RE: Digest Number 1486Marsha, Deb and all.

December 22, 2006

Bronch is not a life sentence, it will not kill you. you can and will more than

likely live as long as your past family members.

Life doesn,t have to be shortened.

Just managed better, and yes maybe with a lot more caution to many things.

Bronchiectasis , is not a notifianble disease, nor is atypical TB.

So unless you wish to tell people its only your business.

As for lots of meds for the atypical form of TB, well you need similar meds and

maybe 1-2 more for the TB as you take for the bronc, and like myself, you may at

a later stage when

once dx become more the owner of your illness and disease . / disability

You will have learned new coping skills, seek out more correct treatments etc

and really may end up with few or no symptoms.

Thus enabling you to get on with the act of living.

Please don,t think I am trying to be harsh or uncaring, just that one must

remain positive to get good results, and one can only learn more and more

thoroughly once they have accepted their

illnesses etc.

Many , many people live very normal lives ( well as normal as most)/

Some do cough incessantly etc, some don,t.

I did cough for many years, well into the 25 yrs range, and cough no more,

havent for well over 12 years, so there is LOTS of hope for a good life ahead.

as long as you let yourself live.

The TB meds can protect others from getting infections etc, however generally

atypical TB you take these specific meds

only for reasonably short periods.

Hower if you have or had TB ( the infectious type) you will be required to take

them all your life, so you can live a normal life without endangering others.

I have been a HIV aids home care nurse for over 30 years, work with the very

close to death, been there right tothe end with many who have TB.

never needed a mask etc unless dressing wounds etc, or of course for body fluids

etc.

But not the cough.

So please do not fear Deb.

If you had the real ( infectious TB) you would not be in your home , nor without

a bed in a hospital/ hospice etc for infectious diseases, they do not and will

not takes such risks, to have you out there SPREADING the disease.

What a shame you didn,t know more to clarify this, so not to put all your

friends, family and workmates in such a worried state.

I have had a friend years ago, be told he had hepatitis C, and that he would be

dead in 10 years etc.

Unfortunately for him he had spoken to another with hep c, who only days later

suicided.

He too attempted to take his life, thats how I met him.

He is doing very well, has wonderful job, and goes overseas twice a year, he has

had this hep c for 17 years.

He will probably out live me.

Deb once you have the correct name, for the illness/ disease you have, maybe you

should think about getting a letter from doctor to help you clarify things with

work and family.

Don,t you think work would be trying to put you off permanatly , if they thought

you were spreading disease.

This also shows here a lot of ignorance, on your yourplace as well as the very

foolish doctor.

For not making sure you knew quite well that you did not have the very

contagious TB etc. how irresponsible of him/ her.

I would be reporting them very quickly.

Even if you misunderstood, didn,t you think to ask lots of ??????????????? once

been told you had TB, one would think the

shock, the look on your face etc, would be enough for the doc to realise he had

given you the wrong impression, I think he is both uncaring and unprofessinal,

I would be looking for a new doctor, a 2nd opinion on whatever you have before

going any further.

Hope this has helped a little, this group is a wonderful

place to ask questions, seek opinions and maybe take some of the info you get

from here with you yo your doctors, ( your NEW) doctors.

Cheers,

Sandy Australia

Carer/ Consumer Representative

Central Area, Mental Health Clinical network.

" Sec/ Co -ord HBCAG & GEMS.

Consumer/ carer rep to FCIMHS

Community Consultant on Mental Health /Fraser Coast.

Sandy R .

" Nothing about us without us "

HBCAG " Promoting Excellence in Mental Health "

________________________________

> Date: Fri, 22 Dec 2006 09:04:27 +0000

> From: bronchiectasis

> To: bronchiectasis

> Subject: Digest Number 1486

>

> Bronchiectasis Support Group

<http://groups.yahoo.com/group/bronchiectasis;_ylc=X3oDMTJkZDNyaW5uBF9TAzk3MzU5N\

zE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BHNlYwNoZHIEc2xrA2hwaARzdGltZQMxM\

TY2Nzc4MjY3>

> Messages In This Digest (20 Messages)

> 1a.

> Re: now what From: Sunniesback55@...

> 1b.

> Re: now what From: marsha.granville@...

> 1c.

> Re: now what From: Glass

> 1d.

> Re: now what From: Debbie

> 1e.

> Re: now what From: Debbie

> 1f.

> Re: now what From: Foebegirl@...

> 1g.

> Re: now what From: marsha granville

> 1h.

