Thank you for writing. I felt comfortable with Dr. Moua and Mayo’s; however, after reading many articles here on this site, I guess it has me wondering if I’m diagnosed correctly. I have no special reasons to doubt and thought I was doing okay, but perhaps since my sputum tests are coming back negative………. maybe something is wrong with the testing. It is the same lab that did the test that showed pseudomonas a few months ago — but has not shown that since. I surely hope they aren’t missing that. I’ll start coughing again within a few weeks and perhaps I should go to another lab just to be sure that the one in Tulsa is not missing something. Do any others following this site have negative tests but still have flares of coughing? I originally thought if I was having a flare that there was some type bacteria causing it. Now, after four sessions and nothing found……. I believe that is why I feel somewhat worried. Perhaps others have same and have negative reports and I would love to hear from anyone if so. Thanks again for keeping up with me (of course I’m old and slow, so I don’t move very quickly. My last conversation with Dr. Moua (after 4th tests) was left that I would contact him immediately if anything is found on future tests.

@auntnanny, Jan, REMEMBER .. we are ALL about “Due Diligence” .. of COURSE you should seek out a “second opinion” about a lab! Call the best hospital in town and ask WHERE do THEY send their lab work? Don’t take no for an answer .. be persistent! Ask around .. you have to be your OWN best advocate Girlfriend! When you have FOUND the lab you want to go to .. you THEN have to contact your doctor to have him send the ORDER to that PARTICULAR LAB. Go for it! Hugs! Katherinne

Katherine —– I’m 2 hours from Tulsa (and the closest hospital is 30 minutes away. They send all their lab work to the lab in Tulsa. So….. there’s really no choice within 100 miles of here. Tulsa is a large lab and all the rural areas send to them. My husband drives my sample down there as soon as I collect it or — there is transportation from one of the smaller hospitals that drives their lab work to Tulsa at a certain time each day. I can catch that transportation some of the time.

@auntnanny Jan,
ask if they tested you for pseudomonas. We cannot ASSUME that all of the
organisms are being tested for. I have a sneaking feeling that I wasn't tested
four yrs ago and had it all along. When it was caught in 2016 and treated, ALL
of my coughing went away.
 

@auntnanny, When I attended the MAC conference this past
spring, it was mentioned that Lab Corp and the like are not thorough when
testing for these kinds of mycobacteriums. That is why I go to research
institutions where I KNOW they are doing it right. NTM Foundation is trying to
pass a law that the independent labs HAS to test our samples right down to the
SPECIE of MAC.
 

@auntnanny Jan, either you or your Dr. can call that lab and have them test
your sputem right down to the SPECIE. Most labs do not do that. It is important
because it effects what antibiotic they will use that will work. Not all
recommended antibiotics work on all MAC infections.
 

Thank you……. when I do next sputum test, I will ask the doctor to specifically ask for a pseudomonas and MAC result

Am wondering (just had a bad night)….. do others have horrible insomnia and night sweats with bronchiectasis? When I was diagnosed, Dr. Moua asked me if I had night sweats and I said “no” because at that time I did not. For about the last 6-8 months I really suffer with them. Sometimes it won’t happen, but far too often it does. I change nightclothes 2-3 times. Haven’t really slept all night in 20 years. Sleep for about 2 hours — then get up for a while — go back and can sleep two more hours, etc. Have tried Melatonin but didn’t think it was helping at all. Just wondering if this is part of bronchiectasis??????

I will definitely be sure pseudomonas is specifically mentioned on my next test. — thank you. I was treated with cipro for it the one time it was picked up and I stopped coughing for about 4-5 weeks. When I started again, another test was done, but at that time they did not report pseudomonas. So, was given a different antibiotic and again, after that, I was clear for about a month.

Hi Jan, yes, night sweats can be a symptom of bronchiectstasis and the infections we get from having it. I have read from many members on this forum that they deal with night sweats. For some of us, it is also menopause, sometimes hard to tell what is causing the sweats. You can mention it to your Dr. just to make sure nothing else is going on. I have them in diff levels of severity. Usually, not too bad. I turn my thermostat down to 70 and use only 100% cotton sheets and covers. Anything polyester tends to hold heat and make you feel like a rump roast in the oven. Anybody else have input about ‘night sweats’? -Terri M.

Thanks so much for the reply. Since I’m 76……. can’t blame it on menopause but just am glad to know others may experience the same.

@auntnanny No,
Jan, you are not alone with this. I have read it over and over again on this
forum. About insomnia due to night sweats. I forgot to mention that besides
turning the thermostat down, I also sleep with an overhead fan on. (and sleep
with one leg out of the covers) Honestly, despite all that I do to try to stay
cool; I am still throwing the covers off and on all night long. I just go with
it…..
 

Thank you…… normally I am cold all the time and feel very cold when I first go to bed, but after a couple of hours, the story changes. I still feel “cold”, but am doing a lot of sweating. I can live with it…… just complaining again….

Dear All, as many of you know .. I am battling three bacteria .. PSEUDOMONAS AERUGINOSA, KLEBSIELLA and SERRATIA   .  Right now I am not doing well with the enemy! I  am quite ill.  I contacted Colleen and requested a Leave of Absence as your Volunteer Mentor until I regain some strength. I ask that you ALL take loving care with each other .. support each other as I know you will .. BUT ESPECIALLY watch for Newcomers and help them as YOU have been helped.  You know so well how scary those beginning steps are .. support them along that journey .. they SO need it!  REMEMBER .. you ONLY need to be ONE baby step ahead of a Newcomer to support them!  DO IT! You will note @windwalker Terri with but 44% lung capacity tries her VERY best to always jump in to help me any time I’m not doing well .. can any of us do less? Support each other .. please do!

You needn’t send me caring and hug posts .. truthfully I am not going to be on Connect till I feel better  .. I am going to concentrate on rest and regaining some energy.  BUT I will FEEL your positive energy and hugs .. every single one of them!  Till I am better .. I am sending EACH of you a Big Hug!  Katherine

@katemn Love
and prayers for you Katherine. You KNOW we are all pulling for you!
Many thanks and many hugs. Now GO heal
yourself!