EBV/MS relationship..is there or isn't there?

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Postby sojourner » Wed Dec 12, 2007 1:35 pm

Hey Bromley!

"I disapprove of what you say, but I will defend to the death your right to say it." -Voltaire

These are words I live by, do you?

I don't think we need thought police----A British Dick Cheney is so unappealing!
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Postby bromley » Wed Dec 12, 2007 2:54 pm

Sojourner,

My only similarity to the police is that I am interested in the evidence behind any claim, treatment etc etc. I think all of us should have the right to challenge each other.

I think that EBV has some involvement in MS as a possible cause or trigger. This is based on my assessment of the various research I have read. The recent findings of EBV in MS brain tissue (95% of the cases examined) is strong evidence in my view.

I am also (as a recipient) a big fan of Campath 1-H. The Phase II results (over 300 in the study) demonstrate the high efficacy of this treatment. The reduction in EDSS scores is based on a neuro undertaking the assessments who is blinded to which treatments we received. This strikes me as good evidence.

Cpn may well be involved as a possible trigger or cause of MS. But the evidence in my view is not strong. I have seen no evidence of Cpn being found in the brain tissue of MS patients. There is no formal trial of abx for Cpn in MS sufferers that I am aware of / have seen. Some are reporting what appear to be impressive improvements, but I don't think the EDSS reductions claimed have been validated by neurologists. I thought an EDSS of 7 was someone with serious mobility problems etc and an EDSS 2 is no visible disability (which I am). I think there is a real danger in making such claims which have not been independently assessed. Reductions like these are almost miraculous and may easily sway MS sufferers into starting the abx regime. Unfortunately, it does not appear that all who follow the abx regime see such impressive results.

I am also unclear as to how many patients with MS are taking abx and what the overall results are (% better, % worse, % no change). This is the sort of information I would want to see before starting a regime of strong abx.

I'm not sure why pointing out these concerns should be such an issue. I would expect to see good data / evidence from any treatment trial (even an unofficial trial such as with abx).

MS sufferers are, of course, free to take anything they wish. But when users of one treatment regime flag up extraordinary improvements, then someone should be able to ask questions about the proportion of those following the regime who have had similar results. We need good data / information to make choices about which treatment regimes to follow. I think this is currently lacking for the abx regime. But I am happy to be proved wrong.
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Postby Anecdote » Wed Dec 12, 2007 3:27 pm

Well, how about this, then?

http://www.thisisms.com/ftopict-4841.html

Where is the evidence of people with MS getting drastically better by taking acyclovir?

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby sojourner » Wed Dec 12, 2007 5:01 pm

Stop spinning...no one denies you the right to challenge abx'ers (or whatever it is you label us).

Challenge all you want.

I was only offended because I came across some research that adds to the EBV discussion. We don't know the relationship with EBV and MS, but it shows up time and again.....is it the chichen or the egg or the Coc qa Vin ? Noone knows. It is an interesting article and shows there are some researchers out there thinking out of the box.

You seem defensive, maybe there is another reason for this obvious hostility lurking below the surface. I wonder.
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Postby Anecdote » Thu Dec 13, 2007 8:06 am

One reason is that he came to see David to start antibiotic treatment, but in the very early stages apparently had a relapse, which is quite common especially in a household of snotty nosed youngsters, so he stopped got himself put on an interferon and had an even worse relapse.

Now, as everybody must know, because he talks about it so much, he is taking Campath, the monoclonal antibody which would have made me, with progressive disease, worse.

My Addenbrooke's based neurologist has disowned me because of choosing abx and, perish the thought, benefitting from them, leaving me to rely on both consultant radiologists and my "microbiologist with a special interest in virology" husband to supply my evidence, but radiologists are experts at reading MRIs and microbiologists specialise in infections.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby cheerleader » Fri Dec 14, 2007 9:34 pm

People...
can we all just get along? (I'm an eldest sister, so I'm always trying to make peace. Plus I want to help my beloved husband heal.) Please read the new research out of Stanford that Dom posted- we are all right.

http://www.thisisms.com/ftopict-4862.html

The protein the researchers have isolated causes the cascade of destruction in the CNS...it goes after any foreign invader that breaks the blood brain barrier...be it Cpn, Lyme, EBV, who knows what else? My husband's bloodwork has shown a Lyme infection. Does that mean Sarah's husband David's ground breaking work in isolating Cpn in MS patients is wrong? Of course not! His research is helping so many.

There are many invaders in this mystery. I, personally, am excited that the protein involved in "disconnecting" the CNS synapses is being isolated. That's something we can all get behind-
AC
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Postby Anecdote » Sat Dec 15, 2007 6:58 am

AC, I'm an elder sister too, but I fought like anything with my younger one, or rather she fought with me, until one day I tied her up to a lamp post dressed in her wild west gear.

I had read the Stamford research: its jolly good, but I must say that it wasn't David who did the ground breaking work: that belongs to Stratton and Mitchell at Vanderbilt. He just found out about it and tried it on me, because I seemed so toxic to him. Now he and Stratton work together on papers.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby sojourner » Sat Dec 15, 2007 7:58 am

Ha! I'm a youngest sister and remember distinctly being tied to the staircase once........I, of course, was completely innocent of any wrongdoing....just a victim of older sister abuse!! I mediate nothing--I fight for survival :lol:

As far as my perspective on this incredulous disease goes. I don't argue as to the specific pathogenic cause of MS. The basic disagreement is this. Some, like Bromely, believe in a pathogenic trigger and a later autoimmune mediated process. Others believe in an ongoing infection (or combo) causing the damage. I belong to the latter group.

Cheerleader!
Just some background on me- I'm also a caregiver to my husband with MS. He has high Cpn titers, Lyme specific antibodies. I also have a 16 yr old who presented with neuro/psych symptoms who has a postive Lyme IgM and is postive for both Bartonella henselae and quintana, has elevated Cpn titers, high Ebv levels, so you can bet your bippy that I believe in complex multiple causation in this mixed up soup--er disease.

Good luck with your husband!
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