Jasper
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| posted on 6/7/12 at 01:30 PM |
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For those with or friends/family with any autoimmune/chronic illnesses
I'm posting this on here as this information came as a complete revelation to me and my wife and I wanted to make sure anybody else with similar
health problems has the information too. I haven't posted it on here to get anybody's opinions or views - you're all welcome to
them!
My wife had ME/CFS for 7 years till 5 years ago which she got rid of and since then has had recurrent bad health until a few weeks ago when she was
diagnosed with Sarcoidosis, another chronic autoimmune disease, the only recognised treatment for which is steroids and they've no idea what
causes it.
Whist doing extensive research on the net I came across a new way of looking at and treating autoimmune disease called The Marshall Protocol. They and
many others are doing extensive research into a bacterial cause for all these conditions for the last 10 years. It has been discovered that over 90%
of the cells in your body are non-human - they are bacterial and fungal. They are now DNA sequencing all the bacteria found in the human body, well
over 1,000,000 strands compared to the 22,000 that we have.
So if you have or know anybody that has any autoimmune disease like Sacoidosis, CFS, Lymes Disease, Cardiovascular Disease, Fibromyalgia, Anemia, etc
etc it might be worth a look, as the current medical thinking seems to be lagging behind.
And if you think this is rubbish then remember the two Australian scientists who recently won the Nobel Prize for discovering Peptic Ulcers are caused
by bacteria, NOT stress as had always been previous thought.
Here's the web site, it's over 400 pages long to date so takes a bit of reading! I've been reading it on and off since Sunday and my
head is spinning.
http://mpkb.org/
We've ordered the drugs and will be starting this hopefully next week.
If you're not living life on the edge you're taking up too much room.
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BenB
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| posted on 6/7/12 at 01:52 PM |
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It's worth giving it a go on the basis that it's worth giving everything a go and keeping an open mind.
I would just like to point out one fact- people with ME / CFS who have a fixed idea regarding the aetiology of the illness have been shown to have a
worse prognosis than those that keep an open mind. The thinking is that those who have a fixed idea (typically regarding a microbial cause) limit
their treatment options. The best ME / CFS (as you'll know) outcomes comes from treating it in lots of different ways simultaneously e.g. graded
exercise, medication, psychological intervention etc.
Certainly in some cases CFS / ME is microbial- I saw an interesting case in a patient who had chronic shigella infection. But probably not in all- my
own gut feeling is that it's a collection of patients with similar symptoms and a similar immune response but where the trigger varies. In some
cases it will be microbial but probably not in others.
One size doesn't fit all. Unless you're 100% sure about the medication I'd suggesting discussing it with your GP (you may have
already done this). Not from a point of view of "should I be doing this" but just so they can advise whether monitoring of blood tests etc
is needed.
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Westy1994
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| posted on 6/7/12 at 02:07 PM |
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Thanks for the link, passed it over to my sister who has had M.E for more years than I care to remember, I suspect she is aware of it already, but
sent it anyway.
Rich
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Jasper
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| posted on 6/7/12 at 02:26 PM |
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quote:
Originally posted by BenB
It's worth giving it a go on the basis that it's worth giving everything a go and keeping an open mind.
One size doesn't fit all. Unless you're 100% sure about the medication I'd suggesting discussing it with your GP (you may have
already done this). Not from a point of view of "should I be doing this" but just so they can advise whether monitoring of blood tests etc
is needed.
Some good points there Ben, if you check out the web site there is a very large section for GP's and specialists, you may find it interesting.
The treatment takes the form of 6 hourly doses of a drug called Benicar or Olmesartan - a drug licensed for use with people with hypertension. It is
an extremely safe drug according to the FDA and shows no toxic levels. This is combined with a total removal of Vitamin D from the diet and from
sunlight, no direct sunlight on the skin at all. Because UK GP's are only allowed to prescribe this drug for it's approved use, it is
impossible to get GP's in the UK to prescribe it for you (in the US it has now been licensed by the FDA for this use). We have to import it from
an on-line company (which others have used for many years and the drugs are genuine). There is also, later, the use of a low dose pulsed antibiotic
too.
This therapy last for years, many people stay on it for the rest of their lives, and the success rates (shown by tests and general feeling of
well-being) for diseases with no know cure like Sarcoidosis are remarkable. And what's the alternative? A brief period of feeling better on
Steroids followed by a slow decline to more symptoms and more illness and with the steroid side effects to.
We are going to try to get either our GP or a local friendly rheumatologist on-board if we can, though to be honest we don't hold out much hope.
The regular blood test for this is the 25D Vitamin D test that a local lab will do for us for £50 every three months to make sure it's kept down
to approved levels.
I would suggest to anybody with thoughts or comments about this to have a good read of the web site first. There is some truly ground breaking
research going on there.
And Ben, you're absolutely right about an open mind with ME. I worked with many people with ME for a few years and it was ALWAYS the ones with
an open mind that recovered, my wife was one of them. Those waiting for a medical 'cure' are going to be waiting a long time. This therapy
is no easy fix, but a long slow path to better health by slowly killing off the bacteria that are causing the problem.
[Edited on 6/7/12 by Jasper]
If you're not living life on the edge you're taking up too much room.
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Steve Hignett
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| posted on 6/7/12 at 02:34 PM |
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Your post (and the brief foray into the first few web site pages) are very interesting Jasper.
I am (currently) very lucky in-so-far as that I don't have or know someone, with an autoimmune disease, however I tend to watch most technical
hospital based soaps and very much enjoy a world that is not my own...
I am on a series of drugs for my own problems and am intreagued by how drugs work...
One thing I would say though, I'm not sure I'd post up the name of the drugs that your wife is taking in full, just in case some idiot
reads it as granted that they are ok for them and then blame you - I know it's a negative point and an exaggerated one at that, but I think
it's worth being cautious in that area...
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wilkingj
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| posted on 6/7/12 at 03:50 PM |
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Whilst I dont have ME (well I dont think so) I am always tired, and exhausted even imediately after 8 hours sleep!
I got like this 20 years ago after getting Guillian Barre Syndrome (My imune systems attacked my nervous system).
I have always wondered if there has been some other cause or underlying issue.
Thanks for the heads up.. Its given me something to look into.
Ain't this just a Wonderful Forum..
Thanks
1. The point of a journey is not to arrive.
2. Never take life seriously. Nobody gets out alive anyway.
Best Regards
Geoff
http://www.v8viento.co.uk
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snakebelly
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| posted on 6/7/12 at 06:39 PM |
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As a current sufferer of Lupus ill be printing this off to have a read, thanks for the info
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whitestu
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| posted on 6/7/12 at 06:46 PM |
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Interesting!
I have had a couple of auto immune issues - I got really bad arthritis in my 20s after food poisoning from eating snails, and also had Iritis in my
30s.
Both got pretty much completely better, but apparently I have a tissue type called HLA B27 that pre disposes me to conditions like this.
Stu
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Jasper
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| posted on 9/7/12 at 08:57 AM |
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Glad some of you found it interesting  I'll post how my wife gets on with it over the coming months.
If you're not living life on the edge you're taking up too much room.
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