Re: Zithromax: The Story Behind The Scenery

[Guest guest]

Torsten,

how about doing an article on this with the

proper documentation(as here) and I will put into

the

INFORMER, next issue. Maybe start it out with

...i.e. WHY CAN'T ZITROMAX BE USED....WHEN THE

STUDIES SHOW SUCH GREAT AID TO THE PERSONS WITH

CF???. ASK YOUR DOC AT NEXT CLINIC .......WHAT DO

YOU THINK???

Love< grdmbev .

Zithromax: The Story Behind

The Scenery

Hi,

within the last two weeks I saw two postings, both

telling that

patients won't get Zithromax prescribed because

their Pseudomonas is

resistant to Zithromax (generic name is

azithromycin). I just want to

scream out loud, whenever I hear docs telling such

a BS. The whole story

about Zithromax in CF treatment has only very

little, if at all to do

with its antibacterial properties.

While Gould has spent endless hours with

informing the CF

community about Zithromax and how it helped Graham

during the last

years, I have done something else to put things in

perspective and get

the information out to those who need them. At

least I hope that this

helps to understand further what we are talking

about here.

What I have done is, that I have sorted the most

important abstracts

about macrolide antibiotics chronologically,

beginning with the first

observations in Japan. In Japan, because there

exists a disease called

Diffuse Panbroncheolitis (DPB), that is similar in

many ways to the lung

problems in CF. This disease was deadly, because

almost all patients

died within ten years, after their lungs were

colonized with Pseudomonas

aeruginosa.

In the mid-80's few japanese docs tried for the

first time to treat some

of their patients with long-term low-dose

erythromycin (EM). EM is a

macrolide antibiotic, same group as azithromycin

(AZM). It took more

than ten years until this kind of treatment was

officially approved, but

today only a few patients still die from DPB. It

may be an exaggeration,

but in my mind EM is the cure for DPB. And if you

just look closely at

the first title below, it all started with two

patients, who were

already RESISTANT to EM.

Bye

Torsten, dad of Fiona 4wcf

1: Kansenshogaku Zasshi 1992 Jun;66(6):736-42

[Two cases of diffuse panbronchiolitis receiving

long-term erythromycin

(EM) therapy with acute exacerbation due to

EM-resistant pneumococcus].

Yoshimoto E, Sawaki M, Mikasa K, Konishi M, Hamada

K, Takeuchi S, Maeda

K, Kunimatsu M, Narita N, Nakae M.

Second Department of Internal Medicine, Nara

Medical University.

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

****

1: Am J Respir Crit Care Med 1998 Jun;157(6 Pt

1):1829-32

Improvement of survival in patients with diffuse

panbronchiolitis

treated with low-dose erythromycin.

Kudoh S, Azuma A, Yamamoto M, Izumi T, Ando M.

Fourth Department of Internal Medicine, Nippon

Medical School, Tokyo.

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

1: Nippon Rinsho 1999 Sep;57(9):2123-7

[Diffuse panbronchiolitis: DPB].

Azuma A, Kudoh S.

Fourth Dept. Int. Med., Nippon Medical School.

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this

list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

MEDICATIONS OR TREATMENTS.

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

[Guest guest]

OOOOO, I love this idea! Thank you for suggesting it, Bev!

What do you say, Torsten? Could you put together a " call to action "

article directed at cf professionals and the CFF that people with cf

can easily understand, citing the relevant works? I know you CAN,

but are you willing to?

Many of the cf doctors already know about, and believe the reported

effects of macrolides on people with cf, but because it is not a CFF

mandated protocol, many are hesitant to prescribe chronic antibiotic

use of Zithromax. Even Dr. Finder, who believes strongly in

the benefits of Zithromax in patients colonized with pseudomonas,

does not have a single patient on chronic azithromycin.

Perhaps a paper like this, calling the CFF out so to speak, would get

this therapy approved in the cf standard of care, and benefit all our

children.

Torsten, you are so knowledgeable and well-spoken (even for a German

haha!) and I know that an article in the Informer would do a lot to

get the word out about this treatment option. I would appreciate it

a great deal if you would take a stab at this.

~

> Torsten,

> how about doing an article on this with the

> proper documentation(as here) and I will put into

> the

> INFORMER, next issue. Maybe start it out with

> ..i.e. WHY CAN'T ZITROMAX BE USED....WHEN THE

> STUDIES SHOW SUCH GREAT AID TO THE PERSONS WITH

> CF???. ASK YOUR DOC AT NEXT CLINIC .......WHAT DO

> YOU THINK???

