Pulmonologist versus Infectious Disease Dr

Posted by bbeers @bbeers, Dec 2, 2023

I was diagnosed with MAC in August. Pulmonary Dr. wanted me to start Big 3 even though I have no symptoms. I asked if I could take one at a time rather than all three at once. He said no. I just wanted to space them out so I could determine which one, if any, was causing side effects. I decided to see an Infectious Disease Dr. and her approach is different. Do you have a preference over one type of Dr. to another. I feel like the ID Dr. might be better equipped to handle this disease. Thank you

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karen71 | @karen71 | Feb 24 10:46am

In reply to @rstel7272 "Get an Aerobika instead of the acapella. Much better anD you can sterilize it by boiling" + (show)

I’ll look into it. Thanks!

animasgirl | @animasgirl | Feb 25 8:53am

In reply to @karen71 "I have been in the big 3 since August 23. I was told I could take..." + (show)

I tolerated the big 3 for I believe almost 6 mos then I kept thinking my eyeglasses were dirty …..so I am saying be very aware of vision changes as it needs to be monitored. Color blindness as well .It crept up slowly .I hope it doesn’t happen but I also wish it was really emphasized to me prior.

karen71 | @karen71 | Feb 25 9:08am

Thanks. I was having some blurry vision and when I saw the eye Dr we did all the tests and it was dry eyes. The drops have helped a lot. I was really scared it was from the meds. Am watching closely.

bbeers | @bbeers | Feb 25 4:13pm

In reply to @animasgirl "I tolerated the big 3 for I believe almost 6 mos then I kept thinking my..." + (show)

Thank you for responding. I am really leary about starting these at my age of 75 1/2. Do I want to spend the rest of my life blind or just try to nebulize. Nothing has been suggested yet by the new Dr. who I see this week. Take care

blixtentoo | @blixtentoo | Feb 27 9:02am

I think the ID doctors definitely have a better perspective on MAC and meds. My ID doctor started me on the drugs one at a time for about a week then started another. I think this is standard practice now. Pulmonologists are not as keyed into the treatment I don't think.

blixtentoo | @blixtentoo | Feb 28 2:44pm

In reply to @bbeers "Thank you for responding. I am really leary about starting these at my age of 75..." + (show)

I understand what you're saying. I'm nearly 80 and recently started the treatment. I'm not sure it's the right decision but giving it a try. They also wanted to start me on inhaled Amikacin (Arikayce) but I've decided against this. They will test me on a monthly basis for vision and hearing changes.

bbeers | @bbeers | Feb 29 7:34am

In reply to @blixtentoo "I understand what you're saying. I'm nearly 80 and recently started the treatment. I'm not sure..." + (show)

I hope the treatment works well for you. Saw my pulmonologist yesterday and brought him a CD of a chest CT I had done back in 2016. When he compared that one to one from November of 23 he said there was change but not enough to warrant putting me on the Big 3 now. We will do a repeat CT in November and then take it from there.

Sue, Volunteer Mentor | @sueinmn | Feb 29 8:59am

In reply to @bbeers "I hope the treatment works well for you. Saw my pulmonologist yesterday and brought him a..." + (show)

Has anyone done a recent sputum culture to determine the level of infection, and what it is?
Sue

reneemc | @reneemc | Mar 1 3:46pm

In reply to @rstel7272 "Each person can be different but I found this schedule worked best for me. Ethambutol with..." + (show)

I take all 5 pills first thing in the morning on an empty stomach

bbeers | @bbeers | Mar 2 7:14am

In reply to @sueinmn "Has anyone done a recent sputum culture to determine the level of infection, and what it..." + (show)

I had a bronchoscopy in August of 23 and that's when the previous Pulmonologist wanted to put me on the Big 3 all at once without spacing them out over two weeks. That's when I decided to see an Infectious Disease Dr. who didn't think I should start the meds. She also advised me that I would still need a pulmonologist for the COPD etc. so I found a new Dr. The first one never mentioned ( back in 2016) that the radiologist who read the CT scan suggested possible MAC. Over the past 7 years he has not sent me for chest xray or CT. All he ever did were those spirometer tests every time I went. I am waiting for ID Dr. to call me back for an appt. with her. Thank you Sue.

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