Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby notasperfectasyou » Fri Jan 02, 2009 1:02 pm

This is about veins!

Ok, I'm reading.

Marie,
I'm seeing recuring themes with my pet project the last two months. Please see the links I have put in my ABX thread on Heat Shock Protein 60 and MMP-9. I have the funny feeling it's all related.
Ken
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Postby Anecdote » Fri Jan 02, 2009 1:10 pm

AC, Marie and everyone else, this is all very interesting and I am still reading through all the links sent me by Marie about this.

Since I am one of the people having seen the most success by taking CAP antibiotics and never seemingly had much in the way of venous issues, it would be very interesting now if I could be tested for venous reflux in the brain. Since according to Zamboni that I must have had it, has this now cleared up? A case of which came first, the chicken or the egg.

The person in our household who I know had venous issues was my husband: he had severe cerebro-vascular problems but this has all cleared up by taking the same antibiotics as me. He also had something which looked rather like a web of small varicosities above one ankle which had been damaged in a motorbike accident when he was a student. This has now become all but invisible.

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 jimmylegs » Fri Jan 02, 2009 1:22 pm

heya ken, i responded to the iron comment because i wouldnt want someone who was iron deficient to give it up for fear of deposits.
although iron deficiency isnt so likely for men, it certainly is for the ladies.
but anyone can have elevated serum ferritin in spite of an underlying iron deficiency, when chronic inflammation is involved.
what im saying about iron and zinc together is: if you take zinc, it is anti-inflammatory and has been shown to bring the iron indicators down.
zinc is also beneficial for the veins, which this thread and zambonis research indicate are problematic in ms
and zinc has also been shown to elevate uric acid, another of the ms usual suspects.
so, i think zinc can start to address some of the factors that make both iron and vein function of concern.
i dont think its anywhere near as cut-and-dried as iron=bad therefore dont have any. i wish i knew more about how all these things interact in the human ecosystem!
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Postby notasperfectasyou » Fri Jan 02, 2009 1:30 pm

Sarah,
Do you or David think this would bed contrary to ABX thinking?

Jimmylegs,
Thanks. Kim takes one of these daily. Is this a lot?
Ken
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Postby cheerleader » Fri Jan 02, 2009 1:37 pm

TO Ken and Sarah and new comers to this wacky party...

It could very well might be that cpn is the mother of all vascular and autoimmune disease. But Zamboni isn't testing for the cause of vascular dysfunction.

Zamboni has found venous insufficiency down river from the brain and spinal column- specifically blockage in the jugular and azygous veins of all 65 MS patients he scanned. He calls them "stenosing lesions." Those with more progressive disease had more blockage in the azygous veins, closer to the spine. In his studies, he has linked the subtypes of MS (RR,PPMS, SPMS) to location of venous blockage.

And at the risk of sounding self-promoting (oh, what the hell!) I researched and developed a program for Jeff based on vascular observations I made since his diagnosis. It's the endothelial healing program on the regimens page. I do list cpn as one of the contributors to hypercoagulation and venous blockage in MSers, but the list is very long, and includes the MS hit list: vitamin D deficiency, stress, free radicals, toxins, EBV and saturated fats. All of the above have been linked in studies to endothelial damage and vasoconstriction of the blood vessels. Jeff had many problems at diagnosis 2 years ago...he is now mountain biking 25 miles again, no longer needing daily naps, and at EDSS<1. And the petechia (blood spots) on his legs have cleared up and no more bad headaches.

http://www.thisisms.com/ftopict-6318.html

Happy reading, and happy new year!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Fri Jan 02, 2009 2:45 pm

hey ken, it's really hard to say if she is getting enough, or not enough, or too much, without bloodwork, sorry :S

there are too many question marks... let's just say, the tolerable upper limit is 45mg/d. for men and postmenopausal women the RDA is 8mg, but premenopausal women need 18mg.
men are likely to get twice as much as they need just from food, while premenopausal women are likely to come up well short at only 12mg. postmenopausal women shouldn't need an iron supplement.

so the 28mg pill... i imagine that is the straight size of the pill, and that it delivers a lesser amount of elemental iron? please correct me if i'm wrong..

anyway when i need to boost my iron out of the possible or probable deficiency range, i have pills labeled 324mg (ferrous gluconate) delivering 37.5mg elemental iron.

when my bloodwork says my iron is okay, and when i'm on top of the daily regimen, i take a daily multivit for women. that product has 18mg iron ("citrate"). i don't know how much "elemental" iron that one delivers though.

has kim had her iron and/or zinc tested lately?

