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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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Any problems with them?
@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.
@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.
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2 Reactions@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?
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.
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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1 ReactionSophie, you will be in my prayers! Hang in there and keep up the good work!
Thank you. The prayers mean a lot.
I will pray for you, that is something every one of us can do for each other.
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1 ReactionIt'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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