Have Bronchiectasis, recently diagnosed with pseudomonas

@margiebanks There will be a suseptibility test result along with your mac results. That test will tell which antibiotics will work best against your strain of mac. I agree, it is good to save the really strong antibiotics as a last resort because you don't want to run out of options. My doctor told me back in 2013 that he didn't want me on zithromycin. He wanted save that as a big gun later in life if I need it. In the last 15 yrs, all of my doctors used toput me on it at least twice a year. My dr said that is not a drug you would want mac to become resistant to.

@windwalker Thanks for the great info. I've been scrutinizing my original tests results today and he ddnt do susceptibility testing on the MAC, just the pseudo. Said that MAC had too many and we would treat w the big 3. My insurance covers the testing he should order it. When I go to the Labcorp site it says lots of docs prescribe based on their experiences. Is zithromycin different
from Azithromycin? That was part of my big 3.

Hi all Here is an interesting article.. https://bronchiectasisnewstoday.com/2018/11/15/bpi-autoantibodies-linked-pseudomonas-infection-bronchiectasis-patients-study/
Sorry its so long

@margiebanks Hi Margie. I am dismayed that your dr didn't have the lab do a suseptibility test on your mac. I spoke to my dr at Mayo today at length about treating mac. He said nobody should be put on the Big 3 without trying a different regimen first. That regimen being something like what he did for me which was 10 days a month on alternating months of cipro, and 10 days on doxycycline. That is what my suseptibility test showed would work for me. Then, you would be closely followed to make sure you are not getting worse. He said the Big 3 antibiotics are not really strong drugs, they are just hard to tolerate. His experience is that 1 yr to 18 months on those is not long enough to erradicate the mac completely and can have a higher return rate. Plus, you cannot stay on those longer than that amount of time. Staying on the 10 day a month regimen for many years has a better chance of getting rid of the mac for good. But even then, only 30% of people will get rid of it for good and not need antibiotics for it again. Typically, those that beat it do not have damaged lungs from bronchiectasis and COPD. He also said that he saw a patient today that had been treated with IV meds for her mac by a private physician. The IV med was overkill for the type of mac she had and did some damage to her body. So, he is trying to treat her for that. It was a very enlightening conversation.

@heathert Thank you for posting this article. It goes along with what my dr said to my husband and I when we first consulted with him in 2013. He said that bronchiectasis was very much the same as CF without the CF gene. And it has to do the the proteins that we lack to protect the lungs from various bacterias that we breathe in. It is funny, I guessed it was a protein issue back in 2007. I did all kinds of research online through NIH, Mayo, and institutes in other countries including the UK, Germany & Japan. I had notebooks that looked like a mad scientist was trying to figure out a great mystery. Well, I WAS trying to figure out a great mystery. I was stymied as to why an otherwise healthy person (me) was so incredibly ill. It all pointed to a protein issue. As I recall, it was a B protein of some sort.

@windwalker, you are one clever cookie!!! I do have 1 CF gene and so did alot of MAC/bronch people on this site (it takes 2 CF genes to have CF) a way back, having 1 CF gene means lung issues and low BP etc, very interesting. Windwalker have you been tested for the CF gene?

@terri, I went to see a neurologist for my feet. She gave me a blood test, including vitamin B 6. Turns out my b6 level was so high it was toxic. It takes a year or two to eliminate...it is not soluble and gets stored in muscles. She told me to check labels, especially energy drinks which almost always have a lot of B6. That was about 7 months ago. I had a recent test; had to be sent to a lab in Virginia as B6 testing is not a routine blood works test. Three weeks later I got the results. I think a normal range was like 1.2 to 2.1...mine was 126. Really high. I'm wondering what a B protein is. High B6 is one of the causes of peripheral nephropathy. My primary doctor, very knowledgeable
had never herd of B6 toxicity. Just wondering if any Mayo buddies have vitamin or protein problems. Flib

windwalker……. I'm curious as to whether you were tested to see if you could tolerate tobramyacin before you started it. My Mayo doctor wants me to come to Rochester to be tested with it before I start a program of 30 days on -- 30 days off. No other antibiotic on the "off" month. He thinks a year of that might rid the pseudemonas. My appointment is Feb 6th --- hoping snow is not knee deep up there at that time.

@auntnanny Hi Jan! I have been on the toby since 2016 without any problems. I will try it again next month (per my dr) and see what happens. My pseudomonas is considered 'gone' , but my dr says it never truly is. He said it resides deep down in the lungs. We are considered infected when they colonize.

@flib Yikes! How in the world did you get high b-12 poisoning? Were you drinking those energy drinks?