December 29, 2011    

Kickin' it Old School | Replacing PANS antibiotics with natural options
In November, faced with the impending months of winter, I began to think about how
we might increase Caroline's level of indoor exercise from zero to, well, more than

I searched Amazon for anything that would pique her narrow interests.  The choices
were slim.  Along with kid's workout DVD's & a Wii exercise game, I ordered a video
called Mousercise -- only available as a used VHS tape circa 1988 for $6.07.

I'm sure you can guess which one was an instant favorite.  Not only a favorite -
something she absolutely must watch every day.  When asked, "What do you want
to do?" her standard answer has become, "Mouse Exercise!  Basement!"  

The video quality is archaic, the hairstyles defy gravity and the leg warmers, well
they're so out, they're back in.. but none of that matters to her.  It works and she
LOVES it!  And I have to admit, it is catchy -- you can watch a short clip at right --
but don't blame me if later today you find yourself singing,
"Keep you body movin' till
your spirits rise, do it every night and day... c'mon everybody and mousercise,
Mickey's Mousercise!!"

For the entire 55 minutes, Caroline bops along with the Mousketeers.  When the
first time came for leg lifts, my girl, who normally protests even the thought of any
slightly challenging physical activity, laid right down, bent one knee and tried with all
the strength she could muster to lift her leg!  At that moment, all I could think was --
behold the power of Disney.  Frightening really.

As I continued to watch her and noticed the newer, trendier and much more
expensive DVD's and games sitting in the reject pile, I thought about what we've
been doing biomedically and realized, there might just be a blog waiting to be written
about our
new old-school choices.

Back to the Basics

If you've been following along,  you know that Caroline was diagnosed with PANS /
PANDAS and that her OCD behaviors and tics improved dramatically with
prescription antibiotics.  For 2 months, she remained on them.

At three separate times, I tried taking her off the antibiotics, but every time, her
symptoms returned within about a day and a half.  I would immediately put her back
on the antibiotics and the tics and OCD would leave again.

Of course, I was worried about the effect of the antibiotics on her gut, but didn't
know what to do.  In one desperate email exchange with a fellow PANDAS mom, I
posed the question
"How are we supposed to know what's worse, a bad brain or a
bad gut?!"
 And really, what a conundrum to face because with the gut-brain
connection, when you give antibiotics that are damaging the gut, even though
PANDAS symptoms are under control, it's only a matter of time before the cart
topples over and the gut problems cause other symptoms.

I knew we had to stop the antibiotics, but with several failed attempts in the past, I
wasn't looking forward to it.  That is, until I got some encouragement.

Sticking with the program

First, I got an AA Sponsor... Antibiotics Anonymous as she referred to herself.  My
Jessica, urged me to contact her day or night if I felt myself grabbing for the
bottle -- of Amoxicillin.    

She gave me some suggestions on products and dosages.  I found that I had most
of the products, but my doses were far too low.

I also did a little research of my own -- because that always helps me stay
committed.  I learned that Goldenseal was the original remedy for strep before the
advent of antibiotics.  

A ha!  Could it be that Goldenseal would be our Mousercise?!  The old, tried and
true -- that would prove to be preferable to modern day 'replacements?'

Even better, I had Goldenseal and had used it in the past.  The problem was, I was
giving her 200mg a day... and the RFA moderator recommended 500mg 3+ times
per day.  Quite a difference!

The line-up

Encouraged to give au naturel a try again, I devised a plan. Based on everything I
learned, I decided to use:

  • Goldenseal (GS)  --  500 mg, 4x per day - powerhouse of this protocol
  • Oil of Oregano (OoO) --  2 drops, 4x per day  (the softgels are 6 drops)
  • Berberine complex --  200 mg, 4x per day
  • Olive Leaf Extract (OLE)  --  200 mg, 4x per day*
  • Lauricidin  --  1 pellet or more, 4x per day*

I was already using OoO and Berberine at much lower doses.  The OLE and
Lauricidin, were things I used in the past but abandoned.  Why?  Because they
caused yeast flares.  Which is why my doses of OLE and Lauricidin are relatively
Note: If you don't want to buy all of these, I would leave off the Lauricidin first and
then the OLE.  
The GS / Berberine and OoO are the ones I think are critical.

To explain the yeast issue: OLE, as it fights bacteria, also goes after viruses with a
vengeance and their 'die off' causes yeast.  In fact, many people following Andy
Cutler chelation protocol wait until round 50 to introduce OLE.  The belief is that if
you use it too soon, not enough metals have been removed -- which means the
immune system is still impaired and can't control yeast properly.

Accordingly, my natural PANDAS 'protocol' is much heavier on supplements that
work primarily against bacteria, and not as much on viruses.  When her immune
system is stronger, we will more aggressively attack them, but we're not there yet.

The results

Success!  Every day she remained off the antibiotics, I felt cautiously optimistic.  
After a week, I was shocked.  She actually seemed to be having die off, marked by
irritability, which meant that the naturals were probably killing
more than the

The most surprising outcome was improved sleep.  When her PANDAS flare began,
her sleep deteriorated.  When she went on amoxicillin, her behaviors improved, but
her sleep went from bad to unfathomable.  After 2 weeks off amoxicillin, she slept
well 4 nights in a row.  Again, I was shocked.  She continues to sleep much better
than when on antibiotics.  

Needing a Lifeline

Then it happened, after 4 weeks of being mostly OCD and tic free, several of her
past behaviors very slowly started to reappear.  I felt as if the rug was being pulled
out from under me and to make matters worse, it was three days before Christmas!  

My former self probably would've reached for the bottle
(again, of amoxicillin - in case
you're just tuning in here
).  But instead, I sent a message to Jessica.  I knew I wasn't
actually going to cave in, but I was scared.  It didn't look like die off, it looked like the
same old symptoms, gradually increasing each day.

She reminded me that healing does not occur in a straight line.  And often as you
biofilm, which we were also dabbling in, pockets of bacteria can be
uncovered & released - which is good, because otherwise they can remain forever.  

This process though, could explain the return of symptoms until her body fights off
the newly exposed bacteria.  All of this I knew, but needed to hear.  I stuck with the
program and bore down.  Left wondering each day - especially difficult on
Christmas Day - if our team was powerful enough.


By December 27, she was back!  The OCD and tics faded and she was engaged,
communicative and basically the girl we knew the week prior.

It was then that I truly believed we could do this without pharmaceuticals.  Before
were maintaining.  But now, NOW, we were actively fighting and winning!  There's a
big difference.  And at that moment, all I could think was -- behold the power of
natural antimicrobials.

In the end, I'm happy to report that it's true... our house has gone totally 80's.  
From the 1980's VHS workout tape to the 1880's tried and true bacteria killing
herbs, we're finding that
what's old is new again and perhaps didn't need
replacing after all.

To learn more about the importance of choosing natural options instead of
prescriptions (whenever possible), I highly recommend "
Pharmaceutical Minefield"  
Long Term Antibiotics?
On a Facebook post, I recently
came across this
article about
how antibiotics can slow the
removal of mercury

Need I say more?  It certainly
reminded me of the
far-reaching effects of long
term antibiotic use.
Q. Can I give goldenseal for more than 2 weeks?
A. I've received more than a few inquiries from parents
saying their bottle of Goldenseal advises for it not to
be given for more than 2 weeks.  Neither of our
(Integrative Therapeutics & Solaray) indicate
that, but still, I asked Caroline's biomedical doctor.  
She told us there is not any reason for the 'warning'
and that she has children who have been on it for
over a year.  She considers it safe long term.
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