Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Hi to all, and gee nice to see new people here interested in their own well being. Such a lot more info out there than in days I was dx, and many here too. My dad was dx in his childhood, and he died in 1976 he was 60 when he died. I was told to be suspicious , that I would likely get it, but wasn,t tested etc. BUT was, like so many here, sick all the time, infections, chest real agony, always rugged up, but then felt so heemed in and hot couldn,t breathe etc. I wasn,t dx till round 21, then told by 1 doctor, oh no couldn,t be bronchiectasis, thats an OLD English disease, not here in australia and well we have a better climate, couldn,t be it. Oh so ridiculous. Just all were too lazy to go on to see how many others were fronting with similar etc Many people I have known over the years had pneumonias before dx, 2 were told they derived bronch from measles. I ws lucky to have lots of information already recorded from dad and his family- who were ENGLISH. Dad was only one born here. He had a bro and uncle with bronch. I too have had measles ( nearly died,) and many pneumonias, but was with bronch long before. I was left for long periods on ab,s , and steroid treatments etc, too many, that I became totally allergic to all.Have to carry epi pen, now allergic to almost everything. I had an acute attack of whooping cough around 12 years ago now, and well was locked away, bedridden for almost 8 months, unable to have meds etc. Took a lot out of me, for life too. BUT seemed to turn broch around. I have shown no real symptoms for around 11 years or a little more. I do have bad asthma, and developed many more conditions and allergies. all stem from the bronch. I have had to invent and trial many new methods to keep well, and no infections etc. Do get fungal, but external so can manage. I manage cos I am very strict with diet, and way i cook also with breathing excersises etc. It can be done, just very much a learned thing and the need to be ever so vigilant. Immune deficiences etc are also well connected to bronch, as are anything to do with ear, nose throat, and end result stomach, gut, osphagus probs etc. Infusions I have had many, but again none now, no need. Just wonder if I am going to be like dad, and just keep on working hard to keep as busy and active as I can, till I go out with a totally different illness. I too developed heart disease, but now unable to take anything, so have to be more and more conscious of surroundings etc. I work in hospitals almost every day. I am disabled pensioner now, so I can chose my hours of work etc, I volunteer, and have worked all my 61 years. I am sure keeping as busy as i do, also is half the reason I keep infections away. Maybe with me its a mind thing, cos I am very positive and won,t let myself slip ever. I have talked myself into being well, and staying well for my family, my 4 kids and their kids ( 14 of them). I hope you all keep looking at alternatives and or of course complimentary to your meds so able to eventually cut back the meds and give the body time to rebuild etc. Sandy 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, 18 Jan 2008 16:26:47 +0000From: bronchiectasis To: bronchiectasis Subject: Digest Number 2189 Bronchiectasis Support Group Messages In This Digest (19 Messages) 1a. No cure for bronchiectasis From: Ad Fong 1b. No cure for bronchiectasis From: Ad Fong 1c. No cure for bronchiectasis From: Ad Fong 1d. Re: No cure for bronchiectasis From: ericnkayn@... 1e. Re: No cure for bronchiectasis From: joy hensby 1f. Re: No cure for bronchiectasis From: Mmanow1@... 2a. Re: no cure for bronchiectasis From: ericnkayn@... 2b. Re: no cure for bronchiectasis From: Eileen Bauer 2c. Re: no cure for bronchiectasis From: joy hensby 2d. Re: no cure for bronchiectasis From: Joan 2e. Re: no cure for bronchiectasis From: Mmanow1@... 2f. Re: no cure for bronchiectasis From: Mmanow1@... 3a. Re: weight gain/exercise From: ericnkayn@... 4a. Re: weight gain with bronchiectasis From: ericnkayn@... 5a. Re: our 'friend' bronchiectasis From: joy hensby 6a. Re: diagnosis when? From: joy hensby 6b. Re: diagnosis when? From: Mmanow1@... 7. Growing up 'normal' From: joy hensby 8. Discovery of bronch From: joy hensby View All Topics | Create New Topic Messages 1a. No cure for bronchiectasis Posted by: "Ad Fong" jujunamazon@... jujunamazon Thu Jan 17, 2008 4:07 pm (PST) Hi Sandie,Thanks again for all the great information about probiotics and yogurt. I appreciate your insight, Cassie---------------------------------Never miss a thing. Make Yahoo your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1b. No cure for bronchiectasis Posted by: "Ad Fong" jujunamazon@... jujunamazon Thu Jan 17, 2008 4:10 pm (PST) Hi Marilyn,Yes, immunoglobulin infusions are very expensive. And they're quite time consuming also. I was infused for 4 hours once every 4 weeks. They come from other's blood products and must be sanitized.Anyway, hope you're doing okay . . . Cassie---------------------------------Never miss a thing. Make Yahoo your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1c. No cure for bronchiectasis Posted by: "Ad Fong" jujunamazon@... jujunamazon Thu Jan 17, 2008 4:29 pm (PST) Hi Betty,Thanks for the information about Bronchitol. It sounds interesting and I hope it will work in the future!Take care,Cassie ---------------------------------Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1d. Re: No cure for bronchiectasis Posted by: "ericnkayn@..." ericnkayn@... poppythai1 Thu Jan 17, 2008 9:29 pm (PST) In Calif all yogurt must contain live cultures! My first husband was chairman of a univ. dairy science dept.Kay-------------- Original message -------------- From: Sunniesback55aol In a message dated 1/16/2008 6:53:38 P.M. Eastern Standard Time, jujunamazon writes:I just talked to my doctor today and he said it's fine to take probiotics. He actually recommended a probiotic called Jarro Dophilus. I plan to buy it but was wondering how much dosage of each tablet do you take each day? And, you only use it during the times you take abx, right? I assume you haven't had any side effects at all from the probiotics, right?I'm also going to eat yogurt everyday. Do you know if it's okay to eat flavored yogurt as a probiotic (as opposed to plain)?Thanks again and hope you're doing okay, CassieHi Cassie..any yogurt is good as long as it has " Live cultures " listed on the container..I never realized this till I had a chat w/my Alpha1 coordinator..i'm not worried about low fat, no fat..what I want to know is are there live cultures in my yogurt..cause that's what's gonna help me the most.Yes..I only use the probiotics when I'm taking my antis..and no, I've never had side effects from it..I am QUITE med phobic..and I always ask the same ??s you do..as far as doseage goes..that would be a good ?? for your pharmacist or dr..I'm not a dr..I dont pretend to be one..and I wouldn't feel comfy suggesting something as important as that to you..SandieNever Look Down on SomeoneUnless You're Willing to Help Them UpStart the year off right. Easy ways to stay in shape in the new year. