(No subject)

[Guest guest]

I am saying that my daughter also had a normal biopsy when she was 7 years old and she is 15 now. They have found that in approx. 20% of cases there is actually Cilia abnormalities that need more testing. Hence, the new testing going on in the (4) Universities in the U.S. At least this is the way that it was explained to me this week with my daughter at St. Louis Childrens Hospital (One of the 4 Institutions conducting these studies.) I had explained to them that she had had a normal Cilia test, again they said in certain people they have to do more testing. The main hub for the program is in Chapel Hill, North Carolina at the school of medicine. Their address isn http://pulmonary.med.unc.edu/PCD.htm or contact the the PCD Foundation: www.pcdfoundation.org, I can't say for sure, but perhaps you could be in that 20%. It would be well worth visiting again, if everything else has not turned up an answer for you. Good Luck, Vickie

[Guest guest]

Dear Vickie,

This is very interesting. I had a biopsy for cilia

disorders. This was done approximately 13 years ago,

and was sent to Toronto Hospital for Sick Children

(better known as Sick Kids) in Toronto. According to

the biopsy, my cilia work normally. I was not aware of

other tests for disorders of the cilia. Are you saying

that one can have a normal biopsy, but impaired cilia

due to PCD? I will have to follow up on this. Is it

okay to share your post with my family doctor? My

doctors think I have a variant form of CF, however my

lung and sinus problems are also similar to those in

PCD. Many of these diseases share similarities.

In my non-medical opinion there must be an underlying

reason bronchiectasis develops. Some doctors say

children can develop it after having the whooping

cough or pneumonia, etc. I still think there is much

that remains unknown about lung disorders.

As a young child, I was exposed to chemicals from crop

dusters. We live in a rural area close to what were

once potato fields. Crop dusters would fly over the

fields and even over our family home. When you are a

little girl, 2 and up watching a plane fly over head

is exciting, so I would run outside to see the planes.

This was in the mid-to-late 1970s when spraying crops

with crop dusters was a common practice. My parents

used to say the chemicals would burn their skin and

leave marks on the car. I do not recall my skin ever

feeling burnt. Mom and dad often pondered if the

planes could have caused some of my lung problems, but

doctors are not able to provide us with an answer. I

was also exposed to mould in the local junior and

senior high school. My lungs were getting worse at

that time, and we do not know if the mould may have

caused any permanent problems. I do have an asthmatic

component that definitely worsened. There were four or

five kids with asthma and they experienced a worsening

of their condition during school time. School

officials would not believe us or listen to the

parents. It was not until after I graduated that an

increasingly number of teens and teachers were

experiencing sickness associated with the school

building. It has since been condemned and closed, and

fortunately, there now exist a new and much improved

school. The kids with asthma were the canaries. Its a

sin that officials associated with our school took so

long to listen.

Thank you, again, and I hope your daughter is feeling

well and enjoying her summer vacation.

Hugs:0)

e-mail:maryholt12@... or lungsformary@...

Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

carepages.com name:maryelizabethholt

) " Miracles happen with love..... " ..... Please support your local children's

hospital.... and " Give with all your might! "

http://iwkfoundation.org/

)Visit.... Children's Miracle Network.... http://www.cmn.org/ )

" I don't give in, I don't give up, and I don't take no for an answer. "

~Doris ~

__________________________________________________

[Guest guest]

Dear Vickie,

Thanks again. Perhaps this is one of the pieces of the

puzzle. I will certainly look into the study and would

be interested in contacting the hospital that is

closest to Nova Scotia. Its good to know that the

tests are covered and it would be interesting to learn

from a PCD expert what there thoughts are about my

lungs.

Has your doctor ever had a nasal potential difference

test (NPD)? This test is done to make a CF diagnosis

in difficult cases, and is use in other clinical

research work. Mine was positive.

Hugs:0)

Liz in NS, Canada .... Where it rained today!

e-mail:maryholt12@... or lungsformary@...

Pre-Lung Transplant Journey - For updates please visit my carepage and leave a

message. Thank you!:0)

carepages.com name:maryelizabethholt

) " Miracles happen with love..... " ..... Please support your local children's

hospital.... and " Give with all your might! "

http://iwkfoundation.org/

)Visit.... Children's Miracle Network.... http://www.cmn.org/ )

" I don't give in, I don't give up, and I don't take no for an answer. "

~Doris ~

__________________________________________________

[Guest guest]

Hi to all, I had been on Cymbalta without much effect and my primary MD

asked to try a week of Lyrica. It helps cut down on the nerve pains I

have in my legs BUT I don't like the way it makes my head feels woozy,

slow thought response etc. Has anyone else been on this med or has

tried it in the past. I also take Elavil, no more Cymbalta, Oxycontin

low dose 3X day. One good thing I have done was to stop working back in

Jan 07. I still have pain just don't have to fight the pains at work

anymore. Take care to all, gloria

[Guest guest]

fastgyrl82@... said the following on 4/4/2007 12:42 PM:

> I got the best gift I could possibly ever get as a mother for my birthday. I

called th doctor and they finally called me back around 5pm and to make a long

story short, everything is fine

Happy Birthday