Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 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 SomeoneUnless You're Gonna Help Them Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Hi Debbie, Are you certain he said its TB? There is also a form of non-TB infection. It can act like TB. I had one type-called mycobacterium avium complex. It required 18-months of treatment and closely followed up by my ID specialist. I've almost been off this particular antibiotic cocktail for one year. Thus far the MAC bacteria has not come back, although it can we hope it does not. During the antibiotic treatment he closely followed my acid fast cultures. This is how the non-TB bacteria is diagnosed. Although it can act like TB its not. Fortunately,non-TB is not contagious. My ID specialist choose to treat the MAC aggressively because it was causing symptoms and making my lungs worse. Hugs:0) LizPre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) carepages.com name: maryelizabethholt Please watch: Live Life Then Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 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. agh. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of HoltSent: Wednesday, December 20, 2006 9:47 PMTo: bronchiectasis Subject: Re: now what Hi Debbie, Are you certain he said its TB? There is also a form of non-TB infection. It can act like TB. I had one type-called mycobacterium avium complex. It required 18-months of treatment and closely followed up by my ID specialist. I've almost been off this particular antibiotic cocktail for one year. Thus far the MAC bacteria has not come back, although it can we hope it does not. During the antibiotic treatment he closely followed my acid fast cultures. This is how the non-TB bacteria is diagnosed. Although it can act like TB its not. Fortunately,non-TB is not contagious. My ID specialist choose to treat the MAC aggressively because it was causing symptoms and making my lungs worse. Hugs:0) Liz Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! )carepages.com name: maryelizabethholt Please watch: Live Life Then Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 Dear Debbie, I'm sorry to hear about your fright. There are Nontuberculous Mycobacteria (NTM). Quite common in bronchiectasis. The following link will take you to National Jewish Medical and Research Center. http://nationaljewish.org/disease-info/diseases/nts-mycobac/index.aspx Hoping this is helpful, and best wishes for your appointment. My thoughts are with you. Hugs:0) Lz Debbie wrote: 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. agh. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of HoltSent: Wednesday, December 20, 2006 9:47 PMTo: bronchiectasis Subject: Re: now what Hi Debbie, Are you certain he said its TB? There is also a form of non-TB infection. It can act like TB. I had one type-called mycobacterium avium complex. It required 18-months of treatment and closely followed up by my ID specialist. I've almost been off this particular antibiotic cocktail for one year. Thus far the MAC bacteria has not come back, although it can we hope it does not. During the antibiotic treatment he closely followed my acid fast cultures. This is how the non-TB bacteria is diagnosed. Although it can act like TB its not. Fortunately,non-TB is not contagious. My ID specialist choose to treat the MAC aggressively because it was causing symptoms and making my lungs worse. Hugs:0) Liz Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! )carepages.com name: maryelizabethholt Please watch: Live Life Then Give Life! - UK http://www.youtube.com/watch?v=Nz33i6prkuQ. "Don't take your organs to Heaven, heaven knows we need them here." __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 I think you will get over TB, but bronchieactasis would be with you for life. That is the good news. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 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, MODebbie 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 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 ] On Behalf Of marsha.granville@...Sent: Thursday, December 21, 2006 7:15 AMTo: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 thank you I will From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Thursday, December 21, 2006 1:20 AMTo: bronchiectasis Subject: Re: now what 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 SomeoneUnless You're Gonna Help Them Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 You are not being dishonest as long as you are able to do the work. People have a right to some privacy about health matters. When I cough I just tell folks it is a chronic thing and that I am not contagious. Works for me. Hope it works for you. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 If they don't ask, don't offer; you need a chance. Best of luck with your interview.Eileen-FL -- marsha granville wrote:Return-Path: <sentto-4056817-14347-1166735845-ecbauer954=juno.com@...>Received: from mx26.nyc.untd.com (mx26.nyc.untd.com [10.140.24.86])by maildeliver14.nyc.untd.com with SMTP id AABC2X8RHAMV4BK2for (sender <sentto-4056817-14347-1166735845-ecbauer954=juno.com@...>);Thu, 21 Dec 2006 13:17:27 -0800 (PST)Received: from n18b.bullet.sp1.yahoo.com (n18b.bullet.sp1.yahoo.com [69.147.64.128])by mx26.nyc.untd.com with SMTP id AABC2X8RHAAFMYESfor (sender <sentto-4056817-14347-1166735845-ecbauer954=juno.com@...>);Thu, 21 Dec 2006 13:17:27 -0800 (PST)Comment: DomainKeys? 