(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 group.

@heathert

Hi Annie, I hope you get to go into the nitric oxide trial soon, breaking through the biofilm sounds great. Thank you so much for the information on it. I do not get tested again for 6 months so I would probably miss it also and like you say it is really for Aussies, not that I would mind living there for a bit!
I hope your new health issue is going well for you and I wish you all the best with it. Keep in touch and take care.
Huge Heather the Kiwi.

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Hi folks, is anybody else using 6% or 7% saline in their nebuliser every day?
I think it helps quite a bit. My lungs are clearer now after using it for a few weeks.

I was on 3% saline but couldn't clear enough sputum at all with that.
The first few inhales make me cough a bit but it is fine after that.

I hope all of you are going okay.
Virtual hugs to everyone
Annie

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@anniepie Yes I neb 7%saline twice a day, I feel it is good and others swear by it. So glad you have moved to 7%.

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I just received an email newsletter from NTM Research and Information that I thought would be good information for everyone. One subject is the shortage of sodium chloride and the other is a research study.

National Jewish Health has sent out the following information regarding the current shortage of inhaled hypertonic saline:

Currently there is a nationwide shortage of sodium chloride. This is impacting patients with bronchiectasis who perform twice daily airway clearance with hypertonic saline which is also known as sodium chloride. The standard of care is hypertonic saline 7% but it also comes in 3%, 10% and 0.9%. It is not typically advised to use 10% for self-administration; 0.9% or 3% would be acceptable substitutes. All of these solutions are formulated for inhalation. It is STRONGLY discouraged to create your own solution as it could cause serious harm to your lungs.

We are currently advising patients to continue use of their flutter devices and vest therapies twice daily or as prescribed and resume normal airway clearance routine once these products become available again.

NTM Info & Research has reached out to senior government officials currently working on supply chain issues to make them aware of the severity of this shortage and its significant impact on the health and well-being of patients. We will continue to monitor the situation and provide updates as we receive them.

Now recruiting participants for an interview and questionnaire-only research study of NTM MAC lung disease

We are currently recruiting patients with NTM MAC lung disease to participate in a research study being conducted by Evidera, a research organization, with funding from AN2 Therapeutics, a biopharmaceutical company.

Study Goals: The goal of this interview study is to better understand the symptoms and impacts of MAC lung disease to help Evidera pick or create questionnaires to be used in treatment studies of this disease.

Study Activities: If you qualify and choose to participate, you will be asked to do the following:
• Have your medical team complete a brief form that confirms you meet study requirements
• Sign an electronic consent form and complete a few questionnaires about your health and your demographics (age, sex, race, etc.)
• Participate in a telephone interview lasting about 60 minutes with a researcher from Evidera. During the interview, you will be asked to describe the symptoms and impacts you experience as a result of MAC lung disease. You may also be asked to discuss a new questionnaire about MAC lung disease symptoms to make sure the questions make sense and are relevant to your experience.
You will not receive any treatment as part as this study. You will receive $200 if you complete all of the above activities.

To Learn More: If you are interested in learning more, please contact Evidera at NTMlungstudy@ppd.com or toll-free at 877-888-3232.
@lindam272

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@katemn

Boomer, Dr. Timothy Aksamit of Mayo Clinic, Rochester MN speaks all over the world on MAC .. and he told me he feels there is a connection between GERDS and MAC despite there not being proven research .. that statement is good enough for me.

Then recently Terri had this experience at National Jewish Health for MAC .. another “mecca” ..
@tdrell .. terri The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept.

I think the two experiences give us a very good feel for not discounting GERDS being connected to MAC .. since there is very little money for researching MAC .. it results in very little clinical association/research to prove the hypothesis.

Since as Terri said .. the MAC RESULTS from the GERDS .. it ends up with continuing treatment for the GERDS .. and/or treatment for MAC. Katherine

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I believe my MAC is definitely connected to GERD which I also have. Also it seems I have constant sinus infections which may be connected. Ironically, I had to take Ceftin on Oct. 27th last year and didn’t start coughing again until just recently. Will see ENT again next week for Sinus.

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@nac1

I believe my MAC is definitely connected to GERD which I also have. Also it seems I have constant sinus infections which may be connected. Ironically, I had to take Ceftin on Oct. 27th last year and didn’t start coughing again until just recently. Will see ENT again next week for Sinus.

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There is a strong correlation in some people. In my case, I have no GERD, silent or otherwise, based on extensive testing. But I too have had chronic sinus infections in the past (fixed by roto-rooter and septoplasty) as well as asthma, allergies, hyperreactive airway, and repeated episodes of bronchitis & pneumonia. It is believed my MAC came from exposure to soil contaminated by feral chickens.

Sue

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Hello – I wanted to follow up with my use of inhaled Tobramycin that I began using for pseudemonas in the late fall. I had usually used Levofloaxin, which always cleared it up, but I was concerned about my using it for so long and read about all the issues with neuropathy. So I tried the Toby and was hopeful as many of you said you had used it to clear up the pseudemonas. Well, it did not go so well. First, I lost my voice for about a week, then that finally cleared up, but with each day of using it, I just felt very sick. Then, I found that I was having a hard time breathing. The doctor said to use inhaled albuterol before inhaling the Toby; I did that, and it helped a bit, but I was still feeling very sick, all day long. So after 18 days of using this VERY expensive drug, I just stopped. Miraculously, the 18 days was enough to get rid of the pseudemonas and I just stopped coughing. I had another sputum sample taken a month later, and it was indeed gone. I feel lucky, as most of you had to be on the Toby for a month, then wait a month, and use the Toby for another month. I have had pseudemonas now on 4 different occasions, and I can only assume I will get it again at some point. I may go back to using the Levofloaxin in that case, as the inhaled Toby just made me feel SO sick. Best to you all, Pam in Sudbury, MA

