Search the web
Sign In
New User? Sign Up
poliowa · Polio Survivors' Children/Grandchildren
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Message search is now enhanced, find messages faster. Take it for a spin.

Best of Y! Groups

   Check them out and nominate your group.
Having problems with message search? Fill out this form to ensure your group is one of the first to be migrated to the new message search system.

Messages

  Messages Help
Advanced
Father had polio   Message List  
Reply | Forward Message #44 of 57 |
Re: Father had polio


You are describing classic signs of carnitine deficiency. If you go to our website you can find heaps of information but here is one of the items:

CARNITINE for Polios
Polio 2000 Conference Melbourne  21/1/00         Tessa JUPP RN       Dr John NIBLETT FRCR FRACR    Polio Clinic - Western Australia

ALERT - The health of your children and grand-children may also be at risk because you had Polio

We have always been told that polio, as an infectious disease, cannot be passed on to our children.  Findings by the WA Polio Clinic indicate, -  not that the polio can be passed on, but . . .  that some of the problems we know as the Late Effects of Polio, can and may be affecting a number of our descendants.

This was brought to our attention a few years ago by some of our members who were doing well on carnitine supplementation themselves, so thought they would try it on a son or daughter who was tired all the time and maybe had muscle pain too.
Carnitine seemed to help their children also.  When we started to do blood carnitine levels on the children of polio survivors with these problems, we found that their levels were often even worse than the levels of their polio parent and grandchildren even lower again!

Low carnitine levels in muscle and blood give

*  FATIGUE
*  MUSCLE WEAKNESS
*  MUSCLE PAIN
*  LACK of ENDURANCE

So does POST POLIO SYNDROME!  Is this a coincidence or not?

At the Polio Clinic in Western Australia, we have been investigating carnitine in conjunction with post polio since 1994.  We have been looking at carnitine levels in the blood since 1996.  We have found that often polio survivors have levels in the lower limits of normal or below normal.  Over 250 WA polio survivors have found an improvement in symptoms ie much less fatigue, pain; and more strength, stability and endurance, when they take a carnitine supplement and eat more red meat, ie every day.  We have noted that when people feel better, their carnitine blood levels are now at the top of the normal range.

Research on post polio muscle biopsies by Borg and Grimsby in Sweden and Dalakas in USA show that as a result of polio, there is a greater number of type 1 muscles in polio survivors, and that a number of these are previously type 2 muscles, changed to type 1 by surviving type 1 nerves as a result of sprouting during the recovery process after polio.  

Type 1 muscles use carnitine as the catalyst to produce energy from protein (animal) foods.  More energy is available to type 1 muscle this way than with carbohydrate (plant) foods.  Type 2 muscles do well with plant foods.  We need a mixture of both sorts of foods so that both types of muscle can work well.

Carnitine is an amino acid (ie part of protein) that is found in our diet, primarily in red meat.  Avocado is the only vegetable source that gives much carnitine.

FOOD SOURCES of CARNITINE
         FOOD          mg/100g of food
    *  avocado             ? 100.0
    *  sheep                  78.0
    *  beef                    64.0
    *  pork                   30.0
    *  chicken               7.5
    *  milk                    3.4
    *  pear                    2.9
    *  rice                     1.8
    *  orange juice        1.3
    *  eggs                   0.8

Our bodies make 25% of our carnitine requirements.  The other 75% we should get from our diet.  We have found that the amount often needed by polio survivors is the equivalent of from 1 kg - 5 kg of steak per day, an amount impossible to eat, so supplementation is the only other answer ie 500mg - 2500mg.  This is best taken as a single dose as soon as you get up in the morning.  An extra 250mg can be taken immediately prior to more strenuous activity if needed, eg golf, physio, hydrotherapy, shopping etc (if these normally wear you out.)

It is recommended that you work out your necessary dose by increasing by 250 mg every 3 days until your bowels get very loose.  That will indicate too much so go back by the last 250 mg to get your effective dose.  Below your dose you may still be tired.  Carnitine is available in capsule or powder form.  A flat 1ml scoop gives 500 mg.  Powder should be a fine soft powder not a crystalline sparkling powder.  We have found the crystalline powder to be less effective.

The action of carnitine is to transport long-chain fatty acids (the breakdown of protein food) across the mitochondrial membrane in muscle cells, to undergo the final breakdown into energy for muscles.  If you or your children are often tired and may have muscle pain, try some carnitine.  You may be surprised.

--- In poliowa@yahoogroups.com, "duncara" <duncara@...> wrote:
>
> I've joined this group because my wife's father is a polio survivorand my wife has been sufferering from muscle, cartilage and most recently tendon problems. She has posture problems and leans or slumps all the time. She is frequently fatigued and often falls asleep immediately after meals. She has a range of aches and pains in back, neck and shoulders. In her teenage years she had Carpel Tunner Syndrome and had an operation to fix it.
> She rejects the idea that these symptoms could be in some way related to her father's polio but I am sure that there is a link. Can anyone shed some light on this for me please?
>



Thu Jul 23, 2009 4:40 am

poliowa1
Offline Offline
Send Email Send Email

Forward
Message #44 of 57 |
Expand Messages Author Sort by Date

I've joined this group because my wife's father is a polio survivorand my wife has been sufferering from muscle, cartilage and most recently tendon problems....
duncara
Offline Send Email
Jun 20, 2009
7:57 am

Hi, can't say if PPS is the reason, but I have exact same symptoms with both parents being polio survivors.  Due to severity, I have researched a lot and...
Mike Bruce
sentwebvideo
Offline Send Email
Jul 2, 2009
3:16 am

You are describing classic signs of carnitine deficiency. If you go to our website you can find heaps of information but here is one of the items: CARNITINE...
Debbie (or Tessa)
poliowa1
Offline Send Email
Jul 23, 2009
4:41 am

Hi, sorry for the delay in posting a reply to your question. I hope the information helps. Please ask if you have any other questions and feel free to use any...
Post Polio WA
poliowa1
Offline Send Email
Jul 23, 2009
5:18 am

You can email us directly at poliowa@... ... From: duncara To: poliowa@yahoogroups.com Sent: Saturday, June 20, 2009 3:57 PM Subject: [poliowa] Father...
Post Polio WA
poliowa1
Offline Send Email
Jul 23, 2009
5:19 am
Advanced

Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help