posted
Apparently a aprocedure to address this probleem is now available to MS sufferers, and has been used with a few Lyme patients. Veins to the head are widenened by inserting and inflating a small balloon in a simple procedure to improve blood flow to the brain. Does anyone know anything about this?
Ali
Posts: 17 | From Australia | Registered: Oct 2010
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posted
Yikes. I would rather try other things first. Every other thing.
Posts: 8430 | From Not available | Registered: Oct 2000
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I came across a reference to CCSVI when I was searching youtube for Lyme Disease affecting the brain.
There is a video on there by "Thane17" called "Lyme Disease Destroys the mind" When I watched it, it was exactly what my son is going through with mind problems. So I checked to see if he had any more recent videos and there was one named "Lyme Disease and CCSVI" where he describes having this surgery done in Atlanta by a Dr. Z. from Italy trained surgeon.
It's well worth the watch. If only to see the day and night transformation this man has seen. He explains it pretty well in the video and also gets into how there are only 2 people he knows of with Lyme who have had this surgery done (as of Nov 13th, 2010)
I sent these videos via email to my son's LLMD and she called me to talk about it. She feels we are a long way off from getting this surgery approved for an 11 year old. It is planted in her mind as a viable option if he continues to get worse.
My biggest worry is the damage this is doