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MAC Big Three Side Effects

MAC & Bronchiectasis | Last Active: Apr 19, 2023 | Replies (165)

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@susanlo

Thank you! Like you, i don’t much faith in my pulmonologist and after reading comments here, am very glad i have an appt with ID doctor soon after I see the pul. doctor next week. I live in north FL. by Lake City- I’m
at least an hour from the coast, but living somewhat rurally, I actually have well water into my house and I garden and sweep, shovel manure and clean up after horses and cows on a daily basis. I’m sure I got this either by way of water or soil even tho I was not knowingly immune compromised. I have been reading on other sites about using a nebulizer for MAC and even a very promising study using Manuka honey in a nebulizer-I assume it is “medical grade”, not what you can buy in retail.
Yes, I also find in my research that remission is the probable outcome versus cure. One article I read out of Miami stated (and I am paraphrasing here)”Mac may not kill you but you will die with it”. It sounds very daunting, all the side effects and length of treatment for a possible maybe helping the symptoms long term.
Do you believe your “MAC Guru” is credible and has better ideas? Is he in north Florida?
Good luck to you (and all of us!) and thank you so
much for your thoughts!
Susan

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Replies to "Thank you! Like you, i don’t much faith in my pulmonologist and after reading comments here,..."

The doctor my pulmonologist referred me to is in Tampa. Let’s just say I was losing hope and he instilled hope in me and my husband. First he asked me a few questions with one being when did I have my last CT Scan before the one in Dec 2022? I honestly couldn’t tell him. He asked if from my current medical group - yes. He called and asked whoever answered if they could check into it for him - and gave them my name and dob. Within two minutes he knew it was 2021 and for results to be sent to him. It may sound crazy but after 2 1/2 years of having my other pulmonologist avoid telling me what I may not want to hear (but needed to) it was a relief to hear a possible reason for my huge weight loss - 125 down to 97 in six months. My 2022 results were twice as bad as 2021. He had me do a sputum culture while in his office and walk it over to an adjoining hospital. He said he wanted to see me in 6 weeks (culture results will be back) When his nurse asked me what time did I want to come and I told her any time. She told me he was off that week but coming in just time see me. What doctor does that these days? He said I may have built up an immunity to my current meds so we may have to add a 4th. Everything he said was always displaying confidence we are going to make you better. No woe is me attitude. He even came out to talk to my husband as we were leaving telling him “I am going to take care of her.” I walked into his office hoping and praying he could help (unlike I felt when leaving my pulmonologist office). I walked out believing he ‘will’ help me. I go back next Wednesday.