Re: creatine experience/Laurie, Barbara, , etc...

[Guest guest]

Hi Laurie, , , Barbara, and Sunny,

Have any of you ladies checked your creatine levels? Did you know what your

levels were before you started the creatine supplement? And have any of you

checked your levels after being on it for some time?

If so did your creatine levels increase? and if so by how much? Oops, I almost

forgot, What were your creatine levels before starting? Thanks

Ann-Marie

Re: creatine experience

>>>

>>>

>>> I was told I could go on it " indefinitely " , but I could only take it

>>> a few days before several of my symptoms got worse. So I bought a

>>> big thing of it and only tooks a few days worth. Word to the wise

>> on

>>> buying expensive supplements

>>>

>>> Take care,

>>> RH

>>>

>>>

>>>

>>>

>>>> Hi ,

>>>>

>>>> The longest that Dr Cohen has allowed me to take Creatine was 2

>>> weeks with the second week being a reduction in the dose so I can't

>>> judge what would have happened in 4 but it does sound as if you had

>>> an allergic reaction and should probably stay away from it. I did

>>> not experience any itching or neuropathy problems that I could

>>> associate with the Creatine.

>>>>

>>>> I'm sorry this happened to you.

>>>>

>>>> Alice

>>>> My mito doc told me to try creatine and I wondered if anyone else

>>> that

>>>> has tried it had any problems. After being on it about 2 1/2

>>> weeks, I

>>>> started to itch all over my body and started having more problems

>>> with

>>>> neuropathy. I took it for a total of 4 weeks before the itching

>>> and

>>>> neuropathy got so bad I couldn't stand it. I stopped it and

>>> after a

>>>> couple of days, the itching and neuropathy started to abate. The

>>>> itching and neuropathy is totally gone after being off the

>>> creatine for

>>>> about 1 month. Anyone else have any similar issues with it?

>>> Just

>>>> wondering.

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

[Guest guest]

I haven't had levels done before or after. It was never suggested to me.

Ann-Marie wrote:

>Hi Laurie, , , Barbara, and Sunny,

>

>Have any of you ladies checked your creatine levels? Did you know what your

levels were before you started the creatine supplement? And have any of you

checked your levels after being on it for some time?

>

>If so did your creatine levels increase? and if so by how much? Oops, I almost

forgot, What were your creatine levels before starting? Thanks

>

>Ann-Marie

> Re: creatine experience

> >>>

> >>>

> >>> I was told I could go on it " indefinitely " , but I could only take it

> >>> a few days before several of my symptoms got worse. So I bought a

> >>> big thing of it and only tooks a few days worth. Word to the wise

> >> on

> >>> buying expensive supplements

> >>>

> >>> Take care,

> >>> RH

> >>>

> >>>

> >>>

> >>>

> >>>> Hi ,

> >>>>

> >>>> The longest that Dr Cohen has allowed me to take Creatine was 2

> >>> weeks with the second week being a reduction in the dose so I can't

> >>> judge what would have happened in 4 but it does sound as if you had

> >>> an allergic reaction and should probably stay away from it. I did

> >>> not experience any itching or neuropathy problems that I could

> >>> associate with the Creatine.

> >>>>

> >>>> I'm sorry this happened to you.

> >>>>

> >>>> Alice

> >>>> My mito doc told me to try creatine and I wondered if anyone else

> >>> that

> >>>> has tried it had any problems. After being on it about 2 1/2

> >>> weeks, I

> >>>> started to itch all over my body and started having more problems

> >>> with

> >>>> neuropathy. I took it for a total of 4 weeks before the itching

> >>> and

> >>>> neuropathy got so bad I couldn't stand it. I stopped it and

> >>> after a

> >>>> couple of days, the itching and neuropathy started to abate. The

> >>>> itching and neuropathy is totally gone after being off the

> >>> creatine for

> >>>> about 1 month. Anyone else have any similar issues with it?

> >>> Just

> >>>> wondering.

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

[Guest guest]

Ann-Marie

No testing done here.

laurie

>

> Reply-To:

> Date: Mon, 18 Oct 2004 18:40:20 -0400

> To: >

> Subject: Re: creatine experience/Laurie, Barbara, , etc...

