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

Polio literature has for many years, mentioned polio survivors
experiencing fibromyalgia.  In Western Australia we have been
successfully treating this with large doses of supplemental magnesium
chelate.  Whereas polio people with just "muscle aches" and "cramps" may
only need smaller doses twice a day of magnesium, those whose symptoms
are bad enough or have been told by doctors that they have
"Fibromyalgia" seem to need greater doses and maybe more frequently
during the day ie before each meal and before bed as well (and even
during the night if they wake up with muscle pain or cramps).

We find that the best way to work out your dose is to take 100mg of
elemental magnesium (chelated seems to work best) at least twice a day
and increase the dose by 100mg (at one dose or two doses if severe
problems) every 2 - 3 days until you reach the point that your bowels
are tending towards diarrhoea.  When this happens reduce the dose by the
last increase so that you are just below the dose that gives diarrhoea.
This should alleviate most muscle pain.  Sometimes if the muscles are
really tight, some extra massage to help to loosen them may also be
necessary but after that, continued magnesium supplementation should
keep them relaxed so that massage is no longer necessary.

Magnesium usually only lasts about 12 hours at the most so this is why
it needs to be taken morning and night.  Better absorbed on an empty
stomach and usually effective within a few minutes of taking it if
experiencing cramps, headaches, backaches, hiccups, twitching, spasm.
(If not resolving within 5 - 10 minutes, then you need to take a bit
more.)  We have found that magnesium tablets (unless crumbly) are not
well absorbed.  Magnesium capsules provide better absorption and
magnesium powder is the best absorbed.

People with fibromyalgia may have to take large doses for a few years
but people have reported back, that over time they have been able to
reduce the dose to a more normal dose that other polios find effective.
Taking Vitamin C at the same time may help to reduce the inflammation in
the muscles and raise the pain threshold.  Vitamin C needs to be taken
as frequently and at the same time as the magnesium.  Work out the dose
of Vitamin C the same way as for the magnesium.  Again too much Vitamin
C at a time will give diarrhoea.  Magnesium needs acid to help with
absorption so people on antacids may have problems absorbing oral
supplements.  Take lemon juice or apple cider with your dose (Vitamin C
helps too) to aid absorption.  Coca Cola will also help if the others
not available.

It is important to raise magnesium levels if they are low as you are
more likely to have a heart attack if magnesium or potassium levels are
low.  We have one polio member needing to have magnesium intravenously
due to antacids, as his blood levels are extremely low and this has
resulted in a heart attack just recently.

Manganese works on tendons and if you are having severe muscle problems
then the tendons are being affected too.  Manganese stops the stiffness
we get after sitting for a while, lessens tinnitus, twinges across
joints, torn tendons and muscles, tight tendons and aches, clumsiness,
loss of balance and a tendency to bump into furniture and doorways.  Can
be taken once a day.  Usual dose required varies from 20mg  - 1200mg
elemental manganese.  Occasionally too much may give diarrhoea.  Start
with one tablet, increase every 3 days until stiffness going or up to 6
tablets a day (may divide the dose if needing 6).

Hope this will help.

Tessa Jupp RN
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. 

Tessa Jupp - Post 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. 

Tessa Jupp - Post Polio Clinic - Western Australia

Why hasn't anyone else posted here??

Is there a problem? Please email me at poliowa@....

In answer to the question on Yahoo Questions:

Can Polio be passed from the father to the baby... even though the
virus is no longer in his body and was not severe?

The answer is No - the polio virus cannot be passed from the father
to the baby after he has recovered from polio.

But the father can pass on metabolic deficiencies that may give the
father Post Polio Syndrome in later years. These deficiencies may be
passed to the sperm and then to the baby at conception.

The best thing you can both do is be in the best possible health 12
months prior to conception. And then, as the mother, stay healthy
through the pregnancy.

Where do you live? Are you able to get lots of red meat, fresh fruit
and vegetables every day? Depending where you live there may not be
sufficient vitamins and minerals in the soils so you might need
nutritional supplements. In particular for polio survivors or their
children, for tireness and muscle strength you need more carnitine
(found in red meat and avocados) and muscle aches and cramps you
need more magnesium (found in green leafy vegetables).

