ME versus DAN doc on clostridia and treatment - please help.

[Guest guest]

Ok I questioned the DAN doc about Gavin truely having clostridia

since he didn't have the typical symptom of diarrhea. I also told

her the culturelle Lactobacillus GG she prescribed was not SCD legal

and that others here use s. bouldarii. I wanted to list her reply

in the hopes that someone could help me determine what is best for

my child. She actually wrote me a letter to help me clarify: Sorry

it's a little long

" There are many types of Clostridia. Obviously the one that most

people are telling you about is clostridia dificile, which does

indeed cause diarrhea. THIS IS NOT THE TYPE OF CLOSTRIDIA ABOUT

WHICH WE ARE SPEAKING REGARDING GAVIN. Clostridia is a generalized

name of a genus of soil organisms. Gavin has one of the more mild-

mannered forms - not as bad as dificile. All clostridia are

obligate anerobes and cannot be easily cultured.

It is Dr. Shaw, director of Great Plains Laboratory, who

first made the connection between DHPPA, clostridia and behavior

problems. He first found that DHPPA was an indicator of soil based,

toxin producing anerobes (eg clostridia), and that when DHPPA was

elevated (GAVIN's is) there were behavior problems. He searched, as

have I, for several years to find ways to reduce the clostridia

population and thereby reduce the DHPPA. The ONLY thing he ever

found is the Lactobacillus GG.

After a child with elevated DHPPA is given Lactobacillus GG the

levels of that organic acid in the urine drop, and behavior

improves. If it is stopped in just a few months, the DHPPA rise and

behavior will worsen again. He has tested this again and again for

years.

So you see, this has nothing to do with diarreha, and nothing to do

with clostridia dificile. I opt for the Culturelle because it is

Lactobacillus GG and has only about 15 parts per million of casein,

as opposed to the other formulations of it.

You have several choices: find a Lactobacillus GG product that has

less 15 ppm of caseine and use that, leave the DHPPA untreated OR

decide the 15 ppm of casein is not going to be that damaging and try

the Culturelle. "

The guy at Kirkman's also told me that the GG has inulin in it which

is a disacaride (sp- sorry). I'm torn!!!! The sugar will feed what

ever is going on in his gut. The gluten and casein sensitivities

are caused by the messed up gut..... The tests however show no leaky

gut or yeast..... He obviously has bacteria due to inconsistent pooh-

mostly constipation lately..and the " clostridia " ....UUGGHH

I know lots here use s.boulardii, but from what I hear they have

dificile and Gavin doesn't. Kirkman's guy said they have another

product like GG, but it has multiple strains of probiotic while the

GG only has one. I don't know how to figure this out. My brain is

spinning!!! I am tempted to try the GG and see what happens. The

clostridia may be the main bacteria causing havoc on my kid and

since it is the only bacteria that doesn't respond to " starving it

out " as the SCD does with others, I feel I have to address it

another way. I think I have confused myself, hope someone here can

make sense of my mess. Thank you for any clarity anyone tries to

impose!!!!

Becky

3yold, ASD

SCD 2 months