@jkiemen In 2013 I was put on a bi-monthly plan. One month I would take
500 mg of Cipro for ten days. Then the next month I would take 500 mg of
Doxycycline for ten days.  I would take these drugs 2x a day. By
alternating them, it keeps the MAC from becoming resistant to one
particular drug. I had been doing well on those for several years, then tested
positive pseudomonas on August 2016. So now on alernating months of Toby and
Cipro. The Toby specifically kills pseudomonas, not MAC. I am curious about how
your doctor will want to treat you. I found it helpful to type a list of
questions and take the print-out with you. Best of Luck!
 

@jkiemen,
oh well.....I am 58, and I am not an old woman yet. (although some days I feel
like it!)
 

Did they do a culture of the specific type of MAC?

@jkiemen, and @windwalker Terri, below is correspondence from my Mayo Clinic doctor who shows on her Bio .. one of her "Interests": "Alpha-1 antitrypsin deficiency". When I told her about my past history she was very interested .. I will keep you posted as I learn more about the full alpha-1 antitrypsin deficiency testing later in July 2017 .. and what she says about it .. just what it means as it relates to my lung issues! Hugs! Katherine

++++++++++++
Katherine, If your testing indicated the Z mutation, we should complete full alpha-1 antitrypsin deficiency testing to determine which genes you have and if the level is low. I have added to blood work to your evaluation in July.

Question: Dr Dulohery, sorry not to get back to you sooner .. just remembered .. my 23andMe "Detected mutation" is: PI*Z ,, the most severe mutation .. increased risk for COPD. I will bring a copy of the form at next appt.

Windwalker....yes it is interesting re 3 of us being Alpha -one carriers.I need to get up the energy and timing to tell my two adult children about being tested. They both have had a child already.
During the year i dont have to return to NJH i am working on my GERD...sorta my weight (overweight) ...getting used to new CPAP addition...despise it but being a "good" patient was 100% compliant ( cannot believe how they can track us by satellite aka Big Brother)

Today I began process to get oriented to volunteer at local in house Hospice....a few hours a month only as volunteer...not as nurse . Need distraction from ailing body parts...2 hour shifts are good.tdrell

@boomerexpert, I appreciate your way at looking at the transition from who we were while working to who we are now...with an altered identity (not rating it bad or good). But feeling good about who we are now is important & it's something I struggle with. But I find myself feeling better & better all the time after reading through your posts. You all are giving me so much hope & inspiration! I'm so glad I found you, all! Best, Jen 🙂

@jentaylor We
are glad you found us too! You have helped us as well. You have brought up
issues that have not been in the past. i.e. identity after forced
retirement.  -Terri M.
 

@tdrell Good
for you Terri (volunteering) Hospice is so important. I swear, only angels work
there. I am thinking of becoming active with the Alpha -1 org again. I think
adding this info about carriers would be helpful. Don't know if you saw an
earlier post from me about me speaking to an Alpha-1 rep from NJH that was at
the conference. Anyhow, I did ask her about carriers of A-1 being targets for
serious lung issues. She said 'absolutely there can be a corrolation'. She sees
it a lot. The problem is, that like MAC, they are still trying to learn about
that disease. Their's is complicated due to genetics and research. You can order
the test kits online at http://www.alpha-one.org It is a simple pin
prick of blood put on a card and mailed back. They are free. That is if your
family is interested in doing it. Alpha-1 is another under-diagnosed
condition. It's only been in the last ten years that the word was put out for
all pulmonologists to test for this when patients have a chronic cough or
emphazema/copd like symptoms.  - Terri
 

@katemn,
Hi Katherine. Yes! Please give a report on the Alpha-1 visit in July. 
-Hugs!