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.

@katemn

@luvocean, do you have a first name? I also was recently diagnosed with Pseudomonas Aeruginosa. Dr. Timothy Aksamit at Mayo Clinic, Rochester MN first line of defense BEFORE Toby prescribed for me: Cipro 500 mg .. 2x per day for 28 days. QUESTION: has anyone suggested that to you? Please speak to a GOOD Infectious Disease doctor ASAP because Pseudomonas Aeruginosa is NOT a bacteria to be messed with .. it can be potentially very serious if not treated.

Just google it. I am BIG on “due diligence” .. educating yourself .. being your OWN best advocate! Keep in mind .. NOBODY cares about your body as much as YOU do .. if you don’t take good care of your body .. who will?? Please keep us posted! Sending you a hug! Katherine

Jump to this post

My name is Connie. My pseudo doesnt respond to Cipro now or Levoquin or another drug given by IV Astreonam. My pulmonary dr refers me to ID dr who does a sputum test and never calls me back. I am now getting IV gammaplex after sub q stopped working from immunologist. But now I am sick again. So darn frustrating!

REPLY
@katemn

@luvocean, do you have a first name? I also was recently diagnosed with Pseudomonas Aeruginosa. Dr. Timothy Aksamit at Mayo Clinic, Rochester MN first line of defense BEFORE Toby prescribed for me: Cipro 500 mg .. 2x per day for 28 days. QUESTION: has anyone suggested that to you? Please speak to a GOOD Infectious Disease doctor ASAP because Pseudomonas Aeruginosa is NOT a bacteria to be messed with .. it can be potentially very serious if not treated.

Just google it. I am BIG on “due diligence” .. educating yourself .. being your OWN best advocate! Keep in mind .. NOBODY cares about your body as much as YOU do .. if you don’t take good care of your body .. who will?? Please keep us posted! Sending you a hug! Katherine

Jump to this post

This. ‘bug’ seems different because my head hurts so bad when I cough!

REPLY
@katemn

@luvocean, do you have a first name? I also was recently diagnosed with Pseudomonas Aeruginosa. Dr. Timothy Aksamit at Mayo Clinic, Rochester MN first line of defense BEFORE Toby prescribed for me: Cipro 500 mg .. 2x per day for 28 days. QUESTION: has anyone suggested that to you? Please speak to a GOOD Infectious Disease doctor ASAP because Pseudomonas Aeruginosa is NOT a bacteria to be messed with .. it can be potentially very serious if not treated.

Just google it. I am BIG on “due diligence” .. educating yourself .. being your OWN best advocate! Keep in mind .. NOBODY cares about your body as much as YOU do .. if you don’t take good care of your body .. who will?? Please keep us posted! Sending you a hug! Katherine

Jump to this post

@loveocean Connie, Welcome to a great Community of woman that are there for one another through the good & bad! Use this forum to help gain information on so many things related to MAC/Bronchectasis. The KNOWLEDGE is endless & priceless!!! You are connecting with people who know lots of “stuff” because they have gone through it & they want to help you by sharing their own experiences with you. Also use this forum as a means of SUPPORT. We will be hear to LISTEN & to offer suggestions to help get you through & to help LIFT YOU UP & CHEER YOU ON!!!!!! So happy to have you join the group!!!

I hear your frustration & I hope you get feedback that is helpful & comforting. A big benefit to being a part of this group/forum is that you will be able to relate to others & it helps to know you are not alone in this. Genuinely caring people are here, waiting to listen, to help educate, to offer comfort & to cheer you on! I hope you “get” what you need from this group/forum as well as get what you didn’t even expect! Welcome, Connie! Best, Jen 🙂

REPLY
@katemn

@luvocean, do you have a first name? I also was recently diagnosed with Pseudomonas Aeruginosa. Dr. Timothy Aksamit at Mayo Clinic, Rochester MN first line of defense BEFORE Toby prescribed for me: Cipro 500 mg .. 2x per day for 28 days. QUESTION: has anyone suggested that to you? Please speak to a GOOD Infectious Disease doctor ASAP because Pseudomonas Aeruginosa is NOT a bacteria to be messed with .. it can be potentially very serious if not treated.

