my lungs could function - then I

> would go ahead and see

> more clients {{grin}}. I just couldn't quit!

> Now, even not being around the birds, my urticaria

> is a bad as ever. The

> other aspects of my allergies keep accelerating. I

> developed Hashimoto's

> Thyroiditis. Breathing in any type of particulate

> matter or being around

> smoke gives me asthma. I have developed allergies

> to nuts. It initially

> manifested as the palms and soles of my feet

> itching, then body itching,

> then asthma. For the first time, a few nights ago,

> I developed angioedema

> of my tongue and throat when I ate some plain

> chocolate (afterwards I read

> the package: " the product may have been in contact

> with almonds " ). That

> was fun. I sure hope I don't get that one again.

> The urticaria is maddening. I would melt down if

> not for antihistamines.

> I don't think I could live. Years ago, I wondered if

> there was anything I

> might do medically to understand why my body was

> reacting this way. I was

> told that it was idiopathic and nothing to be done

> but live with it. So I

> have not pursued any diagnostics and lived with it.

> Then, while doing some research online, I found

> this group. I have never

> met any one else with urticaria - never! So it is a

> revelation to me to

> read all your posts. I am very interested to learn

> anything new or hear

> your own sagas and stories. I am open to advice,

> ideas, jokes, anything.

> So thanks for letting me join the group and I'll

> keep reading. Take care.

>

>

> Alison

>

>

>

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

If they suspect cancer, be wary of contrast CT -- it can mean delay of RAI

for months or even a year because of the iodine in your system.

Before having any contrast, grill them on any absolute necessity! CT can be

done without it, although it may not be " as good " -- I don't know much about

this. Not all doctors are aware of this problem, or they say the iodine

clears faster than it actually does in various patients' experiences (as

seen by urine iodine testing later on).

Good luck to both of you!

bj

new to the group

> Hi all, I was diagnosed with follicular carcinoma in May '03, had a

> TT and neck dissection on June 9 and RAI on July 31. Things have

> been going fine until my identical twin sister had a enlarged lymph

> node show up on her neck the other day (the same way mine showed up,

> I was sick). Anyway, we are both afraid of what it could be, she is

> having a CT Scan done today. Given my history, her med. Dr is

> concerned. I never thought to ask my Dr what the chances were for

> her to develop thyroid cancer also. I guess I'm hoping someone might

> be able to offer some wisdom or know of anyone else in the

> situation. Thanks for any advice. Jade

>

>

>

> This e-mail support group is one of many free services of ThyCa: Thyroid

Cancer Survivors' Association, Inc. . If you do

not wish to belong to this group, you may UNSUBSCRIBE by

> sending a blank e-mail to:

> thyca-unsubscribe

>

>

>

[Guest guest]

--- Jade: While I don't know that much about treatment, I do know that using

iodine dye contrast on a CT is not a good thing, especially if she does have

Thyca and will need to Radiation ablation therapy. The dye can interfer with

the treatment and can remain n the body for many many months. You may

want to call her and discuss this before going further. I believe they can use

something else or do another test.

Elaine

In Thyca , " jadertater2000 " wrote:

> Hi all, I was diagnosed with follicular carcinoma in May '03, had a

> TT and neck dissection on June 9 and RAI on July 31. Things have

> been going fine until my identical twin sister had a enlarged lymph

> node show up on her neck the other day (the same way mine showed up,

> I was sick). Anyway, we are both afraid of what it could be, she is

> having a CT Scan done today. Given my history, her med. Dr is

> concerned. I never thought to ask my Dr what the chances were for

> her to develop thyroid cancer also. I guess I'm hoping someone might

> be able to offer some wisdom or know of anyone else in the

> situation. Thanks for any advice. Jade

[Guest guest]

Hi, Janet -

Welcome to the group.

I'm so sorry you're having to go through this again :-(

Four RAI treatments certainly puts you in an elite class, but you're not all

alone - we do have members who have had as many, and even more. Do you know

what dose you'll be getting? Will you be

following the LID?

As for hating hypo, well, I don't have much advice for you, just the hope that

this treatment will be the one that finally does the trick for you.

BTW - in addition to us here, you may also want to check out the advanced group,

where you may find more members who have had repeat treatments ....

http://groups.yahoo.com/group/adv-thyca/

best wishes -

NYC

jandjan40 wrote:

> Hi all! I am a new member to Thyca, although not a new thyroid

> cancer patient. I was diagnosed in April 2000 with pap carcinoma

> that had already spread to the right side of my neck. 4 surgeries

> later (the last was a complete right neck dissection 1 month ago), I

> decided to investigate Thyca again. I am about to have I 131 for the

> 4th time. Would love to hear from some of you that might have been

> in the same place. How many times do you have to have the I 131

> anyway????????????? By the way, HATE the hypo!!! Thanks Janet

[Guest guest]

Hi Mandy,

I joined this week too.

Good luck

> Hey all!

> I just joined this group today as motivation for keeping up my

> hopefully permanent new lifestyle. I started excercising and watching

> what I eat in August and so far I've lost 22 lbs. However, it seems

> to be the story of my life, I get so far and then the lbs start

> piling back on. Any tips and support are welcome. I have ALOT of

> weight to lose!

>

> Mandy

>

>

>

>

[Guest guest]

Welcome Mandy! Congrats on the 22 pounds!! I'm sure you've probably

heard this already, as I'm rather behind on posts, but a key to

keeping the weight off is taking it off slowly. Of course, it sucks

to feel like you're waiting forever to see the scale really move, but

not as much as it sucks to see all the weight you were glad to lose

come back, with friends! =+) The numbers I've heard recommended for

healthy weight loss are .5 to 2 pounds per week. Average, of course,

not like one week you lose 2.2 pounds, and drop dead. =+) Seems like

you're right in that range, so that's definitely a good sign. Also, a

great sign is how you said " my...new lifestyle " and not " this great

new diet I found in the Enquirer " . =+) That approach is much more

likely to succeed. =+) I'm sure you'll find tons of tips and support

here (maybe even more than you wanted, haha) My tip is: fiber.

=+)

Catalina

> Hey all!

> I just joined this group today as motivation for keeping up my

> hopefully permanent new lifestyle. I started excercising and

watching

> what I eat in August and so far I've lost 22 lbs. However, it seems

> to be the story of my life, I get so far and then the lbs start

> piling back on. Any tips and support are welcome. I have ALOT of

> weight to lose!

>

> Mandy

[Guest guest]

Hey -

Welcome to the group. I'm relatively new, but so far I'm finding this

group page to be really supportive and helpful.

I'd be happy to be your weight loss buddy, especially since I'm sort

of in the same boat as you. I don't have any kids yet, but I'm 24

years old and weigh about 300 lbs. It was more actually, but I've

managed to lose 22 lbs in the past couple of months and so it is

possible. It's all about making lifestyle changes, but sometimes

those can be just as hard.

Hang in there and you can do it!

Mandy

> I'm a 26 y/o stay at home mom with a 10 month old son. I'm still

> breastfeeding so I definately want to lose weight naturally. I've

> battled with my weight since I was about 15 y/o and about 5 years

ago

> I lost over 100 lbs with diet and exercise but after about a year I

> started putting it back on and now I'm even heavier than I was when

I

> gave birth to my son. I went to the Dr today and weighed 296 lbs. I

> couldn't believe it. I guess when I'm at home I think that if I

don't

> weigh myself then it will just go away. Obviously it hasn't!!! I'm

> only 5'4 " so I sould be closer to 130 than 300 lbs. My husband has

> never had a weight problem but I want to teach my son how to live a

> healthy life and I don't want him to struggle like me. I want to

have

> more children but to get pregnant now would just cause this problem

> to be more out of control. I would love to have an online buddy

> (buddies) to help with encouragment. I think if I had some

> accountability then it would help me get back on track.

>

>

[Guest guest]

Hi and welcome to the group. There are a lot of us just like

you here who are ready and willing to lend support and

encouragement. If you want accountability, you might notice how

some of us post our first weight/current weight/mini goal/final goal

weight under our signature and we try to post our weigh ins weekly

if possible. If that will help you, please feel free to jump in.

