NIH interest in Carnitine for other health concerns

March 25, 2004

Did I do this right? You have to pay to get in to read?

M

March 25, 2004

Here's an interesting press release:

http://www.pharmalive.com/News/Index.cfm?articleid=122266

Theresa

March 25, 2004

I just clicked on the link and it went to the article. I will copy and

paste it for you.

Carnitine's Growing Role in Health and Disease Prevention Is Topic for

NIH Conference

GAITHERSBURG, Md., March 25, 2004/PRNewswire/--The growing role of

carnitine, an essential nutrient, in health and disease prevention is

the topic of a special National Institutes of Health (NIH) conference to

be held March 25-26 at the NIH campus in Bethesda, MD. Speakers at the

conference, " Carnitine: the Science Behind a Conditionally Essential

Nutrient, " will discuss the scientific body of knowledge that suggests

that carnitine deficiency may be associated with a host of chronic

diseases, including cardiovascular and end- stage renal disease, cancer,

male infertility -- even aging.

http://ad.doubleclick.net/jump/PharmaLive/main;sz=300x250;ord=%7Bts%20%272004%2\

D03%2D25%2020%3A04%3A33%27%7D?>

NIH co-sponsors for the meeting are the National Institute of Child

Health and Human Development (NICHD), the National Center for

Complementary and Alternative Medicine (NCCAM), the National Institute

of Mental Health (NIMH), and the Office of Dietary Supplements (ODS).

Among the conference's speakers are Menotti Calvani, MD, director,

Research and Development, Sigma Tau Pharmaceuticals, Rome, Italy;

Brass, PhD, professor of medicine, Center for Clinical Pharmacology,

Harbor-UCL, Torrence, CA, and; Hiatt, MD, Novartis Foundation

professor, cardiovascular research, University of Colorado Health

Sciences Center, Denver. Brass will talk about the role of carnitine in

sports medicine while Hiatt's area of expertise is peripheral arterial

disease (PAD).

Carnitine is a naturally occurring substance required in energy

metabolism. It is comprised of two amino acids -- lysne and methionine.

It is produced by the body but can also be found in meats and dairy

products. Its role is to transport the long-chain fatty acids across the

cell's inner mitochrondial membrane. Mitochrondia use fatty acids and

glucose to produce energy.

Secondary carnitine deficiency is a rare metabolic disorder usually

diagnosed at birth. However, primary carnitine deficiency, which is due

to decreased synthesis of carnitine in the body or altered transport of

carnitine across the cellular membrane, can occur in people of all ages.

Carnitine levels also decrease with age.

According to Hiatt, who has conducted clinical research on carnitine's

therapeutic value in peripheral arterial disease,

" propionyl-levocarnitine may improve exercise capacity, as measured by

distance walked on a treadmill, and also quality of life. "

Propionyl-levocarnitine is one form of the carnitine molecule and seems

to be more effective for cardiovascular disease. Acetyl-levocarnitine

appears to be more effective in the brain.

" In the last two years, we have witnessed a growing scientific interest

in metabolomics, the science that can investigates the metabolic

alterations present in chronic diseases, " according to Calvani, whose

company was among the first to invest in the pharmaceutical development

of carnitine.

Carnitor® (levocarnitine) is the prescription version of carnitine and

is manufactured by Sigma-Tau. It was approved in 1985 for primary and

secondary carnitine deficiency, and in 1999, received supplemental

approval for carnitine deficiencies associated with late-stage renal

disease.

The Sigma Tau Group, one of the top three pharmaceutical companies in

Italy, is the worldwide leader for the development of carnitine

derivatives in a variety of metabolic disorders. Headquartered in

Gaithersburg, MD, the company specializes in orphan drugs and is

committed to a mission of providing treatment for unmet medical needs.

CONTACT: Bradlow, +1-, for the Sigma Tau Group

Terms and conditions of use apply

A United Business Media Company

Mgiggle58@... wrote:

>Did I do this right? You have to pay to get in to read?