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1e. Re: No cure for bronchiectasis Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 6:12 am (PST) Hi Cassie and others,Been watching your e¹s about immunoglobulin infusions... This is somethingnew to me? Maybe has a diff name in Oz. I¹ve had 14-day IV abx wGentamycin, ... But I think is not the same?¹I also know people here who can no longer take ANY meds abx, fungal orsteroid and only a mere 5-6 yrs older than I am, but with multipleinfections.I haven¹t heard anyone yet talk of what their infection is it is importantto know, as this will make a big difference to choice and efficacy oftreatment... Love your body, care for your mind, as much as you can, anyway!Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1f. Re: No cure for bronchiectasis Posted by: "Mmanow1@..." Mmanow1@... mmanow1 Fri Jan 18, 2008 8:01 am (PST) Thanks Cassie,Actually I am doing well, trying to eat healthy and try to keep strong.Thanks,Marilyn**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 2a. Re: no cure for bronchiectasis Posted by: "ericnkayn@..." ericnkayn@... poppythai1 Thu Jan 17, 2008 9:16 pm (PST) Good grief, your doctors are appalling! The local pulm dr in our city "diagnosed" my probable problem over the phone when my internist called him after azythromycin didn't stop the coughing and phlegm problem I was having last winter! Then when I was sent to UC ' pulmonary clinic for a work-up the physician professor and one of his pulm fellows (students with an MD studying to be pulm drs) found it on a recent x-ray and said there was a little bronchitis in addition.Did you say you live in Florida, Marilyn? Surely wherever you live there doctors better informed than the one's you've seen!? Best of luck in finding a good one.Kay-------------- Original message -------------- From: Mmanow1aol Hi Joy,You are right about it being difficult to diagnose. I read in an article on the web recently that bronch was just recognized in 1995. It takes many forms, one of them is cystic fibrosis, and it can be pediatric and/or idiopathic (no known cause). So a lot of docs don't really know what they are dealing with. The internist I was seeing from 1999 until 2006 sent me to a pulmonary doctor (one of many I have seen) and completely overlooked the emphysema and pulmonary reports about pulmonary hypertension. When I told him I have bronchiectasis he said "Huh, bronchiectasis?" and that was that. The pulmonary doc I see now acts like he doesn't know what it is and tells me I am tired because I am depressed. It is very frustrating to say the least.I am going to start probiotics and try the Kashi Go Lean someone recommended because I need to build up my strength.Stay strongMarilynStart the year off right. Easy ways to stay in shape in the new year. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2b. Re: no cure for bronchiectasis Posted by: "Eileen Bauer" ecbauer954@... ecbauer954 Fri Jan 18, 2008 5:40 am (PST) Dear Marily,I have a great Plum. Dr. right here in Pompano Beach Florida. My primary Dr. sent me to his group because I had the cough, phlegm, small amounts of blood in the phlegm and all the antibiotics she prescribed were not effective. He did a work up, found me a challenge, and finally diagnosed the Bronch. His name is Darrin Hoffberger 954- 941-1147 and he takes very good care of me and in addition his staff is excellent with the phone backs, and prior approvals with my HMO.All the best,Eileen-FLericnkayncomcast (DOT) net wrote:Good grief, your doctors are appalling! The local pulm dr in our city "diagnosed" my probable problem over the phone when my internist called him after azythromycin didn't stop the coughing and phlegm problem I was having last winter! Then when I was sent to UC ' pulmonary clinic for a work-up the physician professor and one of his pulm fellows (students with an MD studying to be pulm drs) found it on a recent x-ray and said there was a little bronchitis in addition.Did you say you live in Florida, Marilyn? Surely wherever you live there doctors better informed than the one's you've seen!? Best of luck in finding a good one.Kay-------------- Original message -------------- From: Mmanow1aol Hi Joy,You are right about it being difficult to diagnose. I read in an article on the web recently that bronch was just recognized in 1995. It takes many forms, one of them is cystic fibrosis, and it can be pediatric and/or idiopathic (no known cause). So a lot of docs don't really know what they are dealing with. The internist I was seeing from 1999 until 2006 sent me to a pulmonary doctor (one of many I have seen) and completely overlooked the emphysema and pulmonary reports about pulmonary hypertension. When I told him I have bronchiectasis he said "Huh, bronchiectasis?" and that was that. The pulmonary doc I see now acts like he doesn't know what it is and tells me I am tired because I am depressed. It is very frustrating to say the least.I am going to start probiotics and try the Kashi Go Lean someone recommended because I need to build up my strength.Stay strongMarilyn---------------------------------Start the year off right. Easy ways to stay in shape in the new year. ---------------------------------Never miss a thing. Make Yahoo your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2c. Re: no cure for bronchiectasis Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 5:58 am (PST) Hi KayI noticed the Œirreversible bronchiectasis¹ in passing. I¹ve never seen orheard of it before. Below is an extract from the the weblink:http://www.hawaii.edu/medicine/pediatrics/pedtext/s08c05.htmlIt does give a fairly thorough description of what bronch is but didn¹tfind reference to irrerversible maybe in pediatrics?