Re: Cystic Fibrosis, Asthma, Xolair

[Guest guest]

In a sense, what I'm trying to say is, " I wonder how many of us actually have

Cystic Fibrosis rather than just asthma and/or sinusitis? "

>

> Recently I saw an infectious disease doc as I seem prone to infections; in

fact spent 3 months this winter with the flu and have trouble maintaining normal

bacteria in my digestive tract. I have been low on Vit D and had no trace of

Vit B6 both of which have been remedied with Rx treatment. I was told it was

from a lack of enzymes re B6. Also have trouble absorbing ferrous iron from

pills (causes diarrhea) which I forgot to mention to the doc.

>

> The infectious disease doc suggested the possibility of an atypical

presentation of cystic fibrosis as the symptoms I've described (along with

lifetime asthma and sinusitis/infections)are known to be a part of cystic

fibrosis. They know now that adults can develop cystic fibrosis - it's not just

a kid's disease.

>

> I looked it up and noticed that Xolair has been used experimentally for cystic

fibrosis. Xolair did lower symptoms of asthma for several months and definitely

helped with the chronic sinus headaches. I stopped taking it when required to

go to an infusion center because I can't hold down a job and camp out there.

Furthermore, I was doing fine injecting at home in the first place.

>

> Wondering if anyone else has heard this from their doc - that their severe

allergies including asthma and sinus infection might be atypical cystic

fibrosis? The infect dis doc is pushing nasal sprays and antihistamines.

Neither works for asthma or sinusitis and they do sometimes exacerbate both the

asthma and sinusitis.

>

[Guest guest]

From what I've read the sweat test is out of date and unreliable for atypical

cases. They are just now discovering that there's much more to it than

originally thought as another poster pointed out - there are not enough tests

available to prove it. I think it some cases it just has to be diagnosed on the

basis of symptoms.

> >

> > Recently I saw an infectious disease doc as I seem prone to infections; in

fact spent 3 months this winter with the flu and have trouble maintaining normal

bacteria in my digestive tract. I have been low on Vit D and had no trace of Vit

B6 both of which have been remedied with Rx treatment. I was told it was from a

lack of enzymes re B6. Also have trouble absorbing ferrous iron from pills

(causes diarrhea) which I forgot to mention to the doc.

> >

> > The infectious disease doc suggested the possibility of an atypical

presentation of cystic fibrosis as the symptoms I've described (along with

lifetime asthma and sinusitis/infection s)are known to be a part of cystic

fibrosis. They know now that adults can develop cystic fibrosis - it's not just

a kid's disease.

> >

> > I looked it up and noticed that Xolair has been used experimentally for

cystic fibrosis. Xolair did lower symptoms of asthma for several months and

definitely helped with the chronic sinus headaches. I stopped taking it when

required to go to an infusion center because I can't hold down a job and camp

out there. Furthermore, I was doing fine injecting at home in the first place.

> >

> > Wondering if anyone else has heard this from their doc - that their severe

allergies including asthma and sinus infection might be atypical cystic

fibrosis? The infect dis doc is pushing nasal sprays and antihistamines. Neither

works for asthma or sinusitis and they do sometimes exacerbate both the asthma

and sinusitis.

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[Guest guest]

all the test is is a simple " sweat test " . i had one at the age of 25, just to be

sure they didn't miss anything. (it was negative). if you or your dr are really

curious, ask them to do a sweat test. i had to go to the peds clinic in the

hosp, and was only there for an hour. compeltely non-invasive.

heather

> >

> > Recently I saw an infectious disease doc as I seem prone to infections; in

fact spent 3 months this winter with the flu and have trouble maintaining normal

bacteria in my digestive tract. I have been low on Vit D and had no trace of

Vit B6 both of which have been remedied with Rx treatment. I was told it was

from a lack of enzymes re B6. Also have trouble absorbing ferrous iron from

pills (causes diarrhea) which I forgot to mention to the doc.

> >

> > The infectious disease doc suggested the possibility of an atypical

presentation of cystic fibrosis as the symptoms I've described (along with

lifetime asthma and sinusitis/infections)are known to be a part of cystic

fibrosis. They know now that adults can develop cystic fibrosis - it's not just

a kid's disease.

> >

> > I looked it up and noticed that Xolair has been used experimentally for

cystic fibrosis. Xolair did lower symptoms of asthma for several months and

definitely helped with the chronic sinus headaches. I stopped taking it when

required to go to an infusion center because I can't hold down a job and camp

out there. Furthermore, I was doing fine injecting at home in the first place.

> >

> > Wondering if anyone else has heard this from their doc - that their severe

allergies including asthma and sinus infection might be atypical cystic

fibrosis? The infect dis doc is pushing nasal sprays and antihistamines.

Neither works for asthma or sinusitis and they do sometimes exacerbate both the

asthma and sinusitis.

> >

>

[Guest guest]

just as correction, Xolair has no basis of function in treating CF alone. Only

when the concern of allergic bronchopulmonary aspergillosis (ABPA), a fungal

infection that involves a massive IgE reaction takes place. That is the only

time an anti-IgE molecule will be used with an effect.

> > >

> > > Recently I saw an infectious disease doc as I seem prone to infections; in

fact spent 3 months this winter with the flu and have trouble maintaining normal

bacteria in my digestive tract. I have been low on Vit D and had no trace of Vit

B6 both of which have been remedied with Rx treatment. I was told it was from a

lack of enzymes re B6. Also have trouble absorbing ferrous iron from pills

(causes diarrhea) which I forgot to mention to the doc.