>M

>

March 26, 2004

Thank you for that reference. It is good information. I am glad to see

research and interest in this area.

I could not get the link to connect, so thanks for copying also.

Regards

Sunny

> I just clicked on the link and it went to the article. I will copy and

> paste it for you.

>

> Carnitine's Growing Role in Health and Disease Prevention Is Topic for

> NIH Conference

>

> GAITHERSBURG, Md., March 25, 2004/PRNewswire/--The growing role of

> carnitine, an essential nutrient, in health and disease prevention is

> the topic of a special National Institutes of Health (NIH) conference

> to

> be held March 25-26 at the NIH campus in Bethesda, MD. Speakers at the

> conference, " Carnitine: the Science Behind a Conditionally Essential

> Nutrient, " will discuss the scientific body of knowledge that suggests

> that carnitine deficiency may be associated with a host of chronic

> diseases, including cardiovascular and end- stage renal disease,

> cancer,

> male infertility -- even aging.

>

> http://ad.doubleclick.net/jump/PharmaLive/main;sz=300x250;

> ord=%7Bts%20%272004%2D03%2D25%2020%3A04%3A33%27%7D?>

>

> NIH co-sponsors for the meeting are the National Institute of Child

> Health and Human Development (NICHD), the National Center for

> Complementary and Alternative Medicine (NCCAM), the National Institute

> of Mental Health (NIMH), and the Office of Dietary Supplements (ODS).

>

> Among the conference's speakers are Menotti Calvani, MD, director,

> Research and Development, Sigma Tau Pharmaceuticals, Rome, Italy;

> Brass, PhD, professor of medicine, Center for Clinical Pharmacology,

> Harbor-UCL, Torrence, CA, and; Hiatt, MD, Novartis Foundation

> professor, cardiovascular research, University of Colorado Health

> Sciences Center, Denver. Brass will talk about the role of carnitine

> in

> sports medicine while Hiatt's area of expertise is peripheral arterial

> disease (PAD).

>

> Carnitine is a naturally occurring substance required in energy

> metabolism. It is comprised of two amino acids -- lysne and

> methionine.

> It is produced by the body but can also be found in meats and dairy

> products. Its role is to transport the long-chain fatty acids across

> the

> cell's inner mitochrondial membrane. Mitochrondia use fatty acids and

> glucose to produce energy.

>

> Secondary carnitine deficiency is a rare metabolic disorder usually

> diagnosed at birth. However, primary carnitine deficiency, which is

> due

> to decreased synthesis of carnitine in the body or altered transport

> of

> carnitine across the cellular membrane, can occur in people of all

> ages.

> Carnitine levels also decrease with age.

>

> According to Hiatt, who has conducted clinical research on carnitine's

> therapeutic value in peripheral arterial disease,

> " propionyl-levocarnitine may improve exercise capacity, as measured by

> distance walked on a treadmill, and also quality of life. "

>

> Propionyl-levocarnitine is one form of the carnitine molecule and

> seems

> to be more effective for cardiovascular disease. Acetyl-levocarnitine

> appears to be more effective in the brain.

>

> " In the last two years, we have witnessed a growing scientific

> interest

> in metabolomics, the science that can investigates the metabolic

> alterations present in chronic diseases, " according to Calvani, whose

> company was among the first to invest in the pharmaceutical

> development

> of carnitine.

>

> Carnitor® (levocarnitine) is the prescription version of carnitine

> and

> is manufactured by Sigma-Tau. It was approved in 1985 for primary and

> secondary carnitine deficiency, and in 1999, received supplemental

> approval for carnitine deficiencies associated with late-stage renal

> disease.

>

> The Sigma Tau Group, one of the top three pharmaceutical companies in

> Italy, is the worldwide leader for the development of carnitine

> derivatives in a variety of metabolic disorders. Headquartered in

> Gaithersburg, MD, the company specializes in orphan drugs and is

> committed to a mission of providing treatment for unmet medical needs.

