I have noted a Poll did, the number of people who are really struggling at the moment. It is great to see the support offered by this forum. However, the elephant in the room is that we are all struggling, and are somewhere on the EDSS chart slipping at different speeds until we get to 10, if we are brave enough. Back to the elephant, no-one is able to cure us, we all get different levels of support to cope with the effects of MS, but no-one seems to be making progress on the cause. It is complicated by the fact that often we seem to have a bespoke illness, ie MY MS. We need to try and cure ourselves to have any long term. I can’t remember when I first heard the term, virus, but is was soon followed by the phrase “I cant give you anything for it”. I am sure all of us are carrying one or more viruses, and I am starting to believe the virus spreads along heathy cells until it reaches the CNS which triggers the immune system into action, hence MS symptoms as it gets stuck into the myeline sheath. I contacted a neuroligist at Barts recently, to ask why the first line of treatment for MS isnt extensive blood tests followed by anti-biotics, but as most of you will know the current range of anti-biotics are not effective at treating viruses. I am on Tysabri (a DMD) and was recently diagnosed with the JC virus, the blood was sent to Denmark for testing, so clearly testing for a single virus is complicated let alone any of the thousands that exist. However, If we could remove the virus that to immune sysyem is attacking, maybe the body is able to mend itself, at least that would be the hope. Has anyone got anything to add?, the only thing I am trying is Samento a herbal supplement which I started yesterday, but I would be interested in any feedback and I really worry about all of us with MS, and hate what it does, I think of it as a jigsaw puzzle in reverse, every time I look another part of me seems to be missing!. My best to you all, Peter.
Hi, I think you’re right about the virus, but I think what we are all suffering from is the modern western diet. Our food is so contaminated with artificial flavourings, sweeteners, colourings, preservatives, pesticides, hormones, antibiotics etc., that it’s no wonder we’re ill…and not just MS. Look at the cases of cancer, obesity, stroke, alzheimer’s…it’s frightening. My belief, right or wrong, is that we all have Leaky Gut Syndrome which, for us, has led to MS. I’ve been following the Best Bet Diet since 2008, but switched to the Wahl’s protocol in August. I’m not knocking the various drugs that’s out there, but I know that route isn’t for me. It just seems wrong to put a load of chemicals in your body, when your body is already full of chemicals from the food we eat. No one has tested all the infinite combinations to see how they react together, so why do we expect prescription drugs to work? If our bodies were clean, maybe we might stand a chance. I’m doing a lot of reading on Leaky Gut at the moment and how fermented veg (a natural probiotic) can help. You’re right in that we need to help ourselves as much as we can. Heather
hi peter
i love your analogy of a jigsaw.
when frst diagnosed i said that i was like a set of christmas lights.
really noticeable when one goes but scary when one goed out every 2 minutes.
i have heard of people being treated for a virus and i think it was a sexually transmitted virus perhaps chlamydia.
they were treated by a cocktail of different anti-biotics.
i think this was in the USA
sorry my memory is a patchwork!
carole x
The viral trigger and retrovirus hypothesis is currently being tested by Barts / Royal London / QML and the clinical trial details can be found here: http://www.ukctg.nihr.ac.uk/trialdetails/NCT01767701
I find the Barts blog very informative:
http://multiple-sclerosis-research.blogspot.co.uk/p/charcot-project.html
http://multiple-sclerosis-research.blogspot.co.uk/2013/01/the-inspire-trial-charcot-project.html
http://multiple-sclerosis-research.blogspot.co.uk/2013/05/raltegravir-in-ms-recruitment-update.html
As my post with links has not been published (nor was a previous post about this trial, which is surprising as it is a formal clinical trial and those of us with this disease want to know about options!), I suggest Googling the following trial: Raltegravir (Isentress) Pilot Study in Relapsing Multiple Sclerosis. Details can be found on the official clinical trial websites and further information on the Barts MS research blog.
Thanks all Good stuff.Heather I have just finished watching “When the drugs don’t work” on ITV. As you say if only we could start again with a clean system. I feel a bit cheated as I have never taken drugs including paracetemol, dont drink or smoke and am a vegetarian but now take Tysabri which has killed my immune system!. The leaky gut theory is interesting. LooLaa I am a fan of the Barts blog, from memory (which can’t be trusted!) their trial is focusing on the Epstein Barr virus. I think it needs to be more extensive otherwise it will just be another case of “Not proven”. Carole, there is a youtube video of a man in the US who claim to have cured his wife of MS. He had a medical background and she had suffered from yet another virus. Take care all. Peter.
i take samento in combination with banderol.
Hows that working out for you purple-haze?