Chances of getting pseudomonas?

Hi Elizabeth! I also had read all the stuff you found out. I am never around pools or hot tubs and had not been hospitalized and was not a gardener. I am terrified of giving it to my husband because he has lung issues from smoking and other exposures years ago when he was young. I feel like a ball of germs and am very aware of anything that could risk spreading this to a loved one. It is really a mystery how I got this. Not sure if there is any connection but about 6-7 years before getting pseudamonas I got severe mono that went into Epstein barr and that permanently damaged my body's ability to keep me warm enough almost all the time. It is awful to be freezing all the time. I am certain that happened from the mono. It did major damage to my body so perhaps thats part of the whole thing.

Thanks Beth & Debra!

I truly appreciate your responses. I've learned so much about BX & pseudomonas from these message boards. I caught MSSA from a bronchoscopy in the ICU ward, so I'm not surprised that hospitals spread these nasty bugs! Ugh.

My MSSA means I'm coughing green/brown sputum every day. (My husband once caught a brief glimpse of what comes out of my lungs, and he's now he's kissing me a lot less often.) My pulmonologist tried to eradicate the MSSA with a variety of antibiotics including rifampin - but nothing worked. I'm wondering if IV antibiotics might have been more helpful... but I also think I should hold off on the antibiotics until I'm hit with a more severe exacerbation.

But what I go through is nothing compared to pseudomonas! I'm consumed by a fear of dirt right now. I avoid gardening - but it's going to be hard to 100% avoid dirt. Does anyone happen to know how one can catch pseudomonas from dirt? Is it a matter of not washing ones hands, or can I catch it walking down a dirt path?

In the meantime, I've been keeping as healthy as I can. Probiotics, manuka honey, exercise and lots of fruits & veggies. Still, I fear it's only a matter of time before pseudomonas catches up with me. I wonder what percentage of BX patients catch pseudomonas - I haven't found any stats on this.

Thanks again to everyone sharing their experiences here! This message board has helped me so much. My heart goes out to all of those bravely battling this disheartening disease.

Shirley

Shirley,

Do you live in the UK? It seems that a lot of people on this forum that have Pseudomonas live in the UK.  I also get the impression that a lot of people live in houses that are older and have issues with mold and dampness.

The only problem that I have had, is that I previously lived in a house that had a lot of trees and I was feeding the birds and squirrels every day. I would clean the  feeders and the ground around the feeder and ended up with a fungus growning in my lungs due to bird droppings.  I now live in a house with only 2 trees and a lot less birds and squirrels and am very careful when I clean the feeders.

I also wear garden gloves when doing yard work. And wash my hands when done (even thuo I was wearing gloves).

On windy days I wear a mask If I'm going to be outside.

I change the air filter on the furnace regularly, have a hepa room air cleaner going in the bedroom and living room at all times.

Also, it helps to keep your immunity up by eating healthy and exercise.

Beth

Hi Beth,

I live in Northern California, but I've also noticed that many people here seem to be from the UK. Like you said, is it living conditions? Older homes? I'm very curious...

You and I have similar BX origin stories ... In 2014 I had chronic pneumonia and life threatening asthma attacks. My pulmonologist had no idea what was going on with me. After six months of increasingly bad health, I ended up in the hospital for three days when finally, my pulmonologist asked "Do you happen to have any birds?" Yes I do!! I had two little parrotlets (mini parrots the size of canaries). He told me not to return home until Butch and Buster found a new home, and that our house was thoroughly cleaned top to bottom. (Thankfully, my husband found them a wonderful new home.) My doctor said that anyone who works with lung function avoids birds at all costs. I wish Butch and Buster came with warning labels!

I was told I had BX, and in my case "Bird Fancier's Lung" (I love 19th century novels, so I found this charming - the only thing even remotely charming about BX.) My doctor ran more tests, including the bronchoscopy. Weeks later, my sputum repeatedly tested positive for MSSA.

I feel like there's a lot of misinformation out there regarding BX. Neither my Kaiser Permanente pulmonologist nor KP infectious disease specialist seemed to understand BX.

Feeling frustrated, I consulted with an highly esteemed IDS outside of KP, and he told me that if I tried to eradicate the MSSA, I would end up killing the good bacteria, leaving an opening for pseudomonas -  and "if I caught pseudomonas, I would be dead by my first cold."  (HOLY COW!!) Looking back, I really don't think he knew what he was talking about - but it definitely scared me. I was ready to crawl into hiding ala "The Boy in the Plastic Bubble" lol.

I'm so incredibly glad I found this forum! I truly appreciate your candid advice. You've all been teaching me ways to hopefully prevent pseudomonas - but if I do catch it, it won't be from any fault of my own. MSSA/BX is challenging enough...

Thanks again!

Shirley,

We moved to Iowa from Northern Indiana a year ago to be closer to our daughters and their family. It's was your good fortune that your doctor asked about your birds.