Tessa

Hi Glennda,

I hope you have finally got through to see the messages.

To answer some of your questions:
Overdoing it - it used to be that if I got tired, I could rest for a
few minutes and then keep going. But now it knocks me out for a few
days and as you say I'm not sure if you recover back to your
original state. The message is don't overdo it!
BP meds - as Carnitine is a natural thing that you can get from food
they shouldn't interact. As long as get you get checked by your GP
regularly. You should always tell your doctor what you are doing
even if they don't agree with you.
As for how much Carnitine you need - everyone is different and
increasing slowly is the way to work it out. We don't use the
tartrate form (I don't know what ours is (just L-Carnitine) but it's
not tartrate or Acetyl). And if you change types you will need to
work out your dose again by trial and error.
Anaemia - have you ruled out food allergies? We've found a lot of
anaemia cases clear up when they eliminate beans and peas from their
diet. It's hard work but if you can do it for 3-6 weeks (that's how
long it takes to make new blood) you may see a difference. Beans and
peas means any legumes, lentils, dried beans, baked beans, soy
products (milk!), dhal, chickpeas, hummous, pea soup, refried beans,
peanuts(not really a nut), coffee and chocolate (come from beans!),
and even green beans and peas.

I'm glad the magnesium is working - I couldn't live without it. One
less problem to worry about.

Debbie.

Hi Debbie

Thanks for the new board; I am still trying to get on there; I feel
challenged in this sometimes-those first steps. haha!!

>>One thing that kept me wondering about my symptoms of PPS is that
the one thing I know for certain the last few years is that if I
overdo it I never get back any part of muscle that I lost. I went
through two cycles of physical therapy in the beginning of this last
flare up about 3 years ago. The docs don't know what to do, although
the dog seems to be a real hit as she does so much for me. I have
recently started on some L-Carnatine that I received from a
Naturopath here in my area; due to my findings she feels this may be
a lead. I learned something new today though; I am on BP meds,
Betablocker Metoprolol or Toprol XL it may have some effect on the
Carnatine or?? Well this is all stuff I do not know enough about.
Will the L-Carnatine (free-form) (from 500mg of L-carnatine-L-
tartrate) have what I need-I am up to four tablets and still adding
more every few days. It is what she thought I should start with and
not wait to order. Can others share their stories with me if they
have information about this product. Do others add Carnatine and
from what source. I am very low on money as I am not employed yet,
but must not slip any farther down the rabbit hole.

>>Another thing that is a problem is that I now have been dealing
with vitamin deficiencies in A, D, B12 and have had anemia problems
in the past. I have many leg issues and definite magnesium
deficiency. I am taking extra of all these now. It always takes high
doses of vitamins to keep me enjoying life. If I have gone off of
them for a short time I lose ground and never gain it fully back it
seems.

The information you gave me on magnesium has changed my life; no
more muscle shaking and little twitching already in just a two-week
period of time. Thank you for thinking of me and sending the
newsletters, I truly am very appreciative of your wonderful caring
nature--helping me from so far away.

Glennda

Hello

I am glad to find your site; it has been hard to find anything on
children born to mothers who had Polio. My mother had polio when she
was 13 and was pregnant with me at age 15 and had me at 16.

I live in the United States and they do not believe there is a
connection to this as I did not have it. Here is why I am writing
you. This is very much a shortened version, yet still long--sorry.

I have struggled with my walking and standing ability for the last
seven plus years. I have fought very hard to keep my mobility at
all. My legs are weakened yet I do well if I pace and rest and pace
and rest; then I can spend a very short time at a store or such.
Now, I did have to train a service dog to help me to keep my
mobility and I have been to physical therapy several times. Anytime
we up my exercise, which I tried many times, I have an incredible
time getting anything back, It is like I lose more muscle or stamina
and it seems to be gone forever. I am now trying to add in more
supplements and so on. The reason I checked on this is that it has
been the only thing I found so far that fits this pattern. I was
diagnosed with fibromyalgia, yet don't believe I fit this as I have
my right side more affected than my left and exercise seems to be
detrimental--even using exercises meant for this. It could be I
suppose, but I tend not to dwell on the pain or there is not as much
pain
  as there is weakness of the limbs. Docs don't know what to do with
me and I have been checked for MS and Parkinsons, I am classified in
an other category--doctor's just don't know what it is.