>

> Hi Laurie, , , Barbara, and Sunny,

>

> Have any of you ladies checked your creatine levels? Did you know what your

> levels were before you started the creatine supplement? And have any of you

> checked your levels after being on it for some time?

>

> If so did your creatine levels increase? and if so by how much? Oops, I

> almost forgot, What were your creatine levels before starting? Thanks

>

> Ann-Marie

> Re: creatine experience

>>>>

>>>>

>>>> I was told I could go on it " indefinitely " , but I could only take it

>>>> a few days before several of my symptoms got worse. So I bought a

>>>> big thing of it and only tooks a few days worth. Word to the wise

>>> on

>>>> buying expensive supplements

>>>>

>>>> Take care,

>>>> RH

>>>>

>>>>

>>>>

>>>>

>>>>> Hi ,

>>>>>

>>>>> The longest that Dr Cohen has allowed me to take Creatine was 2

>>>> weeks with the second week being a reduction in the dose so I can't

>>>> judge what would have happened in 4 but it does sound as if you had

>>>> an allergic reaction and should probably stay away from it. I did

>>>> not experience any itching or neuropathy problems that I could

>>>> associate with the Creatine.

>>>>>

>>>>> I'm sorry this happened to you.

>>>>>

>>>>> Alice

>>>>> My mito doc told me to try creatine and I wondered if anyone else

>>>> that

>>>>> has tried it had any problems. After being on it about 2 1/2

>>>> weeks, I

>>>>> started to itch all over my body and started having more problems

>>>> with

>>>>> neuropathy. I took it for a total of 4 weeks before the itching

>>>> and

>>>>> neuropathy got so bad I couldn't stand it. I stopped it and

>>>> after a

>>>>> couple of days, the itching and neuropathy started to abate. The

>>>>> itching and neuropathy is totally gone after being off the

>>>> creatine for

>>>>> about 1 month. Anyone else have any similar issues with it?

>>>> Just

>>>>> wondering.

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

>>>>>

[Guest guest]

Ann-Maire

My creatine levels had been taken several times, and they were

" normal " . The doc said I didn't need creatine, but I decided to ask

him " Can it hurt me? " . and decided to try it, when he said probably

not. He did say rare cases of kidney problems could occur, so anyone

with any susupicion there, be cautious. He did take a blood test for

kidney function before I started it. Dr. Tarnopolsky gives a good

explanation as to why creatine might help mito (or some mito) patients.

It is in the Winder 2004 UMDP newsletter, cover article. I don't know

if that one made it on the UMDF site yet.

Regards,

Sunny

> Hi Laurie, , , Barbara, and Sunny,

>

> Have any of you ladies checked your creatine levels? Did you know

> what your levels were before you started the creatine supplement? And

> have any of you checked your levels after being on it for some time?

>

> If so did your creatine levels increase? and if so by how much? 

> Oops, I almost forgot, What were your creatine levels before starting?

> Thanks

>

> Ann-Marie

>   Re: creatine experience

>   >>>

>   >>>

>   >>> I was told I could go on it " indefinitely " , but I could only

> take it

>   >>> a few days before several of my symptoms got worse.  So I

> bought a

>   >>> big thing of it and only tooks a few days worth.  Word to the

> wise

>   >> on

>   >>> buying expensive supplements

>   >>>

>   >>> Take care,

>   >>> RH

>   >>>

>   >>>

>   >>>

>   >>>

>   >>>> Hi ,

>   >>>>

>   >>>> The longest that Dr Cohen has allowed me to take Creatine was 2

>   >>> weeks with the second week being a reduction in the dose so I

> can't

>   >>> judge what would have happened in 4 but it does sound as if you

> had

>   >>> an allergic reaction and should probably stay away from it.  I

> did

>   >>> not experience any itching or neuropathy problems that I could

>   >>> associate with the Creatine.

>   >>>>

>   >>>> I'm sorry this happened to you.

>   >>>>

>   >>>> Alice

>   >>>> My mito doc told me to try creatine and I wondered if anyone

> else

>   >>> that

>   >>>> has tried it had any problems.  After being on it about 2 1/2

>   >>> weeks, I

>   >>>> started to itch all over my body and started having more

> problems

>   >>> with

>   >>>> neuropathy.  I took it for a total of 4 weeks before the

> itching

>   >>> and

>   >>>> neuropathy got so bad I couldn't stand it.  I stopped it and

>   >>> after a

>   >>>> couple of days, the itching and neuropathy started to abate. 