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@pamelasc1

Hello – I wanted to follow up with my use of inhaled Tobramycin that I began using for pseudemonas in the late fall. I had usually used Levofloaxin, which always cleared it up, but I was concerned about my using it for so long and read about all the issues with neuropathy. So I tried the Toby and was hopeful as many of you said you had used it to clear up the pseudemonas. Well, it did not go so well. First, I lost my voice for about a week, then that finally cleared up, but with each day of using it, I just felt very sick. Then, I found that I was having a hard time breathing. The doctor said to use inhaled albuterol before inhaling the Toby; I did that, and it helped a bit, but I was still feeling very sick, all day long. So after 18 days of using this VERY expensive drug, I just stopped. Miraculously, the 18 days was enough to get rid of the pseudemonas and I just stopped coughing. I had another sputum sample taken a month later, and it was indeed gone. I feel lucky, as most of you had to be on the Toby for a month, then wait a month, and use the Toby for another month. I have had pseudemonas now on 4 different occasions, and I can only assume I will get it again at some point. I may go back to using the Levofloaxin in that case, as the inhaled Toby just made me feel SO sick. Best to you all, Pam in Sudbury, MA

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I am so happy that you were able to tolerate the Toby for long enough to get rid of that horrible pseudomonas. I only lasted seven days on it before breaking out in hives and am still struggling to keep it suppressed enough to not treat. Prayers for you and your continued negative tests for pseudomonas. -Echo

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I am new to this forum and relatively new to MAC. Actually, MAC is not what I have been told I have, but rather M. Chimaera, which I believe is another form of the nontuberculous bacterium. My infection is due to an open heart surgery preformed 28 months ago. I presented with a small fluid cyst at the surgical site on my sternum. The cyst was removed and it contained a surgical wire covered with fungus. Fungus was sent to Pathology, then on to an Infectious Disease Specialty Hospital in Denver. After waiting at least six weeks the culture grew M. Chimaeraj. I was originally prescribed Ethambutol, Rifabutin and Azithromycin and two weeks later Amikacin was added via CVC line. Before I go any further, please let me know I am writing my story in the correct "group" setting. Thank you.

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@smileygirl47

I am new to this forum and relatively new to MAC. Actually, MAC is not what I have been told I have, but rather M. Chimaera, which I believe is another form of the nontuberculous bacterium. My infection is due to an open heart surgery preformed 28 months ago. I presented with a small fluid cyst at the surgical site on my sternum. The cyst was removed and it contained a surgical wire covered with fungus. Fungus was sent to Pathology, then on to an Infectious Disease Specialty Hospital in Denver. After waiting at least six weeks the culture grew M. Chimaeraj. I was originally prescribed Ethambutol, Rifabutin and Azithromycin and two weeks later Amikacin was added via CVC line. Before I go any further, please let me know I am writing my story in the correct "group" setting. Thank you.

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Yes, even though your NTM is different from most of us, this is the right place. There are also some specific discussions here: https://connect.mayoclinic.org/discussion/m-chimaera/

There are many of us who have or have had M Chimaera in our lungs, and a few who have it from open heart surgery like you.

Welcome to our community. Do you have questions about your treatment?
Sue

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Thank you for inviting me in! Open heart surgery 28 months ago went fine. On last Cat Scan a cyst was found on the sternum bone. Upon removal a sternal wire was removed that was covered in fungus. After 6 or 7 weeks this culture grew to be M. Chimaera and my life changed. I was told a machine used in the operating room was contaminated and caused the infected mist that applied itself to my open wound. It is a very slow growing infection so appearing at this late stage does not seem out of character for this infection. I was immediately referred to ID and was told the rigorous treatment that is involved for getting rid of this infection. I was given no alternative, it was take the treatment or suffer through the wrath of the infection which does not have a high survival rate. Within two days I was taking Ethambutol, Rifabutin and Azithromiycin (6 total, orally, each day) and 10 days later the drug Amikacin taken by infusion, three times a week. Right away I noticed diminished hearing; fatigue; balance issues and when a blood draw was taken, my liver enzymes were 800+ and 600+. We stopped everything for a few days and now have started adding back in each drug, one at a time. In the meantime I started taking 100 MG of Clofaximine. I am currenting taking that med along with Ethambutl (3 tabs) every day. My hearing is getting worse and I am noticing eye changes. My skin is extremely dry and itchy. Fortunately, I have not experienced any stomach issues nor skin color changes. While taking all of these meds I have had to have an operation to remove the infection that was found around my sternum incision (this was located via a PET Scan). A golf ball sized area was removed and the cavity was filled in by some stomach fat that was transferred to the open cavity. That all seems to be healing fine. I feel like a ping pong ball in that I am going somewhere, hospital related, almost every day. The fatigue and rigid appt. schedule keep me tethered to the house or a medical facility. Until this forum, I have never heard of anyone having to experience this before. Is this something that can be cured or will I be "treating" this situation as long as I live? I have always considered myself "a fighter"; in this case I'm not sure what is realistic to fight for. Give me some hope, please.

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Hi I am taking 3 antibiotics for MAC and one through IV. I was wondering if someone considered Surgery as an option…I don’t know if this will help..
Carlos

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@mayocarlost

Hi I am taking 3 antibiotics for MAC and one through IV. I was wondering if someone considered Surgery as an option…I don’t know if this will help..
Carlos

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Maybe Terri, @windwalker can answer you. I probably would consider lung surgery only as a last resort.
Sue

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