The thing that is odd to me is that I am and have been a driven
person; active with farm animals and horses, which gave me many
chores, which I love to do. With all of this I gave up the farm
animals completely and decided to go to school and use my mind; I
finished my degrees--using mind when body wouldn't cooperate.

I am not afraid to work hard and I was an exerciser and I
continually tell the docs that I am willing to work at it. They say
I can't overdo, yet do more exercise--the cycle of loss becomes
greater. I have a few issues and one autoimmune (skin) disease
diagnoses, and other health issues. It was in that online group for
this autoimmune issue that it was brought up about the PPS once
again. Seems others there have PPS--they did have polio as a child
though.

Sometimes I feel like I have to drag my legs places; I do it, yet it
seems so weird that we can not find the cause. My spirits are good
as I keep busy; my mother is a pusher like I am. As a PP survivor
she has had cancer twice, a quadruple bypass, a brain tumor and much
more; she keeps on with her life and is a great example for me. I
think that I push trough this so much because this is how I was
raised. If I push my physical body; it just never gets back to where
I was though.

Is there anything other than this that has this as a symptom? Why
does the US not believe in this as a possibility? I am afraid to
mention it to a doc here.

I am working hard to have freedom and ability to walk on my own once
again; it has been two and a half years since I had to start using a
service dog as a mobility assistant. I walked much like a drunk when
I pushed(more like drug myself) to walk and was in danger of falls.
Getting from my car safely into the house was even a struggle. The
dog gives me the movement and momentum to give me the extra pull
needed to walk without so much struggle. I hope this makes sense to
you.

Thank you for any help you can give,

Glennda from the US

MY NAME IS JESSICA AND I'M RESPONDING TO YOUR ARTICLE THAT WAS POSTED
ON OUR LOCAL POST POLIO SUPPORT GROUP WEB PAGE. MY MOM HAD POLIO WHEN
SHE WAS A LIITLE GIRL AND NOW, AT 63, IS SUFFERING FROM POST POLIO
SYNDROME.
I HAVE ONE BIOLOGICAL SISTER AND BOTH HER AND MYSELF SUFFER FROM
FIBROMYALGIA ALONG WITH A WHOLE LIST OF OTHER AILMENTS. I WOULD LOVE TO
HAVE ANY OTHER INFORMATION THAT YOU'VE RECIEVED FROM OFFSPRING OF POLIO
SURVIVORS OR IF YOU'D LIKE MORE INFORMATION FROM MYSELF OR MY SISTER WE
WOULD BE MORE THAN WILLING TO SUBMIT OUR "STORY". THANK YOU FOR YOUR
WORK AND OUTREACH TO PEOPLE WHO ARE STRUGGLING WITH THIS "MYSTERY" OF
AN ILLNESS. THANKYOU!

Let's be clear that in the case of children born after the parent had
polio that it is NOT a case of passing on the polio virus in any form.

It's the health of the parents at the time of conception that can
affect the child. If a parent is suffering from fatigue and muscle
weakness caused by nutritional deficiencies then there is a likelihood
that the child may suffer from the same problems or even further
problems depending on the stresses in their life.

Debbie.

I just read an article from Post Polio Group's March
newsletter in Volusia/Flagler. I contracted polio when I was 5 weeks
of age in New York (1953), and am mobile, yet living with PPS today.
I have a concern as I read about mother's passing a type of virus to
their offspring, causing our children to have pps symptoms.

		 I have a 30 year old daughter who has some fatigue
and joint pain from time to time.Lately she seems to have a lot of
colds, and is very prone to asthma attacks.  She works out when she
can, and was on swim team in high school. Lately she has been
complaining a LOT about abnormal amount of fatigue.

		 Is what your article or your findings pointing to
suggesting that a mom who had paralytic polio (I was paralyzed from
the neck down) could actually pass a dormant virus through the
placenta even 22 years later when pregnant with a child?

