New to the group

[Guest guest]

Clare, Thank you so much for your perspective. I'm sorry to hear you have eyesight issues. Ethan was born in 1995. It took 6 wks to find out what he had, the hospital he was born at did not have a geneticst. Also subsequent visits made to highly recommended doctors almost made me batty. I seemed to know more about current procedures for BPES than they did. (We had two friends that were attending a university with an extensive medical libray.) One of the "Quacks" told us" oh we don't operate until much later." Ethan's openings were quite short and very weak levetators. On the third doctor(Dr. Dagi) within minutes of testing and measurements asked if she could consult with Dr. Cole(an oculaplastic surgeon). They concluded he needed surgery at 6 months. I've never regretted that and feel that is why he has good vision today. It is unbelievable how fast techniques are

changing for those doctors in the know and yet alarming at the amount of ignorance that still exsits with BPES. Ethan has been quite fortunate not to be bullied, but he has a lot of stares sent his way. Not all of it is bad though. We are leaving it up to him about any additional surgeries unless there is a drastic change in his vision. Does your daughter feel the additional surgery was for the best? Ethan is our laid back child he has a sister just below him age wise and one above. He has georgous blue eyes that are quite sensitive to bright light (but most of his blue eyed relatives are also). I'm sure you have been a large part in your daughters ability to deal with this and be secure. Thanks so much, Emalee Clare Teale <clareteale@...> wrote: Emalee Hiya, I cannot give you advice, as every case of BPES is different. I can of course tell you my situation. My eye sight is poorly, because my eye lids were affected by BPES , but in those days they didnt operate till teens... I had 2 operations, and I have to wear glasses. My daughter has had 2 operations, at age 4, her eye lids were not as affected like mine, but still by age 4 Mr Collin operated as he said he wanted her to have the op before starting school, as it had started to affect her eye sight. If you sonr has 20/20

vision, and is coping physically with the demands of BPES, then fab. As for starting high school, just give him confidence within himself, teach him to smile. Allow him to understand that people only say things because they dont understand. The more we as parents support our children and show them that BPES is a minor thing in our lives, the more they take this on board and it becomes a minor thing in their own lives. My daughter is 12 and just started secondary school, my sons have more problems with school and bullies than she does. (the boys dont have BPES). Let us know how you get on, I would be happy for my daughter to 'speak' to you on mail, if you want it from her perspective. Good stuff Clare, Herts UK emalee <emaleebarrow > wrote: Hello Clare, Thanks for the welcome. I'm hoping this will help our son. He will be in High school next year and we all know kids are not always pleasant. Do you have any advice on additional surgeries? So far Ethan only has to wear glasses on an as needed basis. About 2yrs ago his vision slipped a little but at the next annual check-up he was 20/20 again. Thanks, EmaleeClare Teale <clareteale > wrote: Emalee, hello and and a huge welcome to this wonderful group. It is amazing when we see others with BPES isnt it? Before I attended the BPES get togethers in London, I had only seen 1 other man with it. Me and my daughter have it, my sons dont . He had not had operations,

and was deciding whether he should or not.... I look forward to hearing from you soon. Clare Teale (Herts, UK)emalee <emaleebarrow > wrote: Hello, It was nice to view the photos. We have only come face to face with a mother and child that also had Bleph. This was at a store in a small town. She was a grown woman and her doctors just called it "the eyes". I gave her some information and hope she followed up with it. Take care, Emalee <claire.haun > wrote: Hi AliLike you I'm also fairly new to the group. I was also also very happy to see

everyones photos and discover that I wasn't alone. It really is great to know there are other people experiencing the same things you do.I hope you find the same joy that I have since finding the group.Take care Emalee Barrow Looking for last minute shopping deals? Find them fast with Search. Clare Teale www.talking-spirit.moonfruit.com 07776 481481 Looking for last minute shopping

deals? Find them fast with Search. Emalee Barrow Never miss a thing. Make your homepage. Looking for last minute shopping deals? Find them fast with Search.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi

Welcome to the group, it is such a good place to find answers and

support. I just posted a message with some info on fertility that may

help.

