New PANDASstudy

[PANDAS_Denmark]

Hi All ;o)

 

Just became aware of this new PANDASstudy, and thought you might be interested ? :

 

"Do you know someone with PANDAS or high Strep antibodies? The Great Plains Laboratory, Inc. is looking for volunteers to participate in an upcoming study of pyruvate supplementation on PANDAS symptoms. "

 

More information at : http://www.greatplainslaboratory.com/home/...reptococcus.asp.

 

If anyone knows exactly what "pyruvate supplementation is, I´d personally like to know some more -

 

Best wishes to all of you and your kids -

 

PANDAS_Denmark

[peglem]

From that study:

This profile screens for the two most common antibodies against streptococcus, DNase antibodies in serum (ADB); antistreptolysin O titer (ASO). These antibodies may cross-react with brain tissue causing abnormal behaviors.

 

AAAAAaaaaaaHHHhhhhhhhh!

[mama2alex]

About The Study:

PANDAS is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with

Streptococcal Infections. When a child contracts a streptococcal infection, antibodies produced to fight

the infection may also cause damage to neuronal tissues (Singer et al., 2004). A proposed mechanism for

this phenomenon is that the streptococcal antibodies cross-react with pyruvate kinase, a key regulatory

enzyme involved in the glycolytic pathway (Kansy et al., 2006). The glycolytic pathway converts glucose

into pyruvate, a reaction necessary to produce the energy needed to make ATP and NADH. Energy

production will diminish if pyruvate synthesis is hindered, which may manifest in neurological symptoms like

Tourette’s. Additionally, pyruvate is a scavenger of hydrogen peroxide which makes it important in reducing

free radicals. Free Radicals have been implicated in a number of neurological diseases including Tourettes,

Alzheimer’s, Parkinson’s and ALS.

Supplementing pyruvate would theoretically eliminate the neurological side-effects of strep antibodies

against pyruvate kinase. Great Plains Laboratory is developing a study to observe the effects of pyruvate

supplementation on PANDAS symptoms. Pyruvate supplementation has been used for a number of years

to aid in weight-loss and to enhance athletic performance. Little to no side-effects have been documented

by those taking recommended doses of pyruvate while those taking doses larger than 5 grams daily

have reported minor gastrointestinal symptoms. New Beginnings Nutritionals will supply a pure pyruvate

supplement for this study.

[FallingApart]

Does anyone know what this pure pyruvate supplement is and whether we should try introducing it to our children? Perhaps that is the dumbest thing I could say. But this morning has looked like a scene from the exorcist at our house. No joke.

[Stephanie2]

I would be very interested in feedback about this from someone who wants to make their child the guinea pig :-) Also, I may ask the DAN doc on Wed. about this...they use Great Plains Labs frequently.

 

Stephanie

 

Hi All ;o)

 

Just became aware of this new PANDASstudy, and thought you might be interested ? :

 

"Do you know someone with PANDAS or high Strep antibodies? The Great Plains Laboratory, Inc. is looking for volunteers to participate in an upcoming study of pyruvate supplementation on PANDAS symptoms. "

 

More information at : http://www.greatplainslaboratory.com/home/...reptococcus.asp.

 

If anyone knows exactly what "pyruvate supplementation is, I´d personally like to know some more -

 

Best wishes to all of you and your kids -

 

PANDAS_Denmark

[smartyjones]

But this morning has looked like a scene from the exorcist at our house. No joke.

 

 

when i was first discovering pandas, a friend of mine who has a Phd in psych didn't know much about it but said she'd heard of it. said she remembered going to a conference that described historical figures in terms of mental illnesses. she thought there was talk of pandas describing saints.

[Suzan]

I received a response back today. I am interested but need to weigh the cost and whether we can manage the dosing schedule. I'm interested, heck, I'm desperate.... But I guess I should also run this by our new doc's. I might not want to mess with anything right in the middle of our new immunologist's review....

 

You are receiving this email because you have contacted me showing interest

in participating in a study looking at pyruvic acid supplements (or

pyruvate) to treat PANDAS.

 

Dr. William Shaw of the Great Plains Laboratory has not yet begun a formal

study but was looking for participants to do an informal analysis of their

child's response to adding the supplement Pyruvate Power. If this initial

analysis proves promising, we will then proceed with the formal study. We

are offering this product to participants at below our cost, however, you

will be responsible for the shipping cost (which is $9-$14.in the US

depending on how many bottles your order and where you live).

 

If you are willing to participate, we ask you to keep a daily log of any

changes that you observe once you introduce Pyruvate Power and then be

willing to send them to my email address

 

Each bottle of Pyruvate Power contains 90 capsules. The retail price of

this is $21.00. We will be selling this product for $10.00 per bottle.

Please find the dosage below by weight to determine how many bottles you

will want to purchase. Dr. Shaw suggested that you try the supplement for

one month before stopping if no benefits are seen. The only side effect

reported is increased intestinal gas.

 

The dosage is as follows:

 

30-49 lbs: 1 cap, 3 times per day.

50-69 lbs: 2 caps am, 1 pm, 1 at bedtime

70-89 lbs: 2 caps am, 2 pm, 1 at bedtime

90-109 lbs, 2 caps, 3 times per day

110-130 lbs, 3 caps in am, 2 pm, 2 at bedtime.

 

This product is not available to be ordered online. If you would like to

place an order, please email me and I will have a customer service

representative call you directly.

 

Thank you for your interest and I look forward to hearing from you. Please

feel free to forward this post to others who may be interested.

 

Sincerely,

 

Lori Knowles

General Manager and Director

New Beginnings Nutritionals

7797 Quivira Rd Lenexa, KS 66215

Phone: (913) 754-0458

Fax: (913) 248-7609

Email: lknowles@nbnus.com

[MichaelTampa]

Here's a little bit more on the pyruvate. In my stores, there are basically two pyruvates available--one they mention here and the one I bought. I bought the vegan tablets rather than the one with gelatin capsules they are using here, and believe I will be doing an informal study on myself in the coming days. Couldn't be any more reckless than the liquid fluoxetine (generic of prozac) I've taken, could it?

 

Michael