Managing MAC without antibiotics

@desperada I was diagnosed with bronc and mac about ten years ago. I chose not to take the antibiotics. My doctor supported my choice. I too live alone. I'm 81 and am totally on my own except for my darling two cats. I take each day as it comes.Like everyone else, I have good days and bad. I sympathize with your many illnesses and the loss of your husband. It's a pile of trouble you're dealing with. Good for you for walking your dogs. Activity, difficult a it may be is important..it keeps going. I take various herbs that Terri and others have suggested. I try to eat well though I have very little appetite. I go to the gym twice a week and life weights with a trainer. I never want to go but when I walk out I feel so much better. Though I rarely eat out any more, I work to keep a few friends. Many have disappeared because I was unreliable saying I would do something and then having to cancel because I wasn't up to going out. I don't blame them. It's just another sides-effect of this lousy disease. I can't imagine how hard this must be for you after just loosing your husband. Wising you strength and wellness ...you already seem to have a lot of courage.

@desperada. I am glad that you have found this group but saddened to hear that you have to deal with so much at this time. It sounds like the weight of the world is on your shoulders.... So very sorry. I am hopeful that you will find support here. I just sent you a private message...maybe respond when you feel up to it. My best to you....Kate

@windwalker ...Hi Terri...good news...I just got an appointment with Dr. Leventhal at Mayo for a second opinion! My insurance finally came through!!

@desperado...hi there...am so sorry to hear that you are carrying so much....I must tell you though, I was scared to death to start the big 3 antibiotics, but after some side effects the first 6 weeks, everything went away....I waited as long as I could before starting them.....sometimes they only want u to take them 3 times a week...walking as often as you can helps with anxiety and depression as well.

@alleycatkate Oh happy day!!!! I am so thrilled for you!

@alleycatkate What day is your appt? I want to follow up and see what you thought of your Mayo experience.

@windwalker ...Oct 4! Looking forward to meeting Dr Leventhal! Will keep you posted.

Dear @desperada, Your story saddens me. My condolences on the loss of your husband. I know it is a big adjustment to life without him. I am very glad that you have two dogs. They'll keep you going. I have one little teacup poodle that goes everywhere with me and she never leaves my side. It is important to have that added energy in the house to curb loneliness. I was diagnosed on 2005 with mac; I too declined the Big 3 meds. And yes, that pulmonologist was furious with me for doing so. I found a new pulmonologist. Over the following years no pulmonologist knew much about mac or how to treat it. I was VERY sick for a number of years and was told I was headed for a lung transplant by my local dr. He suggested that I go to Florida and seek help at Mayo. Mayo dr agreed, I was getting close to needing a transplant. That was in 2013. I was tested for pre-qualifying for a double lung transplant in 2016. I was placed on the 'deferred' list because I was not quite bad enough to get listed yet. I have been under care at the Mayo Clinic since 2013 and today, I feel like a normal human being! I once couldn't walk 15 feet without stopping to catch my breath. I can now walk many blocks and ride my bike 12 miles. My point is, never give up on yourself. Good medical care can make a huge difference. I have a feeling that your grief is making your other health issues feel that much worse. The mind and body are very much connected. I hope that you will take the time to read over older posts and glean some helpful information about dealing with mac. It would be great if you could get to one of the Mayo clinics. Besides having the best doctors (people come from all over the world to see them); they are always compassionate and respectful of their patients. I am here for you friend, as well as others in this group. You are not alone in this. Getting to GOOD medical help is what you need. I would be happy to look up the nearest medical facility that may be better equipted to deal with mac. May I ask where you live?

@alleycatkate Woo hoo! I just adore that man! I think you will too.

@desperada I just wanted to tell you that I have not had a horrible experience with the antibiotics. I am making sure to take a high dose probiotic every day and have been OK. Not everyone gets every side effect listed. There are also complementary medications you can also try. Our group has lots of Ideas to offer you. Keep on with our group, you are with people that have lots of experience with this condition and support each other like sisters.