Lung bacterias

kmhbeauty

New member
Can someone give me a list of the different bacteria's that a person can culture with CF. Just the main ones please. I am wanting to know the severity of the different things we culture from least severe to worst.
 

Twistofchaos

New member
A couple common CF bacteria would be and I´m sure I´m forgetting a few obvious ones,

Haemophilus influenzae
Staphylococcus aureus
Pseudomonas aeruginosa
Stenotrophomonas maltophilia
Escherichia coli
Burkholderia cepacia

And there's some common fungi like Aspergillus fumigatus.

Severity is tough to say. All of them cause lungdamage and what might be mild and easily treatable for one can do really bad things for another.
Ofcourse some bacteria are more notorious for being hard to treat, doing bad things to our lungs and being a "sign" of advanced lungdamage like Pseudomonas aeruginosa and Burkholderia cepacia but that changes with time and advances with medicine. For example I remember when growing up that whenever someone of our local CF circle caught Pseudomonas that it was regarded a clear sign for "late stage CF" and bad things soon to come but nowadays you can possibly grow to retirement age with it.
 

Ratatosk

Administrator
Staff member
Another one that can cause damage and very difficult to treat is mycobacterium -- not sure of the specific strains, names.
 

Melissa75

Administrator
Another one that can cause damage and very difficult to treat is mycobacterium -- not sure of the specific strains, names.

MAC/MAI - can be slow/indolent or can be more problematic
M. Abscessus - often more pathogenic

Some additional bacteria are:
Streptoccocus pneumoniae
Achromobacter xylosoxidans


This is an interesting article on CF bacteria with pie charts and graphs. It's pretty technical, but I believe you can see from the colorful pie chart that bacteria colonies in Adults with CF are less diverse, possibly due to PA (that I got from the text), and you can see that a lot of bacteria goes unidentified.
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0002908

(I've looked at this stuff a lot in trying to figure out what's the deal/progression with my non-CF bronchiectasis. My bacteria buddy for a few years now has been Strep. The stuff I've had like Pseudo and Steno have thus far been transient. I hope Kalydeco and similar drugs make it so that people with CF can have similar, or better, experience of responding to treatment.)
 

kmhbeauty

New member
Thank you for the answers everyone. Ive only ever cultured staph before. I believe it was Staphylococcus aureus but not totally sure. Just found out awhile back that I did culture Aspergillus but the doctor didn't say anything. I believe in my current culture, the Aspergillus was gone though. I cultured MAC back in March but the doctor said it was possible that it was a contamination in the dish, which happens often. I didn't think anything of it because it was so downplayed. I cultured MAC again and after doing some research, I am positive I have it. I am just wondering if this is something I should be freaking out about or if MAC is something which is not that bad. My fev has been 79 percent for the last couple years. My base about 5 years ago was in the mid 80s. I am going to push myself and try to exercise daily now. Any advive or comments on MAC would help. I was dx at 15, ignored my cf for a long time because I never had any lung problems until the last 7 years of my life. Im 28 now, I would say around 21 or 22, things started to change and the last 3 years have been difficult. I am not as educated on my disease as most of you are. Thanks for your help everyone!
 

CFkitty

New member
Can someone give me a list of the different bacteria's that a person can culture with CF. Just the main ones please. I am wanting to know the severity of the different things we culture from least severe to worst.

The bottom line is that everyone is different. Some people acquire more "severe" infections, some don't. You can also get very sick with a "mild bacteria" and only get mildly sick with a "severe" bacteria.

Some people culture bacteria and don't show symptoms. I have a few friends who culture MRSA but it has never made them sick. I, on the other hand, have MRSA flareups every 6-8 weeks.

In addition, you can culture something one week, and another week, it might not show up. Just like you can have something that never shows up, but makes you sick. It all depends on where the sputum you cough up comes from.

Don't get too focused on what you could get. Just focus on the here and now. Anything can happen, and you can't worry about everything. Take care!
 

4hats

New member
I am currently being treated for MAC with a triple antibiotic cocktail of rifampin, ethambutol and azithromycin. I started the treatment 5 months ago. I have not cultured MAC since I started being treated for it. MAC was making me miserable. It was sapping my energy, I had low grade fevers often and infections often as well . I had a couple of bad bouts of hemoptysis over the previous 12 months ( not sure if it was the MAC or some other bug). We had tried treating the staph, but I kept succumbing to the same symptoms so we made a decision to go after the MAC. The treatment duration is minimum 12 months, or 12 months from when you stop culturing it. You have to give sputum once a month and go for bloodwork monthly to check your liver and kidney levels. You also need to have your eyes checked periodically since the ethambutol can have an effect on your vision. So far, I am tolerating the treatment well (working hard to take care of my body: lots of water, exercise, probiotics, etc....) I wish you success in looking into this.
 

kmhbeauty

New member
4hats, please keep me posted on your progress with this. I have read some things on here where they said the treatment was worse then the disease. It made me scared about the treatment. I too had 6 straight days of coughing up blood. I have never done that before and I went straight to the doctor. I know MAC is for sure sucking the energy out of me. There are some days, I don't even want to move. I was blaming myself for being lazy but now I know its more then that. I havnt had too many infections but I was getting the night sweats before I coughed up blood. Ugh, I feel like im bad luck and I never get a break in life. Just because I have cf, my world doesn't stop. I am barely making it financially and now another added weight to deal with. I just have to push myself and move forward but Im starting to feel broken.
 

