Re: Gut bugs and treatment questions

[Guest guest]

Oftentimes the only way to get rid of clostridia is to use Flagyl or

Vancomycin.

You could check into seeing whether the Flagyl would be more

cost effective.

I believe that Dr. McCandless and Dr. Kartzinel said that they no

longer use Nystatin. Diflucan, Sporonox and something else

seemed to be the drugs of choice to get rid of yeast.

They were discussing a protocol of using both antibiotic and

antifungal at the same time. Maybe someone who was taking

notes at the parent round table has the exact recommendations.

If not, I can ask on CSB and see if I get a response there.

Jody

mom to -5 and -7

SCD 15 months

[Guest guest]

Lynn --

My son also suffers from some serious gut bug issues. We have tried

Flagyl for the clostridia, only to have the clostridia go up

immediately AFTER treatment concluded. Vancomycin worked very well,

BUT, again, the clostridia only came back with a vengeance.

So, I finally ditched all of the prescription medicines and started

giving my son Culturelle in very high amounts. It worked like a

charm. He had a 10 for clostridia and within a month of 6-8

Culturelle per day, his clostridia number went down to a 0.4. I then

backed off to about 3-4 per day and only increase it if he seems to

be having difficulty. (I know Culturelle is not SCD legal -- we have

been SCD for 9 months now. We switched to only Lactobacillus

acidophilus, only to have the clostridia reappear. It was back to

Culturelle -- worked like a charm).

Hope this helps.

> Ok, now I'm the one going to post about my STUPIDITY! argh, or the

> lack of recognition of testing. Silly me I thought the dr's were

> looking at the test results they ordered.

>

> That said... A year ago our OAT test showed not only the high

> arabinose I've posted about- 20 times the highest ref range... but

> now in looking it over and researching each High and LOW, he is

very

> high in clostridia too.

>

> A wonderful DAN! dr that we have seen once told me upon my

> remarkable progress report this fall- and after pulling his charts

> and looking them over again- that he should try nystatin and

> vancomyacin might be a good shot too. So, when I go to pick up the

> prescriptions that had been called in and the pharmacist that owns

> the place came to talk to me about the vancomyacin. Tells me that

> compounded as prescribed would cost- i think it was $350, might

have

> only been $150- point is it was a ridiculous amount of money. I

> thought it was a " Maybe it will do something to help " . I didn't

> understand that it kills clostridia well and my son has it. He had

a

> negative result on clostridia deficile testing.

>

> So- obviously my son is only progressing so far because of GUT

bugs.

> Reading a little looks as though lactobacillus will also control

and

> kill clostridia, in high doses.

>

> That said... should i attempt to continue a slow upping of the

> Lactobacillus, or should I talk to the pharmacist about not

> compounding the vancomyacin. Or, is vancomyacin so horrendous that

> it won't go down any other way than compounded (which probably

means

> an illegal sweetner), or is it really that important that we should

> pay no matter what it costs to have it?

>

> Thanks!

> Lynn

> mamapudd@s...

[Guest guest]

Lynn,

Our Clostridia went from 261(September) to 41(March) (reference range

over 150) through the following:

strict SCD

Custom Probiotics l. Acidophilus (6-8 baby scoops 2x/day)

Lauricidin

1 Peptizyde before bed without food

We started this all in November.

We got rid of it without antibiotics.

Hope

> Ok, now I'm the one going to post about my STUPIDITY! argh, or the

> lack of recognition of testing. Silly me I thought the dr's were

> looking at the test results they ordered.

>

> That said... A year ago our OAT test showed not only the high

> arabinose I've posted about- 20 times the highest ref range... but

> now in looking it over and researching each High and LOW, he is very

> high in clostridia too.

>

> A wonderful DAN! dr that we have seen once told me upon my

> remarkable progress report this fall- and after pulling his charts

> and looking them over again- that he should try nystatin and

> vancomyacin might be a good shot too. So, when I go to pick up the

> prescriptions that had been called in and the pharmacist that owns

> the place came to talk to me about the vancomyacin. Tells me that

> compounded as prescribed would cost- i think it was $350, might have

> only been $150- point is it was a ridiculous amount of money. I

> thought it was a " Maybe it will do something to help " . I didn't

> understand that it kills clostridia well and my son has it. He had a

> negative result on clostridia deficile testing.