Just google it. I am BIG on “due diligence” .. educating yourself .. being your OWN best advocate! Keep in mind .. NOBODY cares about your body as much as YOU do .. if you don’t take good care of your body .. who will?? Please keep us posted! Sending you a hug! Katherine

Jump to this post

@luvocean, Connie, I know it is tough when you feel so lousy .. BUT YOU must be your own best advocate .. NOBODY is going to do it for you! You CALL THAT ID doctor and tell them you are on the MAYO CLINIC CONNECT, ROCHESTER MN Forum and they are SHOCKED that in your condition he is not answering your phone calls! You do NOT have to be nice! Remember “The squeaky wheel gets the oil!” This just irritates the heck out of me that you are NOT responding to meds .. have been referred .. AND not getting responses to your phone calls! REMEMBER .. you are given but ONE BODY in this lifetime .. if YOU don’t take care of it .. how can it possible take care of you for the rest of your life! Do you think that doctor cares as much as you do?? Heck No! You get on that phone tomorrow and get some answers!! Sit down tonight .. write out exactly what your symptoms HAVE been/ CURRENTLY are/ what you WANT from this doctor / WHEN you want action. ASK what he is looking for from that sputum culture AND when the result will be back!! AND what the plan of action will be based on the probable results of the culture. THEN be firm! YOU are the EMPLOYER .. HE is the employee .. don’t you EVER forget that .. even when you feel lousy! I’m sending you a Hug and Lots of strenght! Katherine

REPLY

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?

REPLY

@auntnanny .. Jan, green sputum usually means pseudomonas. PLEASE have your doctor check for this. Hugs Katherine

From my File Cabinet:
PSEUDEMONIS INFECTION- COUGHING BADLY Member @windwalker, Terri I am on a bi-monthly cycle of 28 days on tobramycin (inhaled antibiotic with nebulizer) then 10 days off, then 10 days on cipro, then 10 days off, then back on tobramycin.

Member @pamelasc1, Pamela, and @jentaylor My cough got much worse and I was coughing up stuff I could not believe – my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC – has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff – you may want to get a test for pseudemonis, just to rule it out. The sputum had a distinct taste, smell & color (dark gray & dark green) or color was off white, gray maybe a bit greenish, but mostly grey – and very thick and mucousy.
http://www.medicinenet.com/script/main/art.asp?articlekey=20161

Member @tay4rake I too was diagnosed with pseudomonas after having MAC two times. The first treatment for pseudomonas was a 14 day Rx of Ciprofloxacin. I felt better immediately and the symptoms went away. Within 2 weeks of finishing my Rx the symptoms started to come back. My sputum was retested and I still had pseudomonas. I was prescribed the Tobymycin Inhaler for 30 days. I have very good insurance but my out of pocket was over $1000. It was worth every penny. The Tobymycin worked and I have been feeling major symptom free since I finished it May 2016.

Member @windwalker, Terri Healthwell is a charitable organization that helps with your co-pay if you fall within a certain financial bracket. They helped pay for my tobramycin. Am super grateful for it. I do donate voluntarily back to them some $$ to give back and help replenish their funds. Hope this helps. Also, if any of you out there want to donate to them, it is a tax deductible item. Plus, it helps many people, especially those with Cystic Fibrosis. (Tobymycin is expensive, but there are other charities that help pay for it. The specialized Walgreen’s pharmacy has a list of those charities. Treatment with ‘Toby’ is ONE drug, nebulized straight into the lungs, no harsh side-effects.)

Member @shiell I have read everything today that I find on this site. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and relatively active. Caretaker part time for spouse with end stage COPD. Thanks for being here. .. and .. After beginning tobramycin inhalation I developed what was believed to be “orbital cellulitus”, hospitalized, put on oxygen( never had been before) my skin and eye looked bad. The eye doc though “contact dermatitis”. After three days was discharged and saw my eye doc four days later. Eye looks pretty good prescribed Tobra ointment, used that night, same eye next A.M. back to doc. Now doing the inhaling, not believing I’m tied to the O2

REPLY

Yes, I worry the tests may not be accurate but the same lab is doing the cultures that earlier reported pseudomonas — they just don’t see it at this time. I use a nebulizer twice daily with albuterol followed by saline. And, do antibiotics according to the sputum results. Dr. Moua is great to call or contact me when I send in reports. Do you know anyone else using him at Mayo’s????

REPLY
@katemn

@auntnanny .. Jan, green sputum usually means pseudomonas. PLEASE have your doctor check for this. Hugs Katherine

From my File Cabinet:
PSEUDEMONIS INFECTION- COUGHING BADLY Member @windwalker, Terri I am on a bi-monthly cycle of 28 days on tobramycin (inhaled antibiotic with nebulizer) then 10 days off, then 10 days on cipro, then 10 days off, then back on tobramycin.

