Question regarding lung surgery

My wife had been diagnosed with MAC disease in her lungs. Had been treated with the well known 3 different types of antibiotics for 2 years and was feeling well during the treatment. Stopped taking the 3 antibiotics and 2 months after, the results of the bronchoscopy shows MAC again. Doctors restarted again the 3 big antibiotics with a possibility of surgery. Anyone aware of the best center for such a surgery? God bless you all

@nnassiri Nass, can you tell us where you are located, whether she is currently seeing a doc who specializes in MAC, and why they are recommending surgery? Both National Jewish Health and Mayo are well known for their work with MAC. There are other specialists around the country as well. There are also other drugs that can be tried before surgery, but it depends on the extent of damage in the lungs as well. Sue

Thanks Sue, appreciate your reply. We are living in Dubai. My wife is currently being re-treated with the 3 big antibiotic again after a break of 4 months. While she was under the treatment of the same 3 antibiotics and (Amikacin into a vein for three months), she was feeling well during the treatment. Her Pulmo will form a team of infection disease specialist and a surgeon to discuss and decide her case in 2 month time e.g. Mar 2020 - surgery is a possibility. If not, should we keep her on antibiotics? and for how long? what about a maintenance does? Much appreciated - Nass

Thanks Sue. We are living in Dubai. My wife re started the 3 Big antibiotics and Tobramycin under the supervision of her doctors for 3 months and then will see how things are going on. Her symptoms are much better now after a month and I see a good improvement. The question is why not keep her on the same medications for 3 or even 4 years rather than going for surgery as long as no side effects from these medicines through periodically testing kidney, sight, and hearing. I am not a specialist this is at least my wish. God bless you all.

@nnassiri Hello Nass - I am glad to hear that your wife is seeing improvement and tolerating the medications. The usual duration of treatment for the Big 3 antibiotics is somewhere between one and two years, but it is highly variable. I do not know if there is clinical evidence that 3-4 years of continuous treatment is effective, and I would be worried about the long-term effects on the body of so much medication and development of drug resistance. Has her team submitted the sputum culture to drug sensitivity testing to be sure the strain of NTM is susceptible to the drugs being used? One of our members, Terri @windwalker has used Tobramycin and another drug in alternate months to keep her infection under control - maybe she can tell you something about how that is working for her.
Sue

nnassiri, Hello. Is your name Nass? I want to give you additional information on treating mac. If you click on my photo icon here; my treatment plan will pop up. You are right to ask about a longer treatment period with antibiotics. I have been on monthly antibiotics since 2013. I was tested mac negative by 2014, but stayed on the drugs to keep it gone. Then, in 2016, I got infected with pseudomonas. I was then prescribed inhaled tobramycin 300 mg. That knocked the pseudo out in 30 days. I have been on bi-monthly antibiotics ever since then. I have been infection free since 2016. I am treated by drs at the Mayo Clinic. They have the best reputation in the world. I was never put on the 'Big 3' antibiotics, and was fortunate that my treatment worked. Did your wife's doctor also have a suseptibility test done? If yes, please get a hard copy of it. If you do not mind sharing the results; I'd like to know what the results are. This is important. The bottom line is; whatever caused your wife to be vunerable to mycobacterium infection, never goes away. That is why patients should consider long-term antibiotic maintenance. Blessings to you & your spouse.

Thanks Terri for your reply. My name is Nasser. wife is back again on the 3 Big medicines (MAC) and tobramycin (Pseudomonas) for a month ago. I will ask her doctor to do a a susceptibility test. I will also discuss with him your maintenance doses; Cipro for 10 days bi-monthly, on the 'off' months, on doxycycline for 10 days. Further, on inhaled tobramycin till pseudo is knocked away. I am aware of Mayo clinic and wish treatment/advise are offered through a distance. Thank you again and a big "thank you" from my wife to you.

@nnassiri You are welcome Nasser.

I have a question that you may not know how to answer. I had surgery on my right lung on Feb. 26th. I developed an air leak that is baffling my Surgeon. Something rare that he has never seen nor his Associates. Do you know what causes this and how it is fixed? I see him again on May 26th and a CT scan will be scheduled a week before. Thank you for your time.

@rocky0814, welcome to Mayo Clinic Connect. We are all patients here. Perhaps someone else has had a similar air leak.

Have you considered getting a second opinion?