Newly diagnosed and scared

I have been on the big 3 and Arikayce daily for 6 months now. I did start a probiotic (California Gold Lactobif 30) when I started the antibiotics. I was a little fatigued and nauseous in the beginning but both passed within a few weeks. I used acupressure wrist bands for the nausea and they did help . After those first couple of weeks, I have had zero problems on all these medications. I too have cavitary MAC with multiple cavities and just this week received great news. My latest CT shows multiple cavities have shrunk and no new ones . My culture came back positive still but the bacterial load was reduced. My advice is to remain positive, determined and patient, eat healthy and stay active. This group is a tremendous help with lots of great information and support. I wish you the best!

Mary- How do you know your 'bacterial load was reduced"? Do you see it yourself on the paperwork test results...... and how is it stated? How do they show on the sputum test paperwork results your bacterial load...as X amount of colonies or like 1+???
Does your doctor specifically tell you that your bacterial load has reduced?
I ask because I am somewhat disappointed with the type of communication I got during my office visit(s). If it weren't for my being able to read the test results on MyChart I would not have known I had improvement as shown on the last C Scan. I was only told, while the doctor was looking at the C Scan, that I had a new area with plugging, lower left lobe. She did not tell me of any improvement(s) be it with the submitted sputum test results or the C Scan when I had my last visit. No mention of what is or is not happening with my bacterial load, just that I still have MAI.
We need all the encouragement we can get and knowing I was doing something right to have improvement showing on the results of the C Scan would have been nice to hear from the doctor verses my needed due diligence I had to do by pulling up the MyChart to find out at home, after my office, that I had improvement.
I can't imagine fully why she would not tell me also the positive, as she looked at the C Scan results. I wonder if she has reasons not to tell of the positive results along with the negative as she was observing it all. I guess there could be a dozen reasons. Oh well, I may have my expectations set to high also. Then again next time my question will be "Is there any improvement showing on the C Scan or with the sputum test results related to the bacterial load.?
Barbara

Doctors have tunnel vision, and some do. I was frustrated with the information I was getting on my first visit, so I went with a list of questions and things I wanted the next time. As soon as I started asking him, he gave great answers, and I came away with enough information that I knew things were on the right track. As a last choice, if you continue not to like the communication you are getting from your doctor, find another one. You do not have to stay with them; if you upset them by leaving, they may look at how they practice. I have done this before. When my primary changed her practice, and I needed to find a new doctor, I spent a year going from one doctor to another until I found one I liked. Even with where I am, I can choose any doctor I want. This is for primary care. I could also do it in the pulmonologist group as well.

A month ago. I got it on Amazon. Ensure you get that one; he specifically gave me the Ridgecrest brand. It is a bit expensive, but I see a difference.

Yes, I agree.
I had a list of questions for the doctor but she left the room. As she was leaving the room I said I had some questions to ask at which she replied I will be back ....she did not return. I blame myself for that somewhat...I may have had too many questions on my paper and I FAILED also by not explaining something I should have informed her of, long story, but it happens. She sent her experienced nurse in to finish up and the nurse was able to answer a couple of the minor questions.
Yes, I also have done what you do...keep searching by making appointments etc. to find the doctor best suited for you. Yes, thank goodness for Medicare and the Supplement...we cans we any doctor one wants as a practicing doctor.
Thanks for your insight and reply.
Barbara

Clear Lungs Classic? What differences do you experience?

melb06, Hi. You're smart. I was diagnosed with MAC last spring, but it wasn't until today that I thought to look online for support groups. I was scared in the beginning, too, more about the drug regimen than the actual disease since at the time I was non-symptomatic. The side effects of the antibiotics haven't been terrible. Over the last six months, I've learned to expect fatigue (and sometimes chills) the day after I take my meds. Blood work has indicated no worrisome changes, and my teeth have not turned orange. Yay! I expect the next time I see my pulmonologist, he will want me to have my eyes checked. I also expect he'll want to increase my dosages again since the coughing has gotten worse, not better. May all go well for you as you begin the trek.

Hi Lorrie - Does the doctor have you doing daily airway clearance to help clear the mucus?
Did they advise you to have your hearing checked as well?
If the answer is no to both, the doc may not be very experienced in treating this infection, which is quite rare -not a condemnation of your doc.
How often is the doctor having you do sputum samples for culturing, so they can judge the pregress of your treatment?

Hi, Sue. No daily airway clearance and no hearing checks ... not yet anyway. I do, however, try to cough deeply, almost forcing the cough up and out to work the lungs.

My doctor sounds like he's been around the block a time or two with MAC, but I do live in the Southwest where there seem to be fewer MAC cases. My cardio doctor, for one, was surprised by the diagnosis. He said it's more prevalent in the Northeast.

I've given two sputum samples in the last six months. I'll know more about the second when I see my doctor in four weeks.

I'll ask about the daily airway clearance and the hearing check.

Thanks for your feedback.

Hi Barbara,
My ID doctor is very good so he did tell me about the improvements, however, I do read my results as soon as they are available from either Quest for the cultures or Advent Health for the CTs. It is always best, I think to look at the results and have questions ready before your next visit with the doctor. Quest results show a number like you mentioned. I went from 4+ to 1+. The CT, shows multiple cavities that have shrunk and no new ones. I always go to the same place so they add a comparison from the last scan.
We learn as we go so you are correct about knowing what to ask next time.
I am fortunate with my ID doc but ready to fire my pulmonologist. Although I had very good news, I do still have a collapsed upper left lobe which the pulmonologist doesn't even address. My ID doc is frustrated with him also for various reasons. He has referred me to IDC in Orlando because they have a team of doctors specializing in MAC and I could get in with a good pulmonologist. Also, he said that he is unable to prescribe clofazamine (must be a university dr) and he wants me on that if the next culture is still positive.
It is so important to have good doctors, familiar with treating MAC and willing to openly communicate with us.