Idea's for compatible med's while waiting for 'the call'

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

Idea's for compatible med's while waiting for 'the call'

Postby jay123 » Mon Oct 19, 2009 4:25 pm

I am impatiently waiting for my call from Dr. Dake (info sent to him 9/21).

In the meantime I meet with my neuro this week and after 14 months of tysabri I am still progressing, I want to change. I am hoping for the stents, but even with them I think I will stay on some med anyways for a while.
I have been seriously studying the abx protocols, but I figure my doc is going to be unhappy with the surgery I also don't want him unhappy with my meds. I am on ltd and part of the insurance company reqt's are that I am receiving appropriate medical care, I can't have the doc report that I am not getting it.
So, any ideas on med's which might be a good partner with the surgery?
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Postby mrhodes40 » Mon Oct 19, 2009 8:05 pm

I can't say what would be right for you, but will offer that I take copaxone. It originally was going to be a "decoy" for the immune system turns out it doesn't work that way, but I believe the more recent stuff offers some protection effects for nerves as well as an anti inlammatory effect

No matter if MS is CCSVI is the cause of MS there is still some overactive /over zealous immune activity causing some of the damage.

I know WObbly takes Tysabri......... just thought I'd throw that in
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you... This is my regimen thread Read my book published by McFarland Health topics
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Postby radeck » Mon Oct 19, 2009 8:12 pm

Hi Jay, this is a non-orthodox answer but your question didn't come with any restrictions, so I'll go... I've been taking Lisinopril for about two months now and it seems like it has calmed my immune system down. It's a standard hypotension medication based structurally on the venom of a Brasilian Viper. There was an article by Steinman (who was instrumental in the development of Tysabri) et al., showing that it's more effective than Interferons and Copaxone in mouse model. It has a well-understood mechanism which makes it plausible that it will also work in MS, and it has very few side effects (none in my case). Although I have low-normal blood pressure to begin with, it's not affecting it noticeably, so I'm happy taking it. You'd have to find an open-minded physician though who'd be willing to look into the research with you and prescribe it if it makes sense to her/him. It's generic ($10/month) and simply based on the mechanism of the drug I'd say it's worth a try if you start with a low dose (breaking the tablets in pieces) and monitor your BP closely.

Reference: ... d_RVDocSum
Last edited by radeck on Mon Oct 19, 2009 9:21 pm, edited 1 time in total.
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Postby jay123 » Mon Oct 19, 2009 9:00 pm

Copaxone is about the only thing I haven't tried, I'l bring that up.
I will do some research on the viper venom, sounds interesting! BUT, the one thing I like about CCSVI is I think its about the first thing out that those dang mice that keep getting cured ahead of us haven't tried!
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