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I posted this on the moms groups ....but thought this was worth

posting here too. These are obviously just my observations and may not

apply to many/any here but thought I should share.

Please correct me if I am wrong in quoting you Traci !!

I know Traci has said that in order to be in the Stanford trial of

vancomycin for treating PSC you need to be in the earlier stages of

PSC. I personally don't see any harm in asking your child's own

physicians to prescribe it especially if your kids have signs that

they could have now or have had at some point a bacterial cause for

their colitis/IBD or PSC. I know Traci has said that they are

launching a study to determine the bacteria that causes PSC right ? If

vancomycin is succesful in treating PSC then it makes sense to me that

since vancomycin in the capsule/powder form is indicated for according

to the rx insert " treatment of enterocolitiscaused by staphyloccocus

aureus(including methicillin-resistant strains) and

antibiotic-associated pseudomebranous colitis caused by clostridium

difficile "

" capsules must be given orally for these indications "

When I was recently diagnosed with c diff and treated with vancomycin-

vancocin HCL (vancomycin hydrochloride capsules, USP) I saw a huge

improvement in some very long term symptoms I have been having. I saw

an infectious disease dr because I have had infected hematomas and

abdominal abscesses after my recent surgery and then c diff. I wanted

to see if I had some type of chronic/recurring c diff problem that has

cause my IBD and liver problems (I have not been diagnosed w/ PSC but

had stage 3 bridging fibrosis on biopsy)

I am now a HUGE fan of vancomycin and am very excited for the prospect

of it helping Braden when we start it today for him.

I really think it could help all kids here who have signs that they

could have c diff induced colitis. When I had my recent stool

testing...sorry TMI it seems when y0ou are talking about yourself vs

your kids...they found red and white cells and were quite certain it

was c diff before the cultures came back positive.

I have found that the tricky thing about c diff is that it is

'everywhere' can live for a very long time in places..especially

hospitals, is often never treated because it goes away or partly goes

away on it's own or the source of chronic problems is never identified.

Another treatment for c diff is probiotics that can take longer - even

up to a year to see results from, so it makes sense to me that

aggressive probiotic treatments can only help too.

The comforting thing to me about vancomycin is that it is not absorbed

systemically and is specific to the gut and since it targets gram

positive (bad) bacteria and not all of the good and bad bacteria in

the gut seems quite safe to use.

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

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A clarification - gram positive/negative bacteria simply respond to a dye

differently; there are " bad " bacteria in both groups. Gram-negative bacteria

include Salmonella, Meningitis, E-coli, Gonorrhoeae, Pseudomonas, etc. Some

gram-positive bacteria are Listeria, Staphylococcus, Streptococcus,

Enterococcus, and Clostridium.

ANY antibiotic will upset the natural flora/fauna population of the gut. We

alway supplement our animals with a probiotic if we have to use an antibiotic.

You might be interested in these articles on probiotics:

http://www.timesonline.co.uk/tol/life_and_style/health/features/article5109777.e\

ce

http://news.bbc.co.uk/1/hi/health/7708895.stm

Vancomycin is not a panacea, and should be used with respect. It is a powerful

drug and may have significant side effects (permanent hearing loss, severe

allergic reactions).

As I've said before, EVERY drug has risks associated with it - the goal is to

assure the benefit of taking them greatly exceeds the risk.

Arne

---- wildwildtrips clwild1@...> wrote:

=============

.... The comforting thing to me about vancomycin is that it is not absorbed

systemically and is specific to the gut and since it targets gram

positive (bad) bacteria and not all of the good and bad bacteria in

the gut seems quite safe to use.

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Arne-

I totally agree with using any antibiotic with caution and only when

indicated. We also use culturelle probiotics every day for Braden.

the side affects that you quoted for vancomycin are for the IV form

when administered in IV form ( ie not when the IV (liquid) drug is

given orally) and not when the capsules are taken orally. The capsule

form of vancomycin is not systemically absorbed and targets just the

gut. I had a long discussion with my son's GI and a very well

respected infectious disease dr about vancomycin and for us at least

the potential benefits from using are huge.

I guess I didn't clarify what I was trying to say very well and I know

many antibiotics (not vancomycin) target the beneficial and harmful

bacteria the same but I know the oral vancomycin targets 2 specific

gram + bacteria.

Lori

lucky mom blessed with triplets

>

> =============

> ... The comforting thing to me about vancomycin is that it is not

absorbed

> systemically and is specific to the gut and since it targets gram

> positive (bad) bacteria and not all of the good and bad bacteria in

> the gut seems quite safe to use.

>

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Arne-

I totally agree with using any antibiotic with caution and only when

indicated. We also use culturelle probiotics every day for Braden.

the side affects that you quoted for vancomycin are for the IV form

when administered in IV form ( ie not when the IV (liquid) drug is

given orally) and not when the capsules are taken orally. The capsule

form of vancomycin is not systemically absorbed and targets just the

gut. I had a long discussion with my son's GI and a very well

respected infectious disease dr about vancomycin and for us at least

the potential benefits from using are huge.

