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If get MAC a second time, how is it treated? What did you do?
Hello - this is Pam in Sudbury, MA. This group has been very helpful to me over the years since I joined and I now have a question which someone out there might be able to help me with:
I was diagnosed with MAC in 2015 and went on the 18 month regimen of the Big 3 antibiotics. It did clear up the MAC but ever since I have regular episodes of Pseudomonas which I knock back with Levofloaxin for two weeks. I was just told that a sputum sample sent off some months ago has come back with a positive for MAC again. Of course this is very discouraging though I was told we never really get rid of MAC; it is always there, waiting to come back at some point. Has anyone in the group had this experience of getting it a second time? The odd thing is has to do with coughing. I am not coughing at all. When I was diagnosed in 2015 I was coughing my lungs out, and had been for several years. So now they say the MAC showed up in the sputum sample but I am not coughing. Is this typical? If you did get MAC a second time, how was yours treated? I have made an appt to see an infectious disease specialist for MAC but could not get an appt until January. My lung doctor wants her to decide how to best treat me. In the meantime, I wonder about others who may have contracted MAC for a second time and how they dealt with it. Thank you, Pam
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Pam, I'm very sorry you have become positive again. Would it be possible for you to copy this and put it in a new thread with "recurrent MAC" or "MAC for second time" in heading. I'm afraid you won't get responses in this thread about the ABC's which will be heading members will see. I know it has happened to members and think they'd be happy to help, but I can't move it.
@colleenyoung, can you?
@pamelasc1, as @pacathy suggested, I moved your question about dealing with MAC a second time into a new discussion. You may also be interested in these related discussions:
- Bronchiectasis and staving off recurrent infections https://connect.mayoclinic.org/discussion/bronchiectasis-and-staving-off-recurrent-infections/
- MAC again https://connect.mayoclinic.org/discussion/mac-again/
- Second time treating and second time losing hair! https://connect.mayoclinic.org/discussion/second-time-treating-and-second-time-losing-hair/
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4 ReactionsThank you Colleen for moving my questions to the right spot. Hopefully I will get some helpful responses. And thank you for the links too! Pam
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1 ReactionHello Pam. I live is southern NH and am wondering if you would share the name of your ID doc who has experience with MAC. I am on the schedule to be seen at the BE/ MAC program at MGH but not until May.
Thank you and all the best going forward.
Kris
I was treated for MAC for 16 months with the Big 3 on an every other day regimen. I was told after a bronch 6 months after I started taking the drugs that the MAC was gone and I had to continue the drugs for 12 more months. Unfortunately I couldn't last more than 16 months total because of side effects of neuropathy and hearing loss. Three months later it came back and the doctor put me on meds every day. I couldn't tolerate the drugs so I had to quit. But my point is when it comes back, I think the doctors move to an everyday treatment protocol rather than every other day. I'm in a watchful waiting period now as my old ID doctor moved to another state and the new one said she didn't think it was necessary at this point. I don't really have many symptoms except for some slight congestion once in a while. I nebulize 7% saline twice a day and use a vest twice a day. A recent CT showed no changes from a CT back when I was supposedly MAC free.
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Hello Kris - my original lung doctor at Brigham and Womens who diagnosed my first time with MAC in 2015 retired last year so I had to get a new doctor . That doctor is Dr. Lange. But she has sent me to another doctor because she said she did not have the "expertise" for dealing with MAC - that doctor is a Dr. Carolina Geadas. I was not able to get in to see her until early January so I have no idea how much she knows. The question for me is: when I was first diagnosed with MAC I had a terrible cough which had been going on for several years. This time, I have NO cough. I feel fine. So do I go on all of those antibiotics, or should I just wait it out and see what happens? This will be my question for Dr. Geadas. Wish I could be more helpful. Let me know what you find out from your doctor as it might be helpful to me. Best, Pam
@linda1334
Thank you for writing Linda - so it seems you have MAC but you are not taking any antibiotics - correct? For now, since I have no cough and I feel well, unless I am told otherwise from a new doctor I will be seeing in January, I am going to stay off any antibiotics as long as I can. Good luck to you, Pam
@pamelasc1 From what I can determine from past conversations here, Dr. Rocio Hurtado (infectious disease) is the go to person for NTM in Boston area
https://www.massgeneral.org/doctors/18605/rocio-hurtado
@pamelasc1 Yes, I am not taking any antibiotics at this time. Quality of life is always important and I was non-functional on the second round of antibiotics. If something changes in the future, my new ID will reevaluate and make recommendations at that time. I will also consider going to NJH for evaluation.
@pamelasc1
Thank you Pam. I had/have no symptoms either. I don’t cough but my CT scan showed a nodule that was starting cavitation. That was the reason my pulmonologist sent me to an ID doc. I started on the Big 3 right away without doing any more research or being told about airway clearance, nebulizing or any additional steps to help with BE and MAC. I think CT scans are a good indicator of needing to start treatment. I have learned through this group that sputum (I never have been able to get any up) needs to be cultured for sensitivity to the antibiotics. I am assuming (!) that my bronchoscopy results have been tested. Because I changed docs - from MGH to Lahey - and the bronchoscopy was done at MGH I don’t have anyone to ask. In the meantime, I am in the process of being scheduled at NJH in Denver. And then in May I will see Dr Christopher Richards at the BE/MAC program at MGH and I will finally feel like I have all the answers to my questions. Best of luck to you. I’m sorry you have to wait until January to see your new doctor and in the meantime, your latest CT scan should be helpful in making your decision. Stay in touch! Kris