		  I would appreciate any information you could get
back to me.  I am the founder of a nonprofit and  fairly active, and
my daughter hopes to go into law enforcement in another state.

		 Thank you,
		 Lorraine

Hi

My mother had Polio when she was 9 and has suffered ever since, it
is now  coming to our attention because my siblings and myself have
many problems,  My older sister now 40 has the aching hips and legs,
and her eldest son  now 20 also suffers terribly the same condition.

So far my younger brother hasnt displayed symptoms but as for
myself, well  where do i begin, my problems are long and varied but
started at birth,  mum even called the doctor several times because
i just used to lay there  and not move for hours on end, the doc
told her i was just Lazy and always  would be, something that isn't
so untrue....

You asked on the site for others to contact you in regard to this so
i  thought i would jot a brief email to you...

Let me know if you would like any further info.

Cheers

Sue

Hi David.

I was so happy to hear from you. It's like meeting someone for the
first time that might know what I am going through. My father died
last August and my mother died in February. I have been taking care of
my mother most of my life because she had been in a wheelchair every
since I was born. She did pretty well the first few years and also had
my father but when she developed post polio syndrome she eventually
become bed bound. She died at age 73 and then I took care of my father
who had heart failure. I live in the same town very close to where
they lived and I am so sad I don't think that I will ever get over it.
I have been married 25 years and have 3 children and 2 grandchildren.
I have been fighting the doctor's for years for my mother and have
been going through it myself. I have terrible muscle pain all over my
body and the doctor's all say fibromyalgia. The only thing that really
help's is warm water or massage and that is just a temperary fix. I
would love to hear from you again.

                                 Sincerely Kathleen.

My name is Sonya.  My mother had polio as a child.

She was diagnosed with post polio syndrome about 10 years ago.  I have
been experiencing very extreme fatigue for about 6 years and just
recently started haveing  persistent muscle spasms.  I have been
referred to a neurologist and he has been doing a number of tests and I
am still waiting on the results.

Hello David

	 My mum recives the post polio newsletter vol 16 june 2005,
your article on page 6 gained my interest, my mum contacted polio when
she was 4 yrs old, she is now 64, I am 40 yrs old and over a good many
years have had problems with my joints and tendons including achilles
tendonititis whereby I was in plaster for 4 weeks, my hands are stiff
and I have repaeated problems with weaknesses in my wrists and
fingers. I am to make an appointment this week to see my GP to have my
carnitine levels done, i am willing to take part in any research you
may be conducting

	 thanks Ginny

Hello David

	 my mother has passed on to me a copy of your article "To the
children of polio mothers".  I'm making contact with you in the hope
that your research can be enhanced.  Briefly, my mother had polio in
1953 in Western Australia.  She was pregnant with my younger
brother.  At that time I was 2 and was not yet walking.  I have
always been told that I had very poor muscle tone in my legs.  I was
3 yrs+ before I commenced to walk.  Throughout my life I've never
had excessive energy, however sufficient to cope with an ordinary
lifestyle which did not include a regular sporting commitment or
activity due to lack of energy.  Since 1989 fatigue has been a
bigger issue for me and in 2000 was diagnosed with chronic fatigue
syndrome.  There has been no change to this and I daily monitor and
seek to manage my situation.  Leg pain continues to be an issue.
Since 1986/7 I have lived in the tropics of Australia and cope with
the heat and humidity better than I ever did with a colder southern
climate.  Being 'chilled to the bone' is a familiar experience.

	 My brother's childhood health was fine from what I can
remember.

	 Research based information about post-polio and the effects
of polio within families does interest me (and my mother) and I
welcome the opportunity to join a mailing list where available.