Member @pamelasc1, Pamela, and @jentaylor My cough got much worse and I was coughing up stuff I could not believe – my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC – has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff – you may want to get a test for pseudemonis, just to rule it out. The sputum had a distinct taste, smell & color (dark gray & dark green) or color was off white, gray maybe a bit greenish, but mostly grey – and very thick and mucousy.
http://www.medicinenet.com/script/main/art.asp?articlekey=20161

Member @tay4rake I too was diagnosed with pseudomonas after having MAC two times. The first treatment for pseudomonas was a 14 day Rx of Ciprofloxacin. I felt better immediately and the symptoms went away. Within 2 weeks of finishing my Rx the symptoms started to come back. My sputum was retested and I still had pseudomonas. I was prescribed the Tobymycin Inhaler for 30 days. I have very good insurance but my out of pocket was over $1000. It was worth every penny. The Tobymycin worked and I have been feeling major symptom free since I finished it May 2016.

Member @windwalker, Terri Healthwell is a charitable organization that helps with your co-pay if you fall within a certain financial bracket. They helped pay for my tobramycin. Am super grateful for it. I do donate voluntarily back to them some $$ to give back and help replenish their funds. Hope this helps. Also, if any of you out there want to donate to them, it is a tax deductible item. Plus, it helps many people, especially those with Cystic Fibrosis. (Tobymycin is expensive, but there are other charities that help pay for it. The specialized Walgreen’s pharmacy has a list of those charities. Treatment with ‘Toby’ is ONE drug, nebulized straight into the lungs, no harsh side-effects.)

Member @shiell I have read everything today that I find on this site. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and relatively active. Caretaker part time for spouse with end stage COPD. Thanks for being here. .. and .. After beginning tobramycin inhalation I developed what was believed to be “orbital cellulitus”, hospitalized, put on oxygen( never had been before) my skin and eye looked bad. The eye doc though “contact dermatitis”. After three days was discharged and saw my eye doc four days later. Eye looks pretty good prescribed Tobra ointment, used that night, same eye next A.M. back to doc. Now doing the inhaling, not believing I’m tied to the O2

Jump to this post

@shiell Was it the tobramycin that caused you to have the orbital cellulitus? – Terri M.

REPLY
@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?

Jump to this post

Jan, I would ask what they specifically tested you for that came back negative. You may have something that wasn’t on the test request. It could also be an ordinary infection of sorts. Even those can turn into worse conditions inviting the bad bugs back (MAC & pseudomonas) My drs have always put me on antibiotics when I get a lung infection of any kind. When you have bronchiecstasis; even a common cold can morph into pneumonia because our lungs are diseased and weakened.

REPLY
@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?

Jump to this post

I don’t understand everything that is written on the script for the sputum testing. It has been the same lab for the last two years and it’s been only the last four tests that have been negative for bacteria. Prior to that there was MRSA a few times, MSSA on other occasions and pseudomonas once. The pseudomonas were treated with cipro and didn’t show up again after that. MAC was just a tiny bit at Mayo’s and the pulmonologists working with me there made a consensus opinion that it wasn’t enough that they wanted to do the 3-antibiotic therapy. We continued to do sputum testing and after about three months, it hasn’t shown since then. I know tobrymacin (sp) is one of the drugs that will be used if I slip backwards at all. So far, I guess I’m okay. They told me upfront it is chronic and that they cannot cure it but they felt they could manage it. So, their regimen at this point has been treating with the antibiotics shown to be effective on whatever bacteria shows in the tests. When the negative tests occur, we still do 10 days of an antibiotic and that so far as kept me going. I’ll be clear for 3-5 weeks after that. Yes, I was told upfront that I would easily contract peumonia but it will be three years this fall…… and I have been blessed and haven’t been ill.

I have met a lady in Colorado Springs (retired schoolteacher) who uses National Jewish and feels that are by far the best place to be. She was diagnosed about 15 years ago and she does bronchoscopies usually once monthly. She is unable to cough up the mucus plugs and they do that to test for bacteria versus the sputum testing because she can’t get a sample that way. She also uses the specialized vest to help her be able to cough. I can cough it up very easily so I haven’t needed to do some of the things she does to give a sample. She had pseudomonas at one time also.

I’m sorry I can’t give you more specifics on the tests I do but I know nothing more than what they tell me. Thanks so much for caring. Jan

REPLY
@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?

Jump to this post

How often do your doctors test your sputum? Is it on a regular basis or only when you feel sick? robynmar

REPLY
@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?

Jump to this post

I get checked every six months. They just moved it to 1 yr because I have
been doing so well. If I get an infection before then, I will go in for testing.
But I am on maintenance antibiotics for the rest of my life to try to prevent
infections from re-occurring. I am still waiting for results from my last dr
visit. It takes awhile to grow the MAC and pseudomonas. So, we will see if I am
clean now.
 

