MAC: no relief from traditional therapy, suggestions please

[ggfrench]

My mother is 78, non smoker, and diagnosed with MAC a year ago.  She has been taking Clarithromycin, Rifabutin,  Ethambutol, ACETYLCYSTEINE, Ipratropium bromide,and Xopenex without improvement.  She has no energy or appetite.  Her pulmonologist and ID in Virginia seem content to letting her suffer with chronic coughing, wight loss, and a feeling of breathlessness.  She is failing and we don't know where to turn.  I've heard of a Center in Denver for NonTuberculous Mycobacterium, are there others?  Can't something else be done (such as IV antibiotics) to make some improvement.  Her doctors don't even return her calls and she has to wait a month+ to see them, then they don't do anything different.  I feel the treatment should get more aggressive before full blown pneumonia sets in (which killed my father).

[ggfrench]

I sent an email to your personal account asking about the experience at Duke, length of stay, # of visits, etc.  Thanks for your assistance.

[ggfrench]

Thank you for your timely and helpful information.  My mother's doctor made her an appointment at Duke with Dr. Jason Stout.  Is this your doctor, have you heard of him, and if not, who is your doctor.  Many thanks!

[National Jewish]

It is impossible to make firm recommendations without reviewing your mother

[poolnoni]

Dr. Jason Stout is my doctor at Duke. I have found him to be very patient. He will email you back in a timely manner when you have any questions. When is your Mom's appt?  I have one on June 19th at noon.  If you would like to Email me and ask any other questions about Duke, Dr. Stout or this mystifying disease my email address is: ***@****. Hope to hear from you.

Jean

[poolnoni]

Sorry to hear your mother is not doing well. I too have MAC, was diagnosed in Nov.'04.My prior IDS doctor pretty much did not do anything, except take my money and weigh me once a month.I got extremely ill in Feb. I lost 20 lbs, severe nausea, diarrhea, very weak,no appetite and coughing more than usual. I decided to find a different doctor. I am currently see a specialist at Duke Medical Ctr. He put me on IV therapy for 6 weeks and added another antibiotic. He also put me on Megastrol(medicine to increase the appetite) This helped tremendously. I am going to The National Jewish Ctr in August.  I would suggest that you get your Mom to another doctor.  She needs better care than apparently what she is getting.Some doctors do not know enough about this disease so they just put their patients "on a train and let them ride" if you know what I mean. You might want to check this website out. It's www.NTMinfo.com. Set up a screen name and password and you will be able to read how other women are doing with this disease on the message board. Good luck. Hope your Mom starts to feel better. Keep me posted