This Is MS Multiple Sclerosis Knowledge & Support Community

Hi!

There is a lot more going on, contributing to certain symptoms than just ccsvi. its far more complex than that.

So much focus is being given on just one anomily that the bigger picture is being lost and ignored.

yes main bloodflow will be re established to increase circulation, there may also be a placebo affect relieving stress/anxiety which can effect hinder mobility etc so certain areas will flow more easily.

but that is just my opinion. I have little interest in ccsvi because I do not have circulation problems, my problems have been caused by a dodgy Atlas.

But I certainly understand others avid interest i it. but because there is no factual cause, other possibilities need to be investigated.

again just my opinion ok

Fiona

CeCe, has there been any change since your procedures with respect to sinus infections and/or sinusitus? I am wondering whether you think opening the major veins might resolve these issues.

Can't say one way or the other. I had a minor sinus infection, left-side only as usual, during spring allergy season, but I also had a 60% restenosis in my LIJV sometime between February and July. I don't typically have sinus issues in the summer so I'll know more if there's a difference this coming winter.

AlmostClever wrote:I haven't gone through the rest of the CCSVI-Lyme links that popped up when I searched but I started to think about this:

Alot of diseases like Lyme are caused by bacteria that are oxygen intolerant or low-oxygen tolerant.

What if increasing blood flow not only provided more oxygen to oxygen-deprived cells in the brain and spine but at the same time killed off these bacterial infections?

Might explain why some improvement take an extended period of time like 6+months.

Just a thought...

Very interesting ... I was thinking along these same lines here:

http://www.thisisms.com/ftopicp-165905-.html#165905

zap wrote:Perhaps we are infected with a pathogen that causes the veins to stenose (and restenose), in order to provide itself with a more favorable environment in which to flourish in our brains.

It would hardly be one of the more amazing ways in which parasitic organisms of all kinds are known to modify host physiology (to say nothing of behavior) in order to benefit themselves. And it's not uncommon ...

Perhaps Lyme, or some similar organism, irritates the blood vessels in order to reduce flow into the brain - allowing them to thrive in the lower-oxygen environment ... this could explain restenosis in previously fine blood vessels, perhaps.

... and if the idea sounds far out to you, here are some examples of the many ways that infections can modify a host to suit their own needs - not just their simple physical systems, but even their behavior:

(note: the following links are not about MS or CCSVI! Ignore if you're not interested ... I am kind of fascinated by this stuff.)

http://news.nationalgeogra​phic.com/news/2007/12/0712​06-roach-zombie.html

http://www.zoology.ufl.edu/bolker/eep/notes/week5.html

http://www.boloji.com/rt3/rt278.htm

http://www.boloji.com/rt3/rt279.htm

http://discovermagazine.com/2000/aug/co ... he%20world

http://discovermagazine.com/photos/04-z ... ntrol-them


Toxoplasmosis - parasitic protozoan that makes rats unafraid of cats, and in humans it seems to change hormone levels, sex ratio of offspring, psychology (infected men tend to score higher in paranoia, whereas for women toxoplasmosis seems to lead to higher levels of social trust and sexual promiscuity), and more ...

http://www.corante.com/loom/archives/20 ... asters.php

http://www.bio.net/bionet/mm/parasite/2 ... 04385.html

http://human-infections.suite101.com/ar ... d_behavior

http://www.livescience.com/animals/0704 ... urine.html

http://www.msnbc.msn.com/id/32388708/ns ... e-science/

---

"The parasitic Nematomorph hairworm (Spinochordodes tellinii) develops inside land-dwelling grasshoppers and crickets until the time comes for the worm to transform into an aquatic adult. Somehow mature hairworms brainwash their hosts into behaving in way they never usually would – causing them to seek out and plunge into water."

- http://news.nationalgeographic.com/news ... asite.html

- http://www.newscientist.com/article.ns?id=dn7927

Zap - thanks for following up on this!

Now I think we're getting somewhere!

My daughter and I went to Las Vegas last week and each had a Doppler ultrasound, MRV, and x-ray at Centennial Medical Imaging. The information will be read by a radiologist and later by Dr. Haacke, himself. So soon we will know whether we have ccsvi.