> The

>   >>>> itching and neuropathy is totally gone after being off the

>   >>> creatine for

>   >>>> about 1 month.  Anyone else have any similar issues with it?

>   >>> Just

>   >>>> wondering.

>   >>>>

>   >>>>

>   >>>>

>   >>>>

>   >>>>

>   >>>>

[Guest guest]

Thank you Sunny for responding to my questions. I am glad that your levels

stayed within the normal range.

Yes, I have seen and read Dr. T's article about Creatine. Thanks for

reminding me about it.

To the other ladies who responded to my questions: Thank You very much. I

have below normal range levels of creatine and was wondering how high they

might go with supplementation.

Ann-Marie

Re: creatine experience

> >>>

> >>>

> >>> I was told I could go on it " indefinitely " , but I could only

> take it

> >>> a few days before several of my symptoms got worse. So I

> bought a

> >>> big thing of it and only tooks a few days worth. Word to the

> wise

> >> on

> >>> buying expensive supplements

> >>>

> >>> Take care,

> >>> RH

> >>>

> >>>

> >>>

> >>>

> >>>> Hi ,

> >>>>

> >>>> The longest that Dr Cohen has allowed me to take Creatine was 2

> >>> weeks with the second week being a reduction in the dose so I

> can't

> >>> judge what would have happened in 4 but it does sound as if you

> had

> >>> an allergic reaction and should probably stay away from it. I

> did

> >>> not experience any itching or neuropathy problems that I could

> >>> associate with the Creatine.

> >>>>

> >>>> I'm sorry this happened to you.

> >>>>

> >>>> Alice

> >>>> My mito doc told me to try creatine and I wondered if anyone

> else

> >>> that

> >>>> has tried it had any problems. After being on it about 2 1/2

> >>> weeks, I

> >>>> started to itch all over my body and started having more

> problems

> >>> with

> >>>> neuropathy. I took it for a total of 4 weeks before the

> itching

> >>> and

> >>>> neuropathy got so bad I couldn't stand it. I stopped it and

> >>> after a

> >>>> couple of days, the itching and neuropathy started to abate.

> The

> >>>> itching and neuropathy is totally gone after being off the

> >>> creatine for

> >>>> about 1 month. Anyone else have any similar issues with it?

> >>> Just

> >>>> wondering.

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

[Guest guest]

Ann-Marie,

No, we haven't measured creatine, but my understanding is that serum

levels would not tell you whether there is adequate creatine in

muscle.

It is widely known and accepted that patients with neuromuscular

disease (of many kinds) have reduced amounts of phosphocreatine in

muscle. Phosphocreatine helps produce ATP, the fuel that muscle runs

on, so it stands to reason that normalizing phosphocreatine in

muscle would potentially help endurance and strength, and studies

have shown this benefit for a significant number of NM patients.

Magnetic resonance spectroscopy (MRS) can be used to measure

creatine in muscle. There is a very interesting case where magnetic

resonance spectroscopy (MRS) was used to monitor muscle response to

dietary treatment in a 53-year-old woman with CPT II deficiency.

Prior to treatment, her creatine levels in muscle were low, but

following treatment with a low-fat diet and co-factors (MCT oil,

carnitine and Q10) her creatine levels in muscle returned to the

high end of normal. This was without taking creatine supplements,

interestingly enough. Her serum creatine kinase (CK) remained

elevated, indicating muscle breakdown, but was much lower than

without treatment.

In my case, one of my research muscle biopsies looked at ATP and

nucleotides in muscle and all were very low, so from that result it

is likely that phosphocreatine would also be low. I have definitely

benefited from a combination of rx phosphorus and OTC creatine,

which boosts " both ends " so to speak.

Hope this helps. You always ask such interesting questions, Ann-

Marie.