On a personal note, I'm 54, married almost 36 years, living in the

interior of Alaska, with two grown daughters and three

grandchildren. We have one daughter and grand-daughter living in

Alaska with the other daughter and two grandsons living in Texas.

Anyway, good luck on your new journey and count on us to be here to

help you in any way we can to make the trip.

Pat

224/201.25/199/160

> I'm a 26 y/o stay at home mom with a 10 month old son. I'm still

> breastfeeding so I definately want to lose weight naturally. I've

> battled with my weight since I was about 15 y/o and about 5 years

ago

> I lost over 100 lbs with diet and exercise but after about a year

I

> started putting it back on and now I'm even heavier than I was

when I

> gave birth to my son. I went to the Dr today and weighed 296 lbs.

I

> couldn't believe it. I guess when I'm at home I think that if I

don't

> weigh myself then it will just go away. Obviously it hasn't!!! I'm

> only 5'4 " so I sould be closer to 130 than 300 lbs. My husband has

> never had a weight problem but I want to teach my son how to live

a

> healthy life and I don't want him to struggle like me. I want to

have

> more children but to get pregnant now would just cause this

problem

> to be more out of control. I would love to have an online buddy

> (buddies) to help with encouragment. I think if I had some

> accountability then it would help me get back on track.

>

>

[Guest guest]

Welcome , this is a great group. Take care......Leanne

" (Wise) Poland " AngP77@...> wrote:I'm a 26 y/o stay at home mom with

a 10 month old son. I'm still

breastfeeding so I definately want to lose weight naturally. I've

battled with my weight since I was about 15 y/o and about 5 years ago

I lost over 100 lbs with diet and exercise but after about a year I

started putting it back on and now I'm even heavier than I was when I

gave birth to my son. I went to the Dr today and weighed 296 lbs. I

couldn't believe it. I guess when I'm at home I think that if I don't

weigh myself then it will just go away. Obviously it hasn't!!! I'm

only 5'4 " so I sould be closer to 130 than 300 lbs. My husband has

never had a weight problem but I want to teach my son how to live a

healthy life and I don't want him to struggle like me. I want to have

more children but to get pregnant now would just cause this problem

to be more out of control. I would love to have an online buddy

(buddies) to help with encouragment. I think if I had some

accountability then it would help me get back on track.

[Guest guest]

Hi, Mindy,

My name is and I am new to the group too. And I am also a

compulsive eater who's being treated for depression. Luckily I'm

doing fairly well on my SSRI, but I still resort to old, well-

ingrained eating habits when stressed. You are definitely not alone.

-- In weightlossbuddies2 , Mindy S

wrote:

> Hello all,

>

> My name is Mindy and I just joined. I am still a compulsive eater.

> Eat when I'm happy, eat when I'm angry, sad, depressed

> - which is a big issue for me because I'm batteling

> clinical depression.

[Guest guest]

welcome tracy, I too hope you have better luck this time around with the

diet. We are still waiting it to kick in for our daughter too, It's

inspiring though to hear it does truly work for some children.

--

-mom to stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal, diazapem and Diamox.

[Guest guest]

Hi ,

It took Jenna almost 3 months to be seizure free - so give it time.

What ratio is she on? Jenna is now on 4:1 however, when she was

seiz free she was on 3.75:1 - which is what we will prob go down to

again once we begin the weaning of the Zorontin!

Just hang in there - know that there are children who are seiz free

and it does work.

Good luck and I look forward to talking to you more.

Tracey

> welcome tracy, I too hope you have better luck this time around

with the

> diet. We are still waiting it to kick in for our daughter too,

It's

> inspiring though to hear it does truly work for some children.

>

> --

> -mom to stella, 5years old, started keto diet May 10th 2004

still

> waiting to be seizure free. Also on Lamictal, diazapem and Diamox.

[Guest guest]

, welcome! I hope the aktins diet works for your daughter!

