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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.
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windwalker aka terri,, awesome summary for Simonaro1....only one question....isn't NTM the major category under which the 171 individual bacterium ( that as of july 2016 had been identified) of which MAC is one? so not really a synonym???tdrell aka terri
Thank you so much! I will be contacting the foundation in Coral Gables tomorrow. I have my 1st follow up appt. With current ID doctor and already have a list of questions for him including experience with this condition.
I am so grateful for the info and support. It helps to know I'm not isolated with this mess in my lungs.
@simonaro1 No mam! You are not alone, we all have that mess in our lungs too. - Hugs Terri
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1 Reaction@tdrell Yes, Terri, you are right about that. I wrote it that way because some newly diagnosed may not know what NTM is.; all they have been told is they have MAC. I wanted Elisse to know that the NTM foundation is for MAC so that she can get some resources.
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1 ReactionTheresa, (@windwalker), A question:
Why is it important to see both a pulmonologist and an Infectious Disease doc?
I am a bit confused as to who will help coordinate my care. (My primary care Dr? Pulmonologist? ID Dr?)
I am in Lexington, KY. The University of Kentucky Medical Center does a lot of research and is considered to be a great place for rare or unusual diseases. I called last week to see if they had an I.D. Dr. I could work with and unfortunately they are booking pretty far out because of a shortage if ID docs right now. May end up having to go to Louisville. Dr. Escalante at Rochester Mayo recommends starting Big Three in the next 2-3 weeks. Best, Carolyn
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.
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.
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.
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1 ReactionTerri, 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 Carolyn, I am glad to hear that you have an appt with an I.D. dr. Please keep us posted.