Barbara

> >>>> Hi ,

> >>>>

> >>>> The longest that Dr Cohen has allowed me to take Creatine

was 2

> >>> weeks with the second week being a reduction in the dose so

I can't

> >>> judge what would have happened in 4 but it does sound as if

you had

> >>> an allergic reaction and should probably stay away from it.

I did

> >>> not experience any itching or neuropathy problems that I

could

> >>> associate with the Creatine.

> >>>>

> >>>> I'm sorry this happened to you.

> >>>>

> >>>> Alice

> >>>> My mito doc told me to try creatine and I wondered if

anyone else

> >>> that

> >>>> has tried it had any problems. After being on it about 2

1/2

> >>> weeks, I

> >>>> started to itch all over my body and started having more

problems

> >>> with

> >>>> neuropathy. I took it for a total of 4 weeks before the

itching

> >>> and

> >>>> neuropathy got so bad I couldn't stand it. I stopped it and

> >>> after a

> >>>> couple of days, the itching and neuropathy started to

abate. The

> >>>> itching and neuropathy is totally gone after being off the

> >>> creatine for

> >>>> about 1 month. Anyone else have any similar issues with it?

> >>> Just

> >>>> wondering.

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

[Guest guest]

Ann-Marie,

No, we haven't measured creatine, but my understanding is that serum

levels would not tell you whether there is adequate creatine in

muscle.

It is widely known and accepted that patients with neuromuscular

disease (of many kinds) have reduced amounts of phosphocreatine in

muscle. Phosphocreatine helps produce ATP, the fuel that muscle runs

on, so it stands to reason that normalizing phosphocreatine in

muscle would potentially help endurance and strength, and studies

have shown this benefit for a significant number of NM patients.

Magnetic resonance spectroscopy (MRS) can be used to measure

creatine in muscle. There is a very interesting case where magnetic

resonance spectroscopy (MRS) was used to monitor muscle response to

dietary treatment in a 53-year-old woman with CPT II deficiency.

Prior to treatment, her creatine levels in muscle were low, but

following treatment with a low-fat diet and co-factors (MCT oil,

carnitine and Q10) her creatine levels in muscle returned to the

high end of normal. This was without taking creatine supplements,

interestingly enough. Her serum creatine kinase (CK) remained

elevated, indicating muscle breakdown, but was much lower than

without treatment.

In my case, one of my research muscle biopsies looked at ATP and

nucleotides in muscle and all were very low, so from that result it

is likely that phosphocreatine would also be low. I have definitely

benefited from a combination of rx phosphorus and OTC creatine,

which boosts " both ends " so to speak.

Hope this helps. You always ask such interesting questions, Ann-

Marie.

Barbara

> >>>> Hi ,

> >>>>

> >>>> The longest that Dr Cohen has allowed me to take Creatine

was 2

> >>> weeks with the second week being a reduction in the dose so

I can't

> >>> judge what would have happened in 4 but it does sound as if

you had

> >>> an allergic reaction and should probably stay away from it.

I did

> >>> not experience any itching or neuropathy problems that I

could

> >>> associate with the Creatine.

> >>>>

> >>>> I'm sorry this happened to you.

> >>>>

> >>>> Alice

> >>>> My mito doc told me to try creatine and I wondered if

anyone else

> >>> that

> >>>> has tried it had any problems. After being on it about 2

1/2

> >>> weeks, I

> >>>> started to itch all over my body and started having more

problems

> >>> with

> >>>> neuropathy. I took it for a total of 4 weeks before the

itching

> >>> and

> >>>> neuropathy got so bad I couldn't stand it. I stopped it and

> >>> after a

> >>>> couple of days, the itching and neuropathy started to

abate. The

> >>>> itching and neuropathy is totally gone after being off the

> >>> creatine for

> >>>> about 1 month. Anyone else have any similar issues with it?

> >>> Just

> >>>> wondering.

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

> >>>>

[Guest guest]

In a message dated 10/19/2004 10:43:53 AM Eastern Standard Time,

wheatchild@... writes:

Magnetic resonance spectroscopy (MRS) can be used to measure

creatine in muscle. There is a very interesting case where magnetic

resonance spectroscopy (MRS) was used to monitor muscle response to

dietary treatment in a 53-year-old woman with CPT II deficiency

I have had the MRS done of my leg muscle and had abnormal results, but my

creatine levels still remain within normal range.

