Welcome Linda, we are glad you found us too! It is recommended that you
read back through old posts to collect info that might help you. There were
recent posts about good timing to take your three meds that might be beneficial
if you should come across difficulties taking them. There is a wealth of
information here, feel free to ask questions about any little (or big) thing. It
is nice to be able to compare notes with each other; not to mention the great
support! Again, welcome aboard! - Terri M.
 

Hi Linda, Thanks for the information. I was at National Jewish for two weeks and pretty sure they checked every count possible. They are super thorough but I'll check through my test results and see. If not, I'll see if I can have it done.

This is how I started meds also. My body tolerated well. I had problems with Rifampin so they put me on Clofezamine instead. Then later they tried Rifabutin which I tolerated well. It's very weird and scary at first but you do adjust.

Did the doctors prescribe daily lung clearance for you? Both of my doctors (local and National Jewish) stressed that this was a necessity to stay healthy.

Best to you!

Jen

Hi Linda, glad you found this forum. You can read all the recent post and you will find them very helpful. I will have in my prayer. Cila

Hi Linda, Checking my blood tests I don't see a measurement of lgG so will write National Jewish and ask about it. Thanks for the suggestion. I am down with pneumonia in both lungs only 3 weeks after stopping meds so something is going on with my immune system.

Hi Jen, you been going to NJH? I was thinking to call them to make appt. I have been taking the 3 meds for MAC for a year and Wednesday saw my Dr. did CT scan shows that I have new nodules on right lower lung. That means the meds are not working. Told me to increase my zithromax to 500 and do the inhaled amikacin. I just don't know what to do now. Thanks for your info. Cila

Hi, I am so sorry to hear that news.....I will be interested to see if your docs think the infusions will help......I saw my ID doc yesterday and he feels I still need them while in treatment......I did hear along the way that many people live a healthy life with low IgG and they only treat the condition if your immune system is not doing its job.....That happened for me last Sept.......I am now in the lower range of normal after 4 infusions.....I go the end of the month.....It takes a few hours and the amount goes by your weight........
Hope you get the answers you need quickly......Waiting is the worst!
Thoughts are with you...
Lindaaz
xoxo
.

I too have been taking the meds for a year - however latest CXR showed no improvement, although no new lesions! Does this happen with a lot of people? My specialist is now sending me to a TB Specialist, although he said I don't have TB??? I am beginning to wonder if he knows what he is doing?

Tks for your info Bidgee

Hi Cila, Yes, I went to NJH as well as my local NTM specialist. I wanted a second opinion regarding treatment. Their appointments are about two weeks long. You go each day as an outpatient. My insurance covered most of it. Although two opinions can be confusing, I think it is best to be armed with as much information as possible when dealing with this disease and making decisions regarding my treatment. There is so much they really don't know.

Hello Jen,
I am new to this blog as of today. I started reading through posts about a month ago. From your post of Jan 2, 2017 you mention daily lung clearance. What is this? I have asked my Pulmonologist about a Repertory Therapy or anything I could do to help breath during exercising or to help the wheezing. He told me to use my pulmacort inhaler 2 x a day instead of one. Not the answer I was looking for.
I was diagnosed with MAC June 2016 but they suspect that I had it well before 2007. (An x-ray then showed abnormalities but no doctor followed up) I am currently on the cocktail of 3 antibiotic with signs of it getting worse. We are currently waiting for susceptibility test. My main question is what is daily lung clearance?
Thanks,
Kate

Hi @kate1320! We're happy to have you join this conversation. I would like to officially welcome you to Mayo Clinic Connect. After a month of reading, I'm sure you have gotten a peek at how we operate on this forum. I'm glad you have decided to join in on community discussion. 🙂

@jenblalock will have to answer your question on daily lung clearance.

Can you tell us- how did you cope with symptoms all those years without a diagnosis?