If I recall correctly they measured the amount in the muscle before
and after and found that it was not increased in the muscle due to
supplementation. This is different in what happens in sports medicine
in normal bodies.

The exact wording is "creatine supplementation at 5 g daily has no
effect on muscle mass or strength in FSHD, probably because of
failure of muscle uptake of creatine"



--- In fshsociety@yahoogroups.com, "Ray Jordan" <rrev@...> wrote:
>
> It concludes that there MAY be an absorption problem.
>
>
> ----- Original Message -----
> From: wiggytweeks
> To: fshsociety@yahoogroups.com
> Sent: Wednesday, August 02, 2006 4:41 AM
> Subject: [fshsociety] Re: Creatine trial result
>
>
> The studies of the absorption of the estrified version were on
normal
> folks not FSHers. To my knowedge there has not been any study of
the
> estrfied version on FSHers.
>
> The latest Creatine Monohydrate study on FSHers concludes that
there
> is an absorption problem with Creatine getting into the muscles
of
> FSHers.
>
> There are two immediate possibilites to investigate:
>
> 1) the waterfall effect. If you supplement more Creatine
Monohydrate
> will some get through to the muscle. Paul has done this for years
and
> thinks that he has benefitted. I also think while taking it along
> with Carnitine etc. I was walking well and not falling. When I
> stopped it within a couple of days my legs and trunk demonstated
some
> lack of muscle tone and I experienced a couple of out of control
bad
> falls.
>
> Yes it could be a coincidence but I did feel a change in my
muscles
> both trunk (balance) and legs. No not jelly like when stopping
the
> Carnitine more just not co-ordinated and maybe less stregth. I
need
> 100% of my muscle strength at all times because I have previously
> lost so much muscle volume over the 50 years that I have been
> affected by the disease.
>
> This leaves me with a marginal muscle mass for raising and moving
my
> 180 lb. body safely. My legs would give out at the knees and I
would
> sink to the ground or fall in 1972. Since then I also have hip
> weakness as well the drop feet from teenage years.
>
> Remember I have been falling for 47 years. This is not a new or
> recent issue for me. Even in my teens I would fall many many
times
> each year. Now of course I only walk in the house so there is
less
> risk.
>
> Interestingly I have not fallen since last October which is a
> personal best I am sure. I am hoping to go a year without a fall.
The
> supplements are making a difference for me. No I do not think it
is
> the Creatine but rather the Carnitine, CoQ10, Lipoic Acid etc.
etc.
>
> Interestingly while my eyes would not close when I slept for most
of
> my life. My wife has found them closed tightly lately.
>
> 2) The estrified veraion should be studied in FSHD immediately to
see
> if it is absorbed in our bodies. They should look at the Creatine
> transporters to see if there is a problem there.
>
> --- In fshsociety@yahoogroups.com, "steve" <globosa@> wrote:
> >
> > Ray,
> >
> > I would like to add that the Liverpool bunch ( under which this
> research was done ) are generally thought of as a good, friendly
and
> helpful team. ( well, they were back when I was dealing with them
15
> years ago or so, its under them that I underwent the Selenium
trial I
> mentioned a while back ). Hardly a group of 'rich' researchers
> lauding it up.
> >
> > You are also right about the Creatine dosage, in fact more
recent
> research indicates that as little as 2.5 grams a day is just as
> beneficial and most commentators now state that the oft
> quoted 'loading' requirement of 20gms plus in the first few days
is
> not really that neccessary, and is talked up by many
manufacturers of
> creatine products for the most obvious reason, it helps them
shift
> more bottles.
> >
> > As to the esterified version, indeed, some research suggests
that
> it may be up to 49% more efficient than the basic monohydrate but
> that this is still in comparison with the basic monhydrate being
> supposedly effective aswell ( at those mentioned low dosages ). (
its
> not the situation where the monohydrate is ineffective vs the
ester
> being effective ) So Wayne stating they should have used the
> esterified version of Creatine has no basis in research other
than
> his personal opinion.
> >
> > And as to Waynes own experience on Creatine. Well, come on, the
> fact he says he fell over twice shortly after stopping taking
> creatine proves absolutely nothing and certainly does not prove
the
> lack of creatine was the culprit.
> >
> > Again, I note with interest that Wayne states his legs went
crazy
> shortly after stopping Creatine ( thus leading to his falls he
> suggests ). Yet he was still taking Carnitine, lipoic acid, co
q10
> and perhaps also diltiazem ( he did not say precisesly regarding
> that ). I find it very odd that all these other things he has
stated
> taking individually on numerous occasions have supposedly made
his
> legs much more steady the moment he starts taking them apparently
> cease to have that effect the moment he stops taking any other
single
> compound he believes is helping him. He suffers jelly legs, falls
> etc, whilst still taking all the others that supposedly when
taken
> singly have boosted his leg capabilities etc.
> >
> > It really makes confusing and illogical reading when you read
the
> sage of Waynes jelly legs when you put together what
supplements /
> drug he has taken, was still taking and stopped taking during
> these 'epsiodes' . Sorry but its true.:-)
> >
> > I have also tried Creatine by the way, to no effect sadly.
> >
> > Steve
> >
> > ----- Original Message -----
> > From: Ray Jordan
> > To: fshsociety@yahoogroups.com
> > Sent: Tuesday, August 01, 2006 11:52 AM
> > Subject: Re: [fshsociety] Re: Creatine trial result
> >
> >
> > I have two comments on this:
> >
> > 1. I don't know of any researchers who get big bucks
> >
> > 2. The recommended dose of creatine (as printed on the
container)
> is generally 5g per day. The first stage of a study would
necessarily
> involve determining the safety of taking doses larger than this.
> >
> > 3. Ok, so I can't count, but ..... I took creatine at 5 g per
day
> for a year or so (with periodic breaks as recommended). I didn't
> notice any difference on or off it.
> >
> > Ray
> >
> > ----- Original Message -----
> > From: wiggytweeks
> > To: fshsociety@yahoogroups.com
> > Sent: Tuesday, August 01, 2006 11:04 AM
> > Subject: [fshsociety] Re: Creatine trial result
> >
> > I really don't undersatand why they do not do proper studies
> involving
> > more participants and varying doses like 5 gram, 25 gram and 50
> gram
> > doses so their results would be meaningfull.
> >
> > They should have also tested the estrified version.
> >
> > I am extremely disatisfied with the way FSHD research is done.
It
> > stinks. You wait for 50 years and they screw it up while
getting
> big
> > bucks.
> >
> >
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