> Re: now what From: ecbauer954@...

> 1i.

> Re: now what From: Janet Duhe

> 1j.

> Re: now what From: Foebegirl@...

> 1k.

> Re: now what From: Sunniesback55@...

> 2a.

> New! My mother - bronch/pseudomonas problems From: lorimcvicker

> 2b.

> Re: New! My mother - bronch/pseudomonas problems From: Sunniesback55@...

> 2c.

> Re: New! My mother - bronch/pseudomonas problems From: lorimcvicker

> 2d.

> Re: New! My mother - bronch/pseudomonas problems From: Sunniesback55@...

> 2e.

> Re: New! My mother - bronch/pseudomonas problems From: Sunniesback55@...

> 3.

> thoughts From: Debbie

> 4.

> more From: Debbie

> 5a.

> saw Dr From: Debbie

> 5b.

> Re: saw Dr From: Sunniesback55@...

> View All

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> Messages

> 1a.

> Re: now what

<http://groups.yahoo.com/group/bronchiectasis/message/14323;_ylc=X3oDMTJycmN1djd\

kBF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0MzIzBHN\

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> Posted by: " Sunniesback55@... " Sunniesback55@...

<mailto:Sunniesback55@...?Subject=%20Re:%20now%20what>

> Thu Dec 21, 2006 1:23 am (PST)

> In a message dated 12/21/2006 1:08:17 AM Eastern Standard Time,

> debres@... writes:

> I can't remember the extact wording. But he said I was not able to go to

> work.

> This was from my GP. He is calling the heath clinic tomorrow and I have a

> appt with

> the lung DR at 3:45pm. I am very confused. He said there will be a number

> of drugs I 'll

> need to take.

> So there is a TB that is non-infection?So there is a TB that is

> non-infection?<WBR>??

> yes.

> I've learned so much from this list group. Deb, I suggest you copy out that

> letter from Liz and take with you and confront him with it. Get another

> opinion ..show the letter from Liz to your GP as well as your

> pulmonoligist..insist they test for MAC before going any further.

> Good Luck and keep your chin up..

> Sandie in MD

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

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> 1b.

> Re: now what

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> Posted by: " marsha.granville@... " marsha.granville@...

<mailto:marsha.granville@...?Subject=%20Re:%20now%20what>

> Thu Dec 21, 2006 7:14 am (PST)

> Yes, it is called " Atypical TB. " That's what they thought I had but could not

find the bacteria. It will require about 18 months of 3 different antibiotics.

Just take it day by day and you will be OK. I am thinking of you.

> Did the take sputum tests? Is that how they identified the bacteria? You just

have to be sure they are treating you for the right thing. Ask them about

Bronchiectasis and how they know that is not what you have. You have to be

vigilant with doctors--they are not always all we would like them to be.

> Marsha/NYC

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> 1c.

> Re: now what

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> Posted by: " Glass " rajeg@...

<mailto:rajeg@...?Subject=%20Re:%20now%20what> taffy10092000

<http://profiles.yahoo.com/taffy10092000>

> Thu Dec 21, 2006 7:19 am (PST)

> Hi Debbie,

> I have the non-contagious form of TB. It is called mycobacterium avium complex

or MAC. It was diagnosed about 4 years ago but at that time, they said it was

non-invasive so I did not have to take the treatment at that time. Last March,

they did another sputum test and CAT scan and now I am on the treatment. (was

losing weight, was having night sweats and getting sick more often.) The drugs I

take are Azithromycin, Rifampin and Ethambutol. I'm still not on full doses yet

because of reactions to the medications, but most people have no problems. Even

with the reactions I have had, I must admit, my energy level has increased

tremendously from last year. There are still the problems with the bronch. but

I'm having my pulmonary doc keep treating this also--yes I need to tell him to

do this. Sometimes they think that if one thing is being treated the other will

go away also, but that is not the case.

> Good luck on your appointment, keep your spirits high. It was a real downer

for me at first when I found out about the MAC, but I'm accepting it and

hopefully in the next year it will be in remission and I will be off the drugs.

> Take care.

> Jan in St. Louis, MO

> Debbie > wrote:

> My Doc just called me. I have TB.

> I had to leave work. He said the heath units are going to call me tomorrow and

not to worry.

> I feel great and that is a good thing. He said I'll go on med's and its very

treatable. Not the way I wanted to get Christmas off from work. Just ruined my

Christmas

> Anyone go thru this???

> Deb

> Back to top

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> 1d.