Our daughter (4 y.o.) has been on the keto diet for 3 months

today and is seizure free, thank goodness! I'm sure you will find

the right diet combination for your daughter. Here is the link for

the atkins4seizures board:

http://health.groups.yahoo.com/group/atkins4seizures/

Also, I've noticed some recent posts referencing that some parents

don't use dairy on the keto diet--perhaps you could post a question

regarding how they manage that. Good luck!

ne

>

> Hello everyone!

> I am new to the group, not so new to the diet.

> My daughter, briana, is 7 years old and has had seizures daily

since

> she was 18 months old. She has been diagnosed with lennox-gastaut,

> pdd and developmental delay.

> We did the keto diet when she was 5. It did not give her full

> control, but helped GREATLY, in more ways than one.

> Unfortunetly, one day she started giving me hell about consuming

her

> cream, and just flat out refused to from that day on.

> Needless to say, we stopped the diet. She even knew when the cream

> was hiding in something

> So, after that, she got worse, she's gotten pretty bad lately, and

i

> decided to try phase 1 of the atkins diet.

> It started working. I saw improvement, but lately i have been

having

> trouble keeping her in ketosis.

> I joined this group to help me fine tune the atkins for briana. I

had

> her on 15 grams of carbs a day, then i read the john hopkins study

> and it stated the kids that achieved ketosis on the atkins were

only

> on 10 grams. So... theres one problem.

> Also, how can i get to the " atkins4seizures " board, I read about

in

> one of the recent posts?

> Looking foward to getting to know all of you,

>

[Guest guest]

THANK YOU!!!! The atkins board is great for me.

And i believe you are talkin about substituting the cream with the oil? I

cant imagine that.

For the parents that do the oil, how do u hide THAT?

[Guest guest]

THANK YOU!!!! The atkins board is great for me.

And i believe you are talkin about substituting the cream with the oil? I

cant imagine that.

For the parents that do the oil, how do u hide THAT?

[Guest guest]

THANK YOU!!!! The atkins board is great for me.

And i believe you are talkin about substituting the cream with the oil? I

cant imagine that.

For the parents that do the oil, how do u hide THAT?

[Guest guest]

Hi Roxanne

Welcome to the group.

I'm glad to hear that your numbers have improved. You should certainly be

happy about that. However, a proteinuria of 1700 mg/day is still fairly

high, relatively-speaking. I don't know what the medicine from Switzerland

is, but, you might still want to consider more treatment for that. This is

still a high enough proteinuria to be a significant risk factor for

progression to kidney failure eventually.

Pierre

New to the group

> Hi, my name is Roxanne and I am new to the group. I was diagnosed with

> Iga around November 2004 at the age of 25. At this time my blood pressure

> was about 180/120, my creatinine serum was 1.2, urine creatinine clearance

> was at 60, and I was leaking 3000 mg of protien. I was told by the doctor

> that I had a more aggressive case of Iga. Within the next several months

> my levels went up to 1.8 creatinine serum, 34 urine creatinine clearance,

> and leaking 4900 mg of protein. The doctor said that there is no cure for

> this disease and within 6 months to a year I probably would need to go on

> Dialysis or have a transplant. After hearing this, I went and visited

> many doctors and they all said the same thing, and the only thing that

> they can do is slow down the progression. Well, finally my Uncle who is a

> doctor (specializes Homeopathy and treating Diabetes) did some research

> and found some medicine that is used in Switzerland and he has been using

> it to treat my case, and now my levels are

> at 1.3 creatinine serum, 71 urine creatinine clearance, and 1700 mg

> leaking of protein in urine (this made me happy). So, that is my story.

> If anyone has some helpful advise, please let me know.

>

> Thanks for listening to me,

>

> Roxanne

>

>

>

> ---------------------------------

> Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

>

>

[Guest guest]

Hi Roxanne. A very warm welcome to you. It sounds like what you are doing

is working for you because your creatinine at 1.3 and a 71 clearance are

pretty good numbers!

Please do keep a close eye on your blood pressure though because high blood

pressure all on its own is a significant risk factor for progression of kidney

disease.