³Bronchiectasis is a chronic lung disease whose pathophysiology is poorlyunderstood. It has traditionally been considered "permanent andirreversible" (1). Traction of airways from collapsed surroundingstructures, bulging of the airways from retained secretions, weakening ofthe bronchial wall by infection or inflammation, or combinations of thesefactors are all suggested mechanisms (2). Single or repeated acuteinfections, chronic obstruction from congenital anomalies, tumors, cysticfibrosis, chronic asthma or immunodeficiencies may also predispose a patientto developing the disease (3). In addition, repeated airway injury fromchronic aspiration, with or without gastroesophageal reflux (GER), has beenimplicated as another etiologic possibility (4,5).Bronchiectasis has been termed an "orphan disease" which may not always beconsidered in the evaluation of children with obstructive pulmonary diseasebecause it has become relatively uncommon in the antibiotic era (1,5). Fiftyyears ago, Field studied 160 children with bronchiectasis for almost 2decades (6,7,8,9). In that period, she documented a fall in the annualhospitalization rate for bronchiectasis in five British hospitals(1952-1960) of approximately 48/10,000 to 10/10,000 (9). At our institutionamong children of American Military members, there have been 14 pediatriccases in the past 19 years including the present case, yielding anapproximate rate of 0.2/10,000 (unpublished data).The term "bronchiectasis" has traditionally implied permanent, irreversiblealteration in the anatomy of the airways (1,10). It has been classified ascylindrical, varicose or saccular (1,10). The diagnosis should be consideredin children with daily, productive cough of longer than 6 weeks duration,hemoptysis, children with persistent radiographic infiltrates, digitalclubbing or isolated, persistent crackles on auscultation. (6,10).Traditionally, the diagnosis was made by bronchography (chest radiographtaken with inhaled contrast), as the plain chest radiograph is relativelyinsensitive for the detection of bronchiectasis (10). Most commonly today,the diagnosis is made by thin-section high resolution CT scan. The diagnosisis based upon the presence of an internal bronchial diameter greater thanthe adjacent pulmonary artery, lack of tapering of the bronchial lumina, andvisualization of the bronchi within 1 cm of the pleura, although the use ofthe first of these criteria has been debated (11,12).The combination of small airway obstruction coupled with chronicinflammation of the bronchial wall is most likely the mechanism in thedevelopment of bronchiectasis. The inflammation usually results from acuteor chronic bacterial infection or "colonization" of the airways (7,10,13).The majority of cases of bronchiectasis follow severe pneumonia or otherlower respiratory infection (10). In a series by Field fifty years ago, 24%of cases followed pneumonia, and 33% followed some combination of pertussisand/or measles infections (6).²I searched <irreversible bronchiectasis> there¹s a few sites, but not muchinfo sort of just a mention...Lots of things are irreversible, most things are! But can be adapted to...There ARE worse things (sez I except when I¹m in the middle of a series ofexacerbations and thoroughly fed up!)Don¹t give up, there¹s still heaps to enjoy, and it teaches you to love andcare for yourself you have to,Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2d. Re: no cure for bronchiectasis Posted by: "Joan" queenmum32909@... joan_lund Fri Jan 18, 2008 6:02 am (PST) I'm in Melbourne florida and can recommend likewise._____ From: bronchiectasis [mailto:bronchiectasis ]On Behalf Of Eileen BauerSent: Friday, January 18, 2008 8:41 AMTo: bronchiectasis Subject: Re: no cure for bronchiectasisDear Marily,I have a great Plum. Dr. right here in Pompano Beach Florida. My primaryDr. sent me to his group because I had the cough, phlegm, small amounts ofblood in the phlegm and all the antibiotics she prescribed were noteffective. He did a work up, found me a challenge, and finally diagnosedthe Bronch. His name is Darrin Hoffberger 954- 941-1147 and he takes very good care ofme and in addition his staff is excellent with the phone backs, and priorapprovals with my HMO.All the best,Eileen-FLericnkayncomcast (DOT) net wrote:Good grief, your doctors are appalling! The local pulm dr in our city"diagnosed" my probable problem over the phone when my internist called himafter azythromycin didn't stop the coughing and phlegm problem I was havinglast winter! Then when I was sent to UC ' pulmonary clinic for awork-up the physician professor and one of his pulm fellows (students withan MD studying to be pulm drs) found it on a recent x-ray and said there wasa little bronchitis in addition.Did you say you live in Florida, Marilyn? Surely wherever you live theredoctors better informed than the one's you've seen!? Best of luck infinding a good one.Kay-------------- Original message -------------- From: Mmanow1aol Hi Joy,You are right about it being difficult to diagnose. I read in an article onthe web recently that bronch was just recognized in 1995. It takes manyforms, one of them is cystic fibrosis, and it can be pediatric and/oridiopathic (no known cause). So a lot of docs don't really know what theyare dealing with. The internist I was seeing from 1999 until 2006 sent meto a pulmonary doctor (one of many I have seen) and completely overlookedthe emphysema and pulmonary reports about pulmonary hypertension. When Itold him I have bronchiectasis he said "Huh, bronchiectasis?" and that wasthat. The pulmonary doc I see now acts like he doesn't know what it is andtells me I am tired because I am depressed. It is very frustrating to saythe least.I am going to start probiotics and try the Kashi Go Lean someone recommendedbecause I need to build up my strength.Stay strongMarilyn_____ Start the year off right. Easy<http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>ways to stay in shape in the new year. _____ Never miss a thing. Make Yahoo<http://us.rd.yahoo.com/evt=51438/*http:/www.yahoo.com/r/hs> your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2e. Re: no cure for bronchiectasis Posted by: "Mmanow1@..." Mmanow1@... mmanow1 Fri Jan 18, 2008 8:09 am (PST) Thanks Kay,Actually I live in Illinois, near Chicago. I did have a good internist and pulmonary doctor, but the pulm doc moved to another part of the state, and I moved about 15 miles from my previous home. I transferred my records to a group of pulmonary doctors where I live now, and although at first they sent me to pulmonary rehab and did the testing that determined I had the immunoglobulin deficiency, it seems like they kind of dropped the ball then. As I had gotten a copy of my medical records when I moved, I saw all kinds of things like pulmonary hypertension and dilated esophagus that no one had mentioned to me. I will always ask to see my records from now on. They seem to have an attitude and am trying to decide what to do next. On my own I saw a cardiologist and was able to find I don't have pulmonary hypertension, and a gastroenterologist who confirmed dilated esophagus, but no lesions or cancer. Just need to take a Nexium every day. The internist in my new home town has left his practice, so I have to start all over there. I thought the internist was supposed to be the "go to" guy.Yes, there must be good doctors, but I really hate to have to drive 15 or 20 miles to see a doctor. Also, if I had an emergency and had to go to the hospital, I would like a local doctor who could see me.Frustrating!Marilyn**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2f. Re: no cure for bronchiectasis Posted by: "Mmanow1@..." Mmanow1@... mmanow1 Fri Jan 18, 2008 8:11 am (PST) Thanks Eileen,I unfortunately live in icy Illinois. I am searching for a better doctor.Marilyn**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 3a. Re: weight gain/exercise Posted by: "ericnkayn@..." ericnkayn@... poppythai1 Thu Jan 17, 2008 9:25 pm (PST) I know just what you mean. I have hand weights and just seem to put it off and say I'll be sure to do it tomorrow. I have pretty strong muscles from doing lots of heavy yard work, but have noticed a change in my arms since I've not been as religious about the arm weights! The yoga class is great because and you say you do what the teacher says for an hour and a half and it really is exercise if you maximize each move.Kay-------------- Original message -------------- From: Norma Henry <3norma-henrysbcglobal (DOT) net> Kay,I have all kinds of hand weights, a Total Gym, treadmill, Schwinn aerodyne bike, exercise ball, many therabands here at home. I have had a lot of physical therapy from a broken wrist and broken shoulder and for osteoporosis. I have a video of Tai Chi and have taken classes. I am going to start another type of exercise class specifically for the lungs after rehab. When I have to leave home, I do better. With all this equipment, I always find things that I think that I should be doing like housework when I stay home.Thanks for your suggestions and support.Norma Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (2) 4a. Re: weight gain with bronchiectasis Posted by: "ericnkayn@..." ericnkayn@... poppythai1 Thu Jan 17, 2008 9:28 pm (PST) I, too, find myself at the computer for far too long sometimes and know it has affected my general exercise level. But, there is so much you can do on the computer and it's interesting!Kay-------------- Original message -------------- From: Sunniesback55aol In a message dated 1/16/2008 7:40:33 P.M. Eastern Standard Time, ericnkayncomcast (DOT) net writes:Have you tried lifting hand weights and doing strength exercises at home for building muscle mass, or using the machines at a gym? They sell very small weights for us ladies...I went to pulm rehab last spring..I was so riddled w/infection that I was having a really difficult time functioning..so I stopped going. I have small hand weights at home..and while at Pulm Rehab they showed us some exercises to do..not so much for building muscle mass..but for stretching.. I guess I need to get away from this computer..and start taking better care of myself..n'est pas?SandieNever Look Down on SomeoneUnless You're Willing to Help Them Up Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (11) 5a. Re: our 'friend' bronchiectasis Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 5:42 am (PST) Hi Cassie,Thanks for listening, for caring how we so need it when those we rely onso often fail! I had abx since an infant because of collapsed lung, after each surgery etc,for bronchitis thru school yrs, and in my teens, so I¹d had abx just aboutevery year of my life I can¹t really remember any specific year, ever,that I did not. I recall when I went for checkups at the hospitalout-patient clinic I was usually put on (?nebuliser? I don¹t know), andoften admitted as in-patient, not ever really knowing why.Growing up, I just was told I had bronchitis or pneumonia, and only heardthe term exacerbations this past decade and found out about the particularinfection I have (Psuedomonas) and the antibiotics now resistant. I¹ll haveto look up Œmacrolide¹ - thanks for the link. If it¹s anti-inflammatory, itwould make sense if inflammatory conditions eg rheumatoid arthritis, areassoc w bronch. (Refer article ³How to Treat Bronchiectasis² (www.australiandoctor.com.au/ htt/pdf/AD_HTT_031_038___MAY20_05.pdf let meknow if you have difficulty accessing and will send the pdf article asattachment).I looked up the ŒVest¹ - thanks Sandie. But Acapella I am sure you¹re notreferring to the beautiful way of singing w other people eg ³Sweet Honey inthe Rock² (really would not be nice bringing up sputum in such company!). Ithink pulmonary hygiene is what we refer to as Œphysio¹, which can bepercussion provided by another person (Œclapping¹ cupped hands on yourribcage) can hurt, be effective, and requires someone willing/able to doit...Keep singing!Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 6a. Re: diagnosis when? Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 5:42 am (PST) Hi lin,Where did you read bronch was recognised in 1995 are you sure you didn¹tmean 1955? I was diagnosed in 1970. What I have read is that there¹s beenno real research 40-50 years most of our lifetimes, because it wasbelieved abx had Œfixed¹ it.If you have a doctor who just can¹t be bothered and trots out the Œyou¹rejust depressed¹ line I would really urge you to find another, and when youdo, ask the new dr to obtain your history. . I¹d be wary of taking anyadvice from a dr who can¹t be bothered to find out about a condition.Any pro(for)biotic is the opposite of an anti(against)biotic and willundoubtedly help if you¹ve had abx at all. Eventually yoghurt isn¹t enough- I¹d have to eat bucket-loads and it makes my nose stream. I started SBFlorActiv several yrs ago and for the first time had a happier gut!It can be hard to stand up for your rights when you¹re unwell, one day witha fever and the next feel Œfine¹. However, making appts when you are wellreally works - write down what you need to discuss, want clarified, wantinformation about, any other health issues which get left unattended becausewith an exacerbation bronch takes over. I have learnt this from others andit has helped me enormously.Wishing you every good thing,-- Joy Australia-- -- "Wealth is nothing, position is nothing, fame is nothing.Who you become inside is everything.What happens to you is not as important as how you react to what happens." Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 6b. Re: diagnosis when? Posted by: "Mmanow1@..." Mmanow1@... mmanow1 Fri Jan 18, 2008 8:12 am (PST) Joy,Thanks for the supportive words.Marilyn**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 7. Growing up 'normal' Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 6:27 am (PST) Hello my new bronch friends,Am I the only one who -Grew up being told to stay away from other kids because I would infectthem...Siblings would rather you¹re not around...couldn¹t get through any school year without being off for long chunks...Spent school hols (and later) in hospitalfound it hard to stay in employment, always had too many Œsick days¹ off,came back to work, no job.And relationships going nicely, til unwell just that little bit too long,they disappear - when you¹re well enough, they¹re gone... ?Being older, with crepey skin, lost muscle-tone, no tan (something that Irecently found not a good combo with abx sun, that is), too manyside-effects, too many Œdon¹t know¹, pain, rashes, etc etc is somehow stilleasier, I don¹t have to pretend I¹m Œsuccessful¹, I am involved in things Ienjoy for now. Later, who knows, it will change... That is for sure!Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) 8. Discovery of bronch Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 6:38 am (PST) Wikipediea http://en.wikipedia.org/wiki/BronchiectasisRene Theophile Hyacinthe Laënnec, the man who invented the stethoscope, usedhis creation to first discover bronchiectasis in 1819.[2]. The disease wasresearched in greater detail by Sir Osler in the late 1800s; infact, it is suspected that Osler actually died of complications fromundiagnosed bronchiectasis[3].Knowledge of bronch been around!Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) Recent Activity 1 New MembersVisit Your Group Yahoo! Health Fit for Life Getting fit is now easier than ever. 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Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 My dads family knew Osler, and had a diary from given to them by his family, before they left England. We didn,t realise its importance, and gave to the biggest library of medical books way back in mid 60,s. Golly often wish we had read it, or for that matter kept it. Sandy, ps Joy where do you live in Oz? 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, 18 Jan 2008 16:26:47 +0000From: bronchiectasis To: bronchiectasis Subject: Digest Number 2189 Bronchiectasis Support Group Messages In This Digest (19 Messages) 1a. No cure for bronchiectasis From: Ad Fong 1b. No cure for bronchiectasis From: Ad Fong 1c. No cure for bronchiectasis From: Ad Fong 1d. Re: No cure for bronchiectasis From: ericnkayn@... 1e. Re: No cure for bronchiectasis From: joy hensby 1f. Re: No cure for bronchiectasis From: Mmanow1@... 2a. Re: no cure for bronchiectasis From: ericnkayn@... 2b. Re: no cure for bronchiectasis From: Eileen Bauer 2c. Re: no cure for bronchiectasis From: joy hensby 2d. Re: no cure for bronchiectasis From: Joan 2e. Re: no cure for bronchiectasis From: Mmanow1@... 2f. Re: no cure for bronchiectasis From: Mmanow1@... 3a. Re: weight gain/exercise From: ericnkayn@... 4a. Re: weight gain with bronchiectasis From: ericnkayn@... 5a. Re: our 'friend' bronchiectasis From: joy hensby 6a. Re: diagnosis when? From: joy hensby 6b. Re: diagnosis when? From: Mmanow1@... 7. Growing up 'normal' From: joy hensby 8. Discovery of bronch From: joy hensby View All Topics | Create New Topic Messages 1a. No cure for bronchiectasis Posted by: "Ad Fong" jujunamazon@... jujunamazon Thu Jan 17, 2008 4:07 pm (PST) Hi Sandie,Thanks again for all the great information about probiotics and yogurt. I appreciate your insight, Cassie---------------------------------Never miss a thing. Make Yahoo your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1b. No cure for bronchiectasis Posted by: "Ad Fong" jujunamazon@... jujunamazon Thu Jan 17, 2008 4:10 pm (PST) Hi Marilyn,Yes, immunoglobulin infusions are very expensive. And they're quite time consuming also. I was infused for 4 hours once every 4 weeks. They come from other's blood products and must be sanitized.Anyway, hope you're doing okay . . . Cassie---------------------------------Never miss a thing. Make Yahoo your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1c. No cure for bronchiectasis Posted by: "Ad Fong" jujunamazon@... jujunamazon Thu Jan 17, 2008 4:29 pm (PST) Hi Betty,Thanks for the information about Bronchitol. It sounds interesting and I hope it will work in the future!Take care,Cassie ---------------------------------Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1d. Re: No cure for bronchiectasis Posted by: "ericnkayn@..." ericnkayn@... poppythai1 Thu Jan 17, 2008 9:29 pm (PST) In Calif all yogurt must contain live cultures! My first husband was chairman of a univ. dairy science dept.Kay-------------- Original message -------------- From: Sunniesback55aol In a message dated 1/16/2008 6:53:38 P.M. Eastern Standard Time, jujunamazon writes:I just talked to my doctor today and he said it's fine to take probiotics. He actually recommended a probiotic called Jarro Dophilus. I plan to buy it but was wondering how much dosage of each tablet do you take each day? And, you only use it during the times you take abx, right? I assume you haven't had any side effects at all from the probiotics, right?I'm also going to eat yogurt everyday. Do you know if it's okay to eat flavored yogurt as a probiotic (as opposed to plain)?Thanks again and hope you're doing okay, CassieHi Cassie..any yogurt is good as long as it has " Live cultures " listed on the container..I never realized this till I had a chat w/my Alpha1 coordinator..i'm not worried about low fat, no fat..what I want to know is are there live cultures in my yogurt..cause that's what's gonna help me the most.Yes..I only use the probiotics when I'm taking my antis..and no, I've never had side effects from it..I am QUITE med phobic..and I always ask the same ??s you do..as far as doseage goes..that would be a good ?? for your pharmacist or dr..I'm not a dr..I dont pretend to be one..and I wouldn't feel comfy suggesting something as important as that to you..SandieNever Look Down on SomeoneUnless You're Willing to Help Them UpStart the year off right. Easy ways to stay in shape in the new year. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1e. Re: No cure for bronchiectasis Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 6:12 am (PST) Hi Cassie and others,Been watching your e¹s about immunoglobulin infusions... This is somethingnew to me? Maybe has a diff name in Oz. I¹ve had 14-day IV abx wGentamycin, ... But I think is not the same?¹I also know people here who can no longer take ANY meds abx, fungal orsteroid and only a mere 5-6 yrs older than I am, but with multipleinfections.I haven¹t heard anyone yet talk of what their infection is it is importantto know, as this will make a big difference to choice and efficacy oftreatment... Love your body, care for your mind, as much as you can, anyway!Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 1f. Re: No cure for bronchiectasis Posted by: "Mmanow1@..." Mmanow1@... mmanow1 Fri Jan 18, 2008 8:01 am (PST) Thanks Cassie,Actually I am doing well, trying to eat healthy and try to keep strong.Thanks,Marilyn**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 2a. Re: no cure for bronchiectasis Posted by: "ericnkayn@..." ericnkayn@... poppythai1 Thu Jan 17, 2008 9:16 pm (PST) Good grief, your doctors are appalling! The local pulm dr in our city "diagnosed" my probable problem over the phone when my internist called him after azythromycin didn't stop the coughing and phlegm problem I was having last winter! Then when I was sent to UC ' pulmonary clinic for a work-up the physician professor and one of his pulm fellows (students with an MD studying to be pulm drs) found it on a recent x-ray and said there was a little bronchitis in addition.Did you say you live in Florida, Marilyn? Surely wherever you live there doctors better informed than the one's you've seen!? Best of luck in finding a good one.Kay-------------- Original message -------------- From: Mmanow1aol Hi Joy,You are right about it being difficult to diagnose. I read in an article on the web recently that bronch was just recognized in 1995. It takes many forms, one of them is cystic fibrosis, and it can be pediatric and/or idiopathic (no known cause). So a lot of docs don't really know what they are dealing with. The internist I was seeing from 1999 until 2006 sent me to a pulmonary doctor (one of many I have seen) and completely overlooked the emphysema and pulmonary reports about pulmonary hypertension. When I told him I have bronchiectasis he said "Huh, bronchiectasis?" and that was that. The pulmonary doc I see now acts like he doesn't know what it is and tells me I am tired because I am depressed. It is very frustrating to say the least.I am going to start probiotics and try the Kashi Go Lean someone recommended because I need to build up my strength.Stay strongMarilynStart the year off right. Easy ways to stay in shape in the new year. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2b. Re: no cure for bronchiectasis Posted by: "Eileen Bauer" ecbauer954@... ecbauer954 Fri Jan 18, 2008 5:40 am (PST) Dear Marily,I have a great Plum. Dr. right here in Pompano Beach Florida. My primary Dr. sent me to his group because I had the cough, phlegm, small amounts of blood in the phlegm and all the antibiotics she prescribed were not effective. He did a work up, found me a challenge, and finally diagnosed the Bronch. His name is Darrin Hoffberger 954- 941-1147 and he takes very good care of me and in addition his staff is excellent with the phone backs, and prior approvals with my HMO.All the best,Eileen-FLericnkayncomcast (DOT) net wrote:Good grief, your doctors are appalling! The local pulm dr in our city "diagnosed" my probable problem over the phone when my internist called him after azythromycin didn't stop the coughing and phlegm problem I was having last winter! Then when I was sent to UC ' pulmonary clinic for a work-up the physician professor and one of his pulm fellows (students with an MD studying to be pulm drs) found it on a recent x-ray and said there was a little bronchitis in addition.Did you say you live in Florida, Marilyn? Surely wherever you live there doctors better informed than the one's you've seen!? Best of luck in finding a good one.Kay-------------- Original message -------------- From: Mmanow1aol Hi Joy,You are right about it being difficult to diagnose. I read in an article on the web recently that bronch was just recognized in 1995. It takes many forms, one of them is cystic fibrosis, and it can be pediatric and/or idiopathic (no known cause). So a lot of docs don't really know what they are dealing with. The internist I was seeing from 1999 until 2006 sent me to a pulmonary doctor (one of many I have seen) and completely overlooked the emphysema and pulmonary reports about pulmonary hypertension. When I told him I have bronchiectasis he said "Huh, bronchiectasis?" and that was that. The pulmonary doc I see now acts like he doesn't know what it is and tells me I am tired because I am depressed. It is very frustrating to say the least.I am going to start probiotics and try the Kashi Go Lean someone recommended because I need to build up my strength.Stay strongMarilyn---------------------------------Start the year off right. Easy ways to stay in shape in the new year. ---------------------------------Never miss a thing. Make Yahoo your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2c. Re: no cure for bronchiectasis Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 5:58 am (PST) Hi KayI noticed the Œirreversible bronchiectasis¹ in passing. I¹ve never seen orheard of it before. Below is an extract from the the weblink:http://www.hawaii.edu/medicine/pediatrics/pedtext/s08c05.htmlIt does give a fairly thorough description of what bronch is but didn¹tfind reference to irrerversible maybe in pediatrics?³Bronchiectasis is a chronic lung disease whose pathophysiology is poorlyunderstood. It has traditionally been considered "permanent andirreversible" (1). Traction of airways from collapsed surroundingstructures, bulging of the airways from retained secretions, weakening ofthe bronchial wall by infection or inflammation, or combinations of thesefactors are all suggested mechanisms (2). Single or repeated acuteinfections, chronic obstruction from congenital anomalies, tumors, cysticfibrosis, chronic asthma or immunodeficiencies may also predispose a patientto developing the disease (3). In addition, repeated airway injury fromchronic aspiration, with or without gastroesophageal reflux (GER), has beenimplicated as another etiologic possibility (4,5).Bronchiectasis has been termed an "orphan disease" which may not always beconsidered in the evaluation of children with obstructive pulmonary diseasebecause it has become relatively uncommon in the antibiotic era (1,5). Fiftyyears ago, Field studied 160 children with bronchiectasis for almost 2decades (6,7,8,9). In that period, she documented a fall in the annualhospitalization rate for bronchiectasis in five British hospitals(1952-1960) of approximately 48/10,000 to 10/10,000 (9). At our institutionamong children of American Military members, there have been 14 pediatriccases in the past 19 years including the present case, yielding anapproximate rate of 0.2/10,000 (unpublished data).The term "bronchiectasis" has traditionally implied permanent, irreversiblealteration in the anatomy of the airways (1,10). It has been classified ascylindrical, varicose or saccular (1,10). The diagnosis should be consideredin children with daily, productive cough of longer than 6 weeks duration,hemoptysis, children with persistent radiographic infiltrates, digitalclubbing or isolated, persistent crackles on auscultation. (6,10).Traditionally, the diagnosis was made by bronchography (chest radiographtaken with inhaled contrast), as the plain chest radiograph is relativelyinsensitive for the detection of bronchiectasis (10). Most commonly today,the diagnosis is made by thin-section high resolution CT scan. The diagnosisis based upon the presence of an internal bronchial diameter greater thanthe adjacent pulmonary artery, lack of tapering of the bronchial lumina, andvisualization of the bronchi within 1 cm of the pleura, although the use ofthe first of these criteria has been debated (11,12).The combination of small airway obstruction coupled with chronicinflammation of the bronchial wall is most likely the mechanism in thedevelopment of bronchiectasis. The inflammation usually results from acuteor chronic bacterial infection or "colonization" of the airways (7,10,13).The majority of cases of bronchiectasis follow severe pneumonia or otherlower respiratory infection (10). In a series by Field fifty years ago, 24%of cases followed pneumonia, and 33% followed some combination of pertussisand/or measles infections (6).