Strep in stomach, etc... (REALLY long post!)

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Hi everyone,

Life has gotten much more back to normal around here (yes, I am SO

grateful!) so I have been taking advantage and getting some things

done. Therefore, I haven't been keeping up with everyone's posts

like I used to.

A while back I mentioned that strep was found in my son's stomach and

said I'd post more info if anyone was interested. Well, it has been

a while (sorry!) but I'm finally getting to it.

I replied to a post on another board so I'm just going to copy and

paste my post here to save time...

______________________________

Beck is on a customized program given his test results so it wouldn't

be safe for another child to do his program -- but there are things

in his program that I'm sure would be beneficial for all PANDAS

kids. I'll get to that later.

We discovered quite a few things in working with this amazing

doctor. Beck has two strains of " benign " strep growing in his

stomach. The amount was off the chart -- past what they test for --

so we don't know exactly how much, but it's a lot. This was

discovered through a stool sample (keep in mind that he had been on

antibiotics for a month and had only been off of them for 5 days when

I took the sample -- there shouldn't have been ANYTHING in his

system). While these two strains of strep are supposedly harmless,

they are not ordinarily found growing in the stomach. My doctor was

very suspicious of this. The actual strep may be benign, but the

reaction to that strep could be our problem. I'll write a little of

what she said below because it is hard to describe:

(Since I am quoting my doctor below, I would prefer not to refer to

her by name in this post -- not sure if she'd approve. Anyone who

wants to know can email me.)

" Would strep in his gut cause him to create antibodies to strep?

Possibly. What an antibody is usually to a protein. So say you have

a strep and it has this protein structure and that's the strep. You

could produce an antibody to just certain portions of those

proteins. You don't have to produce an antibody to the whole

protein. So, again, these would be the peptide portions of the

protein. When you check for ASO, you're checking for the whole

antibody to the whole thing. It may not show up. So that's where

the new research is, is in looking at portions of the molecule.

There's actually a lab called Immunosciences in Beverly Hills that

has a panel to look at the different peptides of strep. And they

call them A and C and M... and so when you look at those sometimes

you can find it. But it's just odd that he grew out 8+ of strep

species. Now even though it's a benign strep species not causing a

strep infection, he may have the same cross-reaction because these

peptides might be similar to the kind of strep that you get in strep

throat, which is like a different species or different strains. But

they're all strep so they have similar protein structures except this

strain of strep isn't causing him to be " sick. " This strain of strep

is growing in his gut and may be cross-reacting with proteins in the

brain. What do you do about that? I say we go after the strep in

the gut even though it's probably not causing him any " physical "

harm. I think if we can decrease the immune response if we can get

the levels of this down a little bit, then he won't be producing so

many antibodies to it and then he won't be having such a reaction to

it -- but then again, that's theory. I can't show you any studies to

prove that but it just seems to make a lot of sense and I tend to see

these strep show up in my patients with OCD-type symptoms. They're

learning more about it, the different types or strep, but it's not

the same strep species that causes strep throat but it's a strep

species and I think that there is -- it's called molecular mimicry --

where the body thinks it's something that shouldn't be there and it

starts to produce an immune reaction to it. Ane that immune

reaction, somehow that protein cross-reacts with the protein in the

brain. Then you have this auto immune reaction in the brain. "

Interesting, isn't it? I think there's too much focus on the throats

of PANDAS kids. I've read posts where strep was never found in the

throat but was found in the nose or in the ear -- now the stomach.

Something else my dh and I have come to believe in is about tonsils.

I have read that tonsils can be so pitted that they will safely

harbor bacteria (including strep) that no amount of antibiotics can

ever touch. My wonderful ENT confirmed this. The strep can be deep

within the pits and may not even show up on a culture -- yet it may

be essentially poisoning our kids by triggering the antibodies. My

son's tonsils were EXTREMELY pitted. We had them (and the adenoids)

removed right away. The next two weeks were the worst. My son sat

on the couch and wouldn't touch ANYTHING. It was devastating.