Like your son I only found out that what I have is Bleph, and that it

is genetic, when my daughter was born with the condition.

Hopefully you will get plenty of information from this site for your

grand-daughters that will allow them to be sure they will be able to

have children of their own one day.

Take care

>

> Hi, Im , and my son was born with blepharophimosis, although my

> other children weren't affected. He is now 25 and has children of his

> own and it wasn't until he had his first child who also has the

> condition, that we found out it was genetic, he has two daughters and

a

> son, but it is his daughters that have the condition. We have

recently

> read that their fertility could be affected, whilst they are only

young

> at the moment, we want to gather as much information as we can

> regarding this, if anyone can help it would be much appreciated. Also

> he suffers terribly with psoriasis, could this be connected in any

way?

> Look forward to hearing from you.

>

[Guest guest]

why would you remove it?

New to the group

Hello everyone.

I just found out last week that I have two gallstones. I have had what

I thought was three attacks. Well, the sonogram confirmed it. I am

looking for some advice to handle the nauseau and tiredness that I have

been feeling.

I am suppose to talk with a surgeon next week. Do I remove or not?

Several women in my family have had gall bladder problems and have had

it removed?

Need some advice to get me through.

Thanks!

[Guest guest]

>

> I just found out last week that I have two gallstones. Do I remove or

> not?

>

> >

Removal is the LAST thing you want to do. There is no getting it back.

Chose some of the flushes explained here and do it. I have hundreds (if not

thousands) of stones. I had one attack over 2 years ago. The dr. wanted to

cut it out, of course. I refused, went home and did some studying. I

still have my GB. Many people will have an attack and never have another

one. Read about A-F Betafood tablets. They are a God-send for GB problems.

Amber

[Guest guest]

Hi ,

Removing your GB will not solve the problem. Changing your diet will.

This means leaving alone greasy, fried foods, cheeses, usually eggs,

cooking oils except olive oil, (learn to love it, and your GB will come

to love you), Milk, as it has fat in it that is hard on the Liver/GB.

Just because you remove the gallbladder does not stop the system from

making the stones. The stones will be stored in the liver and that is

bad.

Start doing GB cleanses and castor oil packs on the liver area. This

helps to soften the stones and then the apple juice, and olive

oil/lemon cleanses remove them.

Drs dont know tell you about these things. Check the archives of this

group for instructions on how to do these cleanses.

>

> Hello everyone.

>

> I just found out last week that I have two gallstones. I have had

what

> I thought was three attacks. Well, the sonogram confirmed it. I am

> looking for some advice to handle the nauseau and tiredness that I

have

> been feeling.

>

> I am suppose to talk with a surgeon next week. Do I remove or not?

> Several women in my family have had gall bladder problems and have had

> it removed?

>

> Need some advice to get me through.

>

> Thanks!

>

>

>

[Guest guest]

Hi ,

Don't remove yet. If you can manage the symptoms then better. I'm keeping

mine it's been 1 month since my last attack and I have changed my diet. Be

informed first. It's good that you joined this group as I'm new here too.

" sward4314 "

<sward4314 (DOT)

com> To

Sent by: gallstones

gallstones@g cc

roups.com

Subject

New to the group

06/29/2008 05:52

AM

Please respond to

gallstones@g

roups.com

Hello everyone.

I just found out last week that I have two gallstones. I have had what

I thought was three attacks. Well, the sonogram confirmed it. I am

looking for some advice to handle the nauseau and tiredness that I have

been feeling.

I am suppose to talk with a surgeon next week. Do I remove or not?

Several women in my family have had gall bladder problems and have had

it removed?

Need some advice to get me through.

Thanks!

[Guest guest]

> Hi ,

>

> Don't remove yet. If you can manage the symptoms then better. I'm keeping

> mine it's been 1 month since my last attack and I have changed my diet.