MichaelL

New member
I started culturing mycobacterium abscessus in 2008. I think it affects people in different ways -- for some it causes a lot of problems while others function normally. It was giving me problems and caused a drop in my lung function, so I started aggressive treatment including IV meds in March 2011. My strain has been very resistant and I am still on IV meds almost three years later. I had a horrible flare up in August and spent six weeks in the hospital undergoing treatment. I don't want to scare you, but it has been quite a problem for me. Hopefully it won't give you as much trouble.
 

4hats

New member
Kmhbeauty, I understand why you might start to feel broken. Cf in general can do that to us at times, especially those days where you just have no energy as you describe. There were weekends that I would just stay in bed too. MAC was doing a number on me. Since I'm on the treatment, I have more energy, in fact I just ran a half-marathon last month! So, don't give up. Keep pushing yourself. Speak to your doctor and ask him/her to seriously look into treating MAC. They may do a CT scan to check on the progress of MAC. I know the treatment is not tolerated well by many, but for some it is ok. I'm doing ok with it. Let us know how you make out.
 
W

windex125

Guest
My biggest problem for yrs. has been MAC I did the cocktail mentioned above for 6-9 mts. I forget exactly how long. But this was years ago. my right lung is not totaled collasped and does not show up on the xray. Yet I keep going and bouncging back like a rubber band. My PFT's are high 40's I think? Beleive it or not I do not pay attention to the numbers so much, I go day to day and deal with it, as a matter fact I do not even think abt my CF on a daily basis. But there are days when the coughing goes on and on and then I want to pull my lungs out and do a dance on top of them, I know sounds extreme. I will be 59 in a few weeks and just take it one day at a time. Do my meds. It is what it is as the saying goes. Good luck to you and don't panic. Sounds like yr. doing a good job with yr. care. Pat-CF-58
 

occupyjapan

New member
It really depends on a lot of factors. The species of bacteria, the specific strain, the genomovar (for B. cepacia), whatever resistances the bacteria has, how much lung damage you already have, etc.

Pseudomonas is the most common "bad" bacteria. Most people have staph or MRSA; some with severe infections, some with mild to no symptoms. Those are the two most common in adult CF patients. For younger patients, stuff like H. influenzae is more common. Due to the increasing lifespan of CF patients, owing to better treatments, new bugs are becoming more common where they weren't before because CF patients would die so young. Stuff like B. cepacia, MAC/M. Abscessus, Achromobacter, etc.

One of the biggest things for how "bad" an infection is, is what antibiotics the bacteria are sensitive to. You can have a very aggressive, virulent strain of Pseudomonas, but if it's really sensitive to Tobi and Cayston, it's entirely possible to keep it in check. On the flip side, a less virulent strain of bacteria can cause chronic damage if it's resistant to a lot of antibiotics and thus harder to suppress.

Just going on average clinical outcomes, though, here's a rough idea of how "bad", from least "bad" to most "bad" the common bacteria are; these take into account general virulence as well as things like inherent antibiotic resistance and how difficult to treat or suppress they are, etc:

H. influenzae/S. pneuomoniae
MSSA (Methicillin-sensitive Staphylococcus aureus)
Pseudomonas (non-mucoid)
MRSA (Methicillin-resistant Staphylococcus aureus)
Pseudomonas (mucoid)
MAC
B. cepacia (non-genomovar III types)/M. Abscessus (probably about a tie or with M. Abscessus barely winning out as "worse")
B. cepacia (genomovar III)/some of the "new" bacterica (Achromobacter, etc.)
Extensively multi-drug resistant bacteria like Acinetobacter and Stenotrophomonas (both are "new" cf bacteria, but can often be resistant to carbapenems)

I know some people are going to be like "hey! I have B. cepacia and my friend just has MRSA and he's way sicker than me!"; these are just averages and I admit a lot of these are like comparing apples to oranges, but in general, someone that only cultures MSSA is going to be less sick than someone who cultures mucoid pseudomonas, and someone who cultures mucoid pseudomonas is generally going to be less sick than someone who cultures B. cenocepacia (B. cepacia, genomovar III).
 
Top