I get the impression that a lot more people in the UK live in much, much older homes than we do here in the states. And that the homes (cotteges) are made of stone, that keeps in the dampness. I don't know what their safety standards are in the UK, but here, when buying and selling a house, there are inspections, mold and dampness would have to be corrected.  Several people on this forum, in the UK, talked about managing black mold in their homes. Yikes!!

I'm 67, I started having coughing and shortness of breath in my late 30s. I was told then that I had allergies, years later, asthma, then COPD, then 5 yrs ago by way of a CT scan, Bronchiectasis. Bx is starting to get more notice every year. Maybe because it's getting correctly diagnosed. My specialist in Indiana was at a loss and felt he was missing something in my care, so he had me go the the Mayo Clinic. It was there that I was diagnosed with Bx. The doctors here in Des Moines are familiar with Bx.

You will learn about tips on how to manage this illness on this forum. It's very interesting to learn how other people in other countries are treated for Bx. Also, you won't feel alone and can communicate with other people who truely understand.

Take care, Beth

Hi Susanne,

I'm so sorry to hear that you're battling pseudomonas - on top of an autoimmune disorder. And only just months ago! Wow ... do you know what initially caused your chest infection? It turns out my adorable pet parrotlets did me in... so cute, yet so cruel.

Regarding your autoimmune illness - autoimmune diseases seem to run in my family. My grandmother had severe Crohns, my mother had Menieres disease, and my cousin was just diagnosed with Type 1 diabetes & alopecia. I'm wondering if there's a clear connection between BX & autoimmune illnesses?

I feel like we have to be our own detectives with BX!

Hi Shirley

Because of the high doses of steroids I take for my autoimmune illness (Giant Cell Arteritis, you've probably never heard of that one!), my immune system is very compromised, and I'm unable to fight off what to others would be a slight infection. That's how chest infections turn nasty and I end up in hospital. When you have repeated chest infections, it can damage the bronchial tubes and I ended up with bronchiectasis. It really has been a domino effect for me. I have several nodules on my lungs. My respiratory doctor tells me they are caused by the bronchiectasis, but they keep an eye on them with regular CT scans.

I'm so sorry to hear this Susanne. I am still fairly early in my BX stages - but even today I'm worrying about whether to ask for antibiotics or not. A few weeks ago I finished a course of Doxycyline, but within days the purulent sputum, coughing and exhaustion came back. I'm hoping my body will fight it off on its own, but it looks like I may need more antibiotics. I'm very worried about how quickly my MSSA overrides antibiotics - and at this point perhaps I should wait until I'm really sick before taking them again.

My doctor is my doctor - so I'll ultimately go along with what he says. But I worry he doesn't have enough experience with BX.

Take care Susanne!

You bring up a good point. There are some doctors that are not familiar with Bx. A year ago, I moved to a city where there are specialists that are familiar with Bx.

As with you, I like to wait (sometimes too long) to see if my body can fight off the infection, sometimes I do, but other times, I wait too long before going to the doctor for antibiotics. 

Beth

Hi Shirley. The antibiotics you were given may not be able to fight the infection you have right now. Unless you have given a sputum sample when you have the infection, doctors don't know exactly what they are treating and tend to give one they think may be least harmful and cover a wide variety of infections.

When I saw the physiotherapist recently, and she specialises in lung problems, she categorically told me to go to the doctor at the first sign of an infection and if it hadn't cleared up within the week, to go back and ask for a different antibiotic. As she put it, do this or take the risk of ending up in hospital. GPs really should be aware of the risks of an infection developing not something more serious if you have BX.

S x

Thanks Susan and Beth!

I truly appreciate your advice, and I'm taking your heed. I just contacted my doctor, and have a sputum sample ready to drop off at the lab.

I am so thankful to have found this BX community - I felt so alone in this beforehand - but since stumbling onto this forum, I've learned so many positive things. What a blessing the internet can be (at least at times like this.)  I'll keep you posted to let you know what happens

Thanks Beth, I'm glad I'm not the only one!

I still don't feel confident in understanding when to push for antibiotics, and when to pull back. After several attempts to eradicate my MSSA, I was told my colonized MSSA was an "innocent bystander". Yet I think it continues to cause damage - all that coughing up green sputum can't be good!

It seems like I'm always one step behind my infection. Each time I've been on antibiotics, the MSSA always comes back. I wonder if we should have been more aggressive right off the bat - perhaps an IV course ...?

Shirley,

I am not familiar with MSSA, but it sounds alot like Pseudomonas that a lot of people get. And it's very hard to get rid of. Weeks and weeks of antibiotics. Some people can never get rid of it.

Coughing up green mucus is not good. Perhaps an IV course of antibiotics and steriods would help get it under control.

Beth

Hi Beth,

MSSA is the "good" staph - as opposed to MSRA, the staph that's anti-biotic resistant. But so far, my MSSA has also been resistant to antibiotics, so I'm not quite understanding why it's better. Perhaps it's less aggressive?

I'm starting to believe my doctors have been way too passive with my antibiotics. The doses have been ten days, not yet IV. On Monday I'm going to research more specialized doctors in my area.

In the meantime, I truly appreciate your insights and encouragements. Wishing you have a wonderful weekend!