> > >

> > > The infectious disease doc suggested the possibility of an atypical

presentation of cystic fibrosis as the symptoms I've described (along with

lifetime asthma and sinusitis/infection s)are known to be a part of cystic

fibrosis. They know now that adults can develop cystic fibrosis - it's not just

a kid's disease.

> > >

> > > I looked it up and noticed that Xolair has been used experimentally for

cystic fibrosis. Xolair did lower symptoms of asthma for several months and

definitely helped with the chronic sinus headaches. I stopped taking it when

required to go to an infusion center because I can't hold down a job and camp

out there. Furthermore, I was doing fine injecting at home in the first place.

> > >

> > > Wondering if anyone else has heard this from their doc - that their severe

allergies including asthma and sinus infection might be atypical cystic

fibrosis? The infect dis doc is pushing nasal sprays and antihistamines. Neither

works for asthma or sinusitis and they do sometimes exacerbate both the asthma

and sinusitis.

> > >

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[Guest guest]

No idea WHY, but I just found this in my Drafts Box. It's from APRIL!

YIKES..Sorry for not posting this 6 months ago!! I HOPE you were able to get

the answers to your questions!

*******************************************************************

I have heard of this. Mater of fact I know a doctor, not my personal

Asthma/Allergy doctor, in the " Metro NYC " area, who has patients with CF.

AND...he is treating them with Xolair. This particular doctor is a Xolair

Physician Speaker. He said that he is seeing AMAZING results in their

treatment. If you are interested, I could send you his contact information and

you can have your doctor call him for " advisement. "

I have been told that I show " signs " of adult on set CF, too. But another

doctor said I have ABPA as I have tested positive for Aspergillus fungus.

>From: instdesgn1 <instdesgn1@...>

>Subject: [ ] Cystic Fibrosis, Asthma, Xolair

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>Date: Saturday, April 25, 2009, 3:21 PM

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>Recently I saw an infectious disease doc as I seem prone to infections; in fact

spent 3 months this winter with the flu and have trouble maintaining normal

bacteria in my digestive tract. I have been low on Vit D and had no trace of

Vit B6 both of which have been remedied with Rx treatment. I was told it was

from a lack of enzymes re B6. Also have trouble absorbing ferrous iron from

pills (causes diarrhea) which I forgot to mention to the doc.

>

>>The infectious disease doc suggested the possibility of an atypical

presentation of cystic fibrosis as the symptoms I've described (along with

lifetime asthma and sinusitis/infection s)are known to be a part of cystic

fibrosis. They know now that adults can develop cystic fibrosis - it's not just

a kid's disease.

>

>>I looked it up and noticed that Xolair has been used experimentally for cystic

fibrosis. Xolair did lower symptoms of asthma for several months and definitely

helped with the chronic sinus headaches. I stopped taking it when required to

go to an infusion center because I can't hold down a job and camp out there.

Furthermore, I was doing fine injecting at home in the first place.

>

>>Wondering if anyone else has heard this from their doc - that their severe

allergies including asthma and sinus infection might be atypical cystic

fibrosis? The infect dis doc is pushing nasal sprays and antihistamines.

Neither works for asthma or sinusitis and they do sometimes exacerbate both the

asthma and sinusitis.

>

>

>

[Guest guest]

Thanks for responding! I'm on the other side of the US so wouldn't be able to

connect with a NYC doc but am glad to hear of a med professional who has seen

this. The Xolair did help with my asthma for a while although when I quit it

due to home injections no longer allowed, it was not working. As I recall,

there are digestive symptoms that go along with it and some of it does fit into

my profile. I've never had a lung biopsy (and don't want it) but was diagnosed

with allergic bronchopulmonary aspergilliosis and I know mold really bothors me.

The doc (infectious disease) who suggested it hasn't seen me since last spring

so I'm in just a holding pattern there. My recent experiences with arthritis

DMARDS causing symptoms of infection or at the least toxicity lead me to believe

this is a multi-faceted condition. Apparently there is a link between asthma

and arthritis ... and with the so-called asthma it could be CF. Unfortunately,

the rheumy ignores the lung disease and the pulmo (pulmy to be fair? <grin>)

ignores the body pain. My body is caught in the middle!

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> >From: instdesgn1 <instdesgn1@...>

> >Subject: [ ] Cystic Fibrosis, Asthma, Xolair

> >

> >Date: Saturday, April 25, 2009, 3:21 PM

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> >Recently I saw an infectious disease doc as I seem prone to infections; in

fact spent 3 months this winter with the flu and have trouble maintaining normal

bacteria in my digestive tract. I have been low on Vit D and had no trace of

Vit B6 both of which have been remedied with Rx treatment. I was told it was

from a lack of enzymes re B6. Also have trouble absorbing ferrous iron from

pills (causes diarrhea) which I forgot to mention to the doc.

> >

> >>The infectious disease doc suggested the possibility of an atypical

presentation of cystic fibrosis as the symptoms I've described (along with

lifetime asthma and sinusitis/infection s)are known to be a part of cystic

fibrosis. They know now that adults can develop cystic fibrosis - it's not just

a kid's disease.

> >

> >>I looked it up and noticed that Xolair has been used experimentally for

cystic fibrosis. Xolair did lower symptoms of asthma for several months and

definitely helped with the chronic sinus headaches. I stopped taking it when

required to go to an infusion center because I can't hold down a job and camp

out there. Furthermore, I was doing fine injecting at home in the first place.

> >

> >>Wondering if anyone else has heard this from their doc - that their severe

allergies including asthma and sinus infection might be atypical cystic

fibrosis? The infect dis doc is pushing nasal sprays and antihistamines.

Neither works for asthma or sinusitis and they do sometimes exacerbate both the

asthma and sinusitis.

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