1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 28, 2018
In reply to @suzie2017 "I haven’t posted anything for quite awhile. My husband, who has MAC, COPD & Bronchieactasis had..." + (show)
@suzie2017

I haven’t posted anything for quite awhile. My husband, who has MAC, COPD & Bronchieactasis had a flair up and was in the hospital for 9 days. He came home with an IV and I was given a crash course in giving him the infusion every 6 hours. It worked out fine for the 4 days that he needed the antibiotic. While he was in the hospital he was diagnosed with pneumonia and pseudomonous again. The pneumonia is gone but the pseudomonous is still present but not active. It must stay dormant in the body until the next flair up. Right now he is not taking any antibiotics due to the side effects. He has gained back his appetite and for the first time in over 1 - 2 years, he has gained 2 pounds. Fully dressed he now weighs 110. He is extremely thin. He is very tired and sleeps about 11 hours at night and then he takes a 3 hour nap every day. I think it is the infections that make him so tired. He has two new nodules in each upper lobe with irregular borders. Anyone familiar with this type of nodules. I am worried that he is getting cancer but we won’t know for sure until the end of November when they do another cat scan.

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@suzie2017 Suzie, I am sorry to hear that your husband is having such a rough time. I know it is hard on you too. The pseudomonas can be treated not using any of the BIG 3. In fact, I don't think the Big 3 kills pseudomonas. One single antibiotic can treat that. I did nebulized tobramycin to get rid of it. I felt better in 30 days. I still nebulize the tobramycin every other month to keep it away. Someone else on this site took another single antibiotic and got rid of it as well. I will poke around and see who posted that and what they took. My Mayo clinic dr put me on a single, but alternating antibiotics for life. I have had only one infection since 2013, and that was pseudomonas. I got over that in one month on the tobramycin. It sounds like your husband needs to be on continuous monthly antibiotics indefinitely. (Not one of the BIG 3) His lungs are sick and damaged and therefore will always be prone to infections. Perhaps you can discuss that with his doctor. Note: when I do alternating antibiotics in pill form; it is only for 10 days a month. Thank you for the update on your dear husband. I hope he is feeling better before long.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 28, 2018
In reply to @margiebanks "@windwalker I live 4 and a half hours from Savannah but only 2 and a half..." + (show)
@margiebanks

@windwalker I live 4 and a half hours from Savannah but only 2 and a half from Jacksonville. My little town is in the southwest corner of Georgia 45 min north of Tallahassee. The deep south! I do see where you are being treated at Mayo in Jacksonville. I really think I should go there if they'll accept my insurance, if not there then perhaps Emory in Georgia as @oldkarl suggested. My pulmonologist is super nice but....after my own research I asked for and got an Airway clearance vest. (Not much help but I keep doing) also learned from this group I asked for a nebulizer w 7% saline and that was ordered but I never got the neb because it wasn't covered by insurance and the saline was $70 a month w insurance. I've since found out more info about using a coupon at Walgreens to get the price down considerably. May be able to talk to my insurance and push it thru on Part A or B. Anyway, I really think I need to nebulize because I hardly ever cough. I need to get this gunk out!! Anyway, it's just a blessing to have found this group!

I do have a dental concern/question I haven't seen addressed in the group (or haven't come across it yet). I have several old amalgam fillings that need to be replaced. It's on "onlay" process that covers 2 -4 surfaces of a tooth. Extensive, but not a crown. What if any concerns are there for dental work w MAC? I have had a hip replacement 3 years ago (before any lung diagnosis) and one dentist always has me take Cipro the day before and after a cleaning etc. Another newer (younger) dentist said thats "old school" and not needed 3 years out. I should have probably started a new discusion thread!

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@margiebanks, Another member on this site; @irene5, had a lot of dental work and believes she may have caught her mac there. The case for getting mac at a dental office comes from the water they squirt into your mouth. That is considered a source because the water sits in a bladder and tubing and can harbor mac. I had several teeth pulled recently and my two dentists did not use water at all; only the suction tube.

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Margie E | @margiebanks | Aug 28, 2018

@windwalker thanks for your response, will check out her page.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 28, 2018
In reply to @margiebanks "@windwalker I live 4 and a half hours from Savannah but only 2 and a half..." + (show)
@margiebanks

@windwalker I live 4 and a half hours from Savannah but only 2 and a half from Jacksonville. My little town is in the southwest corner of Georgia 45 min north of Tallahassee. The deep south! I do see where you are being treated at Mayo in Jacksonville. I really think I should go there if they'll accept my insurance, if not there then perhaps Emory in Georgia as @oldkarl suggested. My pulmonologist is super nice but....after my own research I asked for and got an Airway clearance vest. (Not much help but I keep doing) also learned from this group I asked for a nebulizer w 7% saline and that was ordered but I never got the neb because it wasn't covered by insurance and the saline was $70 a month w insurance. I've since found out more info about using a coupon at Walgreens to get the price down considerably. May be able to talk to my insurance and push it thru on Part A or B. Anyway, I really think I need to nebulize because I hardly ever cough. I need to get this gunk out!! Anyway, it's just a blessing to have found this group!