>

> Love< grdmbev .

>

[Guest guest]

OOOOO, I love this idea! Thank you for suggesting it, Bev!

What do you say, Torsten? Could you put together a " call to action "

article directed at cf professionals and the CFF that people with cf

can easily understand, citing the relevant works? I know you CAN,

but are you willing to?

Many of the cf doctors already know about, and believe the reported

effects of macrolides on people with cf, but because it is not a CFF

mandated protocol, many are hesitant to prescribe chronic antibiotic

use of Zithromax. Even Dr. Finder, who believes strongly in

the benefits of Zithromax in patients colonized with pseudomonas,

does not have a single patient on chronic azithromycin.

Perhaps a paper like this, calling the CFF out so to speak, would get

this therapy approved in the cf standard of care, and benefit all our

children.

Torsten, you are so knowledgeable and well-spoken (even for a German

haha!) and I know that an article in the Informer would do a lot to

get the word out about this treatment option. I would appreciate it

a great deal if you would take a stab at this.

~

> Torsten,

> how about doing an article on this with the

> proper documentation(as here) and I will put into

> the

> INFORMER, next issue. Maybe start it out with

> ..i.e. WHY CAN'T ZITROMAX BE USED....WHEN THE

> STUDIES SHOW SUCH GREAT AID TO THE PERSONS WITH

> CF???. ASK YOUR DOC AT NEXT CLINIC .......WHAT DO

> YOU THINK???

>

> Love< grdmbev .

>

[Guest guest]

OOOOO, I love this idea! Thank you for suggesting it, Bev!

What do you say, Torsten? Could you put together a " call to action "

article directed at cf professionals and the CFF that people with cf

can easily understand, citing the relevant works? I know you CAN,

but are you willing to?

Many of the cf doctors already know about, and believe the reported

effects of macrolides on people with cf, but because it is not a CFF

mandated protocol, many are hesitant to prescribe chronic antibiotic

use of Zithromax. Even Dr. Finder, who believes strongly in

the benefits of Zithromax in patients colonized with pseudomonas,

does not have a single patient on chronic azithromycin.

Perhaps a paper like this, calling the CFF out so to speak, would get

this therapy approved in the cf standard of care, and benefit all our

children.

Torsten, you are so knowledgeable and well-spoken (even for a German

haha!) and I know that an article in the Informer would do a lot to

get the word out about this treatment option. I would appreciate it

a great deal if you would take a stab at this.

~

> Torsten,

> how about doing an article on this with the

> proper documentation(as here) and I will put into

> the

> INFORMER, next issue. Maybe start it out with

> ..i.e. WHY CAN'T ZITROMAX BE USED....WHEN THE

> STUDIES SHOW SUCH GREAT AID TO THE PERSONS WITH

> CF???. ASK YOUR DOC AT NEXT CLINIC .......WHAT DO

> YOU THINK???

>

> Love< grdmbev .

>

[Guest guest]

Thanks for your thoughts and support Michele. I

think folks should know what is out there. I DO

NOT TELL THEM TO DO IN THE INFORMER............I

JUST WANT TO " INFORM " .THAT'S WHERE IT GOT IYS

NAME:):)

I send to all centers and folks all over the

world..........by THEIR request........that is

3000 of them.

Love & hugs, GrandmomBEV

Re: Zithromax: The Story

Behind The Scenery

OOOOO, I love this idea! Thank you for suggesting

it, Bev!

What do you say, Torsten? Could you put together

a " call to action "

article directed at cf professionals and the CFF

that people with cf

can easily understand, citing the relevant works?

I know you CAN,

but are you willing to?

Many of the cf doctors already know about, and

believe the reported

effects of macrolides on people with cf, but

because it is not a CFF

mandated protocol, many are hesitant to prescribe

chronic antibiotic

use of Zithromax. Even Dr. Finder, who

believes strongly in

the benefits of Zithromax in patients colonized

with pseudomonas,

does not have a single patient on chronic

azithromycin.

Perhaps a paper like this, calling the CFF out so

to speak, would get

this therapy approved in the cf standard of care,

and benefit all our

children.

Torsten, you are so knowledgeable and well-spoken

(even for a German

haha!) and I know that an article in the Informer

would do a lot to

get the word out about this treatment option. I

would appreciate it

a great deal if you would take a stab at this.