> Be

> informed first. It's good that you joined this group as I'm new here too.

I think I missed the beginning of this discussion, but I had my only GB

attack March 12, 2006, and I still have my GB. Take A-F Betafood tablets,

changed my diet, did 3 flushes and passed hundreds of stones. I still have

stones, according to a sonogram, but I'm doing fine. Lots of people who has

a GB attack only have one and never have another one. If you do have (or

have had) surgery, you still have to change the way you eat because the body

still makes stones.

Amber

[Guest guest]

I understand that tonsil problems can be caused by a dairy

intolerance. Another sign of a dairy problem is if you had any ear

infections as a child. It may not be that your tonsils were not

functioning correctly, but rather you were unknowningly putting stuff

into your body that was poisonous to your body.

--- In gallstones , " fridayamcg " <fridayamcg@...>

wrote:

>

> Hi everyone

> I am new to this group. Diagnosed with gallstones about 2 months

ago

> and doctor wants to operate. When diagnosed i had a bad attack and

> blocked stone in bile duct, had to go to hospital to get blocked

> stone out. He says it may happen again and even affect my pancreas.

> I am 41 year old mother of 3, and been getting attacks for the last

3

> years. I thought I kept getting food poisoning, and was getting

very

> sensitive to various foods. So, for last 2 months, I've been off

> dairy products (lost heaps of weight), no red meat, no fried foods,

> no caffeine, no alcohol. Having fresh vegetable juice in the

> morning, trying to follow Cabot's Liver Cleansing Diet. But

> I've still been having attacks every couple of weeks, where I spend

> all night throwing up. I don't know what sets me off with an

attack.

> Twice I've been to hospital where they put me on a drip because I'm

> so dehydrated, and drugs to stop vomiting and for pain. As it is I

> find the attacks quite debilitating, because they wipe me out,

first

> vomiting all night and then recovering afterwards. This is so

> difficult as a busy mother of three. When I am sick like that I

> think maybe it is better to get my gallbladder out. I've been

> reading lots about gallstone flushing. But I am very nervous about

> trying this. Scared about bringing on another attack. I have also

> had acute appendicitis at age 13 and tonsils out at age 19 (they

were

> not functioning properly), and I wonder is there any connection

> between these organs that get removed that we can supposedly live

> without??? Does anyone have a similar situation? Or some good

> advice please??

>

[Guest guest]

Are you still eating breads/wheat?

Evie

So, for last 2 months, I've been off

> dairy products (lost heaps of weight), no red meat, no fried foods,

> no caffeine, no alcohol. Having fresh vegetable juice in the

> morning, trying to follow Cabot's Liver Cleansing Diet. But

> I've still been having attacks every couple of weeks, where I spend

> all night throwing up. I don't know what sets me off with an attack.

[Guest guest]

Hey there welcome to the group!

I have some advice. If Cabot's liver cleanse doesn't include

epsom salts that might only prolong your pain. You need to do a

flush with the epsom salts to dialate the bile ducts and get those

stones out of there. Ive done it many times without symptoms if you

feel nauseated during the flush there are many things you can do to

stop it (peppermint oil capsules, applying heat to the liver, lying

only on the right side and never the left side, doing a colon cleanse

just prior to doing the flush in the form of a colonic or colema

board and/or salt water flush

http://www.cleansingorsurgery.com/saltwaterflush.htm

These help combat nausea.

If your worried about pain drinking the epsom salts with apple juice

as per the Hulda protocol will prevent most people from having

any pain what so ever. H monitored 500 of her patients over

the years who all did flushes without pain. Some of them were in

their 70's and 80's. Its also recommended if you feel any pain after

the flush that you can drink 1 tbsp of epsom salts mixed with

grapefruit juice.

Hope that helps you out, have faith dont chop out another vital organ

it sounds like you've already lost some.

Look into heavy metal detoxing too something is holding your immune

function down.

