@unicorn Christa, I will pm my phone number to you in case you'd like to chat at length about this. There are three Terri's on this site, so I am not sure which one you are asking this of. Where are you going for treatment? Is it a private practice? I am worried about you not being on some kind of antibiotic. The bleeding is normal if it is not too often & not too much blood, but it can indicate an active infection. I have posted in the past to you and everybody what my antibiotic regimen is. You are way too young to throw in the towel!!!! You just haven't found what works for you yet. This disease we have is aweful, and it is serious, but manageable. I encourage everyone that has it - to keep a notebook dedicated to this. When you see helpful info on this site, it would behoove you to write it down to reference things. I have a composition journal that I have sectioned by subject. Now, back to your question, I was diagnosed with MAC in 2005, I have never been on the 'big three' antibiotics. That was my choice because two out of three very good drs said they wouldn't if they were me. To this day, I do not know for sure if that was a good decision. I was put on azithromycin for several weeks and it knocked the MAC down back in '05. I became sick over the years that followed, coughed non-stop gobs of stuff would come up, I'd go on antibiotics when it would turn green or had fever. I was very short of breath and pretty sure I was going to die. From 2005-2013, not ONE single physician had a sputem test ordered up for me. Now that I know better, I find that unconscionable on my doctor's part. I do not know what may have been colonizing in my lungs during those years, but it did lots of lung tissue destruction. It wasn't until I went to the Mayo in 2013 that they found pseudomonas actively infecting me. No telling how long I had that! That is why I am not a fan of private practice medicine when it comes to serious diseases, especially when not much is known about it. I have been on alternating monthly antibiotics, one antibiotic per month since 2013. My quality of life has drastically improved. No more coughing! At the moment, no active infections. It is not all rosey, I have terrible fatigue. Big Hug Christa, call me!~

Terri, Thank you! I actually cut and pasted and mailed this letter to myself to show to my doctor. I want him to see that there are other ways to handle this disease rather than killing off the body with the big 3. I think you made the right decision because even if you got rid of disease with big 3, it seems to always come back, so what is the point? Meanwhile you are super svelte and fit into perfect skinny jeans, but feel terrible.and don't go anywhere, Not seeing a private practive doc. Flying out to Boston to Massachusetts General, Dr. O Donnel, I love him, supposed to be one of the best docs in country for MAC. This is only my second visit so I will get a lot of info, and show him your letter. It's the infectious disease specialist there, Hurtado, that worries me because she aggressively wants me on meds, not doing it, no way to live.....For instance, one day, when on the meds, I was volunteering at children's library and I got cramps and a bowel attack. Trapped in bathroom I was passing out, sitting on floor, trying to just walk to my car!! I made it was was seeing spots and really don't know how I got home, only mile away. Cramps were doubling me over and I stayed in bathroom about another hour and then just passed out in bed. That was my life on pills and probiotics did almost nothing. I never knew when it would occur. I was so discouraged, I asked my doc for a 'Death pill' He kind of laughed because I have a lot of good lung tissue left, but he has never coughed up blood!!.. So here I am perfect blood pressure, low heart rate, 96 on the oxygen, but just waiting for another attack. The first time the blood came up I was sitting on sidewalk waiting for paramedics, with great globs of blood gurgling up and out, It was insane, but I remember they put me on antibiotics in hospital for TB, and maybe that helped! I know I am a big baby, but if it happened to them they would understand, just like a man trying to understand the pain of childbirth, they just cannot. Thank you for your kind words, Maybe it would help to know there was someone to call when attacks happen. Love you Christa xoxoxo

Unicorn aka Christa....like our mentor Terri aka Windwalker, I was Not put on antibiotics at NJH for MAC grown from washing from local bronchoscopy July 2016 ( done after my 2 year search to explain cough of 2-5 hours and mucus...daily. Dr Huitt at NJH said it was due to silent aspiration from my GERD.
Why I am writing is directed at your coughing up blood from lungs.
Do you take even one baby aspirin a day?
Or an NSAID...non steroidal anti inflammatory drug...such as Motrin.....aleve...Celebrex...the list goes on.
When I was a home care nurse, I had a client who had a tiny wound on the front of little toe...I would go daily to put new bandage on...all of a sudden the bandage would be soaked in blood. The only thing different was that man had taken an aspirin a few days before. It took about 10 days after ingesting one aspirin for the toe to stop oozing blood...so I am wondering if there is a correlation to drugs of those categories and pulmonary bleeding!
Terri aka tdrell

@unicorn Christa, I am home now. You can call me now or any time hereafter. - Special Hug, Terri M.

@unicorn Christa, here is another thing you can copy and print to take to your doctor.:
In Dec. 2013, I was diagnosed with psuedomonas infection. (the MAC was minimal @ 031.9) was put on bi-monthly cycles of 10 days of 2x daily 500 mg of Cipro, then on the other months 10 day run of 2x daily 500 mg doxycycline. July 2014 one colony of MAC found, just stayed on the alternating Cipro & doxycycline. Nov 2015 clear of all infection. GOT REALLY SICK June 2016 test positive for 6 colonies of MAC was put on 28 day bi-monthly 2x daily tobramycin and 10 day 2x cipro on the off toby months. All coughing ceased by end of 1st month on toby. By Nov 2016, I tested neg for MAC but pos for 1 colony of exophiala (an uncommon black fungus). I was told I had a pseudomonas infection from June 2016 culture, but do not have a record of that, that is why I was put on the tobramycin. I do not know how long my docs can keep all of this crap at bay, all I know is every since I went on the toby, I have not coughed. Believe me, I coughed my head off for years!! This form of treatment of alternating meds is called 'supression'.

NOTE: several people on this forum have asked their doctors about the way I am being treated and their doctors did not like managing this disease with suppression method. Something to bear in mind is that I have super low lung function, and severe stage COPD. I am a transplant candid on the 'deferred' list. My current FEV1 is 35-49% MVV severely reduced, Diffusing capacity is: mildly reduced

I do not mind if anybody wants to copy these stats to compare to your situation with your doctors. T. M. Martin

@unicorn Christa, you poor thing! I am so sorry that you were dealing with such horrible side effects. I totally 'get it' that you wished for a "death pill". I have been in those shoes. I have not read all of my e-mails on this forum yet, did you ever post what date you are going to Boston Medical? Sending healing energy your way, hugs, Terri M.

@pfists I read what the researcher posted, which was not a long article. It sounds like a wonderful option if it does all that it claims. I will look into more info, if there is any to be found.

@unicorn Hello Christa. I have not heard back from you in a very long time. Will you please, please, contact me? You can pm in private if you wish. I have been very concerned about your well being. BIG hug, Terri M.