Re:OT- Interesting C Diff info

[Guest guest]

Jodi,

Thanks for the great info re C Diff.

I had heard of fecal transplant before, which apparently is very

successful. Did your doctor say if there is any place in the U.S. that

performs the procedure? As best I've determined, there is a place in

Australia and Canada. If you come up with any further info on that

please share.

Sally

[Guest guest]

Jodi,

Do you have more details on the pulsing aspect of the Vanco treatment

for C diff?

My son's GI had us consult with his new partner, who is supposedly a C

diff expert, back in Dec 08. He had Mark take Vanco - four 125mg

capsules per day for two months (since he said spores can live for 60

days), and is now tapering him one capsule per day for two months each

(so in other words, now he's doing 3/day for two months, then will 2/day

for two months, etc.) And we do Genova stool test monthly to make sure

we get negative results indicating, according to him, that if the C diff

stays " away " at lowering doses, it will hopefully stay away when Mark's

completely off. To me this is " tapering " , not " pulsing " , and I wonder

if it's really effectively treating the spores. I thought the spores

could go into " hiding " and then come out when the treatment stops - thus

the pulsing catches them off guard so to speak.

Any thoughts or addl info on this aspect?

Thank you.

Sally

[Guest guest]

Hi Sally..

I can ask my doc next time I see him about where he sends patients to do Fecal

Transplantation. You could email me off-list and tell me where you live and I

could get info for you as well.

I think you are right- this to me sounds like tapering and not pulsing. My GI

was clear that Vanco still works but -sometimes- needs to be pulsed. From what

I understood pulsing means is like " switching it up " and not giving normal

dosages every day at the same time. He also carefully monitors his pulsing

patients. He explained to me that the C Diff can go away and even come back

years later with a flare.

I don't have more info about the specifics of how he pulses because we are

dealing with more pressing issues right now and I am not in the midst of a

flare.

Do you know how many strains for C Diff Genova tests for?

Do they test for Clostridium Sordelli as well?

I have not looked into this yet.

My doc was also adamant about needing to do proper purges with stool testing-

what a proper purge is I have to ask him about.

Sorry for being so vague, I don't have more info it's just most of my time with

him was dedicated to my immediate struggles with Pancreatitis (if it was that in

the first place or prompted by small bowel issues) and figuring all of that out.

You could email me a list of general questions I can be sure to ask him about it

in a couple of weeks.

How is Mark with S Boulardii?

GI puts everyone with C Diff issues on S Boulardii.

I think there are some prescription ones or something like that?

Jodi

[Guest guest]

Hi Sally..

I can ask my doc next time I see him about where he sends patients to do Fecal

Transplantation. You could email me off-list and tell me where you live and I

could get info for you as well.

I think you are right- this to me sounds like tapering and not pulsing. My GI

was clear that Vanco still works but -sometimes- needs to be pulsed. From what

I understood pulsing means is like " switching it up " and not giving normal

dosages every day at the same time. He also carefully monitors his pulsing

patients. He explained to me that the C Diff can go away and even come back

years later with a flare.

I don't have more info about the specifics of how he pulses because we are

dealing with more pressing issues right now and I am not in the midst of a

flare.

Do you know how many strains for C Diff Genova tests for?

Do they test for Clostridium Sordelli as well?

I have not looked into this yet.

My doc was also adamant about needing to do proper purges with stool testing-

what a proper purge is I have to ask him about.

Sorry for being so vague, I don't have more info it's just most of my time with

him was dedicated to my immediate struggles with Pancreatitis (if it was that in

the first place or prompted by small bowel issues) and figuring all of that out.

You could email me a list of general questions I can be sure to ask him about it

in a couple of weeks.

How is Mark with S Boulardii?

GI puts everyone with C Diff issues on S Boulardii.

I think there are some prescription ones or something like that?

Jodi

[Guest guest]

> Hi Sally..

>

> I can ask my doc next time I see him about where he sends patients

> to do Fecal Transplantation. You could email me off-list and tell

> me where you live and I could get info for you as well.

>

> I think you are right- this to me sounds like tapering and not

> pulsing. My GI was clear that Vanco still works but -sometimes-

> needs to be pulsed. From what I understood pulsing means is like

> " switching it up " and not giving normal dosages every day at the

> same time. He also carefully monitors his pulsing patients.

I thought you pulsed with two antibiotics - one for a few days - then

miss a day, then give the other

one, then back to the first one, etc. No?

Mara

[Guest guest]

> Hi Sally..

>

> I can ask my doc next time I see him about where he sends patients

> to do Fecal Transplantation. You could email me off-list and tell

> me where you live and I could get info for you as well.

>

> I think you are right- this to me sounds like tapering and not

> pulsing. My GI was clear that Vanco still works but -sometimes-

> needs to be pulsed. From what I understood pulsing means is like

> " switching it up " and not giving normal dosages every day at the

> same time. He also carefully monitors his pulsing patients.

I thought you pulsed with two antibiotics - one for a few days - then

miss a day, then give the other

one, then back to the first one, etc. No?

Mara

[Guest guest]

> Jodi,

>

> I thought the spores

> could go into " hiding " and then come out when the treatment stops -

> thus

> the pulsing catches them off guard so to speak.

Yeah, that's correct.

Mara

[Guest guest]

Hi Mara,

Not necessarily. I think you may think this way due to many people treating C

Diff take two different antibiotics. Typically Flagyl (anti-bacterial) and

Cipro (fluoroquinolones).

Some Lyme people pulse too and for certain Co-infections with Lyme different

antibiotics need to be used at the same time- depending on which Co-infection is

present by usage of test results and clinical evaluation.

Pulse just means they kind of " mix it up " by switching the course of treatment-

meaning the conventional way to take antibitics is X amount of times in a

certain day at breakfast or whatever and make sure to take it on time. With

pulse it's more like you take it X days and stop and resume. Or skipping days or

skipping every couple of days. Really depends on the issue and physician.

Jodi

> I thought you pulsed with two antibiotics - one for a few days - then

> miss a day, then give the other

> one, then back to the first one, etc. No?

>

> Mara

>

[Guest guest]

Jodi,

I found some info on pulsing in the link you'd originally sent. I

finally made the time to get through it all today. Great info. Thank you

so much for sharing!

This was noted in response to question about treating recurrent C diff.

What I go to after the first recurrence, into the second recurrence,

would be the pulsed/taper regimen that is used. Again, I taper very

quickly. It’s very, very

expensive therapy. I taper down to a low dose and then typically pulse

every 3 days, stretch it out

to every tenth day and then discontinue. I think that’s still the

current best way to treat the

infection for recurrent disease.

I wouldn't necessarily follow this advice blindly, but it's definitely

something for someone dealing with C diff to ask their doctor about.

Sally