(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Hello Kate and all,
Since you asked us all to reply, I’m updating you on my status. I was diagnosed with MAC a couple years ago after undergoing a bronchoscopy . About three years ago, while undergoing an unrelated test for my heart, it was discovered that I had lung nodules.
Because I did not have symptoms at that time, my Dr. just did CT scans every 6 months to keep an eye on the nodules. However, I wasn’t comfortable not knowing what my actual diagnosis was so we did the Bronchoscopy, which confirmed the MAC. That’s when I found
this website which led me to Dr. Aksamit. I went to see him about a year ago and he agreed with my Dr. that we would not start treating the MAC at this point because I’m still relatively symptom free. I will see Dr. Aksamit again in December. Thank you all
for posting your experiences with this disease. It’s helpful. I pray that we will continue to find out more about good treatment for this disease.  Rosie from Minnesota

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Congratulations Kathrine.  Fantastic news and right before thanksgiving 🙂  

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Thanks for sharing your experience. I was admitted to the hospital for biopsy of a 9 mm lung nodule only to be sent home when the danger of puncturing the lung was greater. A scan taken in the hospital also showed that the nodule had decreased in size. So that is all good. I have not been diagnosed officially with MAC because I can’t provide a sputum sample but will see my doctor next week to see which direction he feels we need to take. I would like to have a bronchoscopy and just get it over with but he can’t reach the nodule and that has held us up.

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@katemn

Hello Kathryn, GREAT that you are feeling a bit better! I have been thinking about your post .. this is just me .. but because of my incessant coughing .. I decided to get another opinion a while back .. went to an excellent Allergist to have allergy tests done to figure out just what I was allergic to.. maybe another reason why I was coughing so much.

I already knew from previous allergy testing that I was allergic to mold. I was absolutely POSITIVE I was allergic to dust mites and had done a bunch of things to alleviate dust mites in my home. I was tested for various things including dust mites by the allergist.

To my shock .. NOT allergic to anything much including dust mites! BUT this doctor FINALLY explained to me for the first time just what my diagnosis of “Reactive Airway Disease” meant. His explanation: If someone hits me on the head .. I am NOT allergic to being hit on the head! I am REACTING to being hit on the head! IE .. my bronchial tubes are REACTING .. being irritating .. REACTING to various irritants that I am exposed to! I am NOT allergic to those irritants .. just reacting to them!

Yesterday I asked Dr. Aksamit about this .. WHY I cough so much in enclosed spaces ie automobiles .. sitting in a theatre close to people .. a restaurant booth etc. He said the bronchial tubes can REACT to MANY things .. MANY changes .. even changes in temperature .. humidity ..etc. That my bronchial tubes were REACTING to those changes as I entered a new environment. Ok .. explained.

So, what I am thinking is: first step get an appointment with a GOOD allergist to confirm/deny any allergies you might have. If the doctor cannot come up with any allergies. Then I wonder if you are just like me .. REACTING to various irritants to the bronchial tubes? Sorry .. a real pain in the batooty but things could be worse .. LOTS of worse illnesses we could have .. right?! Hugs to you! Katherine

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Your answer makes so much sense. I was really miserable this summer (humidity/ perhaps mold in duct system) and am about 80% energy now versus really low at that time. I will start by having my duct system cleaned of bacteria. The prior owner of my house paid no one to come in as I have learned and I imagine this system will be filthy. Thanks for everything and Happy Thanksgiving.

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@boomerexpert

It’s quite possible that you have multiple things going on. So eliminate culprits one by one, starting with an allergist, and checking for mold/mildew/other irritating sources in and around your home.

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Thanks for your reply. It’s great to feel I can attack some of the offending sources! Happy Thanksgiving. Best, Kathryn

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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KateThanks for asking. I’m on the big 3 for one MAC cavity in my upper right lobe (finally diagnosed in July 2016 after pneumonia in Dec 2016 and a ‘abcess’ they watched till a bronchoscopy lovage showed MAC. Going back to Mayo in Jan. The cavity wall is smaller, so they might do surgery. I tolerate the meds but they still nauseate me at times and I’m tired. Nothing showed on my last culture. I do have a question. Did you say you had geographic tongue? Was it from our meds?I’m going next week to see my PC doc, but I have I red streak on my tongue where the papillae is gone. I think it might be that, but just wondering if you have it. Sounds like not serious.Just another part of this! Have a great tripKay S

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Good idea and Happy Thanksgiving to you all. My cough is improving and less phlegm so that’s hopeful. Still a little nausea when eating so appetite still off. But I’m thankful we live in America and are blessed with such good medical care!
David

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Hi Katherine, Jan in GA here. I have been reading the posts, but have not added anything in quite a while. As you remember I was DX in May,”15…. after having pneumonia 3 times in 12 months…..went on the Big 3 twice. Ended up in the hospital twice. Lost 30 pounds. Decided not to take the meds as for me the cure was worse than the disease. Found a new MAC doctor at Emory/Atlanta. My main issue is fatigue. Some days are better than others, but I am still able to do anything I want….just takes me longer. I am working with a nutritionist, lung rehab and Dr. Colin Swenson. He recommended the Spiriva inhaler and it has been a HUGE help. My o2 stays in the 95 + range. I am not on oxygen. My last CT Scan he was delighted as my nodules had actually gotten smaller. YAY.
We have a doctor (surgeon) in our support group who has MAC. He recently went to the symposium in NJH in Sept. He spoke at our last meeting and gave such sound and comforting advise. Live your life to the fullest, don’t get so hung up on the disease it consumes your life and enjoy what life you have. He flies all over the country, wears no mask, and stated a nutritionist who spoke gave the most insightful information.
I was overjoyed to hear his “down to earth, sensible advice” as that is one reason I stayed off the internet. I was driving myself nuts trying to do all the things suggested. I just read, research and do what I think my body can tolerate.
Thank you Katherine for ALL your effort to keep us informed.
May God richly bless all of you and hold you in His mighty hand daily. May we all be thankful for the lives we have and enjoy each day, good or weary to the greatest of our potential.
Jan in GA.