Brad

--- In gallstones , " fridayamcg " <fridayamcg@...>

wrote:

>

> Hi everyone

> I am new to this group. Diagnosed with gallstones about 2 months

ago

> and doctor wants to operate. When diagnosed i had a bad attack and

> blocked stone in bile duct, had to go to hospital to get blocked

> stone out. He says it may happen again and even affect my pancreas.

> I am 41 year old mother of 3, and been getting attacks for the last

3

> years. I thought I kept getting food poisoning, and was getting

very

> sensitive to various foods. So, for last 2 months, I've been off

> dairy products (lost heaps of weight), no red meat, no fried foods,

> no caffeine, no alcohol. Having fresh vegetable juice in the

> morning, trying to follow Cabot's Liver Cleansing Diet. But

> I've still been having attacks every couple of weeks, where I spend

> all night throwing up. I don't know what sets me off with an

attack.

> Twice I've been to hospital where they put me on a drip because I'm

> so dehydrated, and drugs to stop vomiting and for pain. As it is I

> find the attacks quite debilitating, because they wipe me out,

first

> vomiting all night and then recovering afterwards. This is so

> difficult as a busy mother of three. When I am sick like that I

> think maybe it is better to get my gallbladder out. I've been

> reading lots about gallstone flushing. But I am very nervous about

> trying this. Scared about bringing on another attack. I have also

> had acute appendicitis at age 13 and tonsils out at age 19 (they

were

> not functioning properly), and I wonder is there any connection

> between these organs that get removed that we can supposedly live

> without??? Does anyone have a similar situation? Or some good

> advice please??

>

[Guest guest]

Hi Evie

 

I'm trying not to eat too much but I am still having bread and sometimes pasta.

Do you think that could make a difference if I cut out wheat?

 

Its already difficult to know what to eat, sometimes I just cook normally for my

family and just steam some fish and rice and salad for myself.  But its when

I'm out and about or at someone elses house that i find it difficult. 

 

Thank you

Connie

Start your day with 7 and win a Sony Bravia TV. Enter now

http://au.docs./homepageset/?p1=other & p2=au & p3=tagline

[Guest guest]

Hi Brad

 

Thank you for your reply.

I get a bit bewildered with all the flush info.  I looked at that saltwater

flush link that you posted, and the gallbladder flush on that site is listed

very simply and easy to understand. 

I might look up the epsom salt one as well.

Maybe I will just give it a go.  The worst that can happen is that I throw up

and I've done that plenty of times before or that I get another blocked stone.

I will read some more, and let you know how I go.  I have just heard about

another doctor who is a GP and also has qualifications in Chinese Herbal

Medicine, nuturition, acupuncture and quite a few other things.  My first step

is to make an appointment to see her.  Actually I'm going to see my naturopath

tomorrow first.

And then I need to cancel my surgery too.

You have given me more to think about.

Thank you

Connie

Start your day with 7 and win a Sony Bravia TV. Enter now

http://au.docs./homepageset/?p1=other & p2=au & p3=tagline

[Guest guest]

Dear Connie

Epsom salts taken before the flush dilate the ducts allowing stones

easier passage. They are not pleasant tasting- to help you may want

to dissovle 3 tablespoons in 24 oz of water and then refrigerate the

water before taking it as it will help the taste.

As for throwing up - try and think positive thoughts especially for

the day u plan on flushing. Sit quietly and repeat over and over how

u are going to handle the lemon juice and olive oil just fine. It is

as simple as telling yourself over and over lemon juice and olive oil

are tasty and are good for me. Say that 100 times before the flush

and u will overcome .

Also, get your self some AF Beta food from Standard process - the

pills work very well - take some with you whenever u go out - they

have stopped the GB pain for me and many others on this site.

Remember u would like to build up to the flush with a good diet- if u

have not done so already introduce beets into ur diet - I steam them

( 2 and 3 at a time) and eat them daily. Also, shredded in a salad or

by themselves with a little olive oil and ot lemon juice!