²I searched <irreversible bronchiectasis> there¹s a few sites, but not muchinfo sort of just a mention...Lots of things are irreversible, most things are! But can be adapted to...There ARE worse things (sez I except when I¹m in the middle of a series ofexacerbations and thoroughly fed up!)Don¹t give up, there¹s still heaps to enjoy, and it teaches you to love andcare for yourself you have to,Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2d. Re: no cure for bronchiectasis Posted by: "Joan" queenmum32909@... joan_lund Fri Jan 18, 2008 6:02 am (PST) I'm in Melbourne florida and can recommend likewise._____ From: bronchiectasis [mailto:bronchiectasis ]On Behalf Of Eileen BauerSent: Friday, January 18, 2008 8:41 AMTo: bronchiectasis Subject: Re: no cure for bronchiectasisDear Marily,I have a great Plum. Dr. right here in Pompano Beach Florida. My primaryDr. sent me to his group because I had the cough, phlegm, small amounts ofblood in the phlegm and all the antibiotics she prescribed were noteffective. He did a work up, found me a challenge, and finally diagnosedthe Bronch. His name is Darrin Hoffberger 954- 941-1147 and he takes very good care ofme and in addition his staff is excellent with the phone backs, and priorapprovals with my HMO.All the best,Eileen-FLericnkayncomcast (DOT) net wrote:Good grief, your doctors are appalling! The local pulm dr in our city"diagnosed" my probable problem over the phone when my internist called himafter azythromycin didn't stop the coughing and phlegm problem I was havinglast winter! Then when I was sent to UC ' pulmonary clinic for awork-up the physician professor and one of his pulm fellows (students withan MD studying to be pulm drs) found it on a recent x-ray and said there wasa little bronchitis in addition.Did you say you live in Florida, Marilyn? Surely wherever you live theredoctors better informed than the one's you've seen!? Best of luck infinding a good one.Kay-------------- Original message -------------- From: Mmanow1aol Hi Joy,You are right about it being difficult to diagnose. I read in an article onthe web recently that bronch was just recognized in 1995. It takes manyforms, one of them is cystic fibrosis, and it can be pediatric and/oridiopathic (no known cause). So a lot of docs don't really know what theyare dealing with. The internist I was seeing from 1999 until 2006 sent meto a pulmonary doctor (one of many I have seen) and completely overlookedthe emphysema and pulmonary reports about pulmonary hypertension. When Itold him I have bronchiectasis he said "Huh, bronchiectasis?" and that wasthat. The pulmonary doc I see now acts like he doesn't know what it is andtells me I am tired because I am depressed. It is very frustrating to saythe least.I am going to start probiotics and try the Kashi Go Lean someone recommendedbecause I need to build up my strength.Stay strongMarilyn_____ Start the year off right. Easy<http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>ways to stay in shape in the new year. _____ Never miss a thing. Make Yahoo<http://us.rd.yahoo.com/evt=51438/*http:/www.yahoo.com/r/hs> your homepage. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2e. Re: no cure for bronchiectasis Posted by: "Mmanow1@..." Mmanow1@... mmanow1 Fri Jan 18, 2008 8:09 am (PST) Thanks Kay,Actually I live in Illinois, near Chicago. I did have a good internist and pulmonary doctor, but the pulm doc moved to another part of the state, and I moved about 15 miles from my previous home. I transferred my records to a group of pulmonary doctors where I live now, and although at first they sent me to pulmonary rehab and did the testing that determined I had the immunoglobulin deficiency, it seems like they kind of dropped the ball then. As I had gotten a copy of my medical records when I moved, I saw all kinds of things like pulmonary hypertension and dilated esophagus that no one had mentioned to me. I will always ask to see my records from now on. They seem to have an attitude and am trying to decide what to do next. On my own I saw a cardiologist and was able to find I don't have pulmonary hypertension, and a gastroenterologist who confirmed dilated esophagus, but no lesions or cancer. Just need to take a Nexium every day. The internist in my new home town has left his practice, so I have to start all over there. I thought the internist was supposed to be the "go to" guy.Yes, there must be good doctors, but I really hate to have to drive 15 or 20 miles to see a doctor. Also, if I had an emergency and had to go to the hospital, I would like a local doctor who could see me.Frustrating!Marilyn**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 2f. Re: no cure for bronchiectasis Posted by: "Mmanow1@..." Mmanow1@... mmanow1 Fri Jan 18, 2008 8:11 am (PST) Thanks Eileen,I unfortunately live in icy Illinois. I am searching for a better doctor.Marilyn**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 3a. Re: weight gain/exercise Posted by: "ericnkayn@..." ericnkayn@... poppythai1 Thu Jan 17, 2008 9:25 pm (PST) I know just what you mean. I have hand weights and just seem to put it off and say I'll be sure to do it tomorrow. I have pretty strong muscles from doing lots of heavy yard work, but have noticed a change in my arms since I've not been as religious about the arm weights! The yoga class is great because and you say you do what the teacher says for an hour and a half and it really is exercise if you maximize each move.Kay-------------- Original message -------------- From: Norma Henry <3norma-henrysbcglobal (DOT) net> Kay,I have all kinds of hand weights, a Total Gym, treadmill, Schwinn aerodyne bike, exercise ball, many therabands here at home. I have had a lot of physical therapy from a broken wrist and broken shoulder and for osteoporosis. I have a video of Tai Chi and have taken classes. I am going to start another type of exercise class specifically for the lungs after rehab. When I have to leave home, I do better. With all this equipment, I always find things that I think that I should be doing like housework when I stay home.Thanks for your suggestions and support.Norma Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (2) 4a. Re: weight gain with bronchiectasis Posted by: "ericnkayn@..." ericnkayn@... poppythai1 Thu Jan 17, 2008 9:28 pm (PST) I, too, find myself at the computer for far too long sometimes and know it has affected my general exercise level. But, there is so much you can do on the computer and it's interesting!Kay-------------- Original