Lyme and CCSVI?

Hi, I'm new here. I am an MS dx who has an LLMD appt in 2 weeks. (Band 23 came back present on Western-Blot)

Anyway, it came up on another forum I am part of about CCSVI and increasing bloodflow to the brain.  During the procedure, the jugular veins are opened up to increased bloodflow through the brain.

Some people experience flulike symptoms after the CCSVI procedure which I thought might actually be herxing due to bacteria killoff from increased oxygen.

Have you guys discussed anythin like this before? CCSVI?

Thanks for tolerating me in the future! I've been lurking for the past week and you seem like a caring and informed group!

I was dx'd with MS in 2005. I had numbness in feet and lesions in spine and brain.

I am 40 now and my disability has progressed to the point where I am wheelchair bound.

What led me to look for Lyme?

None of the MS meds have helped and my nuero has suggested doing chemo (Rituxan). I wanted to cross some things off the list before I did chemo, so I had the Western-Blot done.

Doc told me over the phone I was neg for Lyme, but after I reviewed the bands I saw 23 came back positive. So I started looking for a LLMD and was able to get an appointment in 2 weeks. So I don't have a formal Lyme dx - just a hunch based on band 23.

Haven't started abx yet so don't know...

CCSVI (Chronic Cerebral Venous Insufficiency) is the notion that the jugular veins are constricted (unknown causes) and as a result lessen bloodflow through the brain. The azygous vein (which drains blood from the spinal cord) is also looked at.

Vein doctors (interventionalists) have been treating with angioplasty with varying results - some get better or worse or not at all.

It's highly controversial (like chronic Lyme)

I've had the procedure done twice with slight improvement the first time and none the second. I have progressed since then.

I really started thinking about Lyme after seeing "Under Our Skin" on Netflix one day. I was a landscaper in Texas and I remember being bit by a tick - so why not check it out?

I have read that Bb. can only tolerate small amounts of oxygen. I thoguht there might be a connection somewhere in there... could help explain why some MS and Lyme patients benefit from hypobaric chamber and oxygen therapy.

springsjean said...
So do you think you have MS OR lyme or lyme induced MS or possibly not MS at all but lyme?  As I am sure you know, many people with lesions on their brain from lyme are diagnosed improperly with MS.  My neuro tried to do so but I corrected him and left and never went back. 

I hope it's a misdiagnosis of MS because at least there's some hope of treatment with Lyme. At this point, I think I have Lyme-induced MS but who really knows? I plan on doing the abx so we'll see if I respond.

Hopefully the LLMD agrees!

Post Edited (don't lyme to me) : 8/4/2011 8:23:16 AM (GMT-6)