EBV/CCSVI/MS - congenital?nutritional?both?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby sbr487 » Tue Aug 10, 2010 12:45 am

se1956 wrote:Again the argument for some doctors:

... there are many, many smokers without lung cancer and vascular diseases, therefore smoking cannot be the cause of these diseases....

Things are not that black and white unfortunately. Only certain genetic mutations cause cells to multiply rapidly (in other words, cause cancer). Smoking definitely causes mutations but your current genetic makeup could be so far away from risky mutations, you might smoke all your life and still end up without cancer. While some people whose genetic makeup is such that it might take few years worth of mutation to end up with cancer causing mutation. Please note that mutation is an accumulative process.

* Recent study by UK's Singer institute gives more info about mutation and cancer.
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Johnson » Tue Aug 10, 2010 1:42 am

jimmylegs wrote:for myself, i'm still trying to figure out how congenital venous issues could be responsible for all the documented nutritional imbalances in ms patients. it's really beyond me so far.

I believe that it has to do with "motility". I can't explain it coherently, but as the body is forming, all comes from a "mid-line", or central formation. Think of cellular mitosis. As the organs (especially) form, they migrate to their "mature" positions - away from the origin at the "mid-line". There is a kind of tension stasis that develops - the organ wants to go back to mid-line, but is held in the mature position by motility. If that motility fails, illness results.

I had what I thought was brilliant digestion; regular and abundant. I was told (by a very good cranio-sacral massage therapist) that I lacked motility in my liver, gall bladder, pancreas and stomach/intestine, with just a small motility in the spleen. "But my digestion is great", I retorted. She responded that I was passing the food as a bolus, but was not absorbing nutrients. Something that I have noticed since my own "Liberation" is that my chronic breath problems (eww) are resolved, I am gaining weight (finally) and, ahem... when I wipe my arse, it is clean - there is no residue. I realize that is a bit graphic, but it is a fact that the longest-lasting benefit from my treatment is a better bowel function - where I thought I had no trouble.
My name is not really Johnson. MSed up since 1993
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Postby L » Tue Aug 10, 2010 4:39 am

1eye wrote:As far as I know it has never been tested.

You probably have you know. It's standard practice. Anther thing they rule out before you get the MS diagnosis.

I remember the second neurologist I saw realised that my first had forgotten to order the B12 test. He got really excited and told me the (slim) odds that it may turn out to be a vitamin deficiency. The prospect really cheered him up.
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Postby BooBear » Tue Aug 10, 2010 4:56 am

I was on the Swank diet for two years- and frankly, it was the best two years I had since my dx. When I had a major relapse in 2008 and started on the Solu-medrol and chemo nightmare, I went off Swank. I was just discouraged. It was stupid.

I am happy to report that I am back on the diet- and after not taking any interferons for two months now, I am feeling much better.

I believe there is both a congenital and nutritional link. Vitamin D3 has been helpful for me (actually, I believe D3 was the reason I had some lesions shrink). We may be predisposed to venous malformations that are impacted by nutritional and environmental factors.

I think I am an anomaly, however. I read stories about PWMS who are in far more advanced stages of disability than I am with fewer than 10 lesions. I have flipping 36 lesions as of my last MRI (July 30). I walk fine. I don't have major balance issues. My left arm is numb (an unfortunate souvenir of my 2008 relapse), but I have regained movement in my left hand for the most part. I have fatigue issues, but I manage. I have some cognitive issues, but nothing major. I have no idea why I am at a EDSS 1.0 with this many spots on my brain, but I have hopes that I can defuse the ticking time bomb in my skull this Friday when I get Liberated. :)

By the way- I am getting a complete health overhaul. Friday is step one. I will also quit smoking on Friday. Be prepared for bitchy BooBear. :) Swank diet on, exercise program on. It's time for my life back, and I am giving it every available advantage I can.
Three veins angioplastied.  One renewed life.  
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Postby jimmylegs » Tue Aug 10, 2010 5:15 am

Why have I never heard that?

if you do not have a personal history with b12 deficiency, it would not have formed a large part of your own research focus.

b12 was THE research focus for me, in the early days. not one neuro questioned me when i mentioned my b12 history, the folks at the MS clinic just ran the test.

Nobody ever tested me and said "you have B12 deficiency, so you have MS."

remember we are talking about a *differential* diagnosis. that is why they said "you do *not* have b12 deficiency, therefore it is ms". if i had done a washout before all my b12 tests over the years, they would have said "you have b12 deficiency therefore you do not have ms". possibly, it never would have gotten to the point of an ms vs not ms decision.

As far as I know it has never been tested.

i can send you some links if you want to read up.

I guess you would be one of those who thinks CCSVI is treatable with chemistry.

hyperbole. and incorrect.

I agree that we can't blame ourselves or our lifestyles for our MS. I don't smoke, drink, am not overweight, my diet is not full of junk food, I don't do illegal drugs (but too many legal ones)

oc, you can have a relatively normal developed country lifestyle and still be low on important nutrients for general health, and low in key nutrients that are known to affect ms. cheer has published on this idea; check it out if you're interested.

i don't think, i *know* that my own lifestyle was *a factor* and i would encourage everyone, ms or otherwise, to get key levels tested, in addition to whichever other care options they choose to pursue.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby TMrox » Tue Aug 10, 2010 6:18 am

The magazine New Pathways Jan/February 2010 is packed with lots of useful advice on

nutritional strategies to tackle CCSVI,
muti vitamins,mineral supplements,
fish oils,
special feature on CCSVI and
the Epstein-Barr virus.

You can download the free magazine at:

Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby dlb » Tue Aug 10, 2010 7:06 am


Your MS story really mimics my own - lots of lesions, all very small but an EDSS score of zero. I have a little tingle or numbness on my R big toe that has hung on since my last relapse (Sept, 2006) but it only plagues me if I am tired or stressed. It is my reminder to "chill" and get some downtime.

Congrats on going for the treatment & very best wishes! Look forward to your feedback. VERY BIG CONGRATS on your decision to quit smoking - if you believe that CCSVI and vascular anomalies are key for us MSer's, then smoking is a bad thing (well it is any way you look at it, right?!?) and I'm happy for you that you are kicking that "bad boy" to the curb!

All the best...
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Postby shye » Tue Aug 10, 2010 10:04 am

it is a fact that the longest-lasting benefit from my treatment is a better bowel function - where I thought I had no trouble.

This is fascinating--have any of your drs speculated on the Why of this?
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