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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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Very helpful lists, Katherine, as I head to an Infectious Disease specialist on Monday! I am frustrated that my pulmonologist's nurse called me almost 2 weeks ago to tell me that I don't have lung cancer, I have MAC. But nothing else. Seems like cruel and unusual punishment to tell someone they have a disease but nothing about it.
I immediately got on the internet and read two articles mentioning high mortality rates. I knew nothing about MAC or about any specific types, so was devastated. (My son's dad, my ex-husband whom my husband & I helped care for, died two months ago and although they're in their 20's, this would be a LOT for my sons to deal with, not to mention our own emotional reactions.)
Anyway, great to have these questions; I'd started compiling them on my own but this really helps!!
Carolyn
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1 Reaction@cld120 .. Carolyn, JOIN THE CLUB! When you say "I am frustrated that my pulmonologist's nurse called me almost 2 weeks ago to tell me that I don’t have lung cancer, I have MAC. But nothing else. Seems like cruel and unusual punishment to tell someone they have a disease but nothing about it." That is EXACTLY why I WISH I had Mayo Clinic Connect when I was diagnosed with MAC in 2007 .. it was terrifying! But now my dear .. you have us! You have a wealth of information at your fingertips that you will NEVER get anywhere else .. CERTAINLY not from any doctor or nurse!! I feel for you .. frankly it is about what ALL of us went through! I think it is what makes us all keep coming back to help Newcomers! We SO well remember what it was like for US!!
When you go to your appt .. be your OWN best advocate .. stand up for yourself .. get your questions answered .. remember the doctor is YOUR EMPLOYEE .. YOU are the EMPLOYER! If you do NOT get your questions answered .. THAT is your answer .. that doctor is NOT your best resource going forward! One BIG question to ask: How many MAC patients have you treated in the past year? You NEED to be with someone who knows what they are doing! .. and keep coming back .. we are here for you! Hugs and good luck! Katherine
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1 ReactionHi, did you ever follow up on that last sputem to get your results? How are you doing now? Terri M.
I was not able to produce anything for the second time with the induction.
Does that mean that you are not infected much by your MAC?
Hi Carolyn and welcome to our group! Funny you should mention the IBS along with MAC' because when I have looked up one, sometimes the other term pops up too. I have noticed over the years of my looking up the disease I have, I discover co-morbid diseases that tend to go hand in hand together. They fall under the umbrella of Autoimmune & Immunosufficent diseases. You are right to be concerned about taking the BIG THREE with your IBS issues. Those drugs can be harsh. (although some people have little problems with them). I know that the Mayo Clinic is overwhelmed with new patients, but you can make an appointment for way out in advance and then call them on a regular basis to get on the cancellation list. There are other good institutions that are about as close to you as Mayo that are also very good. I am not sure what medical facilities have a good reputation where you live to deal with MAC. Whomever you see, hold that thought that not all answers are getting put on the BIG THREE right off the bat. You can express your feelings about it to your Dr. Tell him/her that you have been educating yourself and what you have learned. Definitely open up that dialog.
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1 ReactionThanks so much for your reply & welcome. I am trying to learn as much as possible right now and this forum certainly provides a wealth of information. May I ask which Mayo location you were seen at and who your doctor is?
@cld120 i want to share that I emailed the mayo Jacksonville last week and as promised, they called me within 3 days and I'm scheduled for an appt August 15th. Very surprised how easy it was to get appt and with a doctor I read was well liked on this site. So that's my experience. Good luck. -Bonnie
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2 ReactionsCarolyn, I go to the Mayo Clinic in Jacksonville, Fl. and see Dr. Leventhal. I understand that they have become quite booked up lately in the Pulmonary Dept. You can try to get an appt there though. Their number for appts is 904-953-0853. Isn't there a very good research hospital in Lexington? I thought I saw there was awhile back. There are other Gold Standard places to go if you don't mind traveling to get to them.
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2 ReactionsHi Bonnie. I am so glad that you got an appointment at Mayo! Is your appointment with Dr. Leventhal?