Have Bronchiectasis, recently diagnosed with pseudomonas

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

<br><br><br><br><br><br> 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

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.

@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

Gosh, I hope it wasn't the tobramycin that caused that. I don't see how that would be likely.

Just checking in.
Posted by @windwalker in MAC & Bronchiectasis, 2 minutes ago
Hello everybody. I have not posted in a while, so I am just checking in. I will be missing in action for the next month as I will have a steady stream of visitors until mid April. I am still doing exceptionally well. Still active and making lots of jewelry. Still on my alternating antibiotics of Cipro & Tobramycin. Just working at staying healthy. Go back to the Mayo June 20. I hope that each and every one of you are doing well also. I read the posts and it seems like you all are on top of things. Hugs! - Terri M.
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@windwalker Terri, moved you also to the Pseudomonas Page .. we NEED such good news on the Pseudomonas Page! SOOOO Happy to hear from you that your Pseudomonas is doing so well! Enjoy your visitors and let us know how your June appointment goes! Hugs to you! Katherine

As some of you know .. I was very ill starting 2/5/17 with extreme fatigue/no appetite/Brain fog/rapid weight loss of 6# .. I am small anyway so 6# was a lot/terrible coughing. Was in bed or a chair for essentially TWO months! I was then diagnosed with Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi 4/5/17.

I was prescribed: 4/5/17 -28 DAYS CIPRO 2X PER DAY resulting in zero affect .. 4/26/17 I STARTED INHALED TOBRAMYACIN for 28 days on then 28 days off .. for 3 cycles .. a total of 6 months.

Things I've learned so far on this journey that I felt I had to share so another Connect Member might profit and avoid what has happened to me. Hugs and greetings to all. I am with you in spirit! Katherine
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*REQUEST AN APPOINTMENT ASAP WITH A GOOD RESPIRATORY THERAPIST FOR:
a. proper use of inhalers that would be best for you
b. proper use of inhaler spacers (for YEARS I was NEVER advised to use a spacer with my two inhalers!!)
c. proper use of saline solutions inhalation to help with mucus
d. proper use of Aerobika with saline inhalation

*KNOW THE PROCEDURE WHEN SICK:
a. At Mayo Clinic when sick you are to call the NURSE rather than the Appointment Secy. Having never been so sick before I did not know the procedure and called the Appt Secy
b. I waited a full month for an appt meanwhile getting sicker and sicker.

*IMPORTANCE OF LUNG CLEARANCE IN USE OF TOBRAYACIN (and THE ENTIRE JOURNEY OF YOUR LUNG HEALTH!)
a. use Aerobika® Oscillating Positive Expiratory Pressure Therapy with Sodium Chloride Neb Solution
IMPORTANT THAT I WAS NOT TOLD.. only read about: Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.

(you will need prescription for Sodium .. using with Neb) (AEROECLIPSE XLBAN 6 MONTH REUSABLE Nebs) (good prices @ http://www.aerobika-therapy.com/order-today http://www.shopnebulizer.com/p-26249-monaghan-aeroeclipse-reusable-breath-actuated-nebulizer.html)

b. use Aerobika ALONE for good lung clearance .. DEFINITELY using the "HUFF' cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
c. prepare Tobramycin antibiotic then use recommended Pari LC Plus and Nebulizer Pari LC
https://www.healthproductsforyou.com/p-pari-vios-lc-plus-adult-aerosol-delivery-system.html
IMPORTANT THAT I WAS NOT TOLD.. only read about:
Take slow deep breaths .. holding for 3-4 seconds upon inhale before exhaling.
d. use Aerobika ALONE for good lung clearance.. DEFINITELY using the "HUFF' cough .. good example at https://www.youtube.com/watch?v=qYStVdltzTU
e. rinsing well with Colgate Peroxyl Mouth Sore Rinse after each Inhaled Tobramycin antibiotic session to take away the taste and then using Arm&Hammer PeroxiCare Toothpaste to ward off oral thrush.

I personally believe (and I will never be convinced otherwise) that the reason I got the 3 bacteria Pseudomonas Aeruginosa, Klebsiella Pneumonia Complex, Serratia Marcescens bacterias, and Penicillium sp fungi is that NO ONE EVER stressed to the point of getting it into my head .. the true importance of LUNG CLEARANCE .. SO I feel I did not spend enough time and energy doing proper lung clearance .. allowing my mucus to accumulate!!

YES, on one level I was aware that the mucus in our lungs become a breeding ground for "nasty critters" .. BUT frankly the process of lung clearance for me is physically exhausting and VERY time consuming. PLUS not ONE doctor sent me to a GOOD respiratory therapist who explained/demonstrated the importance NOR the process of GOOD lung clearance! AND how did I learn about good lung clearance .. AND about the Aerobika .. AND about using Saline Solution?? You got it!! On our beloved Mayo Clinic Connect!! NOT from my doctor .. LATER after I ASKED about it I was able to get more information .. BUT thank heavens for our Connect! Hope the above .. detailed as it is might help someone else avoid what I am dealing with.

This post by Katherine is greatly appreciated..filled with important information. Thank you Katherine! ... and I hope with each day you will be feeling stronger. I am glad I found it, as the last few days of Connect have been hard to navigate. Is anyone else having the same problems I am having? For instance, I got to Katherine's email today for the first time ( did not see it yesterday as I tried to find emails). But today when I clicked, I only had the option of "1" or "2" - then with her email were only 2 other emails, dated March 10, and March 31. In the past we were able to click on "Last" and read from the bottom up, in sequence, starting from the most recent and going backwards. That was a good system. Could we go back to that system?! Pamela

Hi Pamela,
The system to which you refer "Clicking Last" and going back through the most recent messages still exists. However, I think you were surprised to see that the latests messages on this particular discussion thread were from March. That is because Katherine posted this information about pseumonas to this discussion specific to pseumonas called "Have Bronchiectasis, recently diagnosed with pseumonas." This was a good idea from her because then anyone looking for info about pseumonas can find it here.

The discussion thread where members post almost everyday can be found here: http://mayocl.in/2cwX36M
It is called: "(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS" and has almost 3000 messages. Can you believe it? What an incredibly connected community. Simply click "Last" on this discussion and you will see all the recent messages as you are used to doing.

Of course, with 3000 messages important info gets buried too. So members are also starting new discussion specific to particular topics like travelling with MAC, collecting articles, etc. See all the topics when you go to the MAC & Bronchiectasis group here:
http://mayocl.in/2ouP4e8
Pamela, I see that you are following the group, so you won't miss any messages. Happy Connecting!