Have Bronchiectasis, recently diagnosed with pseudomonas

Dear All, 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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**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.

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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

@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

@katemn The
instructions that came with the toby was to never use it in a nebulizer that was
just used for another solution. I have a neb cup that I use ONLY for the
toby. The toby should be last on the nebulizing list (per dr instructions) I
first OPEN lungs with Levabuterol, second -CLEANSE lungs with Saline, last
MEDICATE with Toby. Makes sense, you don&apos;t want to do the Toby and then do a
cleanse and possibly cough up the medicine you just put in there. Also, makes
sense to OPEN your lungs to clean them and then medicate them. Right? As for
sterilizing my neb cups and mouthpieces. I have never done it except by putting
them in the dishwasher. My lazy butt admittedly will use the same mouthpiece
several times before putting into the dishwasher. I do not currently have an
infection, my treatment now is as a prophylactic measure. Hope this info helps.
Terri M.
 

@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

@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

@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&apos;t, I put it in the dishwasher. I plan to
get a bottle sterilizer, just have not yet. 
 

@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.
 

@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!
 

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

Thank you. I will mention it to my dr.