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Possible MAC diagnosis
My Pulmonologist is trying to rule out that I have MAC. I’ve turned in two sputum cultures both refused due to to much saliva. I’ll do another one the 25th this time induced at the hospital. My questions are I’ve heard many people on these forums that have had MAC in the past. How in the world did you get through it!!!! My Dr. did tell me I probably won’t feel any better for the next 6-8 weeks until the 25th culture comes back. I’ve heard everything from limit showers, eat less, increase airway clearance daily. I know how I feel now and it’s awful. Sinus headache, increased mucus low energy, etc. any other tips will be forever grateful. Thank-you.
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Are you losing weight? Never heard of a recommendation of eating less.
Well Rick, I have lost weight but it could be from other medical issues. I also have NSIP with fibrosis, & of course Bronchiectasis. I have had 4 sputum cultures over the past 3 years for Mycobacteria at Mayo Jax, and all have been negative. With the last one being 1/30/24. I actually live in upstate NY and get treated at the University of Vermont, in Burlington in summer and Mayo Jax in Winter when I’m down south. This July my Pulmonologist suspected I had a lung infection, I was treated with Doxycycline and it broke it up. Immediately following that I had low sodium blood count and Dr. said MAC can cause low sodium in blood. I’m doing another culture this week, but takes 6-8 weeks to get results. I’m just trying to get other patients experiences with MAC so I can have a little idea of what to expect
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1 ReactionSo sorry you're dealing with this. I would suggest that your pulmonologist do a bronchoscopy vs sputum cultures to get an accurate diagnosis and not delay a treatment plan. Truthfully for me, I started feeling better after starting treatment with the antibiotics and nebulizing Levalbuterol and Saline after. I hope you get some definite answers and a treatment plan soon.
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1 ReactionI’ve only had bronchiectasis 1 1/2 years and others here have much more experience, but
I’ll share two things that may help.
I was thought to have MAC by local and Mayo pulmonologists and radiologists due to findings on CT. I also had difficulty getting good quality sputum cultures and Mayo did a bronch. Sputum was negative for MAC. 😀
You mentioned sinus headaches. I’ve had longstanding sinus issues and had a frontal sinus infection with persistent post nasal drip. When MAC was ruled out, the doc’s attention went to my sinuses as a potential cause of the chest findings, thinking it could be due to frequent micro aspiration. My Penn doc also mentioned that I could have cleared MAC spontaneously.
Have you had a sinus CT? Once I had better meds for allergy and sinuses, my symptoms improved a lot(!), though my CT’s aren’t much better. In fact, the radiologist on last CT sill said it was suggestive of MAC.