MAC Big Three Side Effects

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

That’s a good point about increasing cases and the older population of Florida. That being the case, funding, research and study trials should be a priority for the state. They could certainly find a large number of volunteers while looking for effective treatments and a cure. Hopefully that will come soon.
It sounds like you are on medication overload. It’s got to be difficult for the body to adjust yo
the bombardment of drugs on top of effects of MAC.
How long have you been on the 4 drugs? Do you feel like any of your MAC symptoms changing/getting better?
Thank you for your comments. I appreciate all the information I am getting here. Good luck and I hope the nausea gets better very soon!

Angela, do you have a pulmonologist or a primary doctor who could prescribe the saline and nebulizer for you? When I was diagnosed, a pulmonologist prescribed airway clearance (nebulizer & saline) twice a day. I balked at doing it. I did not have a cough or any symptoms and didn’t ever cough anything up. She also referred me to an ID doctor who didn’t believe that the nebulizing with saline did anything. After reading from others here how important nebulizing with saline is, I stuck with the nebulizing and also use the autogenic drainage app. I have been able to avoid going on antibiotic treatment and my last two sputums have been MAC free. I no longer go to that ID doctor and do my nebulizing twice a day.

I had the extreme fatigue, and weakness long before I was diagnosed with MAC. It seems the MAC is the cause of most of it, though I still have it after 6 months on the meds. About every 10 days or so, I would sleep for 32 hours! Now that is much better, and I am VERY thankful.

Thanks- I, too, have found this site to be really helpful. I have been on the MAC antibiotic regime for 2 months so far, so no change yet. I expect it will be at least a year.

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.

Even tho the infusion isn’t an IV, it sounds pretty invasive with side effects. I hope the swelling subsides quickly after treatment. Everything with needles scares me, but it sounds like you are pretty stoic about it and keeping your sense of humor. Good for you! It seems like it would be easy to become overwhelmed with MAC and all the treatments and side effects and keeping up with it all. Good luck with the infusions! I hope they work well for you.

Why would a doctor be hiding something from you? Than is awful! I'm so glad you got your answer. I hope to hear how everything went on Wednesday. I see my ID doctor in a couple weeks to see how my cultures and CT look. I imagine after that treatment will begin. Blessings to you!

I actually see an ID doctor but that's very interesting!! I'm going to have to try to get one. I don't know if you can just buy them online or something? Thank you for all the useful information though!!

I have been on the big 3 antibiotics now for 8 months, which in the beginning I was very hesitant on starting keeping in mind that I am 76 years old. I have been somewhat lucky that I have mostly only had nausea often and diarrhea which is mostly gone now. However, I went to my vitroretinal specialist this past week and fail my second visual field test. Because of that and I am susceptible to getting glaucoma as my mother had it and went blind she took me off rhe ethambutol as that can cause glaucoma and eye problems. I checked with my infection disease Dr and he was OK with it. This is not that common but always something to be aware of. It is scary to think about the long road ahead on the antibiotics, but it is the best way to go unfortunately. It is much better then having to take the IV course.