Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by shiell @shiell, Feb 25, 2017

I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

@auntnanny

My last four sputum tests have come back negative — which I don’t understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm. How can you have a negative sputum test while coughing with great production?

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@auntnanny Jan,
I am chilly all of the time too. It is 98 degrees outside, my thermostat by day
is set to 74-75 and I wear a super thick robe/jacket in my house most of the
time. Same here, crawl in bed, I am cold, hours later, burning up! I am so used
to it that it doesn't even annoy me anymore. I just roll with it. I can do that
because I am not soaking my pajamas two to three times a night like some of us
on this forum. That happens maybe once every several weeks. But hot, yes, every
night.
 

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Dear Katherine, This is Carolyn; I am a newly diagnosed woman you have helped tremendously in the last six weeks since I was diagnosed with MAC. I have read & learned so much from you & from other comments/tips on this forum. I went to Rochester Mayo 10 days ago & found an excellent primary ID doctor I formed a good bond with..have been very busy since I got home doing baseline testing, as you recommend. I will start on the Big Three in the next week or two–scared to death, as you so well remember and appreciate. I also understand I am beginning (what I hope to be) a long journey. Have just begun using an inhalant, a Nebulizor & Aerobika to help loosen mucous..lots to learn still!
But thanks to YOU & the other good people on this forum, I feel SO much less alone and for that I am very grateful.
I hope you read this and know that another person out there sends her love & support and best wishes to you, not to mention an abundant appreciation for what you have done with this forum. Namaste. (As my yoga teacher translates this: The Light in me recognizes the Light in you.)

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@katemn – Hello! In searching for help for my Husband who has had pseudomonas on and off since 2009, bronchiectasis for years and MAC since 9/2017. He is 75 and also has COPD and Pulmonary Fibrosis. I came across this very informative site! I can’t wait to read more about everyone’s stories.
My husband has had three rounds of IV antibiotics through a PICC line since beginning of July with no help. Oral antibiotics do not work anymore. One round of Ceftazadime and two rounds of Cepifime(?). He just got approved for the Tobi inhalation solution to start today.
My first question is 1) has anyone experienced severe nausea and/or chronic constipation?
My second question is, obviously (2) has anyone had the same problem getting a control on the pseudomonas? We have a wonderful team of our Infectious Disease Dr and our Pulmonary Dr at Loma Linda Hospital. History of also seeing wonderful pulmonary dr at UCLA.
Thank you for reading my husband’s illness and any responses will be welcome!

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@wifelaurie

@katemn – Hello! In searching for help for my Husband who has had pseudomonas on and off since 2009, bronchiectasis for years and MAC since 9/2017. He is 75 and also has COPD and Pulmonary Fibrosis. I came across this very informative site! I can’t wait to read more about everyone’s stories.
My husband has had three rounds of IV antibiotics through a PICC line since beginning of July with no help. Oral antibiotics do not work anymore. One round of Ceftazadime and two rounds of Cepifime(?). He just got approved for the Tobi inhalation solution to start today.
My first question is 1) has anyone experienced severe nausea and/or chronic constipation?
My second question is, obviously (2) has anyone had the same problem getting a control on the pseudomonas? We have a wonderful team of our Infectious Disease Dr and our Pulmonary Dr at Loma Linda Hospital. History of also seeing wonderful pulmonary dr at UCLA.
Thank you for reading my husband’s illness and any responses will be welcome!

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@wifelaurie Good morning Laurie and welcome to our group. I think it is wonderful of you to join 'Connect' on your husband's behalf. My name is Terri, and I now mentor this group. Your husband seems to have more than his fair share of serious lung issues. I feel for him, and you also. I know it is hard on the caregivers too. To try to answer your questions; some meds can cause nausea and constipation. If you can isolate which drug may be causing it, then deal with it. If one causes nausea, test to see if taking it differently like on an empty stomach or with food helps. Also, try to get plenty of fluids in him. That will help not only with constipation, but it will thin the mucous in his lungs and make it easier to cough up phlegm. Perhaps his doctor can recommend a remedy. As for the pseudomonas, I had it in 2016 and was treated with inhaled tobramycin. It worked wonders for me. The cough I had for years, was gone in 30 days. I am on monthly antibiotics for life including the tobramycin every other month. Fortunately, I tolerate them well. I believe that your husband may need to be on maintenance antibiotics indefinitely also as he will be forever suseptible to getting infections due to the numerous lung issues. Pseudomonas can be tenacious. It can be tough to get rid of, and it can return, as you know. (That is why I am onTobramycin every other month) It is good stuff. I hope it works as well for your husband as it did for me. Is his Pulmonary Fibrosis very advanced?

Liked by tdrell

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Pseudomonas is quite common with Brochiectisis patients. The tobomyicyn was very expensive, but effective for me. Well worth it. Hope it helps.

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@windwalker

@wifelaurie Good morning Laurie and welcome to our group. I think it is wonderful of you to join 'Connect' on your husband's behalf. My name is Terri, and I now mentor this group. Your husband seems to have more than his fair share of serious lung issues. I feel for him, and you also. I know it is hard on the caregivers too. To try to answer your questions; some meds can cause nausea and constipation. If you can isolate which drug may be causing it, then deal with it. If one causes nausea, test to see if taking it differently like on an empty stomach or with food helps. Also, try to get plenty of fluids in him. That will help not only with constipation, but it will thin the mucous in his lungs and make it easier to cough up phlegm. Perhaps his doctor can recommend a remedy. As for the pseudomonas, I had it in 2016 and was treated with inhaled tobramycin. It worked wonders for me. The cough I had for years, was gone in 30 days. I am on monthly antibiotics for life including the tobramycin every other month. Fortunately, I tolerate them well. I believe that your husband may need to be on maintenance antibiotics indefinitely also as he will be forever suseptible to getting infections due to the numerous lung issues. Pseudomonas can be tenacious. It can be tough to get rid of, and it can return, as you know. (That is why I am onTobramycin every other month) It is good stuff. I hope it works as well for your husband as it did for me. Is his Pulmonary Fibrosis very advanced?

