Hi from SW England

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Hi from SW England

Postby DrGeoff » Thu Aug 08, 2013 4:16 am

Should have done this a few days back, so it's catchup time.
I'm a retired psychologist with RRMS. It started as Tranverse Inflammatory Myelitis (TIM) in 2007, the Dx was changed to MS about 6 months later (after an LP and my second MRI), and has developed rather fast. Copaxone seems to have kept the relapses at bay for over a year, but one leg, and its dropped foot, are now just about useless . Walking is with two sticks and an FES.
I live in the West of England (been here since 1971), but was a bit of a gypsy before that - and I do miss travelling (I've done most of Europe this side of Moscow, and about 14 States in the US).
I do have some strong views on science related methods (thats what years of research will do for you).
Geoff
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Re: Hi from SW England

Postby want2bike » Thu Aug 08, 2013 11:41 am

Are you aware of the study done in your countries concerning MS drugs?

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!
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Re: Hi from SW England

Postby DrGeoff » Thu Aug 08, 2013 3:16 pm

Well, want2bike, that was a very interesting link you posted
John McDougall is a very charismatic presenter - but he does talk a complete load of garbage.
Studies that are now 13 years old.
A total mis-representation of the UK risk-sharing scheme.
Heart surgery does not save lives. Oh, really?
1 - It saved mine (13 years now)
2 - If Angioplasty does not work, then CCSVI does not work either (and some people will tell you that it certainly does).

But it was a very slick promotion for his books, diet, clinic, etc.
At first I thought he was not a fluent speaker - then I started to get the idea that his pauses, and fumblig for the right word, were actually scripted so as to make his presentation seem more sincere.

Geoff
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Re: Hi from SW England

Postby want2bike » Thu Aug 08, 2013 4:39 pm

Do you have a link showing a better light on the risk sharing scheme? Since the study is 13 years old it means nothing? I always like to look at what people who have used the drugs in the long term have to say. Healing the body is all about the diet we choose. Dr. Bergman does a good job of explaining it.


http://www.facebook.com/notes/ccsvi-in- ... 1295097210

http://www.askapatient.com/viewrating.a ... PerPage=60

http://www.youtube.com/watch?v=zGmyUppmt-g
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Re: Hi from SW England

Postby DrGeoff » Sat Aug 10, 2013 8:39 am

The best light that you can cast on the UK Risk-Sharing Scheme is that the cost of a DMD is much lower in the UK.
This does not suit the folk who could get a kick-back from a drug company, or those who want a high price to try and justify getting a non-approved medication paid for by the state.
Copaxone is under £7000 per annum to the NHS; the US price seems to be over £3200 per month.
In my book, that must count as a success.

Yes, listen to the people taking a particular medication. That is a very good, sound, idea. What a shame that the "askapatient" website is totally non-selective - so someone who had been on a DMD for only four days gets equal billing with someone who has been on that medication for (say) 4 years.

And, as for the idea that healing the body is all about diet ...
Proper nutrition is not just about the diet. It has to be matched to lifestyle. Some essentials cannot be obtained from any diet at all. Take that item that lots of experts believe is essential to our health called Vitamin D3.
You cannot get it from diet. It is either sunshine or a supplement. But, to make use of that D3 you have to have Magnesium. That you can get from a good diet (and it is far more important than just for D3.

But the big question is just what is a good diet.
"I cured myself from [insert condition here]. Just buy my book and I will tell you how". Does this sound familiar?
In the case of MS, a one-off cure could just be a long remission. Just as long as it's long enough to get a book out and start collecting those royalties.

Way back when I had a multiple heart bypass, I got a session with a Cardiac Nurse who was going to tell me what diet I should be following. Every suggestion that she made was just about what I was already doing - this was the so-called "Mediterranean diet". Olive oil, tomatoes, seafood, etc. I liked it then, and I still do.

And, as for Dr Bergman, there is another slick presenter who is not too worried about accuracy.
Putting Parkinsons Disease on a list of Auto-immune problems, when it is actually cause by a failure to secrete a particular neuro-transmitter chemical. I guess that just about sums him up.

Geoff
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Re: Hi from SW England

Postby cheerleader » Sat Aug 10, 2013 10:09 am

Welcome, Dr. Geoff.
Nice to have you here. It seems you have done a bunch of research, and as someone who is looking after his heart, you have an understanding of the connection to cerebral bloodflow in MS.
I went to a heart/endothelial research specialist, Dr. John Cooke, with my concerns for my husband (his MS showed up with hypercoagulation, high liver enzymes and petechiae--all signs of endothelial dysfunction)--and created this program based on peer-reviewed science and Dr. Cooke's book. You'll find a lot of cross over in your approach to heart health, and healing the cerebral endothelium. I give it away for free --no royalties for me :)
http://www.ccsvi.org/index.php/helping- ... ial-health

Welcome to the forum, and I hope you find healing and answers, and some comradery, too!
take care,
cheer/Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Hi from SW England

