@alleycatkate You go girl!!

@alleycatkate I am happy that you are not suffering from symptoms of mac infection. Those of us who do or have can tell you it can get very bad. I would def look for a new dr. Your dr may not seem to care perhaps because he doesn't know much about mac. That is not uncommon. You also need to find a good Infectious Disease dr. You need one to work with a good pulmonologist. If you need help finding one nearest to you, I can try to help. You can also go to http://www.ntminfo.org and ask them for help with that also. I can tell you from my own experience; that I went years with pulmonologists never giving me a sputum test. Mac and pseudomonas ate away much of my lung tissue. My lung function steadily dropped year after year. I was always told it is COPD and given asthma meds. I now have 37% of lung function left. Am I angry about the improper care? You betcha! Those drs had my medical records with the history of mac in them! And still never tested to see if it had come back. I didn't know any better at that time to ask for sputem tests. I do now! I started treatment at Mayo in 2013 and they have halted the downhill progressive path I was on. I didn't do the BIG 3 that is typically used. Mine is less toxic and fewer days of taking meds. Like you, I don't like taking meds. But, sometimes the benefit outweighs the negative. I am asymptomatic now and have put my weight back on that I had lost. (142lbs down to 116) Please find a knowledgible docter! Hugs -Terri

@alleycatkate It is important to have in your possession; your lab results for mac. Keep it in it's own file. You will see why that is important as the years roll by. Ask that doctor what colony size your's is and what strain of mac it is, and what did the suseptibility test show? If he cannot answer these questions, then he is not the doctor for you. That is why you need a copy of the lab results. Your own hard copy can show you if it was even a complete lab test. Some local labs do not automatically do a suseptibilty test or test for strain of mac. Your thoughts?

@windwalker Thank you ...I will get my results immediately from the pulmonologist. I already know he is not for me because of his unwillingness to talk to me. I have very limiting insurance and will have to check if I can go outside my hmo for a new Dr. I need to check this but would truly welcome your help in finding another pulmonologist and infectious disease Dr. I may just need to change my insurance come December so I can have more flexibility. Can you recommend any good Dr.s in W. Palm or Ft Lauderdale, Stuart or Melbourne? I live in Vero Beach so even Orlando would work well. I would call and see what insurance they accept and switch policy's come open season. I got no information from my Dr. other than I am asymptomatic with MAC. I am happy to hear you are now asymptomatic also!! It sounds like you have been through the ringer with this disease....but you must be doing something Right and your upbeat attitude probably gets you there!! Thanks again. Katie

@boomerexpert ...Thank you for your advice. It sounds as though you are being very careful. Does the MAC often just move or does it typically grow? When it starts growing is that when the Dr's want to start the cocktails? Do folks stay asymptomatic for long periods of time? Sorry...I know so little. The accupuncture sounds like a good idea as does the whole house water filter. I wonder about living with several cats in my bedroom and the dander...Perhaps an electronic air filter would be beneficial or would you think that might be overkill? I am not sure if the dander would exacerbate the condition. Finding this chat group is a God Send!! Thanks...Katie

Terri....I would be so upset with the treatment...or the lack of treatment that you received from your past Dr's. How awful!! I agree...a good Dr is worth their weight in gold.....and I am right there with you on your mindset about meds. I freak thinking about doing the big three...I hope not to go there!!

I am across the state from you in Sebring, FL. We go to an excellent Infectious Disease Doctor by the name of Dr. Lascon. Our Pulmonologist is also good but extremely busy. His name is Dr. Wong.

@alleycatkate, Hi Katie. I hope you don't mind me jumping in on you and @boomerexpert. An air purifier is NOT overkill. I have one in my room. It is a standing unit with a hepa filter. I run it mostly during pollen season, though I should use it every day. Cats do have sticky dander and it is advised to not have them when you have asthma or any other kind of lung issues. I am not saying to get rid of your cats. If you are like me; that would kill you before the dander would. I adore cats and want another one so bad. My pet kitty passed away in 2006. I have not gotten another one since because I know it is not in my best interest. An air purifier would def help. Also, doing the nebulized saline twice a day helps keep your lungs clean. BTW, I have a teacup poodle (5lbs) close enough to a kitty for me!

@alleycatkate Katie, there are options to treat mac besides the Big 3. There are nebulized medications that work well, like inhaled cipro, inhaled tobramycin (for pseudomonas) and others. I am on a diff regimen than most. I take antibiotics monthly, for life. My lungs are severely damaged, although you'd never guess that if you met me. Apparently, we can live well (or should I say well enough) with 37% lung function. Don't get me wrong, the fatigue is still aweful. I had a couch day all day today. Some days are like that. I don't want you to fear treatment.

@windwalker It is fortunate that I was not diagnosed when my household consisted of... 14 cats and 2 dogs. Whew! I am an X rescuer and feral cat caretaker. (Ferals not included in above numbers) You are right...no parting with my kitties. Through attrition my group is down to 3 cats & 1 dog. I am slowly closing in on sanity. 🙂 Poodles...what a fabulous idea with no shedding & cute as a bug! So I need to get a nebulizer? I had asked my doc on my 1st apt with him & he said do not add moisture to my lung. What saline solution do you use? Should I get the Clear Lung that I hear about on this post? Looks like I need to work on an arsenal for this fight. (and a new dr) Thanks for your input and sorry for so many questions!....Oh... and then God made the Sphinx cat!