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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
@anniepie Hi Annie. I feel weird saying to newcomers; "Welcome to our group." Nobody wants to be in our group; but, here we are. I do not mind at all sharing with you who I see at Mayo. I owe him my life. His name is Dr. Jack Leventhal. He is located at the Mayo in Jacksonville. I feel certain that you could visit any Mayo (there are 3 in the U.S.) and all of their drs are top notch; no matter who you see; you would be in good hands. They only hire the best. I am sorry that you feel so bad right now. With the right treatment, I think you will feel. & get better. I can tell you this; we all need to keep a hard copy of our lab reports. Those reports are so important. You will be able keep track WHEN you were infected, the exact SPECIE of your infection, and a record of your suseptibility test - (what drugs work against your strain of mac.) I also keep a record of travels with that lab file. Of people I have stayed with too in my travels. Why? Because some of my friends and family that I stay with live in older homes and may have molds, etc. in their environment. For example, I picked up a black mold in my lungs after visiting a good friend of mine in Va. She was renting a place that I learned later had a mold remediation issue. My point is, by keeping records, you can pretty much track your active infections and learn where you catch them. Then, you learn how to avoid them. I would like to learn more about what you know so far with your condition; if you are ok with that. That way, I can try to guide you in what you should ask your dr to make sure that you have a knowledgeable and active part in your recovery.
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@windwalker Thanks again Terri - it's a precious gift for us newcomers to be helped by someone who has been through it and succeeded. I'm actually in Australia (hi @heathert in NZ). There's not much experience in Australia but I'm at one of only 2 NTM clinics in the country. Here they want to use the standard Big 3 drugs in the ATS protocol with all the toxic risks and sometimes not very good success rates really.
Mayo is respected internationally, Terri. Thanks so much for info about your Mayo doctor. I'd really like to find out if he has treated many MAC/MAI patients successfully with the protocol you mentioned: Antibiotic 1 for 10 days in month 1 and antibiotic 2 for 10 days in month 2, alternating. (If so, I hope he publishes it, I'd like to show my pulmologists here so I can try it). Thanks for explaining you'd been really ill too but succeeded at the 12 month mark. If it's okay, I might write to him at Mayo to find out more about it. I'm very interested.
You asked for my clinical details: I was diagnosed recently with M. Intracellulare MAI by CT scan and 2 positive sputum tests. I have bronchiectasis and recurring MAC/MAI symptoms - lots of fatigue and weakness, fever, lung pains, coughing etc. Unfortunately, my GP/primary doctor and I just discovered that M. Intracellulare was found in a bronchoscopy I had at a different hospital more than 3 years ago but they messed up and didn't send the results to my doctor or me. So I've been left untreated but getting worse for more than 3 years. I've been unable to work for nearly 3 months now -- I tried but couldn't make it through a day. I'm older than you Terri, I'm 65, but had previously been working well and planned to continue -- a 'young 65' LOL -- but now I need to retire. I've got some complications to work around: recurring vasculitis (skin) that needs immunosupressive treatment - not good with NTM. And I'm hypothyroid so some drugs interact with my thyroid meds.
Anyway, my heart goes out to everyone posting on this site and I wish us all the best. This is the best forum group I've found online - the kindest people. Thank you all for your support for all of us. Hugs, Annie