staph infection

[anonymous]

"i don't think i can question the drs though , they know what they are doing surely?"

I am always questioning the doctors. In turn, they take the time to educate me as to why they want to proceed in certain directions. I have found that they have a lot of choices to make and if I learn as much as I can and they offer an explanation we can work together to make the best decisions for my children.

I stopped putting my faith completely in them when my daughter was 7 months old. She had been vomiting daily and on a feeding tube for 3 months because of her refusal to eat when I finally had enough and begged her doctors to do more testing. They told me from the beginning it was cf related and just reflux. Our lives were just a mess as she couldn't hold down her formula. They also told me that it wasn't a milk allergy. Well the testing finally showed it was. We changed formulas and she started eating, stopped throwing up and out came the feeding tube. I learned that I should have spoken up in the beginning but I thought that 3 different doctors all had to know what they were talking about. Since then I know look at my role as being 50% in making decisions about what medications, etc. for my kids to be on. Their doctors are very happy to discuss things and listen to my concerns, thankfully. If I left all of the decisions up to them, I am not sure if my kids would be on any preventative treatments (cpt/vest, pulmozyme, hypertonic saline, mucomyst, DHA, oral GSH, magnesium, probotics).

I would definitely want more info from the doctor about why to proceed with two years of antibiotics for staph. Both of my kids culture one bacteria - staph. That is the only bacteria my daughter has cultured and she now routinely cultures it. Her doctor does not want to treat it. I know it can't be good for her lungs, but I have also heard about it keeping PA out.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[coltsfan715]

KrazyKat,
Thank you for the nice comment. I appreciate it.

Marcy,
I culture PA and Staph/MRSA on a regular basis and have for about 7 years now. I have come to notice a trend in my symptoms and cultures. When I start to notice a gunkier cough, feeling nauseous, have more crackles and such when I breath, fevers and just feel overall rundown with decreased PFTs I normally end up hearing from the doc that the Staph is growing out of control in my cultures. When I have just an increased cough (not necessarily increased sputum), decreased appetite (no nausea) decreased PFTS and my cultures come back it normally shows an overgrowth of PA.

That is just me. I do not get many symptoms with PA.
Also to add I do not get treated for MRSA/Staph on a regular basis, but I used too. Since I have stopped getting regular treatment my PFTs have dropped drastically (20% in roughly 3 years - when before I had held strong and stayed at the same % for almost a decade).

It is all in how each persons body handles it I think. If you feel fine and don't have any major problems then you are probably fine.

To add though: ANY bacteria you have in your lungs will do some damage. It is just a matter of what kind, how severe and how much. I don't know how each bacteria differs in the damage it causes, but bacteria in your lungs in general is not a good thing at least not the Staph/MRSA, PA, Cepacia kind of bacteria we are talking about lol. I wasn't trying to freak you out with my other post about it (that is assuming that I did).

Sorry again for the somewhat lengthy post. I just wanted to say that for Marcy's sake because I thought I had maybe freaked her out or made her doubt her docs approach to her care and that wasn't my intention.

Have a good one,
Lindsey

GO COLTS!!!!

 

[my65roses4me]

<span style=" font-size: x-small;">Lindsey may I ask where you
from. I am just curious. I have a feeling we go to the same Dr's. I
am in California.<br>
Khristina 31yr old cfer

 

[coltsfan715]

I am in NorthEast Florida - I have always been here. I am actually in the middle of changing docs also. I have been going to a pulmonologist for 3 years and am in the process of switching to a new Adult CF Center that is opening in my town.

Lindsey

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>

ANY bacteria you have in your lungs will do some damage. It is just a matter of what kind, how severe and how much. I don't know how each bacteria differs in the damage it causes, but bacteria in your lungs in general is not a good thing at least not the Staph/MRSA, PA, Cepacia kind of bacteria we are talking about lol. I wasn't trying to freak you out with my other post about it (that is assuming that I did).


</end quote></div>

we all have "normal flora" in our lungs. so the statement of "any bacteria in your lungs will do some damage" is very inaccurate.

you did mention Staph/MRSA, PA, Cepacia, so I think you went on to clarify.

some people are silent carriers of bacteria, as Jen has mentioned in the past. they are symtpomless and the bacteria lay dormant. these are typically people who have no co-morbidies... not us CF patients.

just wanted to clarify for educational purposes. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[amber682]

I hope it's ok to butt in here with a question, maybe someone can answer this for me. I'm a little confused about the staph/mrsa thing. Can staph turn into mrsa (by becoming resistant), or would you have to actually pick up mrsa? If you were treated for staph often and it became resistant to meds, would it be considered mrsa? Sorry for butting in on your thread Janet<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[coltsfan715]

Yeah Amy I know that not all bacteria is bad I was just referring to the ones we culture and are always trying to eradicate .. like the ones I listed and I know there are many others that people on this site culture regularly that make the breathing situation a bit more difficult.

I just meant ANY of the nasty bugs that we culture (PA, MRSA, Staph, Cepacia, Asperigillus (sp?) and so on).. can do damage.

Thank you for clarifying though.

Lindsey

 

[anonymous]

hi again, I was the "anon" who is also from the UK and said that staph has caused problems for me... I am 22, been waiting for a transplant for 18 months now. Please dont be alarmed however, I always had big issues with inflammation as well (not staph related) but I do think that it is worth keeping an eye on staph, just in case it is causing problems which might otherwise be assumed to be underlying pseudo, as mine often was thought to be. Stay smiley<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Marcy]

Ok-so what do you guys suggest- I culture staff and I dont want to
sit back and let damage happen to my lungs if I can help it-I
always have a very low grade fever (99.7), I always have colored
spew-, I cough my head off mostly morning and night-I go on and off
feeling run down, I feel ok more then run down.  My PFTs are
low, but I am not sure where they are in the past 6 months, my Dr
doesnt want me to do them right now because I always get so
stressed out and make my self sick over them.  He said I would
be better off to take a break. (I watched my Mom do this and now
she has passed-it is horrible for me). Let me know if you all think
I should just continue as though this is my base line or if there
is something I could do. I have a hard time relying on Drs.

 

[NoExcuses]

Do you colonize PA, Marcy?

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>

I hope it's ok to butt in here with a question, maybe someone can answer this for me. I'm a little confused about the staph/mrsa thing. Can staph turn into mrsa (by becoming resistant), or would you have to actually pick up mrsa? If you were treated for staph often and it became resistant to meds, would it be considered mrsa? Sorry for butting in on your thread Janet<img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

You can pick up MRSA on it's own.

Your Staph can also turn into MRSA through consistant use of antibiotics.

Resistant staph would be considered MRSA only if it was methacilin resistant.

 

[amber682]

Thanks Amy! I was hoping you'd see my question.