C. Pneumoniae...questions

[lm2]

I just reread the abstract on this site: http://www.ic-network.com/newsroom/v...ilt060601.html

I had seen it before but didn't think too much about it, but now that I have been reading about these kind of bacteria it made me quite nervous. I can't believe it says it's airborne and you can catch it just from someone coughing! How come it's not so common then? Also I can't believe the high numbers found in IC patients. I was asking my doctor a few weeks ago about mycoplasmas, etc. systemically and he said since I have no systemic symptoms not to worry...but I assume not everyone in that study did either?! So is IC a systemic disease, and is it bacterial? I don't have systemic symptoms...but this really worries me. Have their been any follow-up studies in this line of research?

[lm2]

Still concerned ...anyone have a thought on this? 81% is a *really* high number - how did all these people get it? These bacteria must be pretty ubiquitous if so many people tested positive just for the one that they happened to be looking for.

I wonder what this all means. It's so scary not knowing what is going on in my body. And what does this mean in terms of other systemic symptoms. Is this caught the way they mentioned in the article or is it from the genito-urinary tract? And does this mean someone else can catch this from us?

[MelanieJ]

Hi LM,
A good friend of mine who lives in Cincinnati went through the treatment regimine for C. pneumoniae with Dr. Charles Stratton at Vanderbilt (one of the researchers of that study). She has CFIDS/FMS-like symptoms and tested with a high level of C.P. The researchers on this bacteria believe C.P. could be responsible for a number of medical conditions including IC and multiple sclorosis (spelling?). The treatment didn't help her at all. Because of this (and other reasons), I'm fairly skeptical about the bacterial theory. I certainly won't argue if they find that's what causes IC and will be the first to sign up for treatment. But from what I've seen so far, it's just not there.

Also, this is not the same chlamydia disease of the genital tract; it is transmitted in the way that the study describes.

Hope this helps in some way.
Melanie J.

[lm2]

Melanie, thanks so much for your reply. I assumed it was trasmitted the way they described but I think I was hoping it could be the other way because this way would make it appear to be systemic which really scares me...and also so contagious! And what about kissing, etc??? It's just awful. Where are all these people picking up the bacteria from? Do people who carry these bacteria all have symptoms of some sort?

I'm sorry for your friend that it didn't help her. Did your friend have follow up blood tests to see if it was out of her body? Have they published the results anywhere or have there been any follow-ups to the study? I wonder if this maybe is only part of the puzzle and other bacteria are involved as well. I'm curious as to what the researchers are currently thinking about all this.

Sorry for rambling so much...I'm just so confused and scared by all of this. frown

[lm2]

Bumping again...

I'm surprised I'm the only one who worries about this. Maybe it is because most people are married? I suppose if I was married, I could try these things with my husband and if it didn't work at least be able to say at least I'm not walking around with strange bacteria in my body. But as it is, I'm paranoid after reading all these things. Like how will I ever even be able to kiss anyone if these things are so contagious? And I certainly wouldn't want to give this to anyone either.

And I guess I don't think we can write off the bacterial theory just because people don't get better. Maybe there are others that are undiscovered, or the bacteria is just one of a series of things that goes wrong. Or maybe it is just one factor among others that keeps us from getting better. Well regardless, the fact that it's there in such discrepant numbers is enough for me. It's obviously not a coincidence.

I don't even understand how these studies work. It sounds like some people are tested through the blood and some in the bladder.

Am I the only one who finds all this sort of scary?

[sanctuary]

Nope, you're not the only one. I believe there is some truth to your theory. I feel better on antibiotics, but can't take them all the time..I've never had a UTI in my entire life, and have never been prone to vaginal issues either, but since my diagnosis of IC I wonder about this too..Sanctuary

[lm2]

Sanctuary thanks for your reply. I missed it the first time. I am feeling very frustrated and confused as to why I am the only one who seems concerned at all about this (and foolish for writing all this with nobody replying).

I sent my mom the article and asked what she thought and she said maybe the bladder is so damaged that any bacteria that comes in will just stick around. I have already taken so many antibiotics that I'm confident I'm probably ok but I am so paranoid now about coming into contact with something that will prevent me from getting better or if I am better, will cause me to have a relapse.

The sad thing is a few days ago I had a few hours where I felt a speck better and was fantasizing what it would be like to return to the world of the living again...but then I was thinking there's no way I'd feel comfortable kissing or being with anyone new now in light of studies like this. Oh well, I guess I will have to look at it as if I'm ever lucky enough to ever actually experience that, then I will just have to be happy and grateful for what I do have. It seems so unreachable at this point anyway that most of the time I just don't even think about it (but I try to cling to hope).