cheer i need to go take another look at jeff's regimen but i imagine zinc must be factored into it? - i think i remember your saying he took some daily? what was that amount again? i'll go see if i can find.
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Postby cheerleader » Fri Jan 02, 2009 3:06 pm

jimmylegs wrote:
cheer i need to go take another look at jeff's regimen but i imagine zinc must be factored into it? - i think i remember your saying he took some daily? what was that amount again? i'll go see if i can find.

you betcha, JL! He takes a combo tablet...calcium 1000, magnesium 500, zinc 50 mg.
Have to say, the biggest difference we noticed was with the EGCG/quercetin super anti-oxidant combo during the day, but I'm sure the zinc/mg/cal. has alot to do with it, too. Jeff takes over 25 supps. a day now, so it's hard to know what's doing what...but it's thanks to you I got serious about looking into all the supps. He's so much better-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Fri Jan 02, 2009 3:25 pm

that is so great cheer! how often do you get his bloodwork done?
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Postby jimmylegs » Fri Jan 02, 2009 3:38 pm

hehe! it's been a long time since i was up near 30 supplements a day :) that sucked.

so anyway ecgc/quercetin, more good antioxidants/antiinflammatories for sure.

and yep zinc at 50mg is sure to help with veins, bbb, fighting oxidation and inflammation, and all that good stuff too.

oh also has jeff ever had his uric acid tested? maybe that's in your regimen thread already... i'd be curious to see if you'd got him out the the ms ballpark using this approach.
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Postby cheerleader » Fri Jan 02, 2009 5:25 pm

Jimmy-
Jeff had low uric acid and B12 at his diagnosis. He also had elevated liver enzymes (AST and ALT 10x normal- I've since learned that the elevated liver #s are common with MSers at time of flare), as well as a high ESR. Yet his neuro said no connection... We've had Jeff's blood tested every 3-6 months by our GP. His B12 and uric acid are now high normal, no more liver enzyme problems. With major supplementation, everything is normal, including hormones. He does a monthly milk thistle liver cleanse. Sure you don't want to take 30 tablets a day again? 8O Jeff doesn't love it, but he was really sick and he likes feeling better...
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Fri Jan 02, 2009 5:57 pm

oh, doctors. SIGH!
one thing i never had was high liver enzymes. the only time i had it looked at was in prep for rebif, so you can imagine that was early days.
that is great that jeffs UA (and other stuff) is high normal now. is zinc in his regular bloodwork too? i went into excess over three months of sporadic 0 or 50 or 100mg/d supplementing.
anyway about the UA i am thoroughly expecting mine to be much better next time i get in for bloodwork, now that the zinc deficiency is identified and corrected (same for the excess hehe). fingers crossed :)
anyway, yea i'm good just taking this and that sporadically at the moment
actually i do have a milk thistle blend on the go just now, and a few other things. things were going haywire (it shows up on my fingernails) so i'll have to ramp it up for a while :)
it's really amazing how far people can come, and the doctors just shake their heads.
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Postby Anecdote » Sat Jan 03, 2009 6:04 am

Sarah,
Do you or David think this would bed contrary to ABX thinking?


Hi Ken, David wrote this a couple of years ago or more:

C pneumoniae is known to patchily parasitize the cells which line small blood-vessels, causing episodes of vasculitis. This is a local inflammatory process characterised by tiny punctures in the vessel walls and leakage of blood-components into the surrounding tissue space. It can be visualized directly in the retinal veins, where the vessels appear to be coated with a thin greyish sheath. This sheath is comprised of T lymphocytes. A very similar pathology takes place in the brain in early MS. The association between sheathing of retinal veins and MS was first made in 1944. The anatomical distribution of lesions within the brain in MS is often centred on small veins; elongated plaques may follow the sinuous curves of the vessels they surround. [Esiri MM, ed. Oppenheimer's Diagnostic Neuropathology, 2nd edition, 1996 Blackwell: 256-9.] Vasculitic phemomena were recognised surprisingly early: in 1873 Rindfleisch commented: "If one looks carefully at freshly altered parts of the white matter in the brain, one sees with the naked eye a red point or line in the middle of each individual focus, the transversely or obliquely cut lumen of a small vessel engorged with blood. . . All vessels running inside the foci, but also that traverse the immediately surrounding but still intact parenchyma are in a state of chronic inflammation." Rindfleisch had recognized, over 130 years ago, that inflammation of small vessels — vasculitis — precedes neural damage.

Examination of the eye reveals retinal vasculitis in about a third of persons with early MS, but it is probably present in far more. It is especially common following optic neuritis (a common precursor of MS), and is characterised by leakage of dye in a fluorescein dye test, blood cells, and cuffing of the vessel walls by inflammatory cells. Where it is seen, there is a raised likelihood that MS will follow. I have noted that episcleritis (an inflammatory condition of the connective tissue between the conjunctiva and sclera involving vasculitic features) is also a frequent finding in those with MS. (Unpublished data.)