In my previous posts I have noted that we have a diagnosis of lyme disease and not ms. In my effort to learn about ccsvi outside of ms I came across an interesting blog by a lyme patient that attended a seminar by Dr.Klinghardt. He is an MD, I believe, from Germany, that is well known in the lyme community. Much of what he does is alternative medicine. I should warn that the information is hearsay, of course, but if the note taker is fairly accurate there is some fascinating information. Among other things it is indicated that 38 of 38 lyme patients that have been tested have ccsvi and that 100% of his MS patients, autism patients, Parkinson's patients, ALS patients, and Lyme patients have been positive.

http://www.betterhealthguy.com/joomla/b ... eyond-lyme

Contrary to some approaches I think it is wise to consider possibilities you may not have been concentrating on. I think the whole search for a "cause" which is the same for everyone, like the malaria mosquito, can be a red herring. If CCSVI is a syndrome, doesn't it mean that it can have multiple causes, and multiple effects? Genetics, age, exposure to toxins, exposure to less friendly quantities of bacteria or more lethal pathogens or organisms, may be making many more susceptible, or may complicate the disease, or may cause primary damage. In something as broadly defined as "MS", some things will never be ruled out.

I still think the ulcer bacterium, possibly combined with the right genes and the right age, can cause atherosclerosis, and may damage venous circulation, possibly already compromised by a weak collateral circulation coping with something else.

Like the man said, it's too early to commit to any one thing. "More studies are needed" is motherhood; it should not cause roadblocks, as if learning more will waste us all. Convince me! I can take it.

Bad symptoms have a way of finding the shape of their container. I don't think CCVSI work is going to be stopped, even by "big pharma." The sooner we can all agree on that, the sooner insurance companies will realize they can make more money from health of CCSVI patients than from sickness of pw'MS', even if some IRs and vascular surgeons have to make more money too, in the process.

Hi Danz and All,

I deeply appreciate this thread, as we are dealing with chronic venous insufficiency and Lyme AND only being able to learn about CCSVI via the MS groups.

I agree with Danz, many symptoms associated with stenosis and MS are similar. We cannot know if they are triggered by the same factors, but as our bodies are a whole system I think it's likely.

The challenge we are trying to address is how to prepare the venous system for intervention so as to avoid reperfusion and then how to support healing of the venous system post intervention. That's something we share in common, aye?

Trisha

Carobiner wrote:The challenge we are trying to address is how to prepare the venous system for intervention so as to avoid reperfusion and then how to support healing of the venous system post intervention. That's something we share in common, aye?

Do you mean reperfusion (tissue damage in the brain when it gets suddenly oxygenated) or restenosis (the odds of the vein's stenosis reasserting itself, requiring a repeat procedure)? We've talked about restenosis a lot her but reperfusion only a little.

Some of our guesses on how to support the venous system post intervention are exercise, diet, not inclining the bed, a variety of supplements, aspirin or whatever anticoagulant protocol the IR suggests, and luck.

Danz wrote:CeCe, has there been any change since your procedures with respect to sinus infections and/or sinusitus? I am wondering whether you think opening the major veins might resolve these issues.

Ok, now that I've been through most of a winter (tulips are coming up any day now, right?), I can say that I have been abnormally healthy this winter. Not a single sinus infection. I have also caught far fewer colds. For years now I've been telling my husband he has a superhuman immune system, because he'll shake off a cold that knocks me out for two weeks, or he'll not catch at all whatever illness the kids bring home. He brought it up a few weeks ago, saying now I was superhuman too. (I probably define "normal" as "superhuman"....it's all relative!)

I started with Lyme in 1994 when I got Bells Palsy, I knew nothing and my doctor didn't either so I was given steroids and all was good. Until 1998 when I as in a severe car accident I had a TBI and whiplash, again I did nothing but from there my health started to get worse. It took three years after the accident and 7 years after the tick bite to be diagnosed with MS. But it gets better, in 2010 I was tested for CCSVI, my testing was read by one of the best radiologists, Dr. M. Haake and I had CCSVI, hmm. Long story short I was treated for it and when the balloon was dilated I heard crunching in my neck, that was when I got my life back and also when I realized my neck was severely out. So yes CCSVI is fantastic it helped with all of my symptoms allowing me the time to try to get the proper care for my neck injury C1-C5 all damaged. Also allowing me to decide with a fully functioning brain what I am going to do about the Lyme that I have had for over 20 years?
All I can say is CCSVI checks off more boxes in Lyme than it does MS and I checked them all. If you have the symptoms than it may work for you as well. Yes a neck injury can cause damage to the endothelial cells and damage your veins as well as Lyme and MS.