Postby jimmylegs » Sat Aug 10, 2013 12:22 pm

fyi, interesting free full text to help when doing the math on dietary d3:

An Evaluation of the Vitamin D3 Content in Fish: Is the Vitamin D Content Adequate to Satisfy the Dietary Requirement for Vitamin D? (2007)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2698592/
"Based on the dietary tables, it is suggested that salmon contains approximately 400 IU of vitamin D3/3.5 oz."
Table 1 http://www.ncbi.nlm.nih.gov/pmc/article ... /table/T1/
excerpts:
vit d3, IU/oz
Salmon, Farm 240 ±108 (9)
Salmon, Wild 988 ±524 (9)
"However, most experts agree that 1,000 IU of vitamin D3 is required if there is no exposure to sunlight (1–3, 6,7)."

Type of dietary fat is associated with the 25-hydroxyvitamin D3 increment in response to vitamin D supplementation (2011)
http://www.ncbi.nlm.nih.gov/pubmed/21816779
"The change in plasma 25OHD (nanograms per milliliter) during vitamin D supplementation was positively associated with MUFA, (β = 0.94; P = 0.016), negatively associated with PUFA, (β = -0.93; P = 0.038), and positively associated with the MUFA/PUFA ratio (β = 6.46; P = 0.014)."

presumably dietary fat ratios would have the same effect on plasma response to dietary d3..

http://en.wikipedia.org/wiki/Monounsatu ... al_sources
"...Monounsaturated fats are found in natural foods such as red meat, whole milk products, nuts and high fat fruits such as olives and avocados. Olive oil is about 75% monounsaturated fat...."

foods highest in monounsaturated fats:
http://nutritiondata.self.com/foods-000 ... 00000.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Hi from SW England

Postby NHE » Sat Aug 10, 2013 4:41 pm

DrGeoff wrote:And, as for Dr Bergman, there is another slick presenter who is not too worried about accuracy.
Putting Parkinsons Disease on a list of Auto-immune problems, when it is actually cause by a failure to secrete a particular neuro-transmitter chemical. I guess that just about sums him up.


Moreover, Dr Bergman's explanation of molecular mimicry completely misses the mark. It's not about the sheer number of antibodies as he implies. Molecular mimicry occurs when host proteins share a similar epitope to the target antigen. Anitbodies then bind to the epitope of the host protein and the immune system recognizes the antibody tag and begins to attack the host antigen as though it were a foreign antigen.
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Re: Hi from SW England

Postby want2bike » Sun Aug 11, 2013 6:56 am

Askapatient has a person who was on the copaxone for 8 years and now she needs a new liver. When you put drugs in your body you destroy your liver. That may be why there are not many long term users. Dead people do not talk. In my country Doctors and their drugs were the 3rd leading cause of death in July 2000. Dr. Bergman is one of many alternative healers who support the fact that the body can heal itself when we give it what it needs. Do you really think he is telling us a lie when he tell us of all the people he has healed? What do you think about Roger MacDougall's story? There are many stories about people healing themselves with diet but never seen anyone healing using the MS drugs. Yes, you can get temporary relief from your symptoms using MS drugs. Destroying your immune system may not be worth the temporary relief. We all make our own choice but the easy way is not always the best. Pay attention to the information out there and understand the drugs companies are making a lot of money on sick people.

http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://www.direct-ms.org/rogermcdougall.html

http://www.greenliveforever.com/healthy ... tion-claim


http://www.nytimes.com/2012/07/18/healt ... .html?_r=2
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Re: Hi from SW England

Postby DrGeoff » Mon Aug 12, 2013 2:09 pm

So what do I think about Roger McDougall's story? Not a lot, really.
Just what is this story? A personal account written by a Hollywood scriptwriter. But that is only the start.
The link provided by w2b takes us to a story that has been edited. We do not know just what changes have been made to a story that was written in 1980.
The editor thanks the Directors of Regenics Inc., UK, for allowing him to put it on the Web
The alarm bells start to ring now. Inc. is not a designator used in the UK, other than by the occasional foreign owned company. A few minutes searching revealed that Regenics Inc of Ohio were absorbed by the world's largest manufacturer of dietary supplements (Weider).
So, an edited story in which a scriptwriter claims that his remission was caused by his diet, is featured on a website promoting dietary supplements, supported by a manufacturer of - you guessed it - dietary supplements, edited by the man behind that website.
Is this supposed to be taken seriously?

As for Copaxone and liver damage ...
"One person is on Copaxone for 8 years and now needs a new liver"
And what other medication was she on? Not Paracetamol by any chance? Paracetamol is far more likely to destroy one's liver than Copaxone, and you do not need a script for Paracetamol (or its US alternative, Tylenol). I have been on a cocktail of medication (cardiac related) for 15 years now, and I do not have a destroyed liver. And, in two days I get the results of the latest set of bloods (every year another set of tests)

Geoff.
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