Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!
KateMN
phyllistamara
@phyllistamara
@phyllistamara
Posts: 8
Joined: Feb 02, 2019
@spencersok @physillistemara My wife was on the same three med as you mentioned. She was able to tolerate them for six months. Of course she had other medical problems. She is immunosuppressed due to liver transplant. Eventually she will have to go back on something to suppress her cough. I am going to suggest, if you do go on the meds, please do regular checkup to make sure the side effects are worse than the cure.
Thank you so much
jammer
@jammer
@jammer
Posts: 35
Joined: Nov 14, 2018
phyllistamara
@phyllistamara
@phyllistamara
Posts: 8
Joined: Feb 02, 2019
@tdrell everyone….two NTM workshops coming up…one in texas. in spring 2019…go to NTMINFO.org to see one……the other in Denver at National Jewish Health on Saturday Sept 21 2019. I have emailed the texas one to see if it will be video taped for those of us unable to attend…..probably the NJH one will be taped.
Other items you might be interested in…..
on NationalJewish.org there is a posting from January 17. 2019 that their advanced Diagnostic Laboratory has launched " a new line probe Molecular Assay to rapidly detect NTM infections and identify NTM species and drug-resistance markers at a molecular level within 48 hours after obtaining a sample from culture. It is the first and only Laboratory in the United States to offer such a test…….is an accurate test that allows rapid differentiation ofM.tuberculosis from several frequently encountered NTM species including the slowly growing M.aviam, M.intracellulare and M.chimaera as well as several rapidly growing mycobacteria , including M.abscessus and its subspecies…………….." it goes on with more uses of this new test.
it says to visit njlabs.org and search for AFB6.tdrell
Thanks for the info
Liked by tdrell
irene5
@irene5
@irene5
Posts: 377
Joined: Oct 03, 2016
@tdrell everyone….two NTM workshops coming up…one in texas. in spring 2019…go to NTMINFO.org to see one……the other in Denver at National Jewish Health on Saturday Sept 21 2019. I have emailed the texas one to see if it will be video taped for those of us unable to attend…..probably the NJH one will be taped.
Other items you might be interested in…..
on NationalJewish.org there is a posting from January 17. 2019 that their advanced Diagnostic Laboratory has launched " a new line probe Molecular Assay to rapidly detect NTM infections and identify NTM species and drug-resistance markers at a molecular level within 48 hours after obtaining a sample from culture. It is the first and only Laboratory in the United States to offer such a test…….is an accurate test that allows rapid differentiation ofM.tuberculosis from several frequently encountered NTM species including the slowly growing M.aviam, M.intracellulare and M.chimaera as well as several rapidly growing mycobacteria , including M.abscessus and its subspecies…………….." it goes on with more uses of this new test.
it says to visit njlabs.org and search for AFB6.tdrell
Thank you!
Liked by tdrell
@jammer ty for your reply tdrell , I am the one with M. Gorgonae my doctor said that I need treatment because the infection is eating holes in my lung
– – I have a hole in my lung big enough to put your thumb inside with thick edges. So will continue with antibiotics – does positive thinking help with side effect of medication. 🤣🤣🤣 Any thoughts on those of you who have walked the path.
Liked by anniepie
phyllistamara
@phyllistamara
@phyllistamara
Posts: 8
Joined: Feb 02, 2019
@debminuet Phyllis this is Deborah I'm now on my third month of if I ethambutol rifampin Azithro , i'm 57 and originally started taking the rifampin early in the morning only I've changed my routine because I think that's stressful on the body no I take the ethambutol and Azithro with food late morning and then a couple of hours before another middle of the day meal I take the rifampin I don't empty stomach. This way I'm already focused on the day and sufficiently distracted in a conscious way and it tends to stop me from getting anxious at all in reference to the medication side effects . I drink lots of water probiotics and I am very careful not to wear myself out. It's not easy but it's not impossible. Whoever thought I'd be giving these kinds of suggestions Im still being aware of getting needs met and pacing myself I hope it this helps one day at a time. Surround yourself with as much comfort as possible!
