Re: Re: Cystic Fibrosis, Asthma, Xolair

[Guest guest]

I was tested for Cystic Fibrosis about 2 years ago.  The test is very

simple....a chenical is spread on the skin, an almost unnoticable current

applied for a few minutes, and a device to collect sweat taped on.  The lab

measures the salt levels in the sweat.  If it is high enogugh, you have CF.  I

saw the laab tech, went shoppng in ton, and then back to the hospital for

the results.  I do not have it.  My ent suggested the test sometime ago. 

Probably worth looking into.  Finding a test facility is the hard part.  I went

to the Medical University of South Carolina.

 Mike McBride

" Failure is not fatal unless you quit; getting knocked down is not embarrassing

unless you allow it to keep you down. " Ashcroft

________________________________

From: instdesgn1 <instdesgn1@...>

Sent: Sunday, April 26, 2009 9:23:54 AM

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

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/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]

the way to determine this is to be tested.  there are other lung conditions,

copd, bronchiactesis, etc.  and as I mentioned before, the ongoing studies of

dna indicate that there are more CF genes than tests are as yet available for. 

________________________________

From: instdesgn1 <instdesgn1@...>

Sent: Sunday, April 26, 2009 1:23:54 PM

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

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/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]

You are exactly right. There are other factors as well such as immobile cilia.

I am awaiting results of my EM study now. It takes about 3 months for the

results to come back after a biopsy.

Everybody be safe and take precautions against swine flu. You can never be too

pretective especially if you have been on prednisone for a long time. Our lymph

counts are lowered.

I am wearing N95 rated masks when I am doctors' offices, etc. The local

pharmacies are sold out so I had to order some on line. Allegro has them at

about 18 dollars for a box of 20 with free shipping if you order over 25 dollars

of merchandise. At Walgreens, I was paying about 6 dollars for a box of 2 btw.

Something to consider and not an advertisement by any means.

Be safe.

LMA

________________________________

From: instdesgn1 <instdesgn1@...>

Sent: Monday, April 27, 2009 9:17:31 PM

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

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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