>

> CONTACT: Bradlow, +1-, for the Sigma Tau Group

>

> Terms and conditions of use apply

> A United Business Media Company

>

> Mgiggle58@... wrote:

>

> >Did I do this right? You have to pay to get in to read?

> >M

> >

March 26, 2004

Thanks for forwarding info! I have been on Carnitine twice, besides from

developing a terrible body odor, I developed terrible Gi problems. Although they

suggest I try it again, I don't think I can, I was more miserable on it than

off. Anyone else have problems with it? Expensive too!

Martha

March 26, 2004

, I am taking Coq10. When I took Carnitine it was RX, and I did start

out at very hefty doses. Blood work shows I am not Carnitine Deficient, but MD

(at time) thought it might help.

Martha

March 26, 2004

Thanks

Martha

March 26, 2004

Thanks for the Info

Martha

March 26, 2004

Thanks

Martha

March 26, 2004

Martha,

Are you taking CoQ10? They work together and the side effects of the

Carnitor tend to decrease when you take it with the CoQ10. Also, you

need to very slowly increase the dosage. Also, the Rx is more pure than

the OTC variety.

Mgiggle58@... wrote:

>Thanks for forwarding info! I have been on Carnitine twice, besides from

>developing a terrible body odor, I developed terrible Gi problems. Although

they

>suggest I try it again, I don't think I can, I was more miserable on it than

>off. Anyone else have problems with it? Expensive too!

>Martha

>

March 26, 2004

Martha,

I have a problem with Carnitor too. Not everyone can take it even in the same

family. My oldest daughter can't manage a day without it.

I tried it for three months and never got over the stomach problems and constant

burning feeling. When I saw Dr Cohen last month, he didn't seem too surprised

at this and after reviewing my older labs (the new ones aren't in yet) he

realized that I had an extremely high amount of it in my urine and I had not

started it at that time. His comment to me was that this is a sign of a fatty

oxidation disorder which is in line with Mito.

Alice

Re: NIH interest in Carnitine for other health concerns

Thanks for forwarding info! I have been on Carnitine twice, besides from

developing a terrible body odor, I developed terrible Gi problems. Although

they

suggest I try it again, I don't think I can, I was more miserable on it than

off. Anyone else have problems with it? Expensive too!

Martha

March 26, 2004

I think it would be worth trying again, but start out at say 1 pill

twice a day for a week, then maybe 1 pill three times a day for another

week, etc. Mito bodies don't seem to tolorate new meds without a slow

ramp up, even if other people can handle it. I would also take it at

the same time as you take your CoQ10 as they work best with each other.

Mgiggle58@... wrote:

>, I am taking Coq10. When I took Carnitine it was RX, and I did start

>out at very hefty doses. Blood work shows I am not Carnitine Deficient, but MD

>(at time) thought it might help.

>Martha

>

March 28, 2004

I've had problems with Carnitor - I got seizures when I was on it.

Turned out that an increase in seizures is a mentioned side effect in

the prescription information. Previously (and afterwards) I had only

had absence seizures, but the seizures when I was on Carnitor were

blackout, teeth clenching, fall on the floor type seizures. A note

on Sigma-Tau revising the prescribing info:

" Levocarnitine : revised data sheet : seizures

United States of America. The manufacturer of levocarnitine

(Carnitor: Sigma-Tau) has revised the adverse reaction section of the

labelling for the tablet, oral solution and injection formulations to

include the following statement regarding the occurrence of seizures

in some patients receiving levocarnitine:

" Seizures have been reported to occur in patients with or without pre-

existing seizure activity receiving either oral or intravenous

levocarnitine. In patients with pre-existing seizure activity, an

increase in seizure frequency and/or severity has been reported. "

(from:

http://www.who.int/medicines/library/pnewslet/pnjan99.html)

It sounds like most people have a lot of success on Carnitor, and

need it, but I don't do well on it with or without CoQ10, and CoQ10

gives me bad insomnia. NADH works really well for me though, but B-

100 complex made me really really tired all the time. I wonder if we

could put together a survey on the group site about what we feel has

helped us (not dosages, but just yes/no as to what we feel has

helped) just to see if most people are helped by the things on the

mito cocktail list. I think I would have quit a few of the

supplements sooner if I thought other people had had problems with

them, or maybe I quit them too soon (gave each supplement at least 2

weeks).

