It is not necessarily poor due diligence Katherine. I think when we don't know what questions to ask - we don't ask.

Katherine, That's good information. I'm looking at my sputum culture results - the ones I have from my CF doctor - and have little clue about what I'm looking at and what it means. I never received results from my ID doc so will request those to compare. My last one in April says "rare WBC's, few epithelial cells, moderate gram positive cocci, moderate gram positive bacilli, few gram negative bacilli, usual oropharyngeal flora, no acid-fast bacilli seen. Only difference between that and the one I have from June 2016 is that the 2016 one says "usual oropharyngeal flora - heavy growth. The earliest one I have was from 4/2016 which didn't see any WBC's and says "moderate gram positive bacilli". I have an appointment with my ID doc next month and will put these in front of him along with the ones he has taken that I will get and ask him what all this means. So glad you were paying attention and caught the new bacteria!

To Katherine - I have learned a great deal by your particular situation of sputum results. My question is: how long was it between the time you received the actual test results showing the 3 new bacteria, and the time you began to feel very sick? Pamela

@pamelasc1, Pamela .. for me .. the reason I requested the report was BECAUSE I was so ill. I NOW know to stay on top of the reports .. request them more frequently .. AND question any words on them that I do not understand. ie .. I just did and emailed that there was one that had FIRST appeared 10/14 .. and now 5/17 showed "Few" meaning Few Colonies .. AND asking if/when it should be treated? I am NOT a doctor to be deciding if/when something should be treated but I have certainly learned to ask more questions .. the hard way. Do NOT want to alarm our Connect Members .. just educate them to advocate for themselves better than I did in the past! (sometimes the "Mentor" has not follow her own lessons!) Hugs to all! Katherine

Katherine, this site has given information we never knew we needed. Thank
God, you, Colleen, our members, and Mayo for it. It gives so much peace of mind,
advice, and comfort.
 

KATHRINE, My sputum report from this February had pseudomonus and my doctor did not inform me i saw it when the lab released it. When i asked about it they said they wouldnt treat it. So i sent him the research i had found. It took them 3 weeks before they decided to treat it with cipro. I waited another week because they called it in to mail order pharmacy. I mentioned to the form on march 14th that i was pleading with the doc to treat this and your reply to me was not to plead with my doc because the pseudomonus was normal and they dont always treat it. That cipro did not help. We were going through the same thing at the same time. They won't order another sputum culture. I did have a ct scan on May 15 . I brought with me my previous ones to give to the person doing my test and i reqested a copy of my new scan and report. They would not have a report til the next day. I saw my dr immediately following and he was looking at my scan and said there was improvement. So that was good news. But when i got the report the next day it was worse. There were more nodules, bigger nodules and swollen lymphnodes. He neglected to mention any of this. He is not monitering anything while im taking the 3 antibiotcs. My last sputum test was in Feb. and taking the cipro for the pseudomonus was a waist of time. So frustrated and so sad!
Becky

@chinasmom .. Becky I can ONLY speak from personal experience. When testing was done for my Pseudomonas .. it came back that the prescription I was given for Cipro was a TOTAL waste of time as my Pseudomonas was "RESISTANT" to CIPRO!! Becky, I would suggest you do your OWN research. I did my OWN because I got so very sick. I am now on 28 days of inhaled Tobramycin .. off 28 days .. for 3 cycles for a total of 6 months. I am NOT a doctor .. all I can say is I have learned from my personal experience that I was NOT my own BEST advocate .. DESPITE telling all of you to do so! So Becky .. educate yourself .. make SURE you have a GOOD Infectious Disease doctor who will LISTEN to your concerns .. discuss your concerns with you UNTIL you understand WHY/WHEN you will/will NOT receive treatment for the Pseudomonas .. if THAT happens .. THEN let go .. relax .. do all you can to be healthy and HAPPY! Hugs to you! Katherine

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Becky .. some of my notes:
**Dr. Aksamit said that Pseudomonas Aeruginosa can be treated but like MAC cannot be cured. In my case that the Pseudomonas Aeruginosa bacteria had probably been in my lungs long before it showed up on my 11/9/16 report but just like MAC shows up on a culture report from "MAC FEW" to "MANY" to "COLONIES" (depends on where in the lungs that particular sputum culture came from!) the Pseudomonas Aeruginosa bacteria is the same. The Pseudomonas Aeruginosa can lay low until it shows up enough in a culture to be considered "PROMINENT" and should be treated.

