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@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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Replies to "@luvocean, do you have a first name? I also was recently diagnosed with Pseudomonas Aeruginosa. Dr...."

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

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

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!

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

@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 🙂

@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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