OMG! What is your name, Unicorn? I feel so badly for you right now.  I
know you are tired of dealing with this, and that this disease saps you of
energy.  You must be proactive. Please do not give up. Ask your Dr. about
putting you on an inhaled antibiotic like Colistin or Tobramycin.  The
second one has helped me immensely.  Also, I have been on an
alternating monthly antibiotic for yrs now; it is not the BIG THREE that
everybody else takes. Be sure to ask your doctor how many cases of MAC they
have treated? Are they knowlegable? If they are not, get to an institution where
they study this.  I feel like there has to be some relief for you. Hang in
there and please keep us posted. We care!   Hugs - Terri M.
 

@unicorn Hello! Do you have a first name .. more personal. Hmm, you have been through a tough time .. I'm really sorry. I REALLY question if you have been treated properly for your MAC. I was diagnosed with MAC/MAI .. was on the meds for THIRTY months .. BUT now I have been stable since 2014. I wonder IF you had the wrong "cocktail" .. wrong length of time for MAC .. just what/why. I am not a doctor but my guess the blood is the Bronchiectasis .. I cough up some blood also .. no big deal. If I was sitting in your shoes I would find a REALLY good infectious disease doctor and get to the BOTTOM of this .. Girlfriend .. I am 73 .. you get going .. a GOOD resource for finding a good ID doctor from my File Cabinet:

1. MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63
** Minnesota campus for an appointment, here's the number: 507-538-3270
2. JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
3. DOCTORS-NYC From membe @ehliny: outstanding pulmonary doctor in NYC: Dr. Louis de Palo at Mt. Sinai Respiratory Clinic: (212) 241-5656. I also have a first-rate GERD doctor in Dr. Jonathan Aviv, 210 East 86th St: 212-722-5570. Dr. de Palo is not quick to prescribe antibiotics if you don't show full range of MAC symptoms. Dr Aviv (and I) believe there is a strong association between gastric reflux and lung disorders. I have a lot of confidence in both these physicians. Dr. Timothy Aksamit at MAYO Rochester had also recommended a NYC doctor for MAC, Dr. Doreen Adrizzo Harris, at NYU Pulmonary Medicine.
4. D0CTOR-ATLANTA GA From Membeer @janovr .. Dr. Colin Swenson Emory/St. Joseph’s Hospital Atlanta, GA
5. D0CTOR-CHICAGO Dr James Cook at Loyola, Chicago
6. D0CTOR-DENVER Dr Gwen Hewit in Denver as experts.
7. DOCTORS-AZ Member @lindam272, Linda He’s supposed to be one of the best. My ID doctor in Arizona, Dr. Justin Seroy, interned under Dr. Cook.
8. DOCTOR-FINDING A GOOD INFECTIOUS DISEASE DOCTOR https://www.ntminfo.org/patients/physician-referral-list move down the page to YOUR STATE

Also, read through the back pages of this Forum to educate yourself .. REALLY good information! Come back with any questions! Big Hugs! Katherine

Unicorn....is it time for second opinion at Mayo or National Jewish health? There are those of us who have gone to either for second opinions. What do the CAT scans of chest show?tdrell

@unicorn Some thoughts from a kindred spirit: My life has been greatly diminished by Rheumatoid Arthritis, then moreso by MAC & bronchiectasis...some days I feel that I simply cannot keep my head above water, and when I get to take a breath, am hit with another debilitating illness...
Yet folks are quite taken aback by my ability to keep a truly happy demeanor - I get "oh I'm feel so sorry for you, how do you do it???!!"
I decided a while ago that I will not feel sorry for myself; that impedes effectively handling what I'm given, as in, do I want to become downtrodden and feel a victim, or stand up to my afflictions and be happy regardless of them?
I also realized that as unpleasant as my situation is, I feel so very blessed that it isn't Alzheimers from which my grandmother died, or ALS that I see ravaging my friend's body and mind, or cerebral palsy, or the many other fully debilitating conditions I could've gotten instead.
My life is changed, and at times unfun (I love that word...!) but if the thousands of people I see rising above those conditions can do it, I can...they are my inspiration.
Get that mucus up to lower your risk of infection. Search for docs well versed in your more advanced case...there are treatments out there when antibiotics are no longer helping, but only the most skilled, knowledgeable docs will know them...
You have choices. Don't ever give up.

So sorry! I have very little quality of life as well and have questioned the value of living in this condition as well. I guess that's why it is written, "before MAC and after MAC." Especially hard for me is going from being the one taking care of everybody to the one being taken care of - But I am always hopeful that someone will find a cure. I trust God, never ask why, and keep putting one foot in front of the other as much as possible - one minute, one hour, one day at a time! Don't give up! This group is a wealth of information and good, honest support.

@irene5, Irene just wanted you to know I am thinking of you .. sending you Lots of Positive Energy and a Big Hug! Katherine

@boomerexpert, Bomer, really good advice .. thank you! Katherine

Yes, from UCLA to Massachusetts for opinions, In the end, it seems that all we have are the dreaded pills. Now inhaler also, CT scans show lots of partying going in my lungs, some improvement, some new growths. Little devils....

Well I'm going to go buy dessert! I don't think cholesterol is much of an issue anymore! Yes, i hope a cure is coming down the pipeline but I've been told the emphasis seems to be more on Hiv now. I'm not giving up.

Hello Unicorn, I'm sorry about how you feel. I know its gets on to us sometimes especially when the meds seems to be not working. Please don't think about dying and don't give up, hopefully it will get better. I have so many frustrating situation since I got diagnosed a year ago and some of it is fear and scared. I never knew anything about panic attack until I found out that I have bronchiectasis and MAC. Its not easy but you have to fight it and don't let this bugs win. I will have you in my prayer and please try to look at the bright side of life. Blessing and prayers. Cila