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21 Dec 2006 16:14:54 -0500Received: from smtp01.lnh.mail.rcn.net (smtp01.lnh.mail.rcn.net [207.172.4.11])by mr08.lnh.mail.rcn.net (MOS 3.7.5a-GA)with ESMTP id HYI94590;Thu, 21 Dec 2006 16:14:48 -0500 (EST)Received: from 209-122-189-118.c3-0.avec-ubr1.nyr-avec.ny.cable.rcn.com (HELO [209.122.189.118]) ([209.122.189.118]) by smtp01.lnh.mail.rcn.net with ESMTP; 21 Dec 2006 16:14:48 -0500User-Agent: Microsoft-Outlook-Express-Macintosh-Edition/5.02.2022To: <bronchiectasis >Message-ID: In-Reply-To: X-Junkmail-Status: score=42/50, host=mr08.lnh.mail.rcn.netX-Junkmail-SD-Raw: score=suspect(7),refid=str=0001.0A090209.458AF7E7.006A,ss=2,fgs=0,ip=207.172.4.11,so=2006-05-09 23:27:51,dmn=5.2.121/2006-09-27X-Originating-IP: 207.172.157.102X-eGroups-Msg-Info: 1:0:0:0Sender: bronchiectasis MIME-Version: 1.0Mailing-List: list bronchiectasis ; contact bronchiectasis-owner Delivered-To: mailing list bronchiectasis List-Id: <bronchiectasis.yahoogroups.com>Precedence: bulkList-Unsubscribe: <mailto:bronchiectasis-unsubscribe >Date: Thu, 21 Dec 2006 16:16:07 -0500Subject: Re: now whatReply-To: bronchiectasis X-Yahoo-Newman-Property: groups-email-ffContent-Type: multipart/alternative; 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I don't think about it inthose terms very often but I know full well that it is and that was whattook 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, andI am concerned that I am not being upfront with them if I don't mention theB but I would be a fool to do so. If I get the job, they will hear me coughand in time maybe get to know more about it. Does anyone think I am beingdishonest about this? It's not that I lose time from work because of theB, because I don't.Marsha/NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 You go girl! Just worry about today not tomorrow ... life-sentence huh? Is a "cure" around the corner perhaps? We don't know what our future lies but we can only live for today. And don't mention your condition at the new big job opportunityl, and no, you're not being dishonest. Why give them a reason to lock you out before you have a chance to begin and prove yourself? I am a working girl myself and it is amazing how wonderful everyone has been to me around here, very, very, accommodating. If they like you, you're fine! Until or if ever I get so sick and need oxygen daily that's when I will leave but I'm not quite there yet and you aren't either!! We are young still [i'm 59] and not retired by a long shot. I love being busy and chatting with people. Takes my mind off my ailments too! No, I am not ready to hang my boots up yet! I also do a little acting on the side too, haven't been able to this past year except for a couple of paying murder mysteries but I plan on auditioning in the new year for a play coming up. So you see, I try to live my life as normal as possible. My pulmonary doctor is marvellous and we have a good understanding and he has taught me a lot of things to help with my disease. Plus I will learn more when I go to the respiratory program in January for a six week course [COPD] and my office has worked out my hours for me to be able to do both! Yeah! Well merry merry Christmas to everyone ... hang in there ... we all need each other and my prayers go out to those with special needs right now. Love Janet in California marsha granville wrote: That's right Bronchiectasis is a life-sentence. I don't think about it inthose terms very often but I know full well that it is and that was whattook 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, andI am concerned that I am not being upfront with them if I don't mention theB but I would be a fool to do so. If I get the job, they will hear me coughand in time maybe get to know more about it. Does anyone think I am beingdishonest about this? It's not that I lose time from work because of theB, because I don't.Marsha/NYC ....love Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 That's right Bronchiectasis is a life-sentence. I don't think about it inthose terms very often but I know full well that it is and that was whattook 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, andI am concerned that I am not being upfront with them if I don't mention theB but I would be a fool to do so. If I get the job, they will hear me coughand in time maybe get to know more about it. Does anyone think I am beingdishonest about this? It's not that I lose time from work because of theB, because I don't. Marsha..Take it from one who's been there. I can't work any more (I'm 56) and I miss it terribly. I miss the income and the social aspect of ' being out there '. You have a right to your privacy. If you feel you can do the job, then go for the interview and shine ! It's not your obligation to tell them anything. And in my own humble opinion, it's best not to. If they ask " is there any physical reason you feel you couldn't do this job? "..tell them no. You wouldn't be applying for the job if you thought you couldn't do it right? You're not lying to them. Trust me, I know. I felt the ' need ' to be honest, when I was able to work, at an interview and that was a slam dunk right out the door, TWICE..I didnt get the job. People are funny, especially about words like " chronic " or big words like " bronchiectasis "..you can assure them it's not a threat to anyone but they won't believe you. Best to leave well enough alone. I feel the same way. It's a life sentence, yes indeed. It's as much a part of me , now , as my arms, legs and eyes. We just have to know how to take better care of ourselves, manage it, and go out there and live the best we can..do the best we can with what we've got. Good luck on your interview.. Sandie in MD Never Look Down on SomeoneUnless You're Gonna Help Them Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 I will use that. Thank you. Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Thank you so much! Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Thank you so much Sandie. Marsha Quote Link to comment Share on other sites More sharing options...
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