Update On Treatment of MAC

Hello All! I had a vist to the Mayo this past Tues. I was first diagnosed with MAC in 2005. I refused the three drug standard treatment. Several weeks on antibiotics knocked it out. It came back in 2013, was treated with one antibiotic for 10 days a month on a monthly basis. It cleared up. Then in 2016, had pseudomonas infection. It was treated with bi-monthly tobramysin & cipro. It too cleared up.I asked my Dr why in the four yrs I have been going to the Mayo; that he never put me on the BIG THREE antibiotics. His reply, and I quote with his permission: The BIG THREE treatment is ‘old school’ and it is OVER-TREATING most patients. He said he gets new patients in seeking second opinions and that he takes no less than three people a week OFF of the BIG THREE. I asked what he prescribes instead. He said it varies depending on colony size, specie, patient history, etc. He stated that most drs prescribe the BIG THREE because it was the norm years ago, and they honestly do not know much about the disease. He only uses the BIG THREE when a patient does not respond to single antibiotic treatments, or is SEVERE and CHRONIC. I would guess Katherine may fall into that catagory. He also said that he sometimes doesn’t recommend treatment at all because 90% of the time, the MAC clears up on it’s own. That may be why someone recently posted she was confused as to why her dr did not want to treat it yet and wait and see. I found this info VERY interesting.

Liked by janovr, tdrell, Carolyn

@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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Good morning Carolyn! It is recommended to see an infectious disease doctor because they are generally more knowledgeable about mycobacterial infections than some pulmonologists and GPs. Think about it, they specialize in in little bitty germs that make us sick. I wish I had seen an I.D. doctor back in 2001. ALL of the pulmonologists I had seen over the years; not a one did a sputem test to see what I had! I went to the ‘best’ doctors in two major cities. They told me I had asthma (which I didn’t) and bronchitis, so only had a week’s worth of antibiotics. This cost me precious lung tissue. Going years with infection left me with only 44% lung function. I am dangerously close to needing a lung transplant. I did not get treatment for MAC until 2013! That is why it is so important to see an I.D. doctor. It really makes me angry about all of the years I mis-spent hacking non-stop and unable to do much because of being so short of breath.

@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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Hi Bonnie! I think you will like your experience at the Mayo Clinic. It is a well run institution. They will test you all day long, (sometimes over several days) and at the end, all test results are read, you will meet with the doctor, you get a diagnosis and treatment plan all in the same day.

@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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Your lips to Gods ear! I hope there is a plan of action. And I am so looking forward to this. Thank you so much.

@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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Terri, I am so sorry you had to pay such a heavy price for ignorance about MAC!! I am scheduled to see a local I.D. doctor a month from today. I am in regular communication with my primary care doc & pulmonology nurse.

@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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@cld120 Carolyn, I am glad to hear that you have an appt with an I.D. dr. Please keep us posted.

@cld120

Hello, I was just diagnosed with MAC ten days ago and my pulmonologist referred me to an Infectious Disease specialist in Lexington, KY. I have an appointment to see him next Monday. I am so interested in your post about Mayo being much more conservative about immediately prescribing the BIG THREE. I have IBS (associated with MAC??) and dread the prospect of taking three drugs simultaneously with likely GI side effects in my case. Is it difficult to get an appt at Mayo to see a MAC specialist? I am increasingly convinced that I should start treatment there! Your thoughts?

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@bonniewhite56 Hi Bonnie! I hope you had a good visit with Dr. Leventhal today. What did you think of him?

My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn’t any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.

@joan912

My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn’t any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.

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My new doctor at Mayo just said no to antibiotics. I’m in total agreement and everything I read including his comments are that is an old way of thinking. But everyone is different and at different places in this condition. Just my experience.

@bonniewhite56 I totally agree with you. Everybody’s situation is different and we have to decide what is the best choice for ourselves, taking into account all the pros and cons, and not simply follow practices of others, even if others are in the majority.

@joan912

My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn’t any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.

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@bonniewhite56, Hi Bonnie. So what did you think of Dr Leventhal?

@joan912

My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn’t any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.

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@joan912 Hi Joan! When was your husband diagnosed? How is he doing now?

@joan912

My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn’t any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.

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@joan912 I swear, I wish that medical community could formulate a GOLD STANDARD for treating us! I really do not like all of the conflicting views on how to treat our disease. It is confusing.

@joan912

My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn’t any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.

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He was diagnosed with MAC in March this year, and then his next CT Scan in May showed some bronchiactasis in one part of his lung. He’s had symptoms of some kind of lung infection for years with fevers, fatigue, and severe night sweats. It wasn’t until this year it took a turn for the worse and he finally received a definite diagnosis. Poor guy, this disease is unmercifully persistent.

@joan912

My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn’t any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.

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Loved him. Feel safe if that makes sense. We have a plan of action with testing. He also noted other things on my scans that my doctors never addressed. Things that could be serious. For that I’m grateful for his expertise. Thanks for mentioning his name and the accolades to him!!

@joan912

My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn’t any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.

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@bonniewhite56 Oh, I am so glad that you liked him! He picked up on things that others had missed on me also. I adore that man. He has improved my quality of life tenfold. Yay!!!

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