RE: USA doctors that know Bronch ??? Who has one??

[Guest guest]

Dear Mark,

I don’t remember if I sent you this before, it may be useful, although not US...

www.australiandoctor.com.au/ htt/pdf/AD_HTT_031_038___MAY20_05.pdf

The article was written by two docs in Aust, maybe they could provide useful links to info you need? It is by far the best info I have yet come across. I would recommend UK websites for info, bronch is far more recognised there (high mortality rate until 1950s) whereas relatively unknown/unrecognised in US (and to some degree in Aust).

Sadly, most of us with it have to find out from each other and from the internet, simply because drs don’t know. Your best source (maybe not perfect, is time-consuming, but does have value) is the internet. I have sent a few sources out, as have others. I can try and forward some if you didn’t receive. However, because bronch is such an idiopathic syndrome, it is difficult to pin it down – only you know the relevant aspects of your wife’s condition. Please, though, don’t hesitate to ask still – all of us help each other hugely.

If you can tell me her particular infection (usually more than one organism) – bacteria - which?, fungal? both? Frequency, duration, tests (what kind of) - these all help narrow down the scope to bring into focus the info you need.

Stay connected,

Joy

(from Oz)

--

Sentient beings, all our very own mothers, are as limitless as space

[Guest guest]

Hi , lucky you for finding a dr and having a center near you. So, what has this new Dr been having you do and take?

Thanks, Kay

-------------- Original message -------------- From: Nan3@...

I go to Dr. McNally at University of Connecticut Health Center in Farmington, CT. He told me at my last visit that a colleague of his at the University is actually going to be creating a Bronchiectasis Center at the University. I've had very good results since I started seeing him. It will be interesting to see what kind of treatment and research they may end up doing in this new center.

Start the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Dear Sadie, Where in FL? What is his phone number if you please? Thank you, Eieen-FLSunniesback55@... wrote: Anywhere in the world? yes I can.. Dr Brantley is one of our own Alpha specialty drs in FL..he's a researcher and treats his patients for

bronchiectasis.. My dr also treats my bronchiectasis well..there are dr's out there..just few and far between.. Sandie in MD USA Never Look Down on SomeoneUnless You're Willing to Help Them Up Start the year off right. Easy ways to stay in shape in the new year.

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[Guest guest]

Well, first of all, in the range of mild to severe bronchiectasis I'm not that bad. However, I was having repeated rounds of pneumonia putting me in the hospital. I was at the point where I was beginning to wonder if the rest of my life was going to be like this. One year I was in the hospital four times and out of work several weeks each time. And I have a chronic cough (still, unfortunately) that drives me nuts! At first he tried a few things, added a second steroid, but finally decided to put me on the rotating antibiotics. I take Ampicillin and Doxycyline - 10 days out of the month every other month, alternating them. It's now been a year and I haven't had pneumonia, in fact I've only had one cold and I actually recovered from it without it turning into something horrible. You get to the point where you're paranoid about being around anyone who has a sniffle! Now I've got to get myself going and build up my stamina again. I let myself get down so low that I've had a hard time getting my energy back. After a year, it's time to put it aside now and get moving!

And this is the routine I'm starting again. I'll be going on Ceftin for 14 days..skip a week and then another med <which hasnt been decided yet ..he wants to see me first, I'm due for a visit anyway>..long term rotating med treatment seems to be the only way to control these flareups..and like you, I"M SO TIRED OF being SICK and the god awful arthritic pain and fatigue..I'm just about ready to do anything as long as it keeps me from having these flareups every 10 days..

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Interesting you mention arthritic pain - how is that connected? I also have a lot of arthritis pain.

Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Hi ..I know with many viral and bacterial infections we'll have body pain..but someone here posted a link about the association of arthritic pain w/bronchiectasis.

It was an eye opener for me. Rheumatoid Arthritis runs in my family..so on that note I mentioned this to my dr who has run some tests, including the test looking for the RA factor..

This link, which I found to be one of the most informative on bronchiectasis yet explains this a little..

http://www.australiandoctor.com.au/HTT/PDF/ad_htt_031_038___may20_05.pdf

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

I think it is related to the compromprised immune system.Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

I think that was me. I have been having a lot of pain. I do research on the internet. Just put in bronchiectasis and rheumatoid arthritis (or whatever you want to look at) and do a search. That is how I get a lot of my info.

MarilynWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Recall the article “How to treat Bronchiectasis’ and the reference to rheumatoid arthritis and other inflammatory joint diseases common to bronch, as a syndrome,

joy

[Guest guest]

Hi ,

Read the article “How to Treat Bronchiectasis” which you should find if you go to the following site:

http://www.australiandoctor.com.au/HTT/PDF/ad_htt_031_038___may20_05.pdf

It is interesting so many people have mentioned experiencing a lot of pain as well. It is something I have found increases acutely when I have an infection but the times it has been bad enough I’m always too sick because of bronch for the pain to be ever followed up. What little has been ‘investigated’ ha ha, says oh well, yes a little bit of arthritis, just take panadol...

If only there was a way to get this kind of info out to the medical professionals, and teaching hospitals etc...

joy

[Guest guest]

thanks, Sandie, I found the button to click on and enlarged it a great deal. I'll read it tomorrow. I appreciate everyone helping me.

To: bronchiectasis From: Sunniesback55@...Date: Tue, 29 Jan 2008 22:20:45 -0500Subject: Re: USA doctors that know Bronch ??? Who has one??

yeap..but if you look there's a magnifying glass at the top in the toolbar

click on that..then go to the text and click till it largens to the size that's readable for you

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them Up

Start the year off right. Easy ways to stay in shape in the new year. Need to know the score, the latest news, or you need your Hotmail®-get your "fix". Check it out.

[Guest guest]

Marilyn,

Thanks for the feedback – my own doc gave me a photocopy of it, and it took me a while to locate it on the net – seems others, like myself, have found this the best info in a long time. I have tried to contact either of them, no luck so far. Maybe I’ll try again, not sure how...

And yes, do I hear you loud and clear about the depression – how often have I not had adequate treatment for infx because of that one! My depression may one day make me not so much suicidal (another favourite question) but may drive me to commit murder!!! (only joking!)

We have Oprah televised here, but I don’t watch her enough to have heard of Dr Oz (I’m sure nothing to do with Australia! - perhaps the wizard?). I’ll check it out. I’ll certainly be waiting to hear if you got a response. Well done you.

I feel like it’s time we had a world-wide class action on this – the upcoming generation with have a harder time than us, because of abx resistance... And I suspect from every story I’ve read on this website that the onset is not at mature age, but rather has been undx until set in for many years – and that ties in with a brief mention of ‘reversible bronch’ – has to be dx quickly, and never is.

Joy

(from Oz)

--

Sentient beings, all our very own mothers, are as limitless as space

[Guest guest]

Thanks!

[Guest guest]

Anywhere in the world?

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Mach1of8@...

Sent: Sunday, January 20, 2008

10:20 AM

To: bronchiectasis

Subject: Re: USA doctors

that know Bronch ??? Who has one??

Can anyone tell me the name and location

of a doctor that has

ALOT of experience with Bronch patients??

I f you have a doctor that seems to know

its diagnosis, treatment and aggravations...please forward the name ,

number and address. Maybe even a story about them and their willingness

to learn about Bronch and find the best treatment .

Thank you.

Mark

Namaste....

I honor the place in you

in which the entire Universe dwells,

I honor the place in you

which is of Love, of Truth, of Light and of Peace,

When you are in that place in you,

and I am in that place in me,

we are One.

Start the year off right. Easy

ways to stay in shape in the new year.

[Guest guest]

Joan in Melbourne fla has names if needed.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Eileen Bauer

Sent: Thursday, January 24, 2008

3:30 PM

To: bronchiectasis

Subject: Re: USA doctors

that know Bronch ??? Who has one??

Dear Sadie,

Where in FL? What is his phone number if you please? Thank

you,

Eieen-FL

Sunniesback55aol

wrote:

In a message

dated 1/20/2008 12:23:16 P.M. Eastern Standard Time, queenmum32909cfl (DOT) rr.com

writes:

Anywhere in the world?

yes I can..

Dr Brantley is

one of our own Alpha specialty drs in FL..he's a researcher and treats his

patients for bronchiectasis..

My dr also treats

my bronchiectasis well..there are dr's out there..just few and far between..

Sandie in MD USA

Never Look Down on Someone

Unless You're Willing to Help Them Up

Start the year off right. Easy

ways to stay in shape in the new year.

Looking for last minute shopping deals? Find

them fast with Yahoo! Search.