>

> So- obviously my son is only progressing so far because of GUT bugs.

> Reading a little looks as though lactobacillus will also control and

> kill clostridia, in high doses.

>

> That said... should i attempt to continue a slow upping of the

> Lactobacillus, or should I talk to the pharmacist about not

> compounding the vancomyacin. Or, is vancomyacin so horrendous that

> it won't go down any other way than compounded (which probably means

> an illegal sweetner), or is it really that important that we should

> pay no matter what it costs to have it?

>

> Thanks!

> Lynn

> mamapudd@s...

[Guest guest]

I talked to the pharmacist. It was a $350 prescription for 16 days.

The reason was that it was being made into a liquid, but normally

it's given in the hospital in a drip or shot.

I read some more and looked like lactobacillus- " can " be affective.

Thinking of waiting a bit to see how the lactobacillus affects it

all.

It was Megson that prescribed it and she did vancomycin and nystatin

together. I misunderstood her reasons for the vancomycin since it

was all done over the phone. She and McCandless do a lot of the same

things, so that may be the combination that was mentioned.

Lynn

> Oftentimes the only way to get rid of clostridia is to use Flagyl

or

> Vancomycin.

>

> You could check into seeing whether the Flagyl would be more

> cost effective.

>

> I believe that Dr. McCandless and Dr. Kartzinel said that they no

> longer use Nystatin. Diflucan, Sporonox and something else

> seemed to be the drugs of choice to get rid of yeast.

>

> They were discussing a protocol of using both antibiotic and

> antifungal at the same time. Maybe someone who was taking

> notes at the parent round table has the exact recommendations.

> If not, I can ask on CSB and see if I get a response there.

>

>

> Jody

> mom to -5 and -7

> SCD 15 months

[Guest guest]

It's enough to make me think we can wait and see what the lacto

does. Culturelle was a suggestion, but we were on lactobacillus at

the time and i thought there was no diff. sigh.

learning

mary lynn

> Lynn --

>

> My son also suffers from some serious gut bug issues. We have

tried

> Flagyl for the clostridia, only to have the clostridia go up

> immediately AFTER treatment concluded. Vancomycin worked very

well,

> BUT, again, the clostridia only came back with a vengeance.

>

> So, I finally ditched all of the prescription medicines and

started

> giving my son Culturelle in very high amounts. It worked like a

> charm. He had a 10 for clostridia and within a month of 6-8

> Culturelle per day, his clostridia number went down to a 0.4. I

then

> backed off to about 3-4 per day and only increase it if he seems

to

> be having difficulty. (I know Culturelle is not SCD legal -- we

have

> been SCD for 9 months now. We switched to only Lactobacillus

> acidophilus, only to have the clostridia reappear. It was back to

> Culturelle -- worked like a charm).

>

> Hope this helps.

>

>

[Guest guest]

Not familiar with petizyde- will look it up. I am doing CP up to 4

scoops now. Have lauricidin and wondered about that being done at

the same time.

Jeepers is my son just the highest in all this stuff of what? His

was 396.59 a year ago. wonder what no treatment for a year has done

for that? argh. Same high ref range of 150.

Lynn

PS- Hope is your son non-verbal, i was thinking you said he was? if

not did this treatment help with that?

> > Ok, now I'm the one going to post about my STUPIDITY! argh, or

the

> > lack of recognition of testing. Silly me I thought the dr's were

> > looking at the test results they ordered.

> >

> > That said... A year ago our OAT test showed not only the high

> > arabinose I've posted about- 20 times the highest ref range...

but

> > now in looking it over and researching each High and LOW, he is

very

> > high in clostridia too.

> >

> > A wonderful DAN! dr that we have seen once told me upon my

> > remarkable progress report this fall- and after pulling his

charts

> > and looking them over again- that he should try nystatin and

> > vancomyacin might be a good shot too. So, when I go to pick up

the

> > prescriptions that had been called in and the pharmacist that

owns

> > the place came to talk to me about the vancomyacin. Tells me

that

> > compounded as prescribed would cost- i think it was $350, might

have

> > only been $150- point is it was a ridiculous amount of money. I

> > thought it was a " Maybe it will do something to help " . I didn't

> > understand that it kills clostridia well and my son has it. He

had a

> > negative result on clostridia deficile testing.