Thanks Deborah.
for all your info. What probotic do you take. Also, I worry about how Ethrambuton affects most people’s eyes as I have very little site in my L eye
irene5
@irene5
@irene5
Posts: 377
Joined: Oct 03, 2016
@bevmac I think practicing mindfulness helps. It’s all in the attitude! My ID doctor recommended mindfulness for me. There is a lot online if you are unfamiliar with it.
Liked by Terri Martin., Volunteer Mentor, anniepie
boomerexpert
@boomerexpert
@boomerexpert
Posts: 485
Joined: May 13, 2016
@unicorn THIS IS TO everyone. My son having baby soon, I will be around a lot, What cautions if any should i take, Mask all the time? I can get fancy one and be a super hero…….
MAC/Bronchiectasis are not airborne contagions in either direction…if you have something else that might be, ask your doc…
ling123
@ling123
@ling123
Posts: 340
Joined: Apr 06, 2017
@boomerexpert MAC/Bronchiectasis are not airborne contagions in either direction…if you have something else that might be, ask your doc…
@boomerexpert For people who get infected by stirring up soil, is that not airborne?
boomerexpert
@boomerexpert
@boomerexpert
Posts: 485
Joined: May 13, 2016
@ling123 @boomerexpert For people who get infected by stirring up soil, is that not airborne?
That is not person to person contagion
ling123
@ling123
@ling123
Posts: 340
Joined: Apr 06, 2017
@phyllistamara Thanks Deborah.
for all your info. What probotic do you take. Also, I worry about how Ethrambuton affects most people’s eyes as I have very little site in my L eye
Hi Phyllis,
Good to hear from you. I take liquid (refrigerated) probiotics ie live not freeze dried I just reckon they are more easily biologically absorbed! I take capsules when away the more more per billion per capsule and I only go to Whole Foods for them.
When I first took the ethambutol I had my eyes tested every four months for year. It was expensive but it to give me a baseline for what I can tolerate . I was fine no problems. I haven't had my eyes tested and I'm not going to unless I have to be on the big 3 for over 6 months thi time. Last time I was on the big 3 for a year every other day. As much as it's the optic
Nerve that can be affected it's the possible colour differentiation problems that can be more probable. Only we are all different. Id say check it out with the eye exams to be conservative one can't loose!
Hang on there!
sueinmn
@sueinmn
@sueinmn
Posts: 113
Joined: Aug 12, 2018
@unicorn THIS IS TO everyone. My son having baby soon, I will be around a lot, What cautions if any should i take, Mask all the time? I can get fancy one and be a super hero…….
Hi unicorn. My daughters, both nurses, one in an ER, and my doc have assured me there is no risk of transmission to my little grandkids. The only restriction my doc gave me was to stay away from my transplant patient cousin until I have 2 clean sputum cultures. That's because he is immunosuppressed. In fact, I am far more likely to catch a virus or infection from one of them.
sueinmn
@sueinmn
@sueinmn
Posts: 113
Joined: Aug 12, 2018
Here is a new question for all of you. How common is multi-generational occuence of bronchiectasis?
My mother had bronchiectasis, probably from a combination of recurrent lung infections and rheumatoid arthritis. She had bouts of pseudomonas pneumonia, but died in her 80's from heart issues after several strokes.
I have bronchiectasis, probably from chronic asthma and serious lung infections. I also have MAC and have had pseudomonas pneumonia.
My husband has bronchiectasis too, from rheumatoid arthritis, but no MAC or pseudomonas.
Now our under-40 daughter has been diagnosed with bronchiectasis. She has at least one genetic marker for CF, but tested negative for the disease at the university of Minnesota. She has had chronic lung, sinus and digestive issues for most of her life, including bouts of intractable asthma. She is being tested for MAC. Another daughter has no known lung issues at this time, but had asthma as a child and teen, and gets pleurisy almost every winter.
One of my siblings also has bronchiectasis, as well as serious allergic and lung issues.
Is anyone aware of any cross-generational studies?
Liked by america
@unicorn
In reply to @boomerexpert
THIS IS TO everyone. My son having baby soon, I will be around a lot, What cautions if any should i take, Mask all the time? I can get fancy one and be a super hero…….