MS is currently considered an autoimmune demyelinating disease. Myelin is an insulating lipoprotein; its sudden local loss causes the acute MS relapse. But this myelin loss may well be a secondary phenomenon. The very fact that retinal vasculitis is commonly associated with MS casts considerable doubt on myelinopathy being the root cause of MS; myelin, and the oligodendrocyte cells which produce it, are not found in the retina, and the earliest pathological manifestations of MS are in blood-vessels, not nerves and glial cells. Demyelination has recently been shown to be a secondary phenomenon in the acute, typical lesion of MS: the first visible event in a newly-forming fatal MS lesion is the sudden, orderly, non-inflammatory local mass death of oligodendrocytes, the cells which make and support myelin. [Barnett MH, Prineas JW. Relapsing and remitting multiple sclerosis: pathology of the newly forming lesion. Ann Neurol. 2004; 55(4): 458-68.] This casts further doubt on the notion of MS as a primary autoimmune disease. The removal of unsupported myelin by inflammatory cells may well be a secondary 'housekeeping' activity. We may be witnessing the beginning of a sea-change in thought. [Chaudhuri A, Behan PO. Multiple sclerosis: looking beyond autoimmunity. J Roy Soc Med 2005; 98: 303-306.] These authors cite ten important considerations about MS which cannot be explained by the concept of a myelin-specific autoimmune process.


from http://www.davidwheldon.co.uk/ms-treatment1.html

He thinks that an infection of Cpn is at the root of all this, I don't know except that going from my own experience and then his, he is probably right.

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 Anecdote » Sat Jan 03, 2009 6:19 am

Cheer, what you have done for your husband deserves every praise and I do find this very interesting, but as I said, as far as I know, my venous issues were virtually non-existent: a bit of retinal vasculitis, some episcleritis which is now virtually gone and, which I thought about last night, some nosebleeds which developed as my MS became progressive but which have also now gone.

Therefore it would have been interesting if I had been tested before starting ABX then retested now.

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 jimmylegs » Sat Jan 03, 2009 7:13 am

a quick initial search finds interesting linkage between zinc deficiency and purines (uric acid), susceptibility to cpn infection, retinal dysfunction, and immune disorders.
context is totally wrong geographically for correlating with ms, but it was the first result from searching zinc and cpn together:
http://www.ajcn.org/cgi/content/full/75/2/181
...A significant increase in the activity of AMP deaminase—an enzyme involved in the purine catabolic pathway—in the muscle of the zinc-deficient rats was also observed; this alteration may also contribute to hyperammonemia in zinc-deficient animals and humans (2, 3). Zinc supplementation in patients with SCD resulted in a significant improvement in secondary sexual characteristics, in the normalization of plasma ammonia concentrations, and in the reversal of abnormalities in dark adaptation (3).
...It is well known that patients with SCD are susceptible to infection ... Mycoplasma and Chlamydia pneumoniae are the most common infections associated with the acute chest syndrome in patients with SCD. It is believed that a large percentage of patients with pulmonary infiltrates probably have associated viral infections (6).
...A placebo-controlled trial of the effect of 50–75 mg elemental Zn/d orally for <=3 y resulted in significant increases in lymphocyte and granulocyte zinc concentrations and interleukin 2 production and fewer documented bacteriologically positive infections, numbers of hospitalizations, and numbers of vaso-occlusive pain crises (6). These effects were seen when zinc was administered in therapeutic doses.
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Postby CureOrBust » Mon Jan 05, 2009 12:45 am

Today I spoke to the lab (ie face to face with the Sonographer in the lab) that will hopefully be doing my doppler tests. At first she was a little overwhelmed, I think. She read the 1 page list of the tests, and then read the main article. She said "but we don't have an incline bench". I told her, that it was not necessary, as the final tests are only laying down or sitting upright.(They used an incline bench in the original study "methods")

The problem is that the actual Dr's will not be in till next week. She will talk to them about this when they come in, and get back to me (ie she said 7-10 days). She said they may even "pop" in during this week. I left a few of the published articles with her.

To hedge my bets, I called Phillips Medical Supplies here in Australia today, and asked them if they could provide me a list of clinics that had purchased the IU22 Ultrasound equipment (it looks to me as if it could do the job). From which I got a list of 5-10 clinics, 2 of which I called today. Both wish for me to fax them the list of tests I require. I will be faxing them pg8 of zamboni's last article, which lists all the tests. I do not wish to fax them anything else, as I think it will simply confuse the issue.
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