> >

> > So- obviously my son is only progressing so far because of GUT

bugs.

> > Reading a little looks as though lactobacillus will also control

and

> > kill clostridia, in high doses.

> >

> > That said... should i attempt to continue a slow upping of the

> > Lactobacillus, or should I talk to the pharmacist about not

> > compounding the vancomyacin. Or, is vancomyacin so horrendous

that

> > it won't go down any other way than compounded (which probably

means

> > an illegal sweetner), or is it really that important that we

should

> > pay no matter what it costs to have it?

> >

> > Thanks!

> > Lynn

> > mamapudd@s...

[Guest guest]

" Jeepers is my son just the highest in all this stuff of what? His

was 396.59 a year ago. "

The last time 's was done, his was 441. I haven't

redone the test in a long time.

When the " lab test " fairy brings me some money, I will re-run the

tests...LOL.

Jody

mom to -5 and -7

SCD 15 months

[Guest guest]

Whew! Glad to be a looser on that one!

You should have seen the look on the pharmacists face when I told

him his numbers.

Lynn

> " Jeepers is my son just the highest in all this stuff of what?

His

> was 396.59 a year ago. "

>

> The last time 's was done, his was 441. I haven't

> redone the test in a long time.

> When the " lab test " fairy brings me some money, I will re-run the

> tests...LOL.

>

>

>

> Jody

> mom to -5 and -7

> SCD 15 months

[Guest guest]

My sons result from great plains was 1396.0 and I did not put the decimal

point in the wrong place..........it was one of the highest numbers they

have seen (clostridia) and we treated with culturelle and in 4 weeks it went

down to 261.

Re: Gut bugs and treatment questions

" Jeepers is my son just the highest in all this stuff of what? His

was 396.59 a year ago. "

The last time 's was done, his was 441. I haven't

redone the test in a long time.

When the " lab test " fairy brings me some money, I will re-run the

tests...LOL.

Jody

mom to -5 and -7

SCD 15 months

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

We used a Vancomycin capsule/pill one time and got it through our regular

pharmacy " Eckerd's " . I crushed it in my stone garlic crusher and mixed it in

pearsauce. Also that sounds really high. Have you checked with other

Compounding Pharmacies? Like Hopewell in NJ or Coastal Compounding in

Savanna, Ga. If you need the phone numbers let me know.

Kathy, Abby-9, ASD, UC, SCD since 2-21-04

> I talked to the pharmacist. It was a $350 prescription for 16 days.

>

>

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

[Guest guest]

I know they are scd illegal but could anyone email me off-list if they have

seen ANY success with primal defense or culturelle IF your child has sky high

clostridia and yeast.

thanks,

sharlene, still struggling w/ jacob 15 months old ...... on & off scd for 7

months.....

[Guest guest]

This is my first post but have been lurking for a week or two and

visited several months ago. We are moving into SCD this weekend as

my son had a level of 696.0 for clostridia. Just wanted you to know

that your son wasn't quite the highest (and boy is that a great

thing). We did a 14 day round of Flagyl along with Nystatin and

Culturelle. Keep us posted on your progress and we will do the

same. My son has been in ABA since Sept. and is doing great but

this gut stuff has to be keeping him from doing any better. We did

GFCF but obviously that just helped the bacteria set up residence.

Thanks to all for your great posts. I have learned so much since

lurking and look forward to learning even more as we go along.

mom to Nicolas 4.5 PDD-NOS and (3-NT) and (1-NT)

> Not familiar with petizyde- will look it up. I am doing CP up to 4

> scoops now. Have lauricidin and wondered about that being done at

> the same time.

>

> Jeepers is my son just the highest in all this stuff of what? His

> was 396.59 a year ago. wonder what no treatment for a year has

done

> for that? argh. Same high ref range of 150.

>

> Lynn

> PS- Hope is your son non-verbal, i was thinking you said he was?

if

> not did this treatment help with that?