Take care,

RH

> Thanks for forwarding info! I have been on Carnitine twice, besides

from

> developing a terrible body odor, I developed terrible Gi problems.

Although they

> suggest I try it again, I don't think I can, I was more miserable

on it than

> off. Anyone else have problems with it? Expensive too!

> Martha

>

March 28, 2004

RH

Wow. That is really good information about Carnitor.

Your point about sharing information about the mito coctail and other

drugs among us is really important in my opinion. I know you( I

heistate to say " we " because I am still new here} have been doing that

already. I do think trying to get it in a more structured form would

help.

I have been moving slowing in adding some of the stuff from the mito

coctail because I strongly feel that all supplements need to be treated

with respect, and that they have potential to help or not help or make

matters worse. To sort it all out is a huge job for us, but that seems

to be what needs to be done.

I just want to say that I am really appreciative to all of you who take

the time to share your experiences and information. It helps a lot.

Sunny

I've had problems with Carnitor - I got seizures when I was on it.

> Turned out that an increase in seizures is a mentioned side effect in

> the prescription information. Previously (and afterwards) I had only

> had absence seizures, but the seizures when I was on Carnitor were

> blackout, teeth clenching, fall on the floor type seizures. A note

> on Sigma-Tau revising the prescribing info:

>

> " Levocarnitine : revised data sheet : seizures

>

> United States of America. The manufacturer of levocarnitine

> (Carnitor: Sigma-Tau) has revised the adverse reaction section of the

> labelling for the tablet, oral solution and injection formulations to

> include the following statement regarding the occurrence of seizures

> in some patients receiving levocarnitine:

>

> " Seizures have been reported to occur in patients with or without pre-

> existing seizure activity receiving either oral or intravenous

> levocarnitine. In patients with pre-existing seizure activity, an

> increase in seizure frequency and/or severity has been reported. "

>

> (from:

> http://www.who.int/medicines/library/pnewslet/pnjan99.html)

>

> It sounds like most people have a lot of success on Carnitor, and

> need it, but I don't do well on it with or without CoQ10, and CoQ10

> gives me bad insomnia. NADH works really well for me though, but B-

> 100 complex made me really really tired all the time. I wonder if we

> could put together a survey on the group site about what we feel has

> helped us (not dosages, but just yes/no as to what we feel has

> helped) just to see if most people are helped by the things on the

> mito cocktail list. I think I would have quit a few of the

> supplements sooner if I thought other people had had problems with

> them, or maybe I quit them too soon (gave each supplement at least 2

> weeks).

>

> Take care,

> RH

>

> > Thanks for forwarding info! I have been on Carnitine twice, besides

> from

> > developing a terrible body odor, I developed terrible Gi problems.

> Although they

> > suggest I try it again, I don't think I can, I was more miserable

> on it than

> > off. Anyone else have problems with it? Expensive too!

> > Martha

> >

March 28, 2004

I think that depending on where your mitochondrial mutation is may depend on

what works and what does not work. As we all know, everyone, even in the

same family with the same disease is different.

Yes it would be interesting to see what works for who in general. I have a

theory as to what type of MELAS symptoms go with what body type. My sister

and mother who were both 5 ft, 100 lbs had the muscle weakness, numbness in

the legs and feet, and the shaking type and also the blackout type seizures.

My son and I who are more almost overweight--me 130 lbs, 5 ft 3; him 50 " ,

105 lbs at age 11, have the immobility, constipation. I have the diabetes

and foot numbness but also know I have had blackout seizures and he has

abscense seizures. My aunt who was about the same build as me, had the

diabetes also.

Janet

Re: NIH interest in Carnitine for other health concerns

> I've had problems with Carnitor - I got seizures when I was on it.