~

> Torsten,

> how about doing an article on this with the

> proper documentation(as here) and I will put

into

> the

> INFORMER, next issue. Maybe start it out with

> ..i.e. WHY CAN'T ZITROMAX BE USED....WHEN THE

> STUDIES SHOW SUCH GREAT AID TO THE PERSONS WITH

> CF???. ASK YOUR DOC AT NEXT CLINIC .......WHAT

DO

> YOU THINK???

>

> Love< grdmbev .

>

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this

list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Thanks for your thoughts and support Michele. I

think folks should know what is out there. I DO

NOT TELL THEM TO DO IN THE INFORMER............I

JUST WANT TO " INFORM " .THAT'S WHERE IT GOT IYS

NAME:):)

I send to all centers and folks all over the

world..........by THEIR request........that is

3000 of them.

Love & hugs, GrandmomBEV

Re: Zithromax: The Story

Behind The Scenery

OOOOO, I love this idea! Thank you for suggesting

it, Bev!

What do you say, Torsten? Could you put together

a " call to action "

article directed at cf professionals and the CFF

that people with cf

can easily understand, citing the relevant works?

I know you CAN,

but are you willing to?

Many of the cf doctors already know about, and

believe the reported

effects of macrolides on people with cf, but

because it is not a CFF

mandated protocol, many are hesitant to prescribe

chronic antibiotic

use of Zithromax. Even Dr. Finder, who

believes strongly in

the benefits of Zithromax in patients colonized

with pseudomonas,

does not have a single patient on chronic

azithromycin.

Perhaps a paper like this, calling the CFF out so

to speak, would get

this therapy approved in the cf standard of care,

and benefit all our

children.

Torsten, you are so knowledgeable and well-spoken

(even for a German

haha!) and I know that an article in the Informer

would do a lot to

get the word out about this treatment option. I

would appreciate it

a great deal if you would take a stab at this.

~

> Torsten,

> how about doing an article on this with the

> proper documentation(as here) and I will put

into

> the

> INFORMER, next issue. Maybe start it out with

> ..i.e. WHY CAN'T ZITROMAX BE USED....WHEN THE

> STUDIES SHOW SUCH GREAT AID TO THE PERSONS WITH

> CF???. ASK YOUR DOC AT NEXT CLINIC .......WHAT

DO

> YOU THINK???

>

> Love< grdmbev .

>

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this

list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Thanks for your thoughts and support Michele. I

think folks should know what is out there. I DO

NOT TELL THEM TO DO IN THE INFORMER............I

JUST WANT TO " INFORM " .THAT'S WHERE IT GOT IYS

NAME:):)

I send to all centers and folks all over the

world..........by THEIR request........that is

3000 of them.

Love & hugs, GrandmomBEV

Re: Zithromax: The Story

Behind The Scenery

OOOOO, I love this idea! Thank you for suggesting

it, Bev!

What do you say, Torsten? Could you put together

a " call to action "

article directed at cf professionals and the CFF

that people with cf

can easily understand, citing the relevant works?

I know you CAN,

but are you willing to?

Many of the cf doctors already know about, and

believe the reported

effects of macrolides on people with cf, but

because it is not a CFF

mandated protocol, many are hesitant to prescribe

chronic antibiotic

use of Zithromax. Even Dr. Finder, who

believes strongly in

the benefits of Zithromax in patients colonized

with pseudomonas,

does not have a single patient on chronic

azithromycin.

Perhaps a paper like this, calling the CFF out so

to speak, would get

this therapy approved in the cf standard of care,

and benefit all our

children.

Torsten, you are so knowledgeable and well-spoken

(even for a German

haha!) and I know that an article in the Informer

would do a lot to

get the word out about this treatment option. I

would appreciate it

a great deal if you would take a stab at this.

~

> Torsten,

> how about doing an article on this with the

> proper documentation(as here) and I will put

into

> the

> INFORMER, next issue. Maybe start it out with

> ..i.e. WHY CAN'T ZITROMAX BE USED....WHEN THE

> STUDIES SHOW SUCH GREAT AID TO THE PERSONS WITH

> CF???. ASK YOUR DOC AT NEXT CLINIC .......WHAT

DO

> YOU THINK???

>

> Love< grdmbev .

>

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this

list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Hi Grandmom Bev,

sorry, I did not realize that you were going to send the news about

Emma to CFparents too, so I jumped the gun.