However, about 12 days later, he had a 3-day period where he turned

around. Within that 3-day window, my son went from being

10% " himself " to around 90-95% " himself. " It was truly amazing. He

has maintained this dramatic improvement. It was a very difficult

time but we're so glad we did it. Another note about tonsils... my

dh had petite mal seizures all of his childhood. The day his tonsils

were removed, they stopped. My ENT said she has had this exact thing

with some of her patients and she fully believes that there are

neurological consequences of keeping tonsils in for some kids. Oh,

she also has been doing PANDAS research relating to her field and

found a study just completed by an ENT at Mayo Clinic recommending

tonsil removal for PANDAS kids to help with treatment and prevention.

There is one more added theory on our part about the tonsils. My son

was found to have high levels (way past toxic levels) of cadmium and

some other metals. Keep in mind that we're one of those " back to

nature " crazy families ...you know the type... cloth diapers,

nursing until age 4, no sugar, blah, blah, blah, so we were

completely floored to find this out. We are very conscientious about

what our son is exposed to. Basically, I'm just saying that if it

can happen to us, it can happen to anybody. Toxins are everywhere.

The metals compromise my sons immune system. They could have been

behind all of this, who knows. Anyway, since the tonsils are a sort

of " melting pot " for toxins, much as the lymph nodes are, some of

these metals could have been harbored in his tonsils. Possibly

another reason he had such a dramatic improvement following the

tonsillectomy.

Back to the supplements though. Some of the things on Beck's program

that I think would be beneficial for all PANDAS kids would be:

Kirkman All Natural Cod Liver Oil (liquid) lemon lime flavor - this

is a very important part of the program. Reasons are too long to

list. You can get this from Pfeiffer's compounding pharmacy called

HRI Pharmacy (630)505-0300. It's probably available somewhere

online, too.

FES brand flower essences. They say " Healing Herbs " on the front of

the bottle. The specific drops are:

Rock Water

Crab Apple

Pine

These address mood and emotion problems. These are available at

Whole Foods or other health food stores. There should be a pamphlet

available with them to explain their purpose.

IMUPlus - a very important part of the program. Best to read about

it on their site. The one thing they fail to mention on the site is

that this stuff, in addition to boosting the immune system, is jam-

packed with amino acids which will help our kids to create seratonin

and dopamine -- this improving their emotional state. Go to:

www.imupluswhey.com to find out about it.

The other things my son takes are:

1. His compounded prescription customized to his test results. He

takes 6 caps a day. This includes all the vitamins and minerals that

his body needs - while avoiding the ones that are toxic to him (I'll

explain this later).

2. An " herbal antibiotic " for the strep in his stomach.

3. Enzymes from Houston Nutraceuticals www.houstonni.com

4. A drainage supplement to help with detoxing the metal.

One important thing about supplements... As my doctor has warned,

the danger with vitamins and supplements is not so much in a child

not having something he needs, as having too much of something he

doesn't. For example, copper is a standard ingredient in

multivitamins for everybody. While it is typically beneficial, my

son is not excreting it as usual so it has accumulated to toxic

levels in him. A multivitamin would cause him more harm than good.

I guess this is just a broad warning not to give supplements unless

you have test results in front of you and an educated person helping

you figure them out. My son's hair analysis showed very little

copper in it so you could assume, as a layperson, that he is fine

with copper but that would be wrong. His serum blood test (they spin

the blood cell down to find out what is in the middle) showed toxic

levels of copper. Therefore, you can see that he is loaded up with

copper and not excreting it properly.

Okay, I need to actually get back to work. Not to be conceited, but

if anyone wants to copy this post into another forum, I don't care.

I know some people are funny about that. I would post my story more

places if I had more time. I know how much I appreciate reading

everyone else's stories -- it helped us so much.

I recommend to everyone to visit http://www.hriptc.org/ Read the

research articles, etc.

If anyone would like to email me, feel free. I'm at

beck121295@...

Kim