Re: Carnitine deficiency

[Guest guest]

Hi, CHristie,

>Are you going to have the biopsy?

No (unless a research study comes along) - the effect of Carnitor is plain

enough to convince my drs and me.

Jerry

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[Guest guest]

It astounds me that this one woman with three kids and a demanding job

has literally changed the lives of so many of us. Thank you !

loveperennials wrote:

>Re: recent inquiry to debj abt. carnitine. My son had a diagnosed

>carnitine deficiency after supplementation with fish oils and before

>GF diet. I asked the Dr. if it was possible that it was caused by

>supplements or diarrhea- He said absolutely not. My son now on the

>celiac diet and without supplements currently is without diarrhea and

>has NO carnitine deficiency. He used to need all the supplements to

>speak and function, he no longer needs them with his new diet!!!

>Please question whether the treatment is needed long term- you may

>just need to correct a temporary problem! My son had the biopsy and

>does not have a fatty acid metabolism issue that we thought he had,

>more likely the result of malabsorption due to Gluten! I'm not a

>doctor, but I research all I can and study my son carefully each day.

>He has all his energy back and more currently and all because we

>started the GF diet after suggestion by . Thank you ! He

>is doing great off the meds!! As previously suggested it is possible

>that these levels are low in our kids to start, but something

>aggravates it(Gluten or other)! He had the celiac test done and it was

>not positive for celiac at that time. Hope this helps!

>

>

>

>

[Guest guest]

No, will not address this and Dr. G will not even look at your labs. This

is more DAN and Yasko. Allergy shots and LDN are also a not acceptable in .

Cheryl

~http://www.gryffins-tail.blogspot.com

~@midian42~

On Apr 11, 2010, at 4:47 PM, and Freeman wrote:

> My son has very poor muscle tone and low methionine on his amino acids test.

> He is currently doing allergy shots (EPD) and is taking LDN. Are these

> things agreed with on the plan? He is being tested tomorrow for low

> carnitine. I appreciate any help.

>

>

[Guest guest]

My sons both had low muscle tone (one was officially diagnosed with

hypotonia and the other was " on the low end of normal " according to a

pediatric specialist). Their muscle tone improved greatly on the

protocol over the course of several years. At the time Dr. Goldberg told me

that it was not highly unusual to see this happen with his patients. They

are both in the normal range now.

The most amazing thing that happened was that their reflexes normalized as

well. We were seeing a pediatric physiatrist (a pediatrician who

specializes in helping children with physical challenges... she prescribed

my son's leg braces, etc.). She had watched one of my sons for several

years, when one day she got very excited and showed me her old notes

regarding his reflexes. Year after year her comments had been the same

(abnormal reflexes). Then, that year, they were normal! She said " This

JUST DOESN'T HAPPEN! " , and that if my son were not a patient of Dr. G, she

would have been sending me for an MRI because the only thing that she knew

of that could cause a change in muscle tone was a brain tumor. Thankfully,

she called and spoke to Dr. G and they both agreed it was the protocol (by

the way, my son had had normal MRIs in the past so they had those to refer

to as well). Of course, we kept an eye on my son but he just kept getting

better!

A few years later, my younger son's reflexes normalized as well. She was

able to see and document this miracle in two children.

I feel that the change was most probably due to the antiviral, but one can

never say because at that point they were both on the whole protocol.

Neither has ever tested positive for HHV6 but I saw the change when we

started an antiviral for my younger son (he made a HUGE cognitive leap in a

week's time). He had been having seizures, lost his speech, etc. The leap

he made was unlike anything I had ever seen before (or ever saw again) in

him. He went from being unable to identify even a few objects (in pictures)

by pointing to them (he would just stare at them and look confused) to being

able to easily point to around 100 in one week's time.

By the way, our neurogeneticist had us try carnitine on our son and it did

not help, but I know that it does help some.

Best of luck to you.

HTH,

Caroline G.

> On Apr 11, 2010, at 4:47 PM, and Freeman wrote:

>

>> My son has very poor muscle tone and low methionine on his amino acids test.

>> He is currently doing allergy shots (EPD) and is taking LDN. Are these

>> things agreed with on the plan? He is being tested tomorrow for low

>> carnitine. I appreciate any help.

>>

[Guest guest]

That's such a great story, Caroline.

I wonder if your son's doctor had thought about submitting it for publication as

a case study.

________________________________

From: Caroline Glover <sfglover@...>

Sent: Thu, May 20, 2010 7:26:15 AM

Subject: Re: Carnitine deficiency

 

My sons both had low muscle tone (one was officially diagnosed with

hypotonia and the other was " on the low end of normal " according to a

pediatric specialist). Their muscle tone improved greatly on the

protocol over the course of several years. At the time Dr. Goldberg told me

that it was not highly unusual to see this happen with his patients. They

are both in the normal range now.

The most amazing thing that happened was that their reflexes normalized as

well. We were seeing a pediatric physiatrist (a pediatrician who

specializes in helping children with physical challenges... she prescribed

my son's leg braces, etc.). She had watched one of my sons for several

years, when one day she got very excited and showed me her old notes

regarding his reflexes. Year after year her comments had been the same

(abnormal reflexes). Then, that year, they were normal! She said " This

JUST DOESN'T HAPPEN! " , and that if my son were not a patient of Dr. G, she

would have been sending me for an MRI because the only thing that she knew

of that could cause a change in muscle tone was a brain tumor. Thankfully,

she called and spoke to Dr. G and they both agreed it was the protocol (by

the way, my son had had normal MRIs in the past so they had those to refer

to as well). Of course, we kept an eye on my son but he just kept getting

better!

A few years later, my younger son's reflexes normalized as well. She was

able to see and document this miracle in two children.

I feel that the change was most probably due to the antiviral, but one can

never say because at that point they were both on the whole protocol.

Neither has ever tested positive for HHV6 but I saw the change when we

started an antiviral for my younger son (he made a HUGE cognitive leap in a

week's time). He had been having seizures, lost his speech, etc. The leap

he made was unlike anything I had ever seen before (or ever saw again) in

him. He went from being unable to identify even a few objects (in pictures)

by pointing to them (he would just stare at them and look confused) to being

able to easily point to around 100 in one week's time.

By the way, our neurogeneticist had us try carnitine on our son and it did

not help, but I know that it does help some.

Best of luck to you.

HTH,

Caroline G.

> On Apr 11, 2010, at 4:47 PM, and Freeman wrote:

>

>> My son has very poor muscle tone and low methionine on his amino acids test.

>> He is currently doing allergy shots (EPD) and is taking LDN. Are these

>> things agreed with on the plan? He is being tested tomorrow for low

>> carnitine. I appreciate any help.

>>