Nicola, have you seen this? CCSVI= Chronic Cerebrospinal Venous Insufficiency, the condition Dr. Zamboni is researching.
The CTV W5 report: “The Liberation Treatment: A whole new approach to MS” can be seen here: http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5
Multiple Sclerosis Society statement on CCSVI: http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206
List of Dr. Zamboni’s research: http://www.fondazionehilarescere.org/eng/pubblicazioni.html
CCSVI in Multiple Sclerosis on Facebook: http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297#
If you search CCSVI Zamboni in YouTube you’ll get 7 pertinent results: http://www.youtube.com/results?search_query=Zamboni+CCSVI&search_type=&aq=f (procedures included)
Thank you, yes. I read about the theory some time ago, and saw some initial video at the end of last week.
It makes sense. To a degree. It ties in with recent research on Crohn’s which has obvious implications for other autoimmune disease. It ties in with my notions about vitamin D. It offers–for the first time–a possible causative agent, a trigger for MS.
In the past, possible triggers offered by the medical community didn’t ring true to me, especially the numbers. Take for example the Epstein-Barr virus trigger hypothesis. Most people with MS have antibodies for EBV, researchers said, talking fast, their eyes sliding away. Not a 100%? I asked. Well, no, but most. I said, Okay, then, tell me why a significant percentage of the general population is also EBV antibody positive, yet they’re healthy. No answer. The theory is bullshit.
So now we have someone who comes along and suggests that 100% of the people with MS he has tested suffer CCSVI. One hundred percent. Every single one.
CCSVI involves the stenosis (narrowing) of veins, such as the jugular and azygos, that drain the central nervous system. When the CNS is insufficiently drained, iron deposits build up. The iron deposits do two things: kill axons (nerve cells) and trigger an autoimmune response. That is, the person with CCSVI gets MS.
If you fix the CCSVI, that is, reopen the veins and keep them open (remember that part; I’ll get back to it), the blood flow is restored. The CNS is properly drained. The iron build up goes away.
With the iron deposits gone, the autoimmune component of MS will eventually go away: no more sickness. The damage already done, both by the iron and the autoimmune response, will not. So if you’re blind, you’ll stay blind. If you’re crippled, you’ll stay crippled. But here’s the thing: the body is brilliant at recruiting alternate pathways for various tasks, so who knows what function could be regained in unorthodox ways? Especially without the on-going iron toxicity and the autoimmune disease.
So how does this tie-in with my notions that vitamin D, specifically, vitamin D deficiency, lies at the roots of MS? Well, vitamin D not only influences the immune system but it plays a role in the formation and maintenance of a healthy venous system. Double whammy.
I could go on, detailing at length why this makes sense to me (the new Crohn’s info ties in with my experience of immunomodulation and -suppression and the tuning-up-the-immune-system effects of using LDN, and this info doesn’t contradict anything in the CCSVI hypothesis) but that’s not really the point of this post.
The point, for me, is that I don’t want anyone else to tell me about this: I know. And I’m having a hard time. A little hope is a terrible thing.
Do I want it to be true? Yes, maybe. Because if it is true, then, oof, I not only have a lot of work ahead, but it might not make all that much difference to me.
If it’s true, I have to figure out how to get treated. It will be years and years before the medical profession accepts this. Even longer before the health insurance industry will. So I will have to find a skilled vascular person to map my veins (jugular is easy: it’s just non-invasive Doppler sonography; some of the other veins, eh, it can get complicated). Then find someone to fix the veins. Then maintain the veins. The fixing is done with balloon angioplasty. Balloon angioplasty tends to fails after two or three years; you have to have it done again. It’s not cheap. (And, remember, right now I wouldn’t be able to persuade insurance to pay for it. Frankly, I’m not sure I could persuade anyone to both mapping my veins, or to operate, either, even if I came up with the money.)
Add to that the fact that the study numbers so far are very, very small.
Add to that, the fact that veins freak me out. Seriously. It’s not the needles–I’ve injected myself subcutaneously so many times I’ve lost count, four figures at least; intramuscular isn’t a problem. It’s not the blood–hey, I’m a woman. It’s the veins. I have to lie down to get blood drawn because I pass out, whap. If I even see vein stuff on TV my stomach lurches and I have to look away (I have to mute it, too, because just the sound of someone slapping a vein makes me want to throw up). I am phobic.
The one thing–one thing (spiders, snakes, bats, whatever, not a problem)–that bothers me and it might be the key to my salvation.
Or, y’know, it might not. This might all be bullshit. I might get my hopes up, exhaust myself bullying doctors, beggar myself paying for it, end up with a psychiatric bill because it freaks me out so much, and it might not really work. It might stop working after two years and I’ll have to through it all again. It might halt the disease but make not difference to my current function. Or all of the above.
So how do I feel about this? Pretty fucking mixed.
9 thoughts on “miracle MS cure–uh-huh”
Re: Veinophobia. There are excellent, easy, extremely effective cures for phobia via hypnosis analogues. If you're interested, I'm pretty sure 30 minutes with someone can deal with your fear/feelings about veins.
Sadly, that's not really the hard part of your situation…
I have “Possible MS” and I've been trying to follow all of this; your description of what is going on is the single best I've found online, and the ONLY place where I've found the connection to Vitamin D spelled out. Thank you.
You gave a pretty good synopsis of it, but there's more collected here with videos if people want to see. Wow Zamboni has a neurological disease and his wife has MS. They said he treated her nearly three years ago.
Sounds like the stents are the way to go – more durable.
I can only imagine how colossally frustrating this would all be. My heart is with you.
If you decide you want to do this, a way will be found.
I expected this to be another snort & roll your eyes type bit of hype. The fact that you are lending this any credence is exciting. I have my fingers crossed.
thanks for addressing my question. It's unfortunate that we have to wait for so much research for this – angioplasty is common, and it almost certainly won't hurt anyone with MS to have it done.
I have a lot of sympathy for your phobia. I used to fear needles. Like throw up, pass out fear. Then I got a DVT and if I wanted to have another baby I had to give myself shots twice a day for 8 months.
I'm mostly over it now.
As for MS, I can't imagine it. Stents are a nice idea, they saved my life with my DVT. However, I'm now uninsurable. Not because of the DVT but because of the STENTS. Fuckin insurance companies.
the blue knave, the thought of hypnosis, of having to *think* about veins and *talk* about veins, makes me shiver.
haddyr, you're welcome. I hope the 'possible' becomes 'unlikely' for you (unless, of course, the alternatives are worse). Take the vitamin D; it won't do you any harm, and it's cheap.
jennifer d, yep. And, oh yep, there's always more info :)
mordicai, it could still be hype. I'll wait and see what this guy's paper looks like, and what other research looks like, etc. At this stage I honestly don't know what I hope for.
cebii, you're welcome. Yep, waiting sucks.
ssas, wow, uninsurable because of stents. Wow. Sometimes I hate the way this country works.
Nicola, I agree with you on all counts!! …We all have to stand up and be heard.. we can NOT let this stall in research and we must believe 2.5 million strong together with the people in our lives ..we WILL be heard!! Write letters..send e-mails…phone calls… talk to your health care providers till their ears get tired!! We CAN make a difference!!
Insurance companies will push this research.. the short term costs surrounding this diagnosis and therapy far outweigh the long term care costs of a chronic debilitating disease.
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