Ann-Marie-- they do this test at the Univ. of Penn on a research basis but

are very interested in mito patients. Let me know if you want more info.

Malisa

[Guest guest]

They can measure many different thing with an MRS, but not different

things with the same scan as they all require very expensive complex

computer software. It is usually the software that is the problem with

getting them done as it can take months and months to get set up right

to begin with. We had one that we waited for in the Detroit area for

months to get an MRS measuring lactic acid spikes in the brain and ended

up going to CCF because of the delays the software caused locally.

Malilibear@... wrote:

>

>In a message dated 10/19/2004 10:43:53 AM Eastern Standard Time,

>wheatchild@... writes:

>

>Magnetic resonance spectroscopy (MRS) can be used to measure

>creatine in muscle. There is a very interesting case where magnetic

>resonance spectroscopy (MRS) was used to monitor muscle response to

>dietary treatment in a 53-year-old woman with CPT II deficiency

>

>

>

>I have had the MRS done of my leg muscle and had abnormal results, but my

>creatine levels still remain within normal range.

>Ann-Marie-- they do this test at the Univ. of Penn on a research basis but

>are very interested in mito patients. Let me know if you want more info.

>Malisa

>

>

>

[Guest guest]

I was to have one at CCF and after a year of waiting, the machine was still

being calibrated. About that time, Dr. Cohen decided that we already knew

that had lactic acid in her brain, and I probably would too.

laurie

>

> Reply-To:

> Date: Thu, 21 Oct 2004 13:19:57 -0700

> To:

> Subject: Re: creatine experience/Laurie, Barbara, , etc...

>

> They can measure many different thing with an MRS, but not different

> things with the same scan as they all require very expensive complex

> computer software. It is usually the software that is the problem with

> getting them done as it can take months and months to get set up right

> to begin with. We had one that we waited for in the Detroit area for

> months to get an MRS measuring lactic acid spikes in the brain and ended

> up going to CCF because of the delays the software caused locally.

>

>

>

>

>

> Malilibear@... wrote:

>

>>

>> In a message dated 10/19/2004 10:43:53 AM Eastern Standard Time,

>> wheatchild@... writes:

>>

>> Magnetic resonance spectroscopy (MRS) can be used to measure

>> creatine in muscle. There is a very interesting case where magnetic

>> resonance spectroscopy (MRS) was used to monitor muscle response to

>> dietary treatment in a 53-year-old woman with CPT II deficiency

>>

>>

>>

>> I have had the MRS done of my leg muscle and had abnormal results, but my

>> creatine levels still remain within normal range.

>> Ann-Marie-- they do this test at the Univ. of Penn on a research basis but

>> are very interested in mito patients. Let me know if you want more info.

>> Malisa

>>

>>

>>

[Guest guest]

Heck, even I have lactic acid in my brain, and my labs almost never

show it in my blood. I had a MR-SPECT at C-P in NYC, it wasn't too

long to get the procedure set up, so they probably have a bunch of

different programs saved for different chemicals (and DiMauro is

there, so they probably look at lactic acid buildup in the brain a

lot).

I don't feel my treatment changed once they found out there was

lactic acid in my brain. They still wanted to do a muscle biopsy

anyway.

Yes, I think it is correct that they can only measure one chemical at

a time with each scan, because they have to run the scan looking for

a certain " wavelength " associated with the chemical being looked for.

Take care,

RH

> >

> >>

> >> In a message dated 10/19/2004 10:43:53 AM Eastern Standard Time,

> >> wheatchild@n... writes:

> >>

> >> Magnetic resonance spectroscopy (MRS) can be used to measure

> >> creatine in muscle. There is a very interesting case where

magnetic

> >> resonance spectroscopy (MRS) was used to monitor muscle

response to

> >> dietary treatment in a 53-year-old woman with CPT II deficiency

> >>

> >>

> >>

> >> I have had the MRS done of my leg muscle and had abnormal

results, but my

> >> creatine levels still remain within normal range.

> >> Ann-Marie-- they do this test at the Univ. of Penn on a research

basis but

> >> are very interested in mito patients. Let me know if you want

more info.

> >> Malisa

> >>

> >>

> >>