Good luck

FB

PS

You are on the right track AND BELIEVING YOU ARE WILL GO A LONG WAY

IN GETTING U WHERE U WANT to go

On Dec 3, 2008, at 3:43 AM, Connie Griebe wrote:

> Hi Brad

>

> Thank you for your reply.

> I get a bit bewildered with all the flush info. I looked at that

> saltwater flush link that you posted, and the gallbladder flush on

> that site is listed very simply and easy to understand.

> I might look up the epsom salt one as well.

> Maybe I will just give it a go. The worst that can happen is that

> I throw up and I've done that plenty of times before or that I get

> another blocked stone.

> I will read some more, and let you know how I go. I have just

> heard about another doctor who is a GP and also has qualifications

> in Chinese Herbal Medicine, nuturition, acupuncture and quite a few

> other things. My first step is to make an appointment to see her.

> Actually I'm going to see my naturopath tomorrow first.

> And then I need to cancel my surgery too.

> You have given me more to think about.

> Thank you

> Connie

>

> Start your day with 7 and win a Sony Bravia TV. Enter now

> http://au.docs./homepageset/?p1=other & p2=au & p3=tagline

>

>

[Guest guest]

Well this is my first email and I still am on the fence regarding Xolair - I

know I need it - three different Docs have suggested it - I guess I have been

living on meds and trips to the hosptial for the last 8 years that I don't

believe there is a light at the end of the tunnel. I take medication faithfully

but I guess the allergy componet is just too strong. 

My Ige level is 401 - is there anyone else with that level that has had

success? 

[Guest guest]

>

> Well this is my first email and I still am on the fence regarding Xolair - I

know I need it - three different Docs have suggested it - I guess I have been

living on meds and trips to the hosptial for the last 8 years that I don't

believe there is a light at the end of the tunnel. I take medication faithfully

but I guess the allergy componet is just too strong. 

>

> My Ige level is 401 - is there anyone else with that level that has had

success? 

>

>

>

Kathy, welcome to the group

I was exactly where you are 7 years ago. When my doctor told me about xolair, I

jumped at the chance. I was tired of the daily 40 mg of pred that was wrecking

my body, the trips to the ER.

I was the first patient in the State of Arkansas to get Xolair. Now I am

completely off prednisone and only neb a couple of times a day.

Not everyone has this great of success but most of the posts in here are

positive.

Friends, let's welcome Kathy! Tell her your story

Doug

Group founder

[Guest guest]

My level was 528 when I started taking Xolair in July of 2005. I hadn't been

to the ER for Asthma " issues " until this year when I had to stop taking Xolair

due to insurance " issues " . Believe me when I say that the positive

transformation my life made in those few years I was on Xolair was AMAZING. Now

I'm back dealing with the same old b.s. I had to deal with pre-Xolair.

My Asthma Doc treats patient with IgE levels in the TENS of thousand range and

they have all seen amazing results.

________________________________

From: Kathy & Chuck Egan <ckegan33@...>

Sent: Fri, April 30, 2010 1:22:55 PM

Subject: [ ] New to the group

Well this is my first email and I still am on the fence regarding Xolair - I

know I need it - three different Docs have suggested it - I guess I have been

living on meds and trips to the hosptial for the last 8 years that I don't

believe there is a light at the end of the tunnel. I take medication faithfully

but I guess the allergy componet is just too strong.

My Ige level is 401 - is there anyone else with that level that has had success?

[Guest guest]

Hello Kathy

I'm fairly new also, only have had my shots 3 times. I have had asthma for 3

years and not been able to control it. Been on daily steroids for 2 years and on

oxygen every night. It will be worth it all if I can get off steroids (ugh

weight gain, moon face, swelling, gut rot....). I have found this group so

helpful in answering questions.