	 Yours sincerely,

	 Di

Dear Gigi,
		 Thank you for your e-mail.  There seem to be more of
us out there than any one expected.  I encourage you to follow up on
this.  It's a frustrating journey getting doctors to listen, much
less to believe us.  But then think of what our mothers have been
through.  I am going to type a short description from the most
recent issue of a Western Australia PPS Newletter in which my
article was also published (they seem to be further along in this
field than we).  Since I am trying to collect data for researchers
here, I would be most interested in the category under which you
fall.
		  3 Categories of Children of Polios
		 1.  Those like the above (she refers to my article)
who were exposed to polio in-utero when their mothers had polio.
These should be classed as polio survivors too.
		 2. Then there are those who were born before their
parent had polio (or who were there when a sibling had polio.)
These children could have actually had a minor unrecognised dose of
polio as they would have been exposed to the virus and probably were
quarentined at the time.  So they may be polio survivors too.
		 3.  The largest group are children born after their
parents had polio.  These are the ones who didn't actually have
polio themselves but are likely to record low carnitine levels now
and need more nutritional supplements simply because the poor health
of the polio parent may have affected their inherited genetic
biochemical levels at the time of conception.  Low folic acid is not
the only nutrient to cause problems in the developing child.
		 Any of these children now having problems with
fatigue and/or muscles or tendons should consider having carnitine
levels done and try some of the supplements found useful for polios.

		 I hope this gives you the information you need for
empowerment or just the relief that it is not "all in your head."
Thank you again for your e-mail and please let me know if you can
identify with any of these groups.

		 Ever Onward,
		 David

Hi David,

			 My mother had polio, too.  I remember being a
child complaining of knee pain and my mother telling me it
was "growing pains" also.  I stopped growing along time ago and every
once in a while still get that pain.  When it comes, it doesn't want
to leave.  Funny thing, a couple of years ago, I asked my parents if
the support group ever mentioned anything about passing along some of
the side effects to their children.  I asked because I had some of the
side effects my mom has, ie. fatigue, body aches.  I always thought it
was me just being tired most of the time.  At least now I know there
maybe a reason.  Thank you for your artilce.

			 Gigi

Hello David
	 I saw your article in my parents Post Polio newsletter (June
2005 Perth Western Australia) and my Mum suggested I contact you.
	 My Mum contracted polio as an infant and was left with a
limp after many years of treatment caliphers etc as a teenager.
	 Now she is 70 and uses a walking frame and has limited
movement.
	 My father contracted polio as a 14 year old and was told he
would never fully recover although he has always suffered fatigue
and weakness in his left side he has lived a very active life. He
was raised on a farm and has always been a worker and he was never
going to let polio be a problem in his life
	 My parents have never talked a lot about their illness and
the time it took to heal.  It is only now i have become really aware
of the impact polio had on them both and how they have been effected
by PPS.
	 In looking at my own health i am wondering if the fatigue i
have and weaknesses i had as a child in the area of muscle strength
and lack of gross motor skills have anything to do with having
parents who had polio.
	 it never occured to me until I read your article there may
be a link.

	 I have two children, my son who is almost 5 has oral and
motor dyspraxia which is a disorder that effects the motor planning
part of his brain. My daughter who is 8 has always been weak in the
area of motor skills although her language skills are good.
	 We have no family history of dyspraxia and i wonder if there
is any link coming from their grandparents and their polio
	 Thank you for your time
	 I would interested in any further information you have on
children of polio mothers.
	 Gaylor

"Will the baby be alright?"  This was the first question my parents
asked the doctors when, three months pregnant with me, my mother
contracted polio.  That was 1955 and almost no one knew of post
polio complications, much less polio in utero (a non-paralytic
strain of the virus which was possibly passed placentially).  Now
Post-Polio Syndrome has become a recognized and acknowledged
condition and as the children of polio mothers are approaching their
50's, new attention is being paid to polio in utero.

My mother was initially paralyzed from the neck down, but regained
use of most every thing but her legs and some diaphragm muscles.
One of the many things I learned from this remarkable woman was her
love of life and family.  When I was old enough to hear and
understand her tale, I will never forget her saying, "I didn't care
what shape my body was left in as long as I could live independently
of a respirator.  I had a husband and three children who needed
me."  And what a life she went on to lead.  She was an inspiration
to all who met her.  In her 50's she began to develop what we now
know were symptoms of PPS.  She took them with the same matter-of-
factness that she did her paralysis.  Unfortunately they progressed
unrecognized by her doctors until she died at age 64.  There is much
more I could write about this amazing woman, but I have been asked
to write an article for this newsletter in order to tell my story.
Our hope is that it will help others with similar stories.

