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shiell
@shiell

Posts: 3
Joined: Feb 25, 2017

Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by @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.

REPLY

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.

I too was diagnosed with pseudomonas after having MAIC two times. The first treatment for pseudomonas was a 14day 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 speutem 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.

Let me mention posts from two different MAC members .. hope it helps! Hugs to all! Katherine

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

@tay4rake

I too was diagnosed with pseudomonas after having MAIC two times. The first treatment for pseudomonas was a 14day 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 speutem 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.

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@shiell and @tay4rake, this is really good information for our Mayo Connect .. especially the fact that inhaled Tobymycin worked when antibiotic pill form did not .. good info! Thank you both .. and good luck! Thanks for jumping in! Katherine

@tay4rake

I too was diagnosed with pseudomonas after having MAIC two times. The first treatment for pseudomonas was a 14day 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 speutem 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.

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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.
 

@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 have had three diff organisms infect my lungs. MAC, pseudomonas, and
arugenosis (sp) ???? I am on tobramycin bi-monthly for an indefinite period.
It’s good stuff!  Terri M.
 
 

@katemn

Let me mention posts from two different MAC members .. hope it helps! Hugs to all! Katherine

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

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Funny, only we could speak freely over the color of mucous! Greenish
is def a sign of trouble.
 

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.

@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

@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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I have a friend that could not tolerate tobramycin also. He has better luck
with a drug called ‘calisten’. It is also a nebulized antibiotic.
 

@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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BTW Katherine ; pseudomonas A. was the last bug I got rid of after several
months on Toby. I know how rotten you were feeling.
 

@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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Hi KatemnThankyou for responding. Ive been on sub q infusion since 2009 and have run the gammut of all and now on ivig gammaplex ea month.Had it twice but getting worse. Cipro 500 was working last year but now doesnt. Now on Leviquin 2nd time in a row bu still ciughing and breathless. Also on 25 mg prednisone and Strong nebulizer meds twive daily. Last year diagnosed with pseudo, thus year couldnt find it with sputum. Treatmt with iv Astreonam(?) last year and trying to get it again but its hiding. Just mild(? )case of microbacterium (no treatmt) recommended by ID dr. Thank You again.Breathless but hopeful.Connie

@luvocean Connie, my goodness you have through the wringer! Having been newly diagnosed I am going to have to defer to others who have had more experience with Pseudomonas Aeruginosa. Maybe some of our other members could jump in with some thoughts?

I wonder .. have you had a second opinion from another GOOD Infectious Disease doctor? With all you have gone through .. if I was sitting in your shoes I would ABSOLUTELY be seeking a second opinion either at Mayo Clinic or JEWISH NATIONAL HEALTH. Pseudomonas Aeruginosa is not a bacteria to mess with. If you make that decision we can help you with further information. Just know that whatever you decide we will all be here for you .. supporting you every step of the way! Sending you a hug! Katherine

@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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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 dermatitus. After three days was discharged and saw my eye doc four days later. Eye looks pretty good’ perscribed Tobra ointment, used that night, same eye next A.M. back to doc. Now doing the inhaling, not believeing I’m tied to the O2. Eye is improveing.

@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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@shiell, WOW! SO sorry this happened to you .. must have SO scary. Hope things go better for you. Know that we will be thinking of you .. and sending you LOTS of positive energy!

However, interesting information for our Pseudomonas Aeruginosa Forum I just google “orbital cellulitus” because frankly I had never heard of it .. this is what I found:

Orbital cellulitis is inflammation of eye tissues behind the orbital septum. It most commonly refers to an acute spread of infection into the eye socket from either the adjacent sinuses or through the blood. Cellulitis of the eyelid, also known as periorbital or preseptal cellulitis, is an infection of the tissues around the eye. The infection can be caused by minor trauma to the area around the eye, such as an insect bite. It can also occur as a result of another infection. Preseptal cellulitis is a common infection of the eyelid and periorbital soft tissues that is characterized by acute eyelid erythema and edema. Preseptal cellulitis may be caused by bacteria, viruses, fungi, or another infection.

Is this an accurate explanation? What you were told? From the above explanation it would almost sound like “It can also occur as a result of another infection.” .. like maybe it could have been also caused by the Pseudomonas I’d be REALLY curious if you were to ask your doctors . a relationship between the “orbital cellulitus” and Pseudomonas ?

@shiell, .. do you have a first name .. more personal! The reason I would love to see you question your doctor is BECAUSE here on the Forum we have found so frequently doctors do not put 2 and 2 together with our complex MAC .. Bronchiectasis .. ..Pseudomonas .. health situations. That we really have to be our OWN best advocates .. because NOBODY cares about our bodies as much as WE do. Frankly you would be doing a service to our Forum if you DID find a connection between your “orbital cellulitus” and Pseudomonas .. OR if there is ZERO connection. If you do not feel comfortable printing out this post and asking your doctors .. not to worry. Your health is your FIRST priority .. that is what we care about most! You do what is comfortable for YOU. Meanwhile concentrate on doing your best to get healthy again .. know that all of us are here for you every step of the way .. ask any question you want .. if we can help .. you can bet we will try! Sending you a Big Hug! Katherine

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