Welcome again.

In a message dated 10/14/2005 3:50:32 P.M. Pacific Daylight Time,

roxannearain@... writes:

Hi, my name is Roxanne and I am new to the group. I was diagnosed with Iga

around November 2004 at the age of 25. At this time my blood pressure was

about 180/120, my creatinine serum was 1.2, urine creatinine clearance was at

60, and I was leaking 3000 mg of protien. I was told by the doctor that I had

a more aggressive case of Iga. Within the next several months my levels

went up to 1.8 creatinine serum, 34 urine creatinine clearance, and leaking

4900

mg of protein. The doctor said that there is no cure for this disease and

within 6 months to a year I probably would need to go on Dialysis or have a

transplant. After hearing this, I went and visited many doctors and they all

said the same thing, and the only thing that they can do is slow down the

progression. Well, finally my Uncle who is a doctor (specializes Homeopathy

and

treating Diabetes) did some research and found some medicine that is used in

Switzerland and he has been using it to treat my case, and now my levels are

at 1.3 creatinine serum, 71 urine creatinine clearance, and 1700 mg leaking

of protein in urine (this made me happy). So, that is my story. If anyone

has some helpful advise, please let me know.

Thanks for listening to me,

Roxanne

[Guest guest]

Hi ,

Thank you for the warm welcome. As far as my blood pressure, I am taking

Losarton ( 25 mg) and lisinopril (10 mg) per day. My blood pressure is about

93/69.

What type of medications are you on?

Roxanne

W4JC@... wrote:

Hi Roxanne. A very warm welcome to you. It sounds like what you are doing

is working for you because your creatinine at 1.3 and a 71 clearance are

pretty good numbers!

Please do keep a close eye on your blood pressure though because high blood

pressure all on its own is a significant risk factor for progression of kidney

disease.

Welcome again.

In a message dated 10/14/2005 3:50:32 P.M. Pacific Daylight Time,

roxannearain@... writes:

Hi, my name is Roxanne and I am new to the group. I was diagnosed with Iga

around November 2004 at the age of 25. At this time my blood pressure was

about 180/120, my creatinine serum was 1.2, urine creatinine clearance was at

60, and I was leaking 3000 mg of protien. I was told by the doctor that I had

a more aggressive case of Iga. Within the next several months my levels

went up to 1.8 creatinine serum, 34 urine creatinine clearance, and leaking

4900

mg of protein. The doctor said that there is no cure for this disease and

within 6 months to a year I probably would need to go on Dialysis or have a

transplant. After hearing this, I went and visited many doctors and they all

said the same thing, and the only thing that they can do is slow down the

progression. Well, finally my Uncle who is a doctor (specializes Homeopathy

and

treating Diabetes) did some research and found some medicine that is used in

Switzerland and he has been using it to treat my case, and now my levels are

at 1.3 creatinine serum, 71 urine creatinine clearance, and 1700 mg leaking

of protein in urine (this made me happy). So, that is my story. If anyone

has some helpful advise, please let me know.

Thanks for listening to me,

Roxanne

[Guest guest]

Roxanne I believe I haven't had the pleasure of saying Hello and welcome to the

group! The work your uncle is doing is quite interesting and I hope that over

time he is able to work further towards a method that will throw this disease

into remission. I'm glad you've gotten your b/p under control also, that in

itself can do damage to your kidneys even if you didn't have kidney disease.

I'm sort of curious about the steroids...how young was too young for your nephs?

I was 34 when I started on pred myself so I was just curious. Also do you know

what they meant about steroids not making a difference? Steroids will do a lot

for high protein spills in most people. Since the high protein spill brings

with it some nasty side effects of it's own sometimes the side effects from the

drug are well worth the benefits you get from the reduced protein spill. I'm

wondering if they meant that steroids wouldn't make a difference in IgAN due to

the fact that they won't actually stop the disease from progressing? They may

help slow it a bit only due to the reduction of protein spill and the

anti-inflammatory properties of the drug.... I know the pred slowed my

progression down to a fast trot from a full on gallop.