> Re: now what

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> Posted by: " Debbie " debres@...

<mailto:debres@...?Subject=%20Re:%20now%20what> peppergal_111

<http://profiles.yahoo.com/peppergal_111>

> Thu Dec 21, 2006 7:26 am (PST)

> thank you I will

> _____

> From: bronchiectasis <mailto:bronchiectasis >

[mailto:bronchiectasis <mailto:bronchiectasis >]

> On Behalf Of Sunniesback55@...

> Sent: Thursday, December 21, 2006 1:20 AM

> To: bronchiectasis <mailto:bronchiectasis >

> Subject: Re: now what

> In a message dated 12/21/2006 1:08:17 AM Eastern Standard Time,

> debres@... writes:

> I can't remember the extact wording. But he said I was not able to go to

> work.

> This was from my GP. He is calling the heath clinic tomorrow and I have a

> appt with

> the lung DR at 3:45pm. I am very confused. He said there will be a number

> of drugs I 'll

> need to take.

> So there is a TB that is non-infection??? I asked him if I was conjatious

> and he said

> yes.

> I've learned so much from this list group. Deb, I suggest you copy out that

> letter from Liz and take with you and confront him with it. Get another

> opinion ..show the letter from Liz to your GP as well as your

> pulmonoligist..insist they test for MAC before going any further.

> Good Luck and keep your chin up..

> Sandie in MD

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

> Back to top

> Reply to sender <mailto:debres@...?Subject=Re:%20now%20what> | Reply to

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> 1e.

> Re: now what

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> Posted by: " Debbie " debres@...

<mailto:debres@...?Subject=%20Re:%20now%20what> peppergal_111

<http://profiles.yahoo.com/peppergal_111>

> Thu Dec 21, 2006 8:01 am (PST)

> Atypical ??? sounds right.

> I had a blood test and they were down in my lungs last thursday.

> K, I'll add the Bron question to my list.

> Yes I have to be vigilant and get all my facts straight. Right now I've got

> alot of family and co-workers freaking out.

> I'm sure its all around the company by now.

> My son did some reading on it and he feels alittle better. He said once I'm

> on the med's I am no longer

> catchy.

> thank you

> _____

> From: bronchiectasis <mailto:bronchiectasis >

[mailto:bronchiectasis <mailto:bronchiectasis >]

> On Behalf Of marsha.granville@...

> Sent: Thursday, December 21, 2006 7:15 AM

> To: bronchiectasis <mailto:bronchiectasis >

> Subject: Re: now what

> Yes, it is called " Atypical TB. " That's what they thought I had but could

> not find the bacteria. It will require about 18 months of 3 different

> antibiotics. Just take it day by day and you will be OK. I am thinking of

> you.

> Did the take sputum tests? Is that how they identified the bacteria? You

> just have to be sure they are treating you for the right thing. Ask them

> about Bronchiectasis and how they know that is not what you have. You have

> to be vigilant with doctors--they are not always all we would like them to

> be.

> Marsha/NYC

> Back to top

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> 1f.

> Re: now what

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> Posted by: " Foebegirl@... " Foebegirl@...

<mailto:Foebegirl@...?Subject=%20Re:%20now%20what>

> Thu Dec 21, 2006 12:05 pm (PST)

> I think you will get over TB, but bronchieactasis would be with you for

> life. That is

> the good news.

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> Re: now what

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> Posted by: " marsha granville " marsha.granville@...

<mailto:marsha.granville@...?Subject=%20Re:%20now%20what>

> Thu Dec 21, 2006 1:17 pm (PST)

> That's right Bronchiectasis is a life-sentence. I don't think about it in

> those terms very often but I know full well that it is and that was what

> took me the longest time to get over when I was diagnosed.

> I am going for a job interview after the first of the year, a big job, and

> I am concerned that I am not being upfront with them if I don't mention the

> B but I would be a fool to do so. If I get the job, they will hear me cough

> and in time maybe get to know more about it. Does anyone think I am being

> dishonest about this? It's not that I lose time from work because of the

> B, because I don't.

> Marsha/NYC

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> Posted by: " ecbauer954@... " ecbauer954@...

<mailto:ecbauer954@...?Subject=%20Re:%20now%20what>

> Thu Dec 21, 2006 3:15 pm (PST)

> If they don't ask, don't offer; you need a chance. Best of luck with your

interview.

> Eileen-FL

> -- marsha granville

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> Date: Thu, 21 Dec 2006 16:16:07 -0500

> Subject: Re: now what

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