last CCSVI blog post for now

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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last CCSVI blog post for now

Post by Loobie » Sun Apr 17, 2011 8:43 am

Well I updated my blog with my last CCSVI entry until something else shakes loose and if/when new ground is broken. It's my last since you all know who read my blog that I've had some progression in my left leg. Well going by everyone else's stories of progression post treatment, I could have re-stenosed. Well I didn't at all. Matter of fact my jugulars were kind of novel to the Dr. since they were flowing so incredibly well. I guess lots of folks have even had problems with clogging stents. Not me! And my azygous was flowing fine too. Read up and give me your comments!

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Post by numbness23 » Sun Apr 17, 2011 11:39 am

man im sorry that sucks. Im glad to hear your blood is flowing but sorry for performing all you have and still progression. Goes to show there is something else messing with us. Hang in ther Loobie and keep the faith. Hopefully the science will catch up..
One day we will find that these diseaseas(rrms,Spms,PMS are completely different.

I went throuhg the procedure a year ago and was fully ambulatory. Now i am in awheelchair. Believe much as i wish it was "it" its not.

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Post by Johnson » Sun Apr 17, 2011 1:07 pm

I'm sorry for the woes of both of you. Sincerely.

I only allude to it here because I am not certain yet (of the efficacy of the protocol), but I have been convinced of a bacterial factor in "MS" since before I was even definitively Dxd in 1993. It took me a long time to get the information together, and then to find a doctor willing to participate, but I finally got started on an anti-biotic protocol in September 2010 - 4 months after my first angio (brilliant results that faded over a couple of months) and 1 month before my 2nd, (completely ineffective) angio. By December, I was getting quite messed up, but since, I have been feeling better and better. This month (April), I am not wall-walking anymore, my fatigue is much, much better, the dizziness has subsided markedly, but still no doubt, I have "MS".

It could be the Spring that is making me feel better, it could be that psychosomasis is preparing me for my trip to see Doc. Sclafani in May (for some reason, I have always been able to function for really important things), or it could be the Abx protocol, or a combination of these things.

There have been many studies over the years that have led to the dismissal of the bacterial hypothesis, but I would assert that they were not long enough in duration (many bacteria have life-cycles that span months, and many bacteria are able to go very deep into tissue, and many are able to "cloak" themselves in macraphages, etc. Many also have the ability to alter DNA transcription). I believe that it can take several years to overcome the bacteria with low-dose, pulsed abx, and that a lot of studies "gave up" too soon.

Dr. Luanne Metz, of Calgary, Alberta did a study with minocycline - link to google links -
Canadian researchers, lead by Dr. Luanne Metz of Calgary,aimed to investigate the efficacy of combined glatiramer acetate(GA) plus minocycline treatment in people with relapsing-remitting MS, by comparing a group receiving GA plus minocycline with another receiving GA plus placebo. Forty-four participants were randomized to either minocycline 100 mg twice daily or matching placebo for 9 months as add-on therapy. They were assessed at screening and months 1, 3, 6, 8 and 9. Forty participants completed the study.

Compared with glatiramer acetate/placebo, glatiramer acetate/minocycline reduced the total number of T1 gadolinium-enhanced lesions by 63%, the total number of new and enlarging T2 lesions by 65%, and the total T2 disease burden. A higher number of gadolinium-enhanced lesions were present in the glatiramer acetate/minocycline group at baseline; this was incorporated into the analysis of the primary endpoint but makes interpretation of the data more challenging. The risk of relapse tended to be lower in the combination group.

Treatment was safe and well tolerated. The authors conclude that results showed a consistent trend favouring combination treatment.

As minocycline is a relatively safe oral therapy, The authors conclude that further study of this combination is warranted in relapsing-remitting multiple sclerosis.
(from Squiffy at MSRC) It is to be noted that Metz has also undertaken other studies with mino. - most recently in CIS. She must think there is something to it...

That study only went for 9 months - which I consider not long enough. I am 7 months into the protocol now, and it is a different protocol than Dr. Metz used, as I am taking 100mg every other day, and also taking olmesartan 4x day. I also cut out any supplementary Vit. D in September.

A good resource is for some of the rationale.

If valvular problems are indeed congenital, it could be that the bacteria are the tipping point that causes a cascade of other factors, which leads to our first, and subsequent self-destruction. It could be that those who do not benefit from PTA, or benefit only to relapse quickly, or not so quickly, have greater bacterial loads, or a less efficient immune system. My feeling is; if PTA did not do all we might have hoped, why not try a relatively inexpensive, and relatively benign course of minocycline?

I suppose I will never know - in myself - if it is the Abx or the PTA that relieves me, as I am having PTA again next month, and if that is the end of "MS" for me, I will not know for certain which factors were the reason. I had considered not having another PTA until after a couple of years on Abx, but have decided that I am not so altruistic, and I have some compelling reasons (we all do, I know) to end this now, in whatever way is effective. This will be my last PTA outside of Canadian medical coverage though, as I cannot afford any more.

The abx protocol costs me about $150/month, so it is not an egregious sum, and for those who have had PTA, stents, etc., that did not do the trick, what do you have to lose? The minocycline alone is about $40/month.
My name is not really Johnson. MSed up since 1993

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Post by CaptBoo » Mon Apr 18, 2011 9:28 am


Please take the time to report more about your visit to the orthopede. Right now my biggest challenge is my left knee. Like you, the procedure did nothing for my left leg. When it gets tired it lands incorrectly and that caused me to hyperextend it a month or so ago. That hasn't improved either. I need to keep up the exercise, but that causes extreme pain in my knee. Anyway, if you find anything that helps, please share.
<div>There be no dragons   ...Reese Palley</div>

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