I do have a dental concern/question I haven't seen addressed in the group (or haven't come across it yet). I have several old amalgam fillings that need to be replaced. It's on "onlay" process that covers 2 -4 surfaces of a tooth. Extensive, but not a crown. What if any concerns are there for dental work w MAC? I have had a hip replacement 3 years ago (before any lung diagnosis) and one dentist always has me take Cipro the day before and after a cleaning etc. Another newer (younger) dentist said thats "old school" and not needed 3 years out. I should have probably started a new discusion thread!

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My bilateral hip implants were done over 10 years ago and I still take antibiotics before appointments. My old dentist said the same as yours, however my current dentist & my current Ortho doc agree there is SOME risk. The dentist REQUIRES me to premedicate, or they won't see me. When they see I am further compromised by bronchiectasis & MAC, I'm sure they will be even more insistent. Talk to your Ortho, pulmonologist or primary doc if the dentist doesn't want to prescribe.

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1 reply
soflo | @soflo | Aug 28, 2018

@windwalker Hi Terri, thank you for checking on me. I do appreciate it. Yes, I'm not happy that I'm having to go back and fourth with the insurance company. My doctor is having a phone conference with them tomorrow on my behalf. Either way I will be going to Mayo. I saw that Kate shared her news with you about her appointment with Mayo in October, that's awesome! I don't post much but I do read all of the posts ;). I will stay in touch with you publicly and share. I don't mind helping others so that they can get into Mayo as well. Thanks again for always staying in touch. Take care of yourself....hugs xx Dee

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2 replies
alleycatkate | @alleycatkate | Aug 28, 2018

Question for anyone....I just got my first pneumonia shot and have to wait a year for the 2nd vaccine. I came down with pneumonia this past winter. I see that many people on this chat page do get pneumonia...Have you all been vaccinated? Do you come down with it regardless of your vaccinations? Just wondering how effective the vaccinations are for folks with MAC that have had pneumonia in the past. Thanks for any input.

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3 replies
alleycatkate | @alleycatkate | Aug 28, 2018
In reply to @soflo "@windwalker Hi Terri, thank you for checking on me. I do appreciate it. Yes, I'm not..." + (show)
@soflo

@windwalker Hi Terri, thank you for checking on me. I do appreciate it. Yes, I'm not happy that I'm having to go back and fourth with the insurance company. My doctor is having a phone conference with them tomorrow on my behalf. Either way I will be going to Mayo. I saw that Kate shared her news with you about her appointment with Mayo in October, that's awesome! I don't post much but I do read all of the posts ;). I will stay in touch with you publicly and share. I don't mind helping others so that they can get into Mayo as well. Thanks again for always staying in touch. Take care of yourself....hugs xx Dee

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@soflo Hi Dee...I hope your Dr. can get through to your insurance company for a Mayo appt.!! Al so, hope you are feeling good! Kate

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ling123 | @ling123 | Aug 28, 2018
In reply to @alleycatkate "Question for anyone....I just got my first pneumonia shot and have to wait a year for..." + (show)
@alleycatkate

Question for anyone....I just got my first pneumonia shot and have to wait a year for the 2nd vaccine. I came down with pneumonia this past winter. I see that many people on this chat page do get pneumonia...Have you all been vaccinated? Do you come down with it regardless of your vaccinations? Just wondering how effective the vaccinations are for folks with MAC that have had pneumonia in the past. Thanks for any input.

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@alleycatkate I have received pneumococcal vaccine and have not had pneumonia. I don't think I've ever had pneumonia. But my doctor said I should get the vaccination due to my age (65).

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1 reply
america | @america | Aug 28, 2018
In reply to @alleycatkate "Question for anyone....I just got my first pneumonia shot and have to wait a year for..." + (show)
@alleycatkate

Question for anyone....I just got my first pneumonia shot and have to wait a year for the 2nd vaccine. I came down with pneumonia this past winter. I see that many people on this chat page do get pneumonia...Have you all been vaccinated? Do you come down with it regardless of your vaccinations? Just wondering how effective the vaccinations are for folks with MAC that have had pneumonia in the past. Thanks for any input.

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I got the shot also! My doctor said if I got it... I stand a better chance of recovering faster and it’s a chance of maybe not getting it. I think it’s great because it’s every 5 years.

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beverly1945 | @beverly1945 | Aug 28, 2018

I heard that there is another new one

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