(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

@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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That is what I am currently taking, on month 6.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Any problems with them?

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@tdrell

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia….but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

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@clpc and @suzie2017. I and a few others on this site also have some arthritis. From articles I have read about mac; many people with this disease also tend to have arthritis. More commonly, rheumatoid arthritis. I think it has to do with poor immune system.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@egayle187 Hello. I just read your post and see that you plan to return to gardening. I love do that also. I hope that you know to wear a mask when working with potting soil. It has over a million mac microbes per teaspoon. I am so afraid of re-infection, so I now have my husband do the digging and re-potting for me. I still enjoy gardening by picking out the plants at the nursery and picking out the spots where they will go in the yard. Also, remember to wear gloves or wash ypur hands good after trimming/handling leafy things. Leaves are known to be a source for piicking up pseudomonas, another bad microbe that commonly attacks those of us with compromised lungs. I don't mean to be a Debbie-downer. I just want all of us to be as healthy as we can.

Liked by tdrell, ginak

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@sophie1019 Hi Sophie, thank you for jumping in with your response. Congrats on getting off of the 'Big 3'! I hope that you stick to the info on how to avoid re-infection. You mentioned losing 22 lbs.; I had lost 26 lbs. With the mac under control, I have gained 16 lbs back and continue to gain more. Did you get lab results back recently showing that the mac is gone?

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Thank you for the suggestions. I wasn't thinking of the mask outside, but moving the indoor plants to the back porch left me coughing all night.I'm so glad you reminded me of the reinfection possibility. Asthma keeps me inside most of the year and I was ready to jump right in as soon as the air warmed up. I'll be careful.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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No I still have a very small cavity in my upper left lobe. The pulmonary doc said he would keep a check on the cavity, and since I feel good, walk everyday, he would give my body a rest. I was also on an iv drip, three times a day. The med was called imipemem, or something like that. No side effects whatsoever. So far, so good. He gave me a prescription of predisone, just in case I start feeling bad. That stuff works very good for me. A 20 MG tab for 5 days. When I take the very first one, it seems to knock out whatever is trying to creep up. He then told me to call him asap, and get in to see him if I start to feel terrible and the predisone don't work…. pray for me as I do for others in this forum…

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Sophie, you will be in my prayers! Hang in there and keep up the good work!

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Thank you. The prayers mean a lot.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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I will pray for you, that is something every one of us can do for each other.

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It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news….they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group…i miss you wonderful friends here too!!!

Thank you,
Julie

Liked by tdrell

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Julie, the isoniazid should be ok. Two of my children took it for a year and had no side effects. Vitamin B is wonderful. The methotrexate, unfortunately, messes with your immune system. Neuropathy is no fun. You are not alone in your struggle with this – latent TB is still a mycobacterium. I have scar tissue from being exposed as a youngster to TB. Whether that contributed to MAC now is anybody’s guess. Wishing you peace of mind!

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Sorry for so many worries. I have just been diagnosed with neuropathy in my feet. My doctor did a blood workup and called me at home because was concerned with my high B6 level. She called it "alarming." Said to get off all b6 immediately, that high levels kill nuerons…that this may be the cause of the neuropathy. .I had been taking various energy drinks which are loaded with B6. She also said it takes about 8 months to b clear it. I started reading labels. Few people know the danger of over doing vitamins. Wishing you better days.

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@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news….they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group…i miss you wonderful friends here too!!!

Thank you,
Julie

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I'm glad you shared about recent diagnosis of latent TB here, @jewel8888. Glad you came back so we can support you. A new diagnosis is a punch in the gut for sure. We're here for you.

For anyone looking for the group about tuberculosis, it can be found in the Infectious Disease group https://connect.mayoclinic.org/discussion/looking-for-patients-that-have-latent-tuberculosis-and-know-about-their-medicines/

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@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news….they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group…i miss you wonderful friends here too!!!

Thank you,
Julie

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HI COLLEEN, MY NAME IS TONI ANN AND I HAVE MAC ,PLUS AN INTERSTITAL LUNG DISEASE SEPERATE FROM MAC I WAS EXPOSED TO THETOXIC CHEMICAL PERC FOR DRY CLEANING CLOTHES .MY HUSBAND AND I WERE IN BUISNESS OVER 40YRS WITH 9 FULL OPERATING STORES ALL USING PERC THAT OSAHA APPROVED UNDER FED. LAW. YOU NEVER KNOW WHAT DANGER IS AROUND YOU .MY QUESTION IS CAN MAC GO INTO TUBERCULOSIS.ONE DOCTOR TOLD ME, NOT LIKELY AND MAYBE NO ANOTHER SAID' WE ARE STILL LEARNNIG THE DAMAGE THIS MONSTER CAN DO AND I'M NOT RULING IT OUT' I'M NEW ON THIS SITE,AND IT HAS BEEN THE MOST HELPFUL , BECAUSE OF EACH OF YOU SHARING YOUR LIFE WITH OTHERS. I'VE BE ALONE IN THIS MESS ,OTHER THEN MEDICAL PEOPLE AND NONE AS FOR AS I KNOW HAVE MAC OR ANY OTHER LIFE TAKEN LUNG DISEAES. SO AGAIN' THANK YOU SO MUCH . I NOW HAVE FRIENDS IN MY WORLD TONI ANN IN LOUISIANA

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