Probiotics - Should you be questioning them too?
Day in. Day out.

So many things we do the same. Rarely questioning why.

Until something or someone comes along and makes us wonder.

What if?

What if I took the chance I never thought I'd take? Do something I never
thought I'd do?

Would the risk be worth it? Or would everything we've come to rely on crash
down around us?

And still.... sometimes you can't ignore the little voice. Tempting you to
reevaluate your choices. Promising more.

Should I / Shouldn't I?

The temptation came from a friend.  

"You know, I have to tell you Rebecca, of all the fully recovered children I
know, none of them are using probiotics."

She went on.... and I had heard it before. We'd already tried removing
Caroline's probiotic supplements for a short stint earlier this year. At the
first sign of regression however, we fell right back into our comfort zone.

But this friend was not giving up. She knew the payoff could be huge.

"What if the regression was die off?"  

Hmmmmm.... well, for that, I had no answer.  But to try again, to sit back
and watch Caroline regress in hopes that she would emerge even better
was terrifying.  The biomed parents among us know, it's a true test of nerve.  

And they're everywhere.

In the yogurt. The health drinks. The vitamins. The baby food. Probiotics,
once compared to snake oil, are now as mainstream as bottled water... in
fact, there are even bottled waters fortified with probiotic cultures. How
could they be bad?!

The reasons for going without are abundant. Our primary concerns
centered around the polysaccharides and indigestible fibers used to carry
the probiotics to the gut.  
Inulin and InTactic® were used in the brands we
gave Caroline.  
FOS is another name you may recognize.  

These hybrid sugars can't be broken down in the large intestine which
means the probiotics ride along with them, passing through to the gut.   
Research shows that these sugars do promote probiotic growth, but there
is concern that they also foster growth of less desirable bacteria.   

"Some studies have indicated that inulin encourages the growth of
Klebsiella, a bacterium at work in Ankylosing Spondylitis, which causes
problems with intestinal permeability.  It also feeds E. coli and many
Clostridium species, which are inharmonious with gut-friendly bacteria.
There is also a concern that some kinds of yeast are able to use inulin/FOS
for fuel, thereby possibly leading to overactive yeast production in the
body." [
Livestrong]

With our ongoing concerns about OCD and tics caused by bacterial
overgrowth, we needed to see what removal would do.  Perhaps it was the
missing link. The hurdle that was keeping us from being able to remove
the herbs still needed to manage PANS symptoms.  

What about probiotics that don't use any additives?  

I know of one brand. Custom Probiotics. We were using the D-lactate free
formulation. Because they are so pure, I contemplated leaving it in her
supplement regime. However, there are also concerns regarding the
probiotics themselves.

Microbial imbalance. Immune overstimulation. Gene transfer. Fungema.  
Scary topics.  The box to the right contains more information.

Loudly echoing in my head was the question,
Could it be high dose
probiotics, instead of helping, are actually harming our children?  Holding
back true potential?

Decisions

After ignoring my curiosity for months, I could no more.  I needed to leave
the fear behind and withdraw from the status quo in hopes of discovering
new gains and unrealized possibilities.  

First, I eliminated Culturelle. This one went went easily and behavior wise, I
didn't notice much. One product down, three to go.

Later that week, I removed Klaire's Therbiotic Detox Support, followed by
Infant Blend, also from Klaire.   At first, it was difficult to stay the course.  
She had an increase in tics and stims.  In my head, I was running to the
refrigerator, grabbing the bottles and bringing her back to baseline.  

But the baseline wasn't where we needed to be. So, feet firmly planted on the
ground, I remained committed to seeing it through.

When Caroline leveled off, I decided it was time to stop the D Lactate free.  
The Granddaddy of our lineup. She was taking 1 adult dose, 250 billion
cfu's per day.  As I removed it, there were several days with "flares" in
behaviors.

I prayed they were caused by die off of bad bacteria and not overgrowth
due to the removal of the "good guys."  

Prayers answered, within a few days of removing them entirely, it was clear.  
Her anxiety was dissipating. She was calmer, more present. More aware
and less 'always on the go.'

When I visited her first grade classroom as the "mystery reader," it was
obvious how she had changed. She was calmly sitting alongside her
classmates on the rug.  

Looking down at her, she smiled back at me. No longer the ball of nerves she
had been weeks prior. Tears of happiness and pride welled up inside.  We
had done it. We took the risk and we triumphed!

PANS / PANDAS

It's been over 6 weeks without probiotics. In that time, I have removed all of
the herbs she was taking to control PANS.  

Goldenseal, Oil of Oregano, Berberine (from the
Kickin' it Old School blog)
no longer needed. Her tics are completely gone. No more tapping things.  
She has slight remaining OCD, but it's noticeably fading weekly.

Follow your own path

I learned my lesson. I should not have resisted as long as I did. My fear of
going against the norm almost kept me from one of the best decisions I've
made on this journey.

Which brings me here, to encourage you.... if something speaks to you and
you find that you simply can't ignore it, it's quite possibly for a very
important reason. It doesn't always matter what 'everyone else is doing.'

Research, reflect, regroup if you need to. And above all... resist
complacency.

Life is too short for regrets. If we plan to recover our children, we need to
keep placing one foot in front of the other and forging a path toward the
best possible life.   

A life we know is out there. Ours to live. Just as long as we're not afraid to
listen to the voice telling us it IS possible to truly find more.


**For an update from us, please also read our post:
Probiotics | An
unexpected cause of my daughter's autoimmune issues
For future blog notifications:

Microbial Imbalance

Different strains of probiotic bacteria vary widely in
their side effects and efficacy, especially in people
whose immune systems are compromised by
illness or age, reports Mary Ellen Sanders, Ph.D., a
food microbiologist, in an article published in 2008
in the journal "Clinical Infectious Diseases."

Sanders states that it's unwise to assume that using
probiotics will restore a healthy balance of microbial
flora in all consumers. Overgrowth of certain strains
of bacteria could be harmful, causing infections or
allergic reactions if used incorrectly.

Furthermore, probiotic use may lead to
over stimulation of the immune response,
metabolism, or transfer of genes.

Read more:
When you should stop taking Probiotics
and
3 Reasons you should stop taking probiotics
For additional articles:
December 28, 2012