From childhood I have had joint and muscle problems and never seemed
to have the energy of my peers.  I can remember, in the middle of
playing with friends, having to go home to lie down due to pains in
my legs.  Mama said they were "growing pains."  Sounded good to me.
From my teens on I had arthritic type pain in my hips and legs, and
the older I got the more it spread and the more severe it became.
Tests never revealed anything conclusive.  After almost two decades
of doctors making me feel as if it were all in my head, I began to
believe them.  However, after several days of being bed-ridden this
summer, it was if Mama tapped me on the shoulder and said, "Sweety,
think about your history."  I immediately began to research PPS and
was amazed at what I learned.  Researchers around the world seem to
agree it is entirely possible that polio mothers could have pass a
non-paralytic strain of the virus and therefore the offspring may
develop PPS like symptoms without having had actual paralysis.  This
has been an incredible journey of knowledge and empowerment and I
have been most anxious to share it with others with similar
stories.  Even though no one knows what the future will bring to the
children of polio mothers, simply having some explanation to life
long ailments does much to raise spirits and hopes.

My mother was diagnosed with polio, head drawn back, not sure which
one she had.  She was told that she was 6 weeks pregnant with me at
that time.  She lived in Spur, Texas, the year was 1955.  I was born
in May of 1956, with a deformed left leg, which was amputated at the
age of 5.  I was treated at a polio clinic in Plainview, Texas until
I was 13 months old.  At that time, I was sent to the Scottish Rite
Hospital for Crippled Children in Dallas, Texas, where I was treated
until I was 17 years old.
I am now 48 years old and live in northeastern Michigan.  I have had
health problems all my life and have been treated for so many
things, fibromyalgia, chronic fatigue, and similar things.  I have
dysphagia, my swallowing problems are painful, but due to low blood
pressure, I cannot take the calcium channelblockers that might
help.  I found a wonderful GP doctor who finally diagnosed me with
PPS and sent me to the PPS clinic at St. Johns near Detroit.  I have
severe back spasms, some scoliosis, arthritis, and nerve pain.  I
have so many different things going on with my body, one doctor said
I'm a hysterical female.  I am now going to the pain clinic in
Alpena.  The doctor there used to practice at the PPS clinic at U of
M in Ann Arbor, MI.  She does not believe that polio could cross the
placenta, or that I have PPS, but she also said that she has never
had a patient that was a product of such an early stage of
pregnancy.  My body does not behave like most peoples.  My mother's
PPS doctor, in San Antonio, Texas, disagrees with my pain clinic
doctor.  He says that I definitely had polio, along with my mother.

I thank goodness for my GP family doctor.  He has really gotten to
know me and takes me seriously.  He is a godsend.  He researches and
has diagnosed several more PPS patients, he thanks me for making him
aware of it.

Hi,
My name is Mary.  I am 48 years old and was born with a birth defect
due to polio in the womb.  My mother was diagnosed with polio and told
she was 6 weeks pregnant with me at the same time, in 1955.  I was
born in May of 1956 with my left leg much shorter, bones and a toe
missing.  My leg was amputated at age 5.  I was finally diagnosed with
post-polio 3 yrs ago, after years of doctors and misdiagnoses.  I am
one of the few known inuetero cases at such an early stage in
pregnancy that I and my doctors have heard of.  I was born in Spur,
Texas, treated before and after my birth at a polio hospital in
Plainview, Texas and from the age of 13 months to age 17, I was
treated at the Scottish Rite Hospital for Crippled Children, in Dallas,
Texas.
I'll be happy to share more info.

Mary

Thanks to IPPSO and wonderful people like you, my life has turned
around.  I'm off all arthritis medicine and other pain killers and
I'm doing better than ever.  I think a good deal of it is due to the
fact that I feel such relief that, like our friend just stated in
her e-mail, it is NOT all in my head.  And I completely think the L-
Carnitine has helped too.  I also took myself off my cholestoral
medication for a time.  I wanted to find out what my base line of
pain/discomfort is.  Only then can I know what I'm dealing with.
When I went to my Doctor with my file, it was as one would expect -
he listened, said he thought I was doing the right thing, but
ultimately left me to forge my own path.  I've become used to that.
Next Sunday is a meeting of a local chapter of Polio survivors to
which I have been invited.  Maybe someone will know of a more
receptive Dr. in the area.

