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Old 10-13-2006, 10:10 AM
linniec linniec is offline
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Default polio PPS and Post Polio Syndrome

It's fortunate that because of vaccines developed by teams led by Jonas Salk and Albert B. Sabin,and the massive application of these vaccines since 1956, there are very very very few new cases of Polio(infantile paralysis) in the Western World. We are just learning of the fatigue, weakness, and more, of Post Polio Syndrome(PPS). Ominously, some have tended to forget that Polio was once one the most feared diseases in the world... A sickness that shrivelled many's legs , including one of the presidents of the United States, Franklin Roosevelt. A former poster at Braintalk, Dan Hicks,who had polio in 1951, has a lot of experience and expertise in this field. Contact him. I never had polio,but grew up when it was still a dread...and thought of Jonas Salk as a saint. In the Western world, There are at least three websites which will help those who had polio before,or even in spite of, vaccines, aka those who have PPS otherwise known of as Post Polio Syndrome. They are:

The Mayo Clinic
The International Centre for Post-Polio Education & Research
The Lincolnshire Post-Polio Network

There are still cases thoughout the other parts of the world.

Last edited by linniec; 10-13-2006 at 11:04 AM. Reason: Adding Albert B. to Sabin
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Old 10-30-2006, 06:49 AM
Ted Hutchinson Ted Hutchinson is offline
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Originally Posted by linniec View Post
It's fortunate that because of vaccines developed by teams led by Jonas Salk and Albert B. Sabin,and the massive application of these vaccines since 1956, there are very very very few new cases of Polio(infantile paralysis) in the Western World.
I think there are some who would argue that if instead of going down the vaccine route we had spent more time and money exploring treatment and immune enhancing alternatives the sum total of polio type conditions would in fact be lower now.

The distinction between the late effects of polio and ME/CFS is probably more technical than useful. Those who think you can remove something from it's ecological niche and assume that nature will not fill the vacuum with a similar condition are, in my view, somewhat naive.

On a more constructive note those PPS readers wanting to manage their fatigue more effectively may care to read Carnitine and Post Polio

As a post-polio person I've also benefited from using the same supplements as suggest for MS. Only a few years ago I was on such a downward spiral that I was about to invest in wheelchairs and mobility scooters, however an article in the Lincolnshire PPS bulletin arguing that PPS may be an autoimmune response encouraged me to try using those supplements which appeared to be the best bets for auto immune conditions.

Since I've been doing this rather than the progressive decline I appear to be somewhat better and certainly no worse year on year. I take daily all the Direct MS supplement list excluding the designer list.

With vitamin c it's important to be aware of the poor uptake of large doses and the short half life once in the blood. So use low doseTime release formulations for best value for money. 3x500g time release taken one every 8hrs will be far more effective than 1,5g taken in a single dose.

The probiotics I don't take as tablets. I make my own yoghurt and kefir using probiotic strains in the starter.
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Old 02-11-2007, 11:21 PM
ainee ainee is offline
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G'day Ted - I've saw your name on several threads, so thought I'd write and tell you of some information I've come across. First of all, I didn't have polio - but my research into many illnesses while trying to find something which fitted near my symptoms, has brought to light many interesting facts which I would have never found if I hadn't been ill. I discounted many illnesses and conditions, as I didn't have certain symptoms.
I know with polio, that nerve cells become damaged - limbs are disabled and breathing is sometimes reduced. Maybe Post Polio Syndrome is caused by lack of oxygen, to nerves, tissues and cells, over an extended period of time, even over many years.
I found in the Encyclopaedia Britannica re Lung diseases (can't recall the exact page) - 'Their lung volume becomes reduced and the gas exchange is poor' - and - ' the gas exchange between carbon dioxide and oxygen is reduced.'

My illness and the horrific neurological (nerve)symptoms I displayed - which I believe were caused by injury and/or toxin - I believe my oxygen content was low - or the carbon dioxide content was high. I experimented with a simple treatment, which I found increased my breathing and oxygen content, 24/7. I documented everything, so believe it wasn't what I took that was important, but what it did in my body - by raising my temperature, increasing heart rate, increasing blood and oxygen content to my body, brain, tissues and cells, to suppress the symptoms and over time, most symptoms eventually reversed. I'm NOT saying it's a cure for anything - but I believe it could give better health to many. I posted info in a few BT threads, including one of the first ones - Success Stories in a thread MY STORY MAY GIVE HOPE - by ainee.
Hope this info may be of some interest to you.
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Old 02-21-2007, 01:24 PM
Ted Hutchinson Ted Hutchinson is offline
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The paper that got me thinking about how best to avoid further deterioration caused by the late effects of Polio was this INFLAMMATION and PPS By Marcia Falconer, PhD
Once you know how the autoimmune system works and learn about the role of Vitamin D, omega 3 and other anti inflammatory agents you can see a way forward.