REPLY
@katemn

@auntnanny .. Jan, green sputum usually means pseudomonas. PLEASE have your doctor check for this. Hugs Katherine

From my File Cabinet:
PSEUDEMONIS INFECTION- COUGHING BADLY Member @windwalker, Terri I am on a bi-monthly cycle of 28 days on tobramycin (inhaled antibiotic with nebulizer) then 10 days off, then 10 days on cipro, then 10 days off, then back on tobramycin.

Member @pamelasc1, Pamela, and @jentaylor My cough got much worse and I was coughing up stuff I could not believe – my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC – has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff – you may want to get a test for pseudemonis, just to rule it out. The sputum had a distinct taste, smell & color (dark gray & dark green) or color was off white, gray maybe a bit greenish, but mostly grey – and very thick and mucousy.
http://www.medicinenet.com/script/main/art.asp?articlekey=20161

Member @tay4rake I too was diagnosed with pseudomonas after having MAC two times. The first treatment for pseudomonas was a 14 day Rx of Ciprofloxacin. I felt better immediately and the symptoms went away. Within 2 weeks of finishing my Rx the symptoms started to come back. My sputum was retested and I still had pseudomonas. I was prescribed the Tobymycin Inhaler for 30 days. I have very good insurance but my out of pocket was over $1000. It was worth every penny. The Tobymycin worked and I have been feeling major symptom free since I finished it May 2016.

Member @windwalker, Terri Healthwell is a charitable organization that helps with your co-pay if you fall within a certain financial bracket. They helped pay for my tobramycin. Am super grateful for it. I do donate voluntarily back to them some $$ to give back and help replenish their funds. Hope this helps. Also, if any of you out there want to donate to them, it is a tax deductible item. Plus, it helps many people, especially those with Cystic Fibrosis. (Tobymycin is expensive, but there are other charities that help pay for it. The specialized Walgreen’s pharmacy has a list of those charities. Treatment with ‘Toby’ is ONE drug, nebulized straight into the lungs, no harsh side-effects.)

Member @shiell I have read everything today that I find on this site. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and relatively active. Caretaker part time for spouse with end stage COPD. Thanks for being here. .. and .. After beginning tobramycin inhalation I developed what was believed to be “orbital cellulitus”, hospitalized, put on oxygen( never had been before) my skin and eye looked bad. The eye doc though “contact dermatitis”. After three days was discharged and saw my eye doc four days later. Eye looks pretty good prescribed Tobra ointment, used that night, same eye next A.M. back to doc. Now doing the inhaling, not believing I’m tied to the O2

Jump to this post

Hi, Member @shiell: I’m another oldster, I’ll be 90 in December. My MAC damage goes back to radiation for breast cancer when I was 60. Lots of pneumonias since then. First bout with MAC and 3 drug treatment was in 2001. Now it’s back. I currently have a lung infection of Proteus m. and am on Bactrim. I think Cipro would have been a better choice. I’m sorry to learn that serial lung infections seem to be part of the MAC legacy. I’d rather be baking cookies and hugging my grandkids. robynmar

REPLY
@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?

Jump to this post

I just have it tested when I start to cough…… no definite timeline. Does it make sense to you that I stop coughing for basically a month after 10 days of antibiotics — but still have mac or pseudomonas???? If that were the case, why would the coughing cease? As you can tell, I don’t know much

REPLY
@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?

Jump to this post

@auntnanny, Jan, you seem very comfortable with Dr Moua at Mayo .. but you do seem very concerned. Each of us has the right to a second opinion to feel serene .. you said: ” lady in Colorado Springs (retired schoolteacher) who uses National Jewish and feels that are by far the best place to be.” If you feel the need for a good second opinion NJH is an excellent place to get it. Hugs to you! Katherine

From my File Cabinet:
JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don’t be afraid to call them and ask that question; they are extremely kind and professional. I really like my Dr. Drummond.

FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH……for the first 50 years of their existence….1898 til 1958 they did not charge clients..I am on Medicare….they accepted it fully….3 months after my trip….l have yet to see a bill….they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true….but it is there to help people. l beg you to contact them to check

From member @tdrell, Terri : At National Jewish Health last week, all I did was show my Medicare card then my supplement card……no other mention of $/payments. I could focus my energy on the rigorous tests without worry about paying for pricey tests….especially as they were added.

Member @beatitnow ..my doctor is Dr. Castro at Barnes Jewish Hospital. The phone number is 314-454-8917

REPLY
Please login or register to post a reply.