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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@katemn

@windwalker, Terri QUESTION: when you do your Saline .. THEN your Toby .. do you use the SAME nebulizer .. or two different ones? If you use two different nebulizers .. do you sterilize the saline neb daily? Thank heavens for our wonderful Connect Forum!! Hugs! Katherine

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@windwalker, Terri, also .. when you say you do not “currently have an infection” .. be careful .. when I was diagnosed I was told .. just like the MAC .. Pseudomonas can be “stabilized” but not “cured” .. so the darn thing is still there in our lungs waiting to colonize EVEN when we don’t have an active infection .. DARN! .. OR like me .. get a couple MORE bacteria that we’ve never heard of! Hmmm! Hugs! Katherine

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@katemn

@windwalker, Terri, thank you so much .. YEAH for Connect! That is the routine I have used also except I do my two inhalers first .. then the Saline. I use a baby sterilizer for all the equipment .. started that back when I was doing the inhaled Amikacin. BUT I still didn’t quite get it .. you have a Toby ONLY neb cup .. BUT do you sterilize it daily? Wash and Sterilize 100% of the items daily? I ask because of : ” Member advice from Conference: They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers. ”

That SOUNDED like DAILY washing and sterilizing!! Can’t remember who posted that .. whoever did please jump in and tell us if it mentioned DAILY .. OR??? Sure makes a difference in effort and energy!! Hugs! Katherine

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@katemn
I have two neb cups. One I use only for my Toby. The other I squirt the
levabuterol into and do a treatment. Then I immediately squirt in the saline and
do a treatment. It is ok to do that. The Toby cup cannot be shared. I know I
should sterilize everything, but I don't, I put it in the dishwasher. I plan to
get a bottle sterilizer, just have not yet. 
 

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@katemn

@windwalker, Terri QUESTION: when you do your Saline .. THEN your Toby .. do you use the SAME nebulizer .. or two different ones? If you use two different nebulizers .. do you sterilize the saline neb daily? Thank heavens for our wonderful Connect Forum!! Hugs! Katherine

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@katemn Yes,
I am aware that we will never be cured of these bugs. What I was inferring
was that I have no active infection or colonizing bugs at the
moment.
 

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@katemn

@windwalker, Terri, thank you so much .. YEAH for Connect! That is the routine I have used also except I do my two inhalers first .. then the Saline. I use a baby sterilizer for all the equipment .. started that back when I was doing the inhaled Amikacin. BUT I still didn’t quite get it .. you have a Toby ONLY neb cup .. BUT do you sterilize it daily? Wash and Sterilize 100% of the items daily? I ask because of : ” Member advice from Conference: They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers. ”

That SOUNDED like DAILY washing and sterilizing!! Can’t remember who posted that .. whoever did please jump in and tell us if it mentioned DAILY .. OR??? Sure makes a difference in effort and energy!! Hugs! Katherine

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@katemn also
wanted to add that my Dr and I both suspect I have been suffering from
pseudomonas infection for years prior to testing. I got a definitive on
the toby too. It kills pseudomonas, but NOT MAC. I asked because I was
surprised that all of my coughing stopped after my first month on Toby.
Mind you, I have been coughing my head off constantly for the last 12 yrs
at least!
 

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@colleenyoung

Welcome to Connect, @shiell. You’ve found a great group of people here in the MAC & Bronchiectasis group. Kudos to you for having read everything the members have written!
Let me introduce you to @pamelasc1 and @jentaylor who also have or had pseudomonas. @windwalker has experience with tobramycin.

You may wish to also join the main MAC/bronchiectasis discussion here: http://mayocl.in/2cwX36M
We look forward to getting to know more about you.

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I wish I could be on it. I am allergic to it.

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@luvocean

I am new to this site but it is helpful to hear of others that are experiencing the same thing.
I have pseudomonis too but am unable to use the tobramycin as I am apparently allergic to it. It causes
tightness in my chest which makes it harder to breath. I hope they come up with something new soon.

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Thank you. I will mention it to my dr.

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@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

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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!

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@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

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

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@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

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@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 🙂

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@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

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@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

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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, 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

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