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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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Hey everyone, just switched to a pulmo specializing in NTM's who I found on the NTM info website. He stated unequivocally that sputum tests are less than accurate, and recommends a bronchoscopy, period. He said he would never do or rely on sputum sampling for a dx - an accurate dx...
Wanted you to know.
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1 Reactionkwilbur...why are you so hard on your body...6 hours of pressure washing??also....l think I recall that there is a scale used with lung nodules..."a Gleason scoring" that evaluates the size of lung nodules " and the risk of being significant. ask a radiologist about it.UPDATE...CORRECTION....the name of the system /recommendations for evaluating pulmonary nodules is called is from the Fleischner Society....not the Gleason system as I said before. My apologies...tdrell
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1 ReactionKatemn...awesome awesome that you are stable!! thank you for sharing. A type of gift for the holidays!tdrell
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1 Reactionboomerexpert....awesome news....and bronchoscopy is not bad....especially if he/she does alot of them...keep us posted ...good for you !!!tdrell
Great news Katherine! I haven't written in awhile so here goes. I left my pulm. Dr at Duke. You would think they would be good, right? It's Duke! But, as we know there are many docs out there that just aren't well informed and you have all educated me so well I can tell when someone knows what they are talking about. Met with new Dr. at UNC Center for Bronchiectasis Care where they treat not only bronch. but MAC as well (which I have). I have a mild case with only mild symptoms - no appetite, mild weight loss, mild fatigue (not sure if that's the MAC or my lifestyle!). My doctor is holding off on drug treatment for now but I am using an Aerobika to help me break up some of the mucus and she said that can actually reduce the amount of MAC in my system. I have to go in every 3 months for lung function tests - if there's a 10% decrease in my lung function we rethink the game plan. I also have a six month ct scan or chest xray. If it's stable I can go yearly. I see her again next week but I think the appts with her do the same thing. 3mths, if stable go to 6 mths and then to a yearly. If I have a cold/respiratory issue I have to come in with a sputum sample which so far I haven't been able to do. I don't cough anything up - never have. So far I feel comfortable with her other than her saying that I'm contagious to people that are undergoing chemo. I know I asked you about that Katherine. That was in a writeup she gave me to read after my last appt. I'm going to ask her about that next week as I haven't read that anywhere else. So, I'm very skeptical about that. Overall, I feel great. I wish I could send that healthy energy to those of you that struggle so much. Instead, I'm sending you good thoughts and wishes that you will have better days ahead. Janet
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3 ReactionsHello tdrell
The sputum culture showed MAC but the doctor asked her to do a CAT scan and re do the sputum culture one more time. He also asked her to keep taking the Symbicort Inhaler - this medication works like a magic, she stopped coughing since taking it.
God bless you.
nnassiri
Thats fantastic news! Im still doing ok, still on the inhaled amakacin and will have a ct at six months on it which I think will be in Feb nxt year, and still on the big 3 also. Just bought a aerobika so am going to try that to get something up and out with that. Just a waiting game, I would like to hear how the trial is going with everybody else but havnt heard yet.
Hope everyone is doing well and thanks for asking. Heather
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1 ReactionI just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any result of lab test my doctor ASSUMED that I have MDR TB or multi drug resistant tb although my xray and xt scan is negative from TB he prescribed streptomycin and before I was discharge at the hospital he discontinued the streptomycin and asked me to take gene expert test. While I was at the DOTS clinic. For those who are not aware what DOTS is this is a govertment program for drug resistant TB patient who undergo treatment for free but they need to go the the clinic everyday to take their medicine. While I was there, I saw their patients ang they look very sick and fragile they are very thin almost like a skeleton with a skin. I already knew that I dont have TB since compared to them I look very healthy. They even asked me if who is the patient and was suprised when they learned that it was me. While waiting and observing patients around me I felt depressed and was really afraid if my result will be positive. I do not know if I can endure going there everyday and seeing this people who looks very sick. I raelly prayed for miracle and my prayers were answered Im negative from TB so they did not continue the gene expert test. I went back to my pulmonologist and he said we need to start medication while waiting for the result of my culture test. After 45 days I got the result and Im positive of NTM. After taking months and months of taking antibiotics I always tell him that I dont feel any improvement at all. he said that this is normal since it will take more than a year to cure MOTT. After 18 months my culture lab test was positive again for MOTT he again referred me to DOTS and requested for gene expert test Thats the time that I transferred to a different pulmunologist and the new pulmonologist is the one who suggested that I need to get a 2nd opinion from infectious disease specialist. I wanted to sue my ist pulmonologist Ive wasted time and money for my medicine due to his lack of knowledge about treating NTM.
Hi imeehaigt, welcome! I'm glad you find this forum. not many Dr. knows about MAC. Do you in states or Philippines? My own family Dr. don't know anything about NTM ha said I know more about the MAC than he does now. You can read all the post and hopefully will help you.
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1 ReactionHi tdrell, I need a favor. When you go to NJH can you ask the Dr. if the water coming from the fridge which has filter then boil it before I drink is safe for bacteria. I stop taking showers I take a bath now. Thanks for your time. Cila