Welcome again and I hope your uncle can get some backing to test his method on a

larger scale.

Amy G.

Re: New to the group

Hi Rita,

Thank you for welcome. The drug that I am taking is a vaccine that is

supposed to stop progress of Iga. My uncle who is a doctor, has been studying

my case and developed it for me (he is now treating 2 other Iga patients with

the vaccine as well) and my Neph. is over seen the treatment as far as

monitoring the my kidney functions. This vaccine for me has done well, but it

is in experimental stage. So, hopefully everything will continue to do well.

What drugs are you being treated with and what are your lab results like?

Roxanne

Ritanuch@... wrote:

Hi Roxanne,

Just wanted to extent my welcome to you. I hope that your numbers continue

to get better and better. What exactly is this drug that you are being

treated with? Hugs, Rita

[Guest guest]

Hi Roxanne,

I am near end stage so I am on many medications, but up until I was down to 30%

or so, I was just on a Statin and one BP med. Now I am on Lasix, Lopressor,

Plendil, Cozaar, Zocor, Nephrocaps, Activated Vitamin D and I can't think what

all else at the moment. Too many but it is only because I am down below 15%

function.

Re: New to the group

Hi ,

Thank you for the warm welcome. As far as my blood pressure, I am taking

Losarton ( 25 mg) and lisinopril (10 mg) per day. My blood pressure is about

93/69.

What type of medications are you on?

Roxanne

[Guest guest]

Dear ,

Thanks for your post. At 15% I certainly hope a new kidney comes quickly for

you. Thanks for being so supportive to all of us on the site.

Martha

________________________________

From: iga-nephropathy on behalf of W4JC@...

Sent: Mon 10/17/2005 9:33 PM

To: iga-nephropathy

Subject: Re: New to the group

Hi Roxanne,

I am near end stage so I am on many medications, but up until I was down to 30%

or so, I was just on a Statin and one BP med. Now I am on Lasix, Lopressor,

Plendil, Cozaar, Zocor, Nephrocaps, Activated Vitamin D and I can't think what

all else at the moment. Too many but it is only because I am down below 15%

function.

Re: New to the group

Hi ,

Thank you for the warm welcome. As far as my blood pressure, I am taking

Losarton ( 25 mg) and lisinopril (10 mg) per day. My blood pressure is about

93/69.

What type of medications are you on?

Roxanne

[Guest guest]

I am new to this group also and have only been doing WW for 3

weeks....and unfortunately I have gone down a few pounds and back up

the whole amount the next week. I have about 15 pounds total to lose

to reach my goal, so I am sure it will take some time as the last 10

pounds or so are the hardest to lose. You've done AWESOME losing

your 11.8 lbs! Keep up the good work...and don't get discouraged

with hubby's weight loss....everyone is different and it's your

weight loss that you should be concerned about and definitely be

proud of!! Way to go :)

>

>

> Hello and thanks for allowing me to join the group!

>

> I am in great need of some support! I joined WW on Sep. 14, 2005

and since have lost 11.8 lbs! I am very excited about that but I

have A LONG way to go! According to my " goal " weight for WW I need

to lose approx. 85 lbs. I DON'T like that number. I get

discouraged every time I see that number!!!

>

> I have lossed 60 before doing Atkins...but gained 30 of it back

when I decided I wanted my pasta and baked potatoes!! So I chose

the WW because I new it was healthy eating but you could have what

you want as long as you count it!! My dh and I are doing this

together but men lose faster and he is being a little discouraging

with his 18 lb lose already!! I'm not far behind but still there!

>

> I am a SAHM of four children. a age 10, Savanah age 8 and

Collin & Coriana age 3.

>

> THanks again for allowing me into the group and am looking forward

to getting to know some of you!

>

> Pam

>

>

>

>

[Guest guest]

Welcome to the group pam and congrats on your losses

thus far! Atkins works, just unrealistic. I lost 30lbs

on it 2 years ago and it came rushing back and then

some! I agree that ww is a much better way to go. I'm

not on a diet..i'm living a new lifestyle:)

Kris

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