**The effect of Pseudomonas aeruginosa on pulmonary function in patients with bronchiectasis http://erj.ersjournals.com/content/28/5/974 It is not known whether infection by P. aeruginosa is a marker of disease severity or contributes to disease progression. Although P. aeruginosa can be isolated intermittently in bronchiectasis, once it becomes a chronic infection it is rarely eradicated, despite intensive intravenous antibiotic therapy 1, 9. Chronic infection is associated with more extensive lung disease and more severe airflow obstruction 10, but it is not known whether P. aeruginosa is simply a marker of severe disease that has occurred due to another cause or whether it contributes to disease progression. ** However, in bronchiectasis, the severity of the airflow obstruction is not as severe as seen in COPD, where cases usually have FEV1 <30% pred. P. aeruginosa has a high affinity for mucus, and it is possible that impairment of mucociliary clearance and cough clearance, which occurs in bronchiectatic airways due to mucus hypersecretion, increased mucus viscosity and loss of cilia, predisposes to the colonisation 2. Another possible factor is antibiotic treatment, which may be given more frequently in bronchiectasis and drive the airway bacterial flora towards the more antibiotic-resistant P. aeruginosa.

**
http://www.medicinenet.com/script/main/art.asp?articlekey=20161
Pseudomonas aeruginosa has become an important cause of gram-negative infection, especially in patients with compromised host defense mechanisms. It is the most common pathogen isolated from patients who have been hospitalized longer than 1 week, and it is a frequent cause of nosocomial infections. Pseudomonal infections are complicated and can be life-threatening. Signs and symptoms Pseudomonal infections can involve the following parts of the body, with corresponding symptoms and signs: Respiratory tract (eg, pneumonia). http://emedicine.medscape.com/article/226748-overview
https://www.cdc.gov/hai/organisms/pseudomonas.html How are Pseudomonas infections treated? Pseudomonas infections are generally treated with antibiotics. Unfortunately, Pseudomonas infections, like those caused by many other hospital bacteria, are becoming more difficult to treat because of increasing antibiotic resistance. Selecting the right antibiotic usually requires that a specimen from a patient be sent to a laboratory to test to see which antibiotics might still be effective for treating the infection. Multidrug-resistant Pseudomonas can be deadly for patients in critical care. An estimated 51,000 healthcare-associated P. aeruginosa infections occur in the United States each year. More than 6,000 (13%) of these are multidrug-resistant, with roughly 400 deaths per year attributed to these infections. Multidrug-resistant Pseudomonas was given a threat level of serious threat in the CDC AR Threat report.
NOTE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4243435/ ** infection development, P. aeruginosa gradually shifts from an acute virulent pathogen of early infection to a host-adapted pathogen of chronic infection. ** in particular ciprofloxacin, are the most used. However, ciprofloxacin usage is somewhat limited due to the rapid emergence of resistance. As a solution, ciprofloxacin is frequently combined with other antibiotics through other routes of administration. Combination of inhaled colistin or inhaled tobramycin with oral ciprofloxacin has been used successfully. ** The biofilm-lifestyle represents a reservoir of high phenotypic diversity and it is considered one of the most important adaptive mechanisms of P. aeruginosa within sputum. ** Until now, it is not clear what time bacteria after airway colonization switch to sessile lifestyle, but it is known that biofilm formation enables bacteria to successfully establish chronic infections. Presumably, P. aeruginosa form biofilms in response to stressful conditions including microaerophily and/or antibiotic treatments.

http://www.bbc.com/news/health-16645957 Pseudomonas is a common bacteria that's found in soil and water. Because this condition is rare, it may take some time to get a diagnosis. How is it spread? The usual route is through contaminated hands or medical equipment such as catheters and feeding tubes. (or Salt Induced Sputum Cultures?)
While mortality from the infection varies depending on where the infection is, how soon it is treated and the underlying weakness of the patient, some studies suggest a third of infected patients may die. The bacterium appears to have an inbuilt resistance to antibiotics, as well as the ability to mutate into new, even more resistant forms.
It is difficult to treat people with Pseudomonas infections. The bacteria have long been notorious for their resistance to antibiotics. More recently, scientists have discovered that individual Pseudomonas bacteria differ considerably from one another, meaning we are not necessarily fighting a single foe. The bacteria's genetic make-up differs, as does their virulence - their ability to cause disease. Some strains seem particularly good at spreading from one person to another, resisting antibiotics, surviving in the environment, or even causing death. They are also constantly evolving. In this project, researchers are studying the genetic differences between a wide spectrum of different Pseudomonas aeruginosa bacteria. They are identifying and sequencing sets of genes that enable the bacteria to cause serious infections in man, and studying the role of these genes. They aim to emphasise the enormous genetic diversity between different Pseudomonas bacteria by studying strains collected. https://www.action.org.uk/our-research/secrets-superbug-what-makes-pseudomonas-bacteria-so-deadly

Katherine, Thank you for sharing your experience and all of this great information on pseudomonus. i keep saying to myself put your connect away, you have other things you have to do ! So i better do something else for now. Im still working on my appeal to the insurace for medication though I feel like a nap instead. Hope you are having a good day!
Becky

@chinasmom, Becky, I feel the same way .. I tell MYSELF to ignore Connect .. GET THINGS DONE! But truthfully I learn/receive from all of you just as much as I give! Hugs to all! Katherine

@chinasmom,
I think I would look for a new dr. all of that did not sound right to me.