Home

Polio Support Group Polio
Online Support Group
A community of patients, family members and friends dedicated to dealing with Polio, together.
    Join This Group    
    Ask a Question    
      Tell a Friend      
 
Polio Community Polio Support Forums General & Support Late Effects of Polio Post Polio Syndrome.
 

Late Effects of Polio Post Polio Syndrome.



Related Discussions:

03/18/2008 10:12
Ted_Hutchinson

Post-Polio Syndrome Fact SheetThere is not a lot of point in repeating information from that factsheet. However, there are a few points from that information sheet that need stressing.

Perhaps it would help you understand what and why the further deterioration is occurring if you understood what is driving the process. This paper INFLAMMATION and PPS this combined with the fact that taking certain anti-inflammatory medications may help some of the symptoms of PPS. gave me the clue to improving my own symptoms. I had the idea that ideas that are effective in successfully treating other inflammatory may also apply to PPS. So I applied the supplement recommendations for treating MS that are listed here at DirectMS.org.

The most important of these is Vitamin D3 and ensuring you have the natural optimal levels that would have been obtained by paleolithic man is essential to controlling inflammation. I live in the UK latitude 52 and keep my status around 150nmol/l-60ng/ml with 5000iu/daily D3 slightly more than suggested by Direct MS but we don't have fortified milk nor as much sunshine nor so many days each year when UVB reaches the ground.

The amount of fish oil (3g daily) suggested is fine but try to buy molecularly distilled or perhaps use KRILL oil.

I don't bother with calcium as I feel when vitamin d is optimal your body will absorb sufficient from diet.

Magnesium 600mg daily is best taken at bedtime (separate from vit d as it blocks vit d uptake) Malate or taurinate are the best forms.

I wish I'd changed my diet earlier to that suggested by DIRECTMS.ORG

Since I've adopted a low carb diet I have lost a lot of weight (remember fat cells promote pro-inflammatory cytokines so reducing those reduces their pro-inflammatory impact)

You need to understand brains function much better on ketones rather than glucose so since I've made the change I've suffered less brain fog and have generally been more alert, sharper and better able to concentrate.

There is a lot of good brain nutrition information here at Dr McCleary's website.

Having made several supplement suggestions that may as they have to be taken daily, be quite expensive I feel obliged to point out, especially to UK readers, that these are much cheaper in the USA so importing from USA discount sources works out half the UK price. I've used IHERB, VITACOST, VITAMINLIFE VITAMIN SHOPPE without problems. UK readers note orders worth more than £18 are subject to VAT + Handling Charge so always limit the amount you spend to under $36.

A introductory $5 discount is available from IHERB if you use code WAB666.

Post edited by: Ted_Hutchinson, at: 03/18/2008 12:15

Post Reply   Quote


03/18/2008 12:51
Ted_Hutchinson

I forgot to mention one of the benefits of having the natural vitamin d status our paleolithic ancestors would have obtained 50-60ng/ml 125-150nmol/l is a reduction in pain.

Those with PPS will know the muscle and joint pain that seems immune to the usual range of pain killing drugs prescribed. I found the drug levels needed meant I was so doped up my quality of life was worse than when in pain. I also thought if I get used to that level of drug use now in my early 60's will they still be effective when I'm in my 80's.

But, this is something doctors haven't cottoned onto yet, higher vitamin d levels are associated with lower pain drug use. You are dealing with the inflammation that is the root cause of the pain. Therefore you are not in so much pain to start with.

I used to be kept awake at night cursing my ankles wrists and lower back. Now if someone asks me how much pain I'm in, I have to actually think about the matter because it is so much in the background to be something I can ignore and forget about (until they ask).

The research showing others with high vit d have less pain is here.

The theory that pain is the result of inflammation is here.

While I'm suggesting that Vit d is the prime mover in pain reduction it could be the cumulative effect of all the anti inflammatories I take. 2g omega 3 600mg magnesium as listed here

Post Reply   Quote


03/18/2008 13:01
Ted_Hutchinson

I forgot to say when talking about the Direct MS list of supplements that they suggest EGCG Max (epigallocatechin-3-gallate) – 2 to 3 capsules (700 mg each) A powerful antioxidant derived from green tea.

Well I don't take those I drink GREEN TEA. Seems daft to me to take a supplement when green tea is great to drink. I buy cheapo leaf green tea from the local Asian grocers. Costs me much the same as ordinary tea £2.50 for 500g. I make it in a slightly different way as I don't let the water boil as I would for normal tea. I've a kettle with a thermostat that cuts off just before boiling point. I don't let the tea brew for as long and I don't add milk/sugar as people do to make brown tea drinkable.

I mostly drink it plain but to ring the changes a slice of ginger or lemon is nice. A stick of cinnamon in the pot will last for several days other spices also enhance the flavour if you get bored. One big advantage of green tea is that it is nice cold. So if I forget a mug and come across it when it's cold it's never wasted. Green tea has lots of other health benefits too many to list here.



Post Reply   Quote


03/18/2008 13:20
Ted_Hutchinson

One supplement I take that isn't on the direct MS list is Acetyl L Carnitine.

I started taking this after reading about this Australian research.

Carnitine drives fat molecules efficiently into the energy furnaces to boost energy production. So it is helpful both in reducing physical fatigue but also mental tiredness. But as well as energy provisioning and memory boosting it also offers protection for brain cells. It supports the nerve growth factors that assist the peripheral nerves whose deterioration is a factor in this condition. There is research (albeit in mice) showing carnitine reverses this degenerative process.

The least you need is 500mg/daily but 2000mg is often used for Parkinsons/Alzheimer's but the Australian research used as much as folk to take without getting the runs and then dropped back to the most they could tolerate. If I have to go out when I know I'm fatigued to start with, I take 4 x 500mg tablets in one go.

Remember if you haven't ordered from IHerb before WAB66 saves you $5. UK readers don't spend more than £18-$36 or you will get stung for import VAT tax/handling on delivery.

Post Reply   Quote



Start a New Discussion

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice. Read More.
Contact Us | Bookmark Us | Add a Doctor | For Doctors | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | Advertise
Copyright (c) 2008 MDJunction.com All Rights Reserved