The important point is to have at all times the highest possible vitamin d3 status. So as soon as any pro inflammatory cytokines start calling for attention there is a fully armed control system to deal with that situation instantly.

This is why the Directmsorg supplement list works so well for other autoimmune conditions. What I like about it is that it is a low cost no risk option. Keeping your Vitamin d3 status as max simply requires 20 mins daily at midday whenever the sun is strong enough or a high strength Cholecalciferol supplement which can be obtained for as little as £20 for 100 50,000iu. One of these a fortnight is cheap enough and cannot cause overdose problems at that frequency. The same company do 5000iu which work out a bit dearer but even so the cost it trivial. The postage to the UK is more than the cost of the Vit d.
Omega 3 also is pretty cheap and ensuring fish is a major part of the weeks menue really isn't a hardship, you've got to eat something anyway.
No one would wonder why their car went wrong if the oil/fuel/water/air levels were not kept at opimal status. It really shouldn't surprise anyone that now we know 4000iu is the amount of Vitamin d3 the body uses daily that any amount less than this may lead to problems.

As you rightly point out many with Polio have lung problems at the time of infection and later when the late effects kick in, have further problems such as sleep apnea and breathing/swallowing difficulties. I was experiencing these problems but when I upped my Vitamin d what did I find an improvement in lung funciton amazing isn't it that the effects of low vitamin d status are actually worse than smoking. No that isn't an excuse to light up. Smoking is bad for you. It simply makes your realise that Vitamin D insufficiency is a VERY SERIOUS health issue and this is why I keep on about it. We've nagged many people into giving up the fags, now we need to ensure they spend sufficient time outdoors to benefit from a high vitamin d status.
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Old 03-10-2008, 09:47 AM
Ted Hutchinson Ted Hutchinson is offline
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Post-polio syndrome patients treated with intravenous immunoglobulin: a double-blinded randomized controlled pilot study.
You will see from the abstract that Patients receiving Intravenous immunoglobulin reported a significant improvement in pain during the first 3 months, but no change was noted for subjective fatigue and muscle strength. CSF levels of tumour necrosis factor-alpha (TNF-alpha) were increased compared with patients with non-inflammatory neurological disorders.

I mentioned earlier that for some time I have been using supplements based on the Direct Ms org list.
I've modified that list slightly in that I take 5000iu/daily D3 I live in UK (often cloudy) and at latitude 52 so compared with the chaps who devised the Direct MS list I'm from the north and we don't have fortified milk/cereals here either hence the higher amount needed.

I don't take any calcium. I feel sure I get sufficient from Calcium Foodsources I also think the body uses food derived minerals/supplements better than from tablets.

I also think Loren Cordain: Potential Therapeutic Characteristics of Pre-agricultural Diets in the Prevention and Treatment of Multiple Sclerosis may also be applicable to our situation. It seems to me anything we can do to prevent unnecessary pro inflammatory cytokines circulating will help reduce our inflammatory condition.

Using the Paleo diet or similar low carb regime I've managed to lose 16bs in the last month, and as fat cells generate pro inflammatory cytokines, this will help reduce the inflammatory load let alone save me carting around excess weight.

I don't want anyone to be under the impression that the late effects of polio are entirely avoidable or that one can recover entirely from the muscle wasting/loss of strength that has already occured but I can report that my ability to stand and walk is better now than it was 5 yrs ago. I'm not in such constant pain I am not so frequently tired to the point I can't think clearly.
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Old 01-09-2009, 05:26 PM
charmangel001 charmangel001 is offline
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Default Needing Infomation Post Polio Syndrome

I am a 57 yr. old male with polio, I got the disease in the early 50's
I would like know if anyone would know about signing up on Social Security Benefits
for polio. I have paid Social Security Benefits in since 1967, I would like know how to start or where to go to get information on how to start the process of getting Social Security Benefits off of my polio.

P.S. I am self employed the last 18 years, I would like to know Do I have to sell my business before I try to start the process of trying to get benefits.
Who ever reads this I hope you can give me information on the problem and point me in the right direction for Post Polio Syndrome or are there ANY benefits for that has post polio syndrome
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Old 03-03-2011, 09:22 PM
rhabney rhabney is offline
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Default Post Polio Syndrome

For some great information on Polio and Post-Polio Syndrome I suggest the following book:

The Polio Paradox
by Dr. Richard L. Bruno
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Old 03-06-2011, 09:39 AM
Naominjw Naominjw is offline
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My friend was thought to have post-polio syndrome, but it turned out to be sjogren's syndrome. It took her years to be correctly diagnosed.
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