I guess I didn't clarify what I was trying to say very well and I know

many antibiotics (not vancomycin) target the beneficial and harmful

bacteria the same but I know the oral vancomycin targets 2 specific

gram + bacteria.

Lori

lucky mom blessed with triplets

>

> =============

> ... The comforting thing to me about vancomycin is that it is not

absorbed

> systemically and is specific to the gut and since it targets gram

> positive (bad) bacteria and not all of the good and bad bacteria in

> the gut seems quite safe to use.

>

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Where can I get more information on this trial?

Is there a link that you can send me?

Thank you

>

> I posted this on the moms groups ....but thought this was worth

> posting here too. These are obviously just my observations and may

not

> apply to many/any here but thought I should share.

>

> Please correct me if I am wrong in quoting you Traci !!

>

> I know Traci has said that in order to be in the Stanford trial of

> vancomycin for treating PSC you need to be in the earlier stages of

> PSC. I personally don't see any harm in asking your child's own

> physicians to prescribe it especially if your kids have signs that

> they could have now or have had at some point a bacterial cause for

> their colitis/IBD or PSC. I know Traci has said that they are

> launching a study to determine the bacteria that causes PSC right ?

If

> vancomycin is succesful in treating PSC then it makes sense to me

that

> since vancomycin in the capsule/powder form is indicated for

according

> to the rx insert " treatment of enterocolitiscaused by

staphyloccocus

> aureus(including methicillin-resistant strains) and

> antibiotic-associated pseudomebranous colitis caused by clostridium

> difficile "

>

> " capsules must be given orally for these indications "

>

> When I was recently diagnosed with c diff and treated with

vancomycin-

> vancocin HCL (vancomycin hydrochloride capsules, USP) I saw a huge

> improvement in some very long term symptoms I have been having. I

saw

> an infectious disease dr because I have had infected hematomas and

> abdominal abscesses after my recent surgery and then c diff. I

wanted

> to see if I had some type of chronic/recurring c diff problem that

has

> cause my IBD and liver problems (I have not been diagnosed w/ PSC

but

> had stage 3 bridging fibrosis on biopsy)

>

> I am now a HUGE fan of vancomycin and am very excited for the

prospect

> of it helping Braden when we start it today for him.

> I really think it could help all kids here who have signs that they

> could have c diff induced colitis. When I had my recent stool

> testing...sorry TMI it seems when y0ou are talking about yourself vs

> your kids...they found red and white cells and were quite certain it

> was c diff before the cultures came back positive.

> I have found that the tricky thing about c diff is that it is

> 'everywhere' can live for a very long time in places..especially

> hospitals, is often never treated because it goes away or partly

goes

> away on it's own or the source of chronic problems is never

identified.

>

> Another treatment for c diff is probiotics that can take longer -

even

> up to a year to see results from, so it makes sense to me that

> aggressive probiotic treatments can only help too.

> The comforting thing to me about vancomycin is that it is not

absorbed

> systemically and is specific to the gut and since it targets gram

> positive (bad) bacteria and not all of the good and bad bacteria in

> the gut seems quite safe to use.

>

> Lori

> lucky mom blessed with triplets

> www.caringbridge.org/visit/bradenwild

>

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Hi " rcurrier1 " ;

As I understand it the vancomycin study at Stanford University is

restricted to children and adolescents:

Davies YK, KM, Abdullah BA, Safta A, Terry AB, KL 2008 Long-

term treatment of primary sclerosing cholangitis in children with

oral vancomycin: an immunomodulating antibiotic. J. Pediatr.

Gastroenterol. Nutr. 47: 61-67.

http://www.ncbi.nlm.nih.gov/pubmed/18607270

However, PSC Partners Seeking a Cure will have an announcement about

a new vancomycin trial in adult PSC patients soon. Please keep an eye

open for this announcement; we'll try to post this on the PSC

Partners Seeking a Cure web site (www.pscpartners.org) and the

newsletter as soon as it becomes available.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

>

> Where can I get more information on this trial?

> Is there a link that you can send me?

>

> Thank you

>

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Thanks !

Subject: Re: my thoughts on vancomycinTo: Date: Wednesday, November 12, 2008, 3:39 PM

Hi "rcurrier1";As I understand it the vancomycin study at Stanford University is restricted to children and adolescents:Davies YK, KM, Abdullah BA, Safta A, Terry AB, KL 2008 Long-term treatment of primary sclerosing cholangitis in children with oral vancomycin: an immunomodulating antibiotic. J. Pediatr. Gastroenterol. Nutr. 47: 61-67. http://www.ncbi. nlm.nih.gov/ pubmed/18607270However, PSC Partners Seeking a Cure will have an announcement about a new vancomycin trial in adult PSC patients soon. Please keep an eye open for this announcement; we'll try to post this on the PSC Partners Seeking a Cure web site (www.pscpartners. org) and the newsletter as soon as it becomes available.Best regards,Dave (father of (23); PSC 07/03; UC 08/03)>> Where can I get more information on this trial?> Is there a link that you can send me?> > Thank you>

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