Dear Debbie/Tessa,

thanks for taking the trouble to send me your magazine, I find it really
interesting. I cannot find any useful information on carnitine through
our polio fellowship I rely on you to
keep me informed.

Our 31 year old has had ME for 12 months and is unable to work or do
anything much outside the home. Is there any known link between
parental polio and ME, the symptoms seem so similar? We have two other
children who are fine. If you know of any useful information on ME
I would be very pleased to hear of it.


All the best Margaret


Hi Margaret

Thanks for your email. Sorry. I don't know what happened to your last
one.

But I can help with your daughter.

One of the things we have found from feedback from our WA polio members
is that yes, a number of children and even grandchildren of polios can
be having problems with fatigue and muscle pain. When we have down
blood tests for carnitine on them, their carnitine levels are low too,
often lower than their polio parent. And they improve on extra
carnitine.

It is not happening with all children. From what we can work out, it
is more likely if there is not much of a gap between children with the
first being better than subsequent children unless there is a big gap
between having children, allowing the mother to recover her own levels
better in between. During pregnancy the mother's carnitine levels
halve by 14
weeks and can get lower as the pregnancy progresses as she shares her
carnitine with the developing baby. I found a study on this somewhere
and put the findings into my 2002 carnitine research paper on our
website. The mother's levels will remain low while breastfeeding too as
she supplies carnitine to the baby thru the breast milk.

There is a lot more about carnitine and the connection with children on
our website. Have you seen it?

But yes there could be a connection, or it could also be ME. If she
tries carnitine (page on how to work out the best dose is on the
website) and is much better then it isn't really ME - it is the polio
connection.

The other thing often needed by children of polios is magnesium to
relax muscle ie if having cramps, muscle aches, twitches, headaches,
backaches, grinding teeth, hiccups, restless legs, can't keep still,
anxiety, panic attacks ie everything is on edge.

In the UK you are likely to not need as much magnesium as we do here.
We have very poor soil here.

One of our volunteers always used to say no her kids were all OK, even
though she needed carnitine. Her daughter had a baby in her early 30's
and was so tired for a couple of years that in the end we tested her and
she was very low and is now fine again on carnitine. A few years later
her son was complaining of being tired in his 40's and so we then
tested him and he was also low and now much better on carnitine too.
But 15 years ago she swore they were OK.

So it can catch up with you. My brother was OK until he stopped eating
much red meat because he was saving up to buy a house. Now he needs
carnitine every day or he can't work. I think our great-grandfather had
polio. I have been really tired since I had my first child and looking
back on my childhood, I was always last in school races, couldn't run
all the way round the school oval like the other kids and so on. I
married a polio survivor an my kids have always chosen sports and
activities that don't require a lot of energy expenditure. The
children of my second boy were so floppy as babies that their
milestones were greatly delayed and they improved on carnitine. The
specialist was surprised but agreed they needed it.

Don't worry about trying to get a blood test. If you are tired try
some extra carnitine (and eat more red meat and avocados too) and see
if it helps. Overdose you get diarrhoea, not enough and you are still
tired.

Hope this helps and hope it solves your problems.

Cheers

Tessa Jupp RN
Polio Clinic WA

Dear Tessa, thanks so much for your informative and helpful reply -
I'll pass it on straight away.

I have another question - the last at present! I take quite a large
dose of carnitine around 5g daily. I have found that if I don't eat
enough fat I go downhill and a lump of cheese gets me going again. I
understand the mechanism of the carnitine breaking down long chain
fatty acids so I presume that is why I seem to need the extra fat. In
these days of low fat diet I wonder what else I could be doing
internally or should I presume that my body needs it and I won't be
furring up arteries or anything else.
I have had my cholesterol measured recently and that's fine and blood
pressure is also fine. Are there other tests the results of which could
give me useful information?

Thanks again, Margaret


Hi Margaret

Depending what sort of carnitine you are using, 5G may not be such a
large dose. We find that most other brands of carnitine don't have the
quality that ours does and people are needing to take at least twice the
amount to get the same effect. I take 3.5G of our good stuff. Most of
our people take less than that. So if you halved your dose it might be
the equivalent of 2.5G which would be a fairly common higher dose.

I don't find that I need extra fat as such but I do need to eat red meat
every day and have half the plate meat and half vegetables. I like
cheese and would love to be able to eat it, but find all dairy foods
gives me twinges in breast tissue and I have already had breast cancer
so I don't eat dairy foods. There is research that shows the
dairy/breast cancer links.

If your cholesterol and blood pressure are fine I wouldn't be worrying.
Cholesterol only accumulates inside blood vessels if your Vitamin C
levels are low. Vitamin C maintains strong blood vessels that don't
leak and with smooth slippery surfaces so there is no need for plaque
build-up. Plaque is the way the body tries to plug leaky blood vessels
to keep the blood flowing instead of leaking like a sieve under pressure
as the heart beats. It is like wrapping a bandage round a leaking hose.
You end up with a lot of thick bandage that still gets wet. So more and
more plaque keeps getting added. The answer is to fix the lining of the
blood vessel with Vit C in the first place.

So you seem to be managing pretty well.

I hope that answers your query.

Tessa