Regarding the Zithromax article, I have asked Gould, whether we

should do that together or not. I don't want her to think that I took

something away from her. And I think we need to quote more from the

articles than what is available for free on Pubmed. So we have to

think about copyright infringements too. But aside from that I would

be happy to see something about AZM and CF printed in your newsletter.

Six years have gone since the first mentioning of Macrolides and CF

and to me we don't have seen much progress until now. The docs are

still fiddling around with the doses, some still discuss whether it's

better to give Klacid (clarithromycin) instead of Zithromax and I

haven't heard anythinf about a double-blind, placebo-controlled study,

not to speak about long-term studies at all.

Anything to increase the pressure on docs, researchers and

foundations is okay to me.

Bye

Torsten

[Guest guest]

Even an article with those kind of thoughts

..Asking " I wonder why we haven't heard about "

Type of article. I can always get permission to

reprint.I don't charge for newsletter and it is

EDUCATIONAL paper. Thanks

BEV-------

Re: Zithromax: The Story

Behind The Scenery

Hi Grandmom Bev,

sorry, I did not realize that you were going to

send the news about

Emma to CFparents too, so I jumped the gun.

Regarding the Zithromax article, I have asked

Gould, whether we

should do that together or not. I don't want her

to think that I took

something away from her. And I think we need to

quote more from the

articles than what is available for free on

Pubmed. So we have to

think about copyright infringements too. But aside

from that I would

be happy to see something about AZM and CF printed

in your newsletter.

Six years have gone since the first mentioning of

Macrolides and CF

and to me we don't have seen much progress until

now. The docs are

still fiddling around with the doses, some still

discuss whether it's

better to give Klacid (clarithromycin) instead of

Zithromax and I

haven't heard anythinf about a double-blind,

placebo-controlled study,

not to speak about long-term studies at all.

Anything to increase the pressure on docs,

researchers and

foundations is okay to me.

Bye

Torsten

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this

list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Even an article with those kind of thoughts

..Asking " I wonder why we haven't heard about "

Type of article. I can always get permission to

reprint.I don't charge for newsletter and it is

EDUCATIONAL paper. Thanks

BEV-------

Re: Zithromax: The Story

Behind The Scenery

Hi Grandmom Bev,

sorry, I did not realize that you were going to

send the news about

Emma to CFparents too, so I jumped the gun.

Regarding the Zithromax article, I have asked

Gould, whether we

should do that together or not. I don't want her

to think that I took

something away from her. And I think we need to

quote more from the

articles than what is available for free on

Pubmed. So we have to

think about copyright infringements too. But aside

from that I would

be happy to see something about AZM and CF printed

in your newsletter.

Six years have gone since the first mentioning of

Macrolides and CF

and to me we don't have seen much progress until

now. The docs are

still fiddling around with the doses, some still

discuss whether it's

better to give Klacid (clarithromycin) instead of

Zithromax and I

haven't heard anythinf about a double-blind,

placebo-controlled study,

not to speak about long-term studies at all.

Anything to increase the pressure on docs,

researchers and

foundations is okay to me.

Bye

Torsten

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this

list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Even an article with those kind of thoughts

..Asking " I wonder why we haven't heard about "

Type of article. I can always get permission to

reprint.I don't charge for newsletter and it is

EDUCATIONAL paper. Thanks

BEV-------

Re: Zithromax: The Story

Behind The Scenery

Hi Grandmom Bev,

sorry, I did not realize that you were going to

send the news about

Emma to CFparents too, so I jumped the gun.

Regarding the Zithromax article, I have asked

Gould, whether we

should do that together or not. I don't want her

to think that I took

something away from her. And I think we need to

quote more from the

articles than what is available for free on

Pubmed. So we have to

think about copyright infringements too. But aside

from that I would

be happy to see something about AZM and CF printed

in your newsletter.

Six years have gone since the first mentioning of

Macrolides and CF

and to me we don't have seen much progress until

now. The docs are

still fiddling around with the doses, some still

discuss whether it's

better to give Klacid (clarithromycin) instead of

Zithromax and I

haven't heard anythinf about a double-blind,

placebo-controlled study,

not to speak about long-term studies at all.

Anything to increase the pressure on docs,

researchers and

foundations is okay to me.

Bye

Torsten

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this

list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

MEDICATIONS OR TREATMENTS.

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