Good Luck

Tricia

Sent via BlackBerry from T-Mobile

-----Original Message-----

From: " Ol Wheezy " <uca79iii@...>

Date: Fri, 30 Apr 2010 17:48:46

< >

Subject: [ ] Re: New to the group

>

> Well this is my first email and I still am on the fence regarding Xolair - I

know I need it - three different Docs have suggested it - I guess I have been

living on meds and trips to the hosptial for the last 8 years that I don't

believe there is a light at the end of the tunnel. I take medication faithfully

but I guess the allergy componet is just too strong. 

>

> My Ige level is 401 - is there anyone else with that level that has had

success? 

>

>

>

Kathy, welcome to the group

I was exactly where you are 7 years ago. When my doctor told me about xolair, I

jumped at the chance. I was tired of the daily 40 mg of pred that was wrecking

my body, the trips to the ER.

I was the first patient in the State of Arkansas to get Xolair. Now I am

completely off prednisone and only neb a couple of times a day.

Not everyone has this great of success but most of the posts in here are

positive.

Friends, let's welcome Kathy! Tell her your story

Doug

Group founder

[Guest guest]

I guess Xolair is a life time medication?  I though you could use it for a

period of time - that was one answer i did not get from my doc - when asked how

long will i be onit she said that's up to you.

your level was 528 then is it lower now?

________________________________

From: K K <grneyyedlady@...>

Sent: Fri, April 30, 2010 1:58:19 PM

Subject: Re: [ ] New to the group

 

My level was 528 when I started taking Xolair in July of 2005. I hadn't been to

the ER for Asthma " issues " until this year when I had to stop taking Xolair due

to insurance " issues " . Believe me when I say that the positive transformation my

life made in those few years I was on Xolair was AMAZING. Now I'm back dealing

with the same old b.s. I had to deal with pre-Xolair.

My Asthma Doc treats patient with IgE levels in the TENS of thousand range and

they have all seen amazing results.

____________ _________ _________ __

From: Kathy & Chuck Egan <ckegan33 (DOT) com>

Sent: Fri, April 30, 2010 1:22:55 PM

Subject: [ ] New to the group

Well this is my first email and I still am on the fence regarding Xolair - I

know I need it - three different Docs have suggested it - I guess I have been

living on meds and trips to the hosptial for the last 8 years that I don't

believe there is a light at the end of the tunnel. I take medication faithfully

but I guess the allergy componet is just too strong.

My Ige level is 401 - is there anyone else with that level that has had success?

[Guest guest]

Hi Kathy.

Welcome to the Xolair group.

I have been on xolair for three and a half years and have seen drastic

improvement.  I was on prednisone at least three times a year, sometimes 4, and

on meds all the time.  I still take asthma meds, but I rarely have to use my

rescue inhaler or neb.  I have been on pred. once since starting xolair and

that was because the mountain cedar and mold were very high at the same time in

December.  The doctor had put me on 1 shot every six weeks about a year ago,

but when I told the xolair doc about the December prednisone, he put me back on

1 shot every four weeks and I rather breezed through one of the worst oak pollen

seasons we have had here in years.  (and I am allergic to all tree pollens!)

 

If you have made that many trips to the ER, I would say it is worth trying. 

Don't expect too much too soon...everyone's system reacts differently and some

have seen results right away, for others it has taken 6 months to a year.  For

me it has been worth it.

 

Best wishes.

From: Ol Wheezy <uca79iii@...>

Subject: [ ] Re: New to the group

Date: Friday, April 30, 2010, 12:48 PM

 

>

> Well this is my first email and I still am on the fence regarding Xolair - I

know I need it - three different Docs have suggested it - I guess I have been

living on meds and trips to the hosptial for the last 8 years that I don't

believe there is a light at the end of the tunnel. I take medication faithfully

but I guess the allergy componet is just too strong. 

>

> My Ige level is 401 - is there anyone else with that level that has had

success? 

>

>

>

Kathy, welcome to the group

I was exactly where you are 7 years ago. When my doctor told me about xolair, I

jumped at the chance. I was tired of the daily 40 mg of pred that was wrecking

my body, the trips to the ER.