message -------------- From: Sunniesback55aol In a message dated 1/16/2008 7:40:33 P.M. Eastern Standard Time, ericnkayncomcast (DOT) net writes:Have you tried lifting hand weights and doing strength exercises at home for building muscle mass, or using the machines at a gym? They sell very small weights for us ladies...I went to pulm rehab last spring..I was so riddled w/infection that I was having a really difficult time functioning..so I stopped going. I have small hand weights at home..and while at Pulm Rehab they showed us some exercises to do..not so much for building muscle mass..but for stretching.. I guess I need to get away from this computer..and start taking better care of myself..n'est pas?SandieNever Look Down on SomeoneUnless You're Willing to Help Them Up Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (11) 5a. Re: our 'friend' bronchiectasis Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 5:42 am (PST) Hi Cassie,Thanks for listening, for caring how we so need it when those we rely onso often fail! I had abx since an infant because of collapsed lung, after each surgery etc,for bronchitis thru school yrs, and in my teens, so I¹d had abx just aboutevery year of my life I can¹t really remember any specific year, ever,that I did not. I recall when I went for checkups at the hospitalout-patient clinic I was usually put on (?nebuliser? I don¹t know), andoften admitted as in-patient, not ever really knowing why.Growing up, I just was told I had bronchitis or pneumonia, and only heardthe term exacerbations this past decade and found out about the particularinfection I have (Psuedomonas) and the antibiotics now resistant. I¹ll haveto look up Œmacrolide¹ - thanks for the link. If it¹s anti-inflammatory, itwould make sense if inflammatory conditions eg rheumatoid arthritis, areassoc w bronch. (Refer article ³How to Treat Bronchiectasis² (www.australiandoctor.com.au/ htt/pdf/AD_HTT_031_038___MAY20_05.pdf let meknow if you have difficulty accessing and will send the pdf article asattachment).I looked up the ŒVest¹ - thanks Sandie. But Acapella I am sure you¹re notreferring to the beautiful way of singing w other people eg ³Sweet Honey inthe Rock² (really would not be nice bringing up sputum in such company!). Ithink pulmonary hygiene is what we refer to as Œphysio¹, which can bepercussion provided by another person (Œclapping¹ cupped hands on yourribcage) can hurt, be effective, and requires someone willing/able to doit...Keep singing!Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (19) 6a. Re: diagnosis when? Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 5:42 am (PST) Hi lin,Where did you read bronch was recognised in 1995 are you sure you didn¹tmean 1955? I was diagnosed in 1970. What I have read is that there¹s beenno real research 40-50 years most of our lifetimes, because it wasbelieved abx had Œfixed¹ it.If you have a doctor who just can¹t be bothered and trots out the Œyou¹rejust depressed¹ line I would really urge you to find another, and when youdo, ask the new dr to obtain your history. . I¹d be wary of taking anyadvice from a dr who can¹t be bothered to find out about a condition.Any pro(for)biotic is the opposite of an anti(against)biotic and willundoubtedly help if you¹ve had abx at all. Eventually yoghurt isn¹t enough- I¹d have to eat bucket-loads and it makes my nose stream. I started SBFlorActiv several yrs ago and for the first time had a happier gut!It can be hard to stand up for your rights when you¹re unwell, one day witha fever and the next feel Œfine¹. However, making appts when you are wellreally works - write down what you need to discuss, want clarified, wantinformation about, any other health issues which get left unattended becausewith an exacerbation bronch takes over. I have learnt this from others andit has helped me enormously.Wishing you every good thing,-- Joy Australia-- -- "Wealth is nothing, position is nothing, fame is nothing.Who you become inside is everything.What happens to you is not as important as how you react to what happens." Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 6b. Re: diagnosis when? Posted by: "Mmanow1@..." Mmanow1@... mmanow1 Fri Jan 18, 2008 8:12 am (PST) Joy,Thanks for the supportive words.Marilyn**************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (18) 7. Growing up 'normal' Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 6:27 am (PST) Hello my new bronch friends,Am I the only one who -Grew up being told to stay away from other kids because I would infectthem...Siblings would rather you¹re not around...couldn¹t get through any school year without being off for long chunks...Spent school hols (and later) in hospitalfound it hard to stay in employment, always had too many Œsick days¹ off,came back to work, no job.And relationships going nicely, til unwell just that little bit too long,they disappear - when you¹re well enough, they¹re gone... ?Being older, with crepey skin, lost muscle-tone, no tan (something that Irecently found not a good combo with abx sun, that is), too manyside-effects, too many Œdon¹t know¹, pain, rashes, etc etc is somehow stilleasier, I don¹t have to pretend I¹m Œsuccessful¹, I am involved in things Ienjoy for now. Later, who knows, it will change... That is for sure!Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) 8. Discovery of bronch Posted by: "joy hensby" endiandra@... Fri Jan 18, 2008 6:38 am (PST) Wikipediea http://en.wikipedia.org/wiki/BronchiectasisRene Theophile Hyacinthe Laënnec, the man who invented the stethoscope, usedhis creation to first discover bronchiectasis in 1819.[2]. The disease wasresearched in greater detail by Sir Osler in the late 1800s; infact, it is suspected that Osler actually died of complications fromundiagnosed bronchiectasis[3].Knowledge of bronch been around!Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) Recent Activity 1 New MembersVisit Your Group Yahoo! Health Fit for Life Getting fit is now easier than ever. Sitebuilder Build a web site quickly & easily with Sitebuilder. Yahoo! Groups Home Improvement Learn and share do-it-yourself tips. Need to Reply? Click one of the "Reply" links to respond to a specific message in the Daily Digest. Create New Topic | Visit Your Group on the Web Messages MARKETPLACE Earn your degree in as few as 2 years - Advance your career with an AS, BS, MS degree - College-Finder.net. Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Individual | Switch format to Traditional Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe Find it at www.seek.com.au Your Future Starts Here. Dream it? Then be it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Does the medical community acknowledge the possible genetic link of bronc? Quote Link to comment Share on other sites More sharing options...
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