Re:bronchieactisis and aspergillisosis

[Guest guest]

Your sister's history has a remarkable similarity to my own. I've had the long

term lung infections and asthma with a doctor who didn't take me seriously and

now have mosaic bronchieactisis and allergic bronchopulmonary aspergillisosis.

The prednisone treatment is standard but due to the devastating side effects I'm

not on it. There are other lung meds such as Spiriva, Advair, Albuterol, and so

forth which aren't a real solution but better for me than prednisone. Really,

this has a lot to do with why I'm on Xolair now. I really hope that your sister

can get to a doc who will put her on Xolair and some other treatment.

Technically it's not approved for allergic bronchopulmonary aspergillisosis

(which is what I have) but with any kind of allergy and asthma, Xolair can be

prescribed. I think Xolair is even being tested for other diseases including

chronic sinusitis which I have too. I would become very assertive with doctors

about her treatment and demand better even

if it's off-label. Good luck to you and your sister.

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Hi,

I was really interested to read your mail particularly as you mention

Bronchiectasis. I have asthma for 9 years now and similar to you, I

have had continuous lung infections for almost two years. I was

diagnosed with bronchiectasis last May. I have just made my

decision to go on Xolair. My consultant recommended it and after

finding this site(only last week) I have come to my decision to start

the treatment. However I was wondering if it would alleviate the

Bronchiectasis as all the literature on Xolair refers to Asthma.

Have you found that it has helped the symptoms of Bronchiecasis?

Would be really interested im hearing how you are progressing

Best Wishes

Therese

-- In , SD Designer <instdesgn1@...>

wrote:

>

> Your sister's history has a remarkable similarity to my own. I've

had the long term lung infections and asthma with a doctor who didn't

take me seriously and now have mosaic bronchieactisis and allergic

bronchopulmonary aspergillisosis. The prednisone treatment is

standard but due to the devastating side effects I'm not on it.

There are other lung meds such as Spiriva, Advair, Albuterol, and so

forth which aren't a real solution but better for me than

prednisone. Really, this has a lot to do with why I'm on Xolair

now. I really hope that your sister can get to a doc who will put

her on Xolair and some other treatment. Technically it's not

approved for allergic bronchopulmonary aspergillisosis (which is what

I have) but with any kind of allergy and asthma, Xolair can be

prescribed. I think Xolair is even being tested for other diseases

including chronic sinusitis which I have too. I would become very

assertive with doctors about her treatment and demand better even

> if it's off-label. Good luck to you and your sister.

>

>

>

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

>

[Guest guest]

I'd like to second the idea of trying multiple inhaled

corticosteroids. My doc and I are now trying the following

combination when I have a serious episode - Advair 500/1 puff/2x per

day PLUS pulmicort inhaler/1 puff/2x per day PLUS asmaxex inhaler/2

puffs/2x per day. Then I taper down from there as I improve.

Apparently there are two types of inhaled corticosteroids and they

each target different " areas " of the lungs. While taking all those

steroids isn't great, any time you can used inhaled rather than oral

it decreases your chances of side effects. We've done this twice

now -- once to help me taper off pred during a terrible post-mold

exposure episode and a second time from the get go and that time I

didn't need any pred at all.

Addy

Group co-owner

Insert standard disclaimer about talking with your own doctor here.

>

> > Your sister's history has a remarkable similarity to

> > my own. I've had the long term lung infections and

> > asthma with a doctor who didn't take me seriously

> > and now have mosaic bronchieactisis and allergic

> > bronchopulmonary aspergillisosis. The prednisone

> > treatment is standard but due to the devastating

> > side effects I'm not on it. There are other lung

> > meds such as Spiriva, Advair, Albuterol, and so

> > forth which aren't a real solution but better for me

> > than prednisone. Really, this has a lot to do with

> > why I'm on Xolair now. I really hope that your

> > sister can get to a doc who will put her on Xolair

> > and some other treatment. Technically it's not

> > approved for allergic bronchopulmonary

> > aspergillisosis (which is what I have) but with any

> > kind of allergy and asthma, Xolair can be

> > prescribed. I think Xolair is even being tested for

> > other diseases including chronic sinusitis which I

> > have too. I would become very assertive with

> > doctors about her treatment and demand better even

> > if it's off-label. Good luck to you and your

> > sister.

> >

> >

> >

> >

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

> > Ahhh...imagining that irresistible " new car " smell?

> > Check outnew cars at Autos.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

One other thought that might or might not fit your sister's particular situation

.... but ... this happened to me.

About 3 years ago I went to a neurologist complaining among other things that

I was perpetually sick - bronchitis and upper respiratory infections. He ran

some sort of Vitamin B6 and B12 blood tests (this is MAINSTREAM medicine - not

alternative at all) in part because much of my family had allegedly had

pernicious anemia. (My grandfather, b. in 1860 apparently had asthma too.) It

turned out that I had no trace of B6 because I don't have the enzymes to absorb

it and it probably runs in my family rather than pernicious anemia. B12 was

very low too. I could not absorb those nutrients through foods or even most

vitamins you find in stores even though I'm too able to put on weight!

Recently I found out I was low in Vit D (again, MAINSTREAM MEDICINE through an

endocrinologist).

I will say this, that with the prescription form of these vitamins I had less

extensive bronchitis than I did before I found out about the deficiencies. The

other thing that helped a little bit was a pneumonia vaccine. That's pneumonia

- not flu - and I got a booster five years after the first pneumonia vaccine.

These treatments were a bit of the proverbial " day late and a dollar short "

because obviously damage had already occurred to my lungs but they did help.

No one else ever considered these issues at all and I'm not sure I'd be even

half way functional if I hadn't stumbled into this medical insight and

knowledge. Again, I'm talking mainstream healthcare (even though most docs

aren't that advanced) and am not promoting healthfood or supplemental treatment

at all. My treatment is all by prescription from highly reputable MDs.

Again, best of good health to you and your sister.

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.