I want to thank you for the recommendation of L-Cartintine and for
your your continued interest.  Maybe we could have a telephone
conversation some time to really share our situation.
Hope you are well.
Best Regards,
David

Joan,

One of the reasons that the doctors do not believe us is because
when the  children of polio mothers were born they did not have the
problems that they do  now.  It took until we were adults for the
symptoms to appear.
Fibromyalgia, raynauds phenomenon, muscle weakness, unexplained pain
in the  muscles and nerves.  There were children born with birth
defects from polio  mothers and they dealt with that then, there
were also a lot of children born  dead because of the polio virus
from the mothers.  I know this because I  have recieved e-mails from
women whose children were stillborn. But the  problems that the
children of these polio mothers are experiencing didn't appear
until they were adults.  Some even younger.   I have discovered
that the doctors who dealt with polio back when, didn't have a clue
about what  the long term effects were going to be.

When my symptoms first started to appear I was shocked,  I had been
active all of my life.  I did not have the stamina of others and I
tired  out easily and slept a lot but I kept active.  Then all of a
sudden it all  went bad.  I have fibromyalgia that is so bad that I
cannot lift any type  of weight without pain.  I got the Raynauds
and then muscle weakness and  pain.  My arms and legs hurt with
muscle spasms all of the time.  My  neck hurts so badly that I
feel like it is sprained all of the time.  My  shoulders hurt, and
my hands are to the point now where I have a hard time using  them
without pain.

When all of this started I wondered about the fact that I was inside
of my  mother when she had polio.  I was born with one side of my
pelvis frozen  solid.  The pelvis moves and swivels but one side of
mine does not.   Also with all of the other symlptoms I decided to
find out for myself because  all of the doctors wouldn't listen to
me.  But, now they are  listening.  There is a microbiologist in New
York names  professormike.  He had polio and is in leg braces.  He
is interested  in this and has me send him e-mails from people like
you.
  Also in  Australia they h ave already figured it out.  I recieved
three new e-mails  this week alone from people who are surviving
children of polio mothers or they  are worried about their own
children.

With all of the research I have done there is absolutely no doubt in
my  mind that polio does bridge the placental barrier and affect the
unborn  children.  I have too many people who prove that now.  Men
and women  alike.  I have taken all of the e-mails that I recieved
and took them to my  last doctor appointment and showed her and made
her read them.  She was so  impressed that she is now treating me
like I am a polio survivor which I  am.

The best thing that I have done for myself is listen to Tessa Jupp
in  Australia and taken L-Carnitine.  I have more stamina and my
chronic  fatigue has liften to the point where I can actually go out
on occasion with my  friends and not be in bed at 8:00.  It has
actually given me my social life  back.  The way that you take it is:

Take the recommended dosage on the bottle, if you get no diahrrhea
then you  increase the dosage a pill a day until you get diahrrhea
(spelling?lol)   Then gradually back off until it goes away.  Also
take magnesium for your  muscles,  for my circulation I have tried
evening primrose 6000 dose a  day.  It has stopped my hot flashes
and made menopause bearable.   After a hysterectomy it is a godsend
for the hot flashes. It has helped my  daughter also.

The doctors are mainly ignorant of pps especially in the generations
that  live after the initial polio.  Please write to Tessa and she
can give you  even more info than I can.  She is an angel in human
form.
_poliowa@..._ (mailto:poliowa@...)      also
_Professormike@..._ (mailto:Professormike@...)  would also
love to talk to you, he is the microbiologist that I told you
about.  He is  a scientist but his mind is more open than others.

Good luck and please keep in touch and let me know how you are doing

Linda

I read your letter in the PPS Manager and I have some questions for
you.  Do you have any siblings younger than you who have had
problems possibly related to polio?  I was eighteen when I was
stricken with polio.  I got married four years later and had my
first child the next year.  I have had five children and all of them
have had unusual birth defects.  None of their cousins, and they
have cousins by the dozens, have had any problems.  My oldest
daughter and I have believed that there is a conection with my
having had polio.  Of course, doctors have denied it.