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@windwalker Hi Terri, do you mind sharing what meds you are taking for your MAC? I was diagnosed MAC/MAI and pseodonomas aeruginosa. I dont feel like the pseudo went away w just the Cipro. Another sputum was just done Monday. Waiting for results. My doc said he likes to save Tobyrmcin as a last resort. 😖

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I had a dose of Cipro and it came back pretty quickly. Then I had Cipro (2 weeks) and Tobyrmcin for 1 month.

Liked by Margie E

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@elainet

Pseudomonas is quite common with Brochiectisis patients. The tobomyicyn was very expensive, but effective for me. Well worth it. Hope it helps.

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@elainet Welcome Elaine! So true about the toby being expensive. There is a foundation that will pick up what insurance doesn't pay for. (If you qualify for help, takes 5 mins on the phone) It is called The Healthwell Foundation. I will get back to you with the link for them. This info will be good for others that use tobramycin as well.

Liked by Margie E

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@elainet

I had a dose of Cipro and it came back pretty quickly. Then I had Cipro (2 weeks) and Tobyrmcin for 1 month.

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@elainet Not being on an antibiotic long enough is a common mistake that some doctors make. Been there, done that myself. People with bronchiectasis need to be on maintenance antibiotics if they are in the phase of the disease where mac and pseudomonas infections are starting. When I was diagnosed with mac in 2005, I was put on a ten day run of cipro, that's it. That was a temporary fix. Then, they put me on zythromycin for ten days. I was less sick, but still sick. I got sicker and sicker until I went to the Mayo Clinic finally in 2013. I was put on light, but steady monthly antibiotics for three years. It got rid of the mac. Then, I got pseudomonas in 2016, was put on tobramycin every other month, cipro on the other months. I am still on that regimen and doing great. The bottom line is, you may need to be on lifelong antibiotics if your bronchiectasis is bad enough. Many people on this forum are catching theirs early and slowing the progression of the disease. Have you read over some of our older posts on the discussion board? You can scroll down it and choose topics to read about. There is good info there.

Liked by Margie E

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@margiebanks

@windwalker Hi Terri, do you mind sharing what meds you are taking for your MAC? I was diagnosed MAC/MAI and pseodonomas aeruginosa. I dont feel like the pseudo went away w just the Cipro. Another sputum was just done Monday. Waiting for results. My doc said he likes to save Tobyrmcin as a last resort. 😖

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@margiebanks Hi Margie. I am on inhaled tobramycin for 30 days every other month (to keep pseudomonas away) and cipro for ten days on the other months (to keep mac away). My dr isn't treating any infections in me right now. I am infection free. Rather, he is treating the bronchiectasis. He knows bronchiecstaic lungs are prone to various infections so we are heading them off before they come. It is called 'prophylaxis', meaning 'preventative measure'. I also do the inhaled saline treatments twice a day. By alternating the monthly meds, it lessons the chance of the mac building a resistance to it. My doctor is a Mayo Clinic pulmonolgist; I trust him entirely as Mayo has done extensive research on this. Everyone's body is different and so is our disease levels. What works for me, may not work for everyone else. I wanted you to know that there are other treatment options besides going on the Big 3. Not everyone can tolerate the Big 3. I hope this helps.

Liked by Margie E

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@margiebanks

@windwalker Hi Terri, do you mind sharing what meds you are taking for your MAC? I was diagnosed MAC/MAI and pseodonomas aeruginosa. I dont feel like the pseudo went away w just the Cipro. Another sputum was just done Monday. Waiting for results. My doc said he likes to save Tobyrmcin as a last resort. 😖

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@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.

Liked by Margie E

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@windwalker

@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.

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@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.

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@windwalker

@wifelaurie Good morning Laurie and welcome to our group. I think it is wonderful of you to join 'Connect' on your husband's behalf. My name is Terri, and I now mentor this group. Your husband seems to have more than his fair share of serious lung issues. I feel for him, and you also. I know it is hard on the caregivers too. To try to answer your questions; some meds can cause nausea and constipation. If you can isolate which drug may be causing it, then deal with it. If one causes nausea, test to see if taking it differently like on an empty stomach or with food helps. Also, try to get plenty of fluids in him. That will help not only with constipation, but it will thin the mucous in his lungs and make it easier to cough up phlegm. Perhaps his doctor can recommend a remedy. As for the pseudomonas, I had it in 2016 and was treated with inhaled tobramycin. It worked wonders for me. The cough I had for years, was gone in 30 days. I am on monthly antibiotics for life including the tobramycin every other month. Fortunately, I tolerate them well. I believe that your husband may need to be on maintenance antibiotics indefinitely also as he will be forever suseptible to getting infections due to the numerous lung issues. Pseudomonas can be tenacious. It can be tough to get rid of, and it can return, as you know. (That is why I am onTobramycin every other month) It is good stuff. I hope it works as well for your husband as it did for me. Is his Pulmonary Fibrosis very advanced?

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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

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@margiebanks

@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.

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@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.

Liked by ling123

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@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.

Liked by ling123, Margie E

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