[BEGLET]

9 Years ago I got PN - after extensive testing, bipsies, etc. they decided it was genetice as does not respond to high dose IVIG - did have a positive amyloid biopsy, then got negative, so thats consdidered a "we're not sure" - anyway, I got C-DIfficile 9 years ago and after 6 months of treatment on flagyl and oral vanco (must be oral) - the drugs killled the infction, but also my sensory nerves, and damaged my autonomic system, so able to live only on non-lactose liquid since... I've got it again - dont know how - never take anti-b's nor have I been in the hospital - and spent the last month on vanco (at least not a nuero toxin compared to flagyl) and it did nothing except make me worse.... we're running out of meds here and I'm so underwegight after not being able to eat for so many years this is getting scary.... the doc is having me try Xifaxan - which I believe is being tested for C-Diff infections - and brutal also... have anyone taken this med or heard of it for treatment for this condition?

Help? Anyone have any experiences here?

THanks....

[mrsD]

in long term care. And one colleague of mine took it for his
mystery GI problem for 10 days. He did not say it was "brutal" at all.(and it didn't help him)

Here is the FDA reports on it from PatientsVille site:
http://patientsville.com/medication/...de_effects.htm

I can see they are trying it for C.difficile....there is an
epidemic of this in hospitals now. So the need is great to get
something to help.

I'd say to give it a try. The reports on PatientsVille are rather mixed, and I don't think any "trend" shows. When patients are so sick like that all kinds of other stuff happens too. There are not many reports, there IMO.

Vanco can be absorbed --up to 10% of the dose-- and I think that is how it causes the PN.

Xifaxan has 3% or less.

From my understanding C.difficile is always there. Sometimes in very small amounts, and may rise up if other bacteria in the colon cannot contain its growth.
If your immune system is not working well, then it may rear up again.

[BEGLET]

I'm getting ready to down a dose right now - I rarely take anti-b's - and the vanco made me so sick - had some bad side affefcts (Red man and thrush) my immune systen is way down after a very psically challenging move this summer and then being so underweight from not being able to eat I'm sure I got this from one lost little bug running around a docotrs office - its the only place I"ve been.... will gve it my all!

[mrsD]

Is typically present in everyone's colon. There are always some
hanging in there, but they are kept down by the beneficial
colonies that help us.

Yours might be the original bug...it might have been there
all along.

In nursing homes, and hospitals, contaminated dishes, or
equipment may spread it. But I don't think it is community acquired outside commonly.
It is not pathogenic unless the patient has been compromised by antibiotic use.

http://www.infectioncontroltoday.com...1Clinical.html

There is a newer more virulent form that is antibiotic resistant being found today.

[BEGLET]

what I dont get - I have not been in long term care, in the hospital - or on anti-b's- there is no sources of infection.... but I know just when it started up again, - is it possible to sit for 9 years and raise its ugly head again?

[mrsD]

Say I had pneumonia, and did not go to the hospital.

Say further that I had my RX for antibiotics called in.

I could develop C. diff. just here at home. C. diff is one of those
organisms that is "around"...just not present in enough quantity to cause illness.

In fact if you took a swab of your throat, you'd be amazed what is in that! We did this in microbiology..cultured our own, and identified all the nasty pathogens! Only they were there in very low amounts and not causing illness, because our immune systems were active. Change of immune status may let those nasty bugs, then take hold. Icky isn't it!

C.diff is classed as a noscomial infection. That is only appears when someone is treated for something ELSE. In fact antibiotic treatment does not totally irradicate a germ. It reduces it to very minute levels to where the body should take care of the rest. This is the way that drug resistance occurs.

[BEGLET]

See what you are saying - but this is full blown infetion - I know the day it re=-started arter the 9 yeares couple months aGo - i was veery sick from moveing and AT leaset THyn know they cant use fglagyl but at this rate if doesnt go AWAY its lifE threatenining and the first time left me in wheelchahair and and foodleSS foR 9 years... i havent been able too even keep new med dowh and symtoms gettingn WORESE-MY FIBNGERS ARENT WORING TO TYPE TYPE EVEN WITY JUST ONE FINGER - I GUESS BLOOD COUNT IS SO OFF,-DONT KNOW. DO YOU THINK I SHOULD BE RETESTED?

[mrsD]

I'd get retested ...
diarrhea can come from other things.

The bacteria that live with us in a beneficial way, need
to be fed something. They live down there and perform services for us in return for food.

I was watching Animal Planet yesterday about Moose. It said that the baby moose cannot eat plant material until its GI tract is colonized by organisms provided by the mother, who licks the baby's mouth frequently to introduce them.

Humans are colonized by age 3 with many organisms, in obscure ways. One I know for sure is Oxalobacter spp.
(which is killed off by certain antibiotics--and implicated in formation of kidney stones when gone).

You could have a virus. Many cause diarrhea.

So seeing the doctor would be a good idea.

When you have C.diff. I don't think those treatments kill it off completely anyway. No antibiotic kills every single germ...there are always some left behind. Sinus, bladder, lungs etc. included, too.