When I was thirty-four, I had to have an hysterectomy.  The reason
was for surgery on my bladder.  The doctor said that my uterus was
yellow and atriphied.  He said that he did not know how I ever
carried any of my babies let alone five.  Although doctors said at
the time I was paralized that polio would not affect my reproductive
organs.

I would like to know if anyone else has had related problems.  Also,
my youngest daughter has fibromyalgia and her symptoms are very
similar to mine.

If during your research, you have run into any thing like this,
would you please e mail me.
Although nothing can change the past, I would like to know if there
is any conection.

Thank you.

Joan

There are international cautions that have been out for at least 15
years on use of valium by post polios.

We have had several here in Western Australia who have "been away with
the fairies" on it.  Muscle relaxants shouldn't be used by polios.
The natural muscle relaxant is magnesium and most people need more
magnesium anyway.

Calcium makes the muscles go tight and sore.  Magnesium is the natural
calcium channel blocker.  So often cramps, twitches, tight aching
muscles etc can be relieved by a magnesium supplement (preferably
taken twice a day on an empty stomach.)

Even eating calcium-rich foods, especially before bed, can cause
problems. Avoid milky drinks, cheese, ice cream, yoghurt, etc.

My mother had polio in 1934.

At age 39 I began having extreme weakness, SEVERE fatigue, SEVERE
nausea, tremors, muscle twitches, muscle pain in shoulders, neck,
and hips. Couldn't raise my arms over my head or walk up a flight of
stairs.  After 9 doctors tested me for EVERYTHING, including MS, and
treated me as if I were nuts, I "diagnosed" myself off of the
internet with fibromyalgia.  Began taking guaifenesin, eliminated
salycilates from my diet, and started exercising (Jazzercise).  The
guai and cardio has truly helped, and I brought myself "back from
the dead".

My subsequent research has proven to me that fibromyalgia and post-
polio syndrome symptoms are almost identical.  My two brothers have
the same health problems and the three of us grew up always being
tired, sleeping quite a bit more than our peers.  I think we were
born with the PPS but were able to deal with it when we were
younger.  My eldest brother and I have cervical spine problems, I
had two discs removed with a spinal fusion to my neck in 2001.  Also
have postural tachycardia.  Other brother has spinal problems as
well.

Our health issues are very similar to our mother's.  She is 77 and
suffering horribly from PPS.  I SO DO NOT WANT TO END UP LIKE HER.
One thing we found out, after trying every narcotic under the sun, a
low dose of VALIUM has taken away ALL of mom's muscle spasms.

Sue

My mother contracted polio when she was pregnant with me and now close
to 50, I am experiencing PPS.  I have read your article on carnitine
with great interest.
David

Dear Tessa (at Post Polio Clinic in Western Australia)

I have been taking the supplements that you suggested and I do feel
better.  I have more energy during the day.  I still have my moments
of exhaustion but not everyday all day now.  I have sent Dr. bruno e-
mails and he doesn't seem to take me seriously.  I have no proof and
the researchers and Doctors that I contact blow me off.  I am just
about ready to give it up.  I have been searching for months for an
answer to the question if I have health problems because of being
inside of my Mother during her pregnancy.  There are others like me
but the powers that be will not take us seriously.
It isn't just the fact that we all feel crummy.  But We want to know
what is wrong with us and if it is connected to polio.  I am the
type of person who is driven to find answers.  I know in my own mind
that it is from polio, but, without the support of the Medical
community it doesn't really matter.
I want to talk to professionals who care enough to help me in my
search.  So I want to thank you for your help and support but, I
don't see how continuing this quest is going to get me any where.
It seems that just because there hasn't been research on the polio
virus being transferred to the fetus in the womb means it doesn't
happen I guess.  We may know better but the ones with the big
education and brains say no.
I don't know what to do.  I would like to continue to talk to you.
I have gotten the first real support and excitement from you.  I
feel better with the carnitine.  I know that I am suffering from
pps.  But with no proof means no pps.
Linda