I was the first patient in the State of Arkansas to get Xolair. Now I am

completely off prednisone and only neb a couple of times a day.

Not everyone has this great of success but most of the posts in here are

positive.

Friends, let's welcome Kathy! Tell her your story

Doug

Group founder

[Guest guest]

>

> I guess Xolair is a life time medication?

>

Yes, that is what my doctor has informed me in my case.

Doug

Group founder

[Guest guest]

Thanks everyone - I am still on the fence but leaning towards starting - my

doctor started the insurance nightmare last week - so if they approve the drug

that could be the push needed.  

________________________________

From: " mom2alexnabbie@... " <mom2alexnabbie@...>

Sent: Fri, April 30, 2010 2:08:38 PM

Subject: Re: [ ] Re: New to the group

Hello Kathy

I'm fairly new also, only have had my shots 3 times.  I have had asthma for 3

years and not been able to control it. Been on daily steroids for 2 years and on

oxygen every night. It will be worth it all if I can get off steroids (ugh

weight gain, moon face, swelling, gut rot....). I have found this group so

helpful in answering questions.

Good Luck

Tricia

Sent via BlackBerry from T-Mobile

-----Original Message-----

From: " Ol Wheezy " <uca79iii@...>

Date: Fri, 30 Apr 2010 17:48:46

< >

Subject: [ ] Re: New to the group

>

> Well this is my first email and I still am on the fence regarding Xolair - I

know I need it - three different Docs have suggested it - I guess I have been

living on meds and trips to the hosptial for the last 8 years that I don't

believe there is a light at the end of the tunnel. I take medication faithfully

but I guess the allergy componet is just too strong. 

>

> My Ige level is 401 - is there anyone else with that level that has had

success? 

>

>

>     

Kathy, welcome to the group

I was exactly where you are 7 years ago. When my doctor told me about xolair, I

jumped at the chance. I was tired of the daily 40 mg of pred that was wrecking

my body, the trips to the ER.

I was the first patient in the State of Arkansas to get Xolair.  Now I am

completely off prednisone and only neb a couple of times a day.

Not everyone has this great of success but most of the posts in here are

positive.

Friends, let's welcome Kathy!  Tell her your story

Doug

Group founder

[Guest guest]

My doctor has never said any different.  The only thing he tried was reducing

the dose and it didn't work.

From: Ol Wheezy <uca79iii@...>

Subject: [ ] Re: New to the group

Date: Friday, April 30, 2010, 3:32 PM

 

>

> I guess Xolair is a life time medication?

>

Yes, that is what my doctor has informed me in my case.

Doug

Group founder

[Guest guest]

if i had to quit xolair i would die...everytime its time to taske it i just am

terrible.

ashleigh

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From: K K <grneyyedlady@...>

Sent: Fri, April 30, 2010 12:58:19 PM

Subject: Re: [ ] New to the group

My level was 528 when I started taking Xolair in July of 2005. I hadn't been

to the ER for Asthma " issues " until this year when I had to stop taking Xolair

due to insurance " issues " . Believe me when I say that the positive

transformation my life made in those few years I was on Xolair was AMAZING. Now

I'm back dealing with the same old b.s. I had to deal with pre-Xolair.

My Asthma Doc treats patient with IgE levels in the TENS of thousand range and

they have all seen amazing results.

____________ _________ _________ __

From: Kathy & Chuck Egan <ckegan33 (DOT) com>

Sent: Fri, April 30, 2010 1:22:55 PM

Subject: [ ] New to the group

Well this is my first email and I still am on the fence regarding Xolair - I

know I need it - three different Docs have suggested it - I guess I have been

living on meds and trips to the hosptial for the last 8 years that I don't

believe there is a light at the end of the tunnel. I take medication faithfully

but I guess the allergy componet is just too strong.

My Ige level is 401 - is there anyone else with that level that has had success?