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Glad to hear your ok katherine and happy thanksgiving to all. I will let you know as soon as I get the result of my culture test. I hope that the result is negative since I no longer want to take antibiotics since Im afraid of the side effects. As of now I still have excessive mucus usually early morning.Whenever I felt that I have excessive phleghm I go to the bathroom and expel the phlegm and I never had difficulty doing this it comes out easily and after doing this usually I dont cough the whole day. Im soo happy to find this forum I am a filipina and looks like no one here knows NTM. I did through researh about the disease so I can explain it to my friends and relatives. Im glad despite this illness im able to function normally so im still gratefull. MY HUGS AND KISSES TO ALL

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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philomena…congrats on the good news! tdrell

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Hello katherine, I’m so happy for your news. Did you do CT scan or the sputum culture? The Drs. the I saw never did sputum culture on me. When I see my Pul. Dr. end of this month I will ask him why he never mention about sputum culture. I still having hard time sleeping and I tried the unison and they gave wired feeling. Now I’m not taking anything for sleep. I’m so tired b/c of not sleeping. Thanks for all of you for your input. Happy Thanksgiving to all of you. Cila

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@katemn

Terri, you will note it is actually meant for doctors .. but frankly as you know I am big into due diligence! If there is something we don’t understand in it .. we can google ANYTHING! But after all this time .. there really wasn’t anything I didn’t get .. just some really nice info! Really once stop shopping .. maybe too much info for a really new person .. but man I sure wish I’d had it early on! It would have helped me SOOO much! It would have answered so many questions I had .. I really just kind of stumbled upon it but certainly wanted to share it! Hugs to you! Big things coming up for you .. right? Katherine

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dear Katemn….just re read the lovely note you wrote above….i digest better when reading on old fashion PC vs my Ipad or iphone..

I totally agree with the need to have my own set of records on everything done to my body…and l have it…l admit the piles need better organizing but l have it…and do have the recent NTM stuff in separate colored folder…and separate envelope for all the CDS of the tests done…I brought them with when l went to the September workshop in Denver and made sure by email and phone that the Medical assistant ( at National Jewish ) whose job is to collect all of that and give to the Mycobacterium Section crew had everything. There is even a template they use to list all that is needed (which impressed me)

As I continue to have cultures here done on sputum ,I will need to get those records…though ironically the first one which grew Mycobacterium (because the ID dr wrote to order specific to “Mycobacterium vs just asking for a culture) was sent to National Jewish for sensitivity. I am not sure if that is the labs usual routine or because l had told the ID dr l would be going there!

Per your suggestion l have put on my list for my appt in January at National Jewish the question of do l need to have a sleep study.
On the list is also what about the tonsils that appeared on the bronchosopy after being removed 67 years ago…what should l do about them? figure that with 7 days of seeing Dr Heuitt or the Nurse practioner assigned to her…l will get a chance to get answers.
tdrell

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@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

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nnassiri….not meaning to be a troublemaker…but l have two questions ….the sputum culture Order from the doctor has to be labeled…l believe….to check for Mycobacterium. My regular Dr months ago ordered “sputum culture” that showed “inflammatory cells” nothing re the MAC that showed up on a washing from my bronchoscopy. last month the infectious disease DR ordered a sputum culure specific for Mycobacterium (NTM) and it grew it.
Also are they doing chest CAT scans to monitor her?tdrell

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@imeehaigt

Hi Katherine and All Im 40 yrs old and was diagnosed with Bronchaectasis in 2007. I was never diagnosed with tubercolosis but My doctor prescribed me anti tuberculosis drug and undergo treatment for almost 3 years. After the medication I seldom had cough and felt very normal. However when I started working night shift 2005 I started to have dry caught and no mucus at all. I consulted my doctor and usually they prescribe an anti biotics. I noticed that there is really something wrong and after 2 years I began to cough with excessive mucus I continued to consult my doctor until she finally suggest me to undergo bronchoscopy and had may sputum cultured and I was diagnosed with MOTT or mycobacterial other than tuberculosis. My doctor prescribed clarithromycin 500 2x a day rifampicin 600 once a day and ethambutol. MARCH of 2015 my MoTT lab test was negative so My doctor told me to continue medication for a year after my lab test went negative. After A year my sputum culture was postive again. So I transferred to a different doctor and he advised me to consult and infertious disease specialist. My infectious disease specialist told me the bacteria might be a colonizer and since I am wearing braces there is a posibility that the bacteria are just between my teath so she asked me to repeat the sputum culture and collect specimen without my braces. I did not remove my braces but I made sure that I brushed my teeth throughly and gargled with moutwash before collecting sputum and my labtest result was negative so she told me not to undergo medication. But I continued to cough and this time I always have a excessive mucus which bothers me a lot since this is very embarassing at work. I dont take any medicine anymore but I take 1 gloves of garlic with honey 2x a day. I still have excessive mucus but it is easier for me now to clear the mucus. Any advice on how I can take care of my lungs. I am still working on night shift and thinking to have a day shift job since I suspect that my work shift is the reason I continued to produce excessive mucus. Thanks

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imeehaight…you have been on a log journey for sure! some questions that come to my mind after reading your info….what type of work do you do?? Have you had allergy testing?? Pulmonary function testing…chest CAT scan….tested for GERD? By EGD and esophagram?? Has asthma been ruled out? do you smoke?
tdrell

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