Continuous Bronchiectasis exacerbation- Lung infections

Posted by shonney @shonney, May 13 3:25pm

All symptoms resolved when I changed antibiotics.

That's the short story short. Here's the long story see if it sounds like you. I started getting lung colds after being diagnosed with BE. I'd go to the doctor, get antibiotics and get better....mostly. Then I'd start a month long decline until I had another severe lung cold. My pulmonologist said I had BE and asthma and chronic bronchitis, perhaps aggravated by environmental factors. I was on long lasting bronchio-dialators and steroids, nasal rinses, long-term low-dose antibiotics. I took bacterial lung tests that at first were positive and then came back consistantly negative.

A year into this, I had the idea to "Cut it out!", you can search for that discussion to learn all about that. I decided to get the BE section of my lung cut out and solve the problem once and for all. A month afterwards, the lung infections returned and lasted another 9 months. That is until, exasperated, depressed, and drained, I went to an urgent care clinic. There the young P.A. looked and my chart and said, "Huh? They've been giving you the same antibiotics this whole time. Let's try this different stronger one a try." THANK YOU! NAMELESS DOCTOR. Within 5 days I'd felt better than I had in two years. It turned out that I had an antibiotic resistant strain of bacteria that was deeply embedded in my mucous such that it didn't show up on the tests. IT HAS BEEN 3 MONTHS NOW OF PERFECT LUNG HEALTH. I can't stop sucking in deeply the delicious air. I just got the rest of my life handed back to me with free of this malady.

I wanted to post this on here in case any of you are going through something similar. Yes the BE made the infections worse, but the reason they kept returning was due to the resistant bacteria they couldn't detect, rather than all the other causes the "experts" thought up. I truthfully don't blame them though. I was actually seeing too many different doctors, such that none of them were tracking the repetition of the antibiotic prescriptions. Also, it took me taking detailed daily notes and color coding them and marking on a printed calendar which days I was sick and well, until I could see that pattern caused by the antibiotic resistance.

I wish you all well, I know how horrible it is to not be able to take a deep breath without having coughing fits.

Much love,
Shon.

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irenea8 | @irenea8 | May 14 7:04am

what antibiotic were you on and which antibiotic replaced it? Long term low dose for what bacteria?

shonney | @shonney | May 14 11:30am

For most of the first year sputum tests showed that I had Haemophilus Influenzae repeatedly. I took Azithromycin and Amoxi-CLV together. After 9 months, those tests started coming back negative. My pulmonologist concluded I wasn't having bacterial infections anymore, however I still reacted positively to antibiotics, though I'd eventually get sick again. That was a major clue that the tests weren't picking up the resistant bacteria embedded deep in my lungs.

I was on long term low dose Azithromycin as a prophylactic for about 4 months in the middle of the two years of illness. At the end of that period it stopped having any effect. So I got my lung's right upper lobe removed.

After another 9 months I took Levoflaxacin which gets deep into the tissues and that solved it!

P.S. I had perfect lung health for 2 months, but after 2 years of severe illness, I got the opportunity to take IVIG as a preventative measure and I've been doing that for 2 months now.

@ling | @wangling | May 14 2:27pm

Hi Shon,
I was wondering about you after the surgery "cut it out". The surgery did not work? It didn't prevent you from getting infections. Do you have to do airway clearance like you used to?
Hope you continue to do well.
Ling

shonney | @shonney | May 14 10:35pm

Hi Ling,

After the lung surgery, my lung infections were less severe and more generalized in my whole lungs. Never-the-less, the cycle of lung infection continued unabated. Truthfully, I might have never gotten the surgery if the antibiotic resistance had gotten figured out ahead of time. That said, I think in the long run I'm better off with the B.E. removed frome being a vector for future infections, especially as I age. The reason I'm posting about this here is that I hope to prevent others from suffering long term resistant infections disguised as asthma, severe BE, and chronic bronchitis. It would be worth a shot at taking stronger antibiotics if you have constant exacerbations just to rule out a potential cause.

My lungs are completely clear. I'm taking no drugs, nor doing any airway clearance activities. I'm free!

Wishing you the best Ling,
-Shon

brody89 | @brody89 | May 15 7:06am

i have bronchieatasis in both my middle and lower lobes.All i get out of the doctor is that he has seen much worse.
Last couple of months my condition has worsened where i have flare ups every day and on symbicort 200/6 one dose every 12 hours.I cough alot and have been on antibiotics three different types,dont know if they have helped or not.
Doctors always mention infection but i think with my condition which has damaged airways, is just cyclic which creates alot more sputum which has to be coughed up.
I have clear sputum and hope that the new drug Brinsupri will be available soon.
There is also early trials on P63 lung basal stem cells, Autolugus delivered by broncoscope to the lungs after the cells have been taken from the lung and cultered and re implanted.
Early results very encouraging.

lvnl | @lvnl | May 15 9:14am

In reply to @shonney "For most of the first year sputum tests showed that I had Haemophilus Influenzae repeatedly. I..." + (show)

@shonney
I had RSV that developed into pneumonia this spring. When the pneumonia was confirmed on X-ray I was put on amoxicillin. When that had no effect I was put on levaquin (levoflaxin) and improved markedly. The cultures came back negative for bacteria. Which was puzzling but your conclusion of a bacterial infection "hiding" from cultures could explain it!

@ling | @wangling | May 15 10:14am

In reply to @shonney "Hi Ling, After the lung surgery, my lung infections were less severe and more generalized in..." + (show)

Thank you, Shon. I am so happy for you for being free. We all know what that means. I hope you continue to do well forever ...

Ling

Sue, Volunteer Mentor | @sueinmn | May 15 10:59am

In reply to @brody89 "i have bronchieatasis in both my middle and lower lobes.All i get out of the doctor..." + (show)

@brody89 Has the doctor ordered a culture of your sputum to determine exactly what bacteria is in your lungs, and to which antibiotics it is sensitive?
Have you been instructed in how to do daily airway clearance to help remove the mucus where bacteria hide?

shonney | @shonney | May 15 10:00pm

In reply to @brody89 "i have bronchieatasis in both my middle and lower lobes.All i get out of the doctor..." + (show)

@brody89 I feel for you. After two years I was getting depressed. I like how you're looking out for positive futures. For me, the antibiotics worked and was directly correlated feeling better. That is what clued me into that it was a bacterial infection even without the tests showing positive. My sputum was thick and gray yellow which I associated with white blood cells fighting infection. From your description, it sounds like you've got something else going on. I wish you the best!

mjf33709 | @mjf33709 | May 16 11:43am

In reply to @brody89 "i have bronchieatasis in both my middle and lower lobes.All i get out of the doctor..." + (show)

@brody89 Brinsupri is available now. My husband just received his first shipment from a specialty pharmacy. It is very, very expensive and dr had to provide documentation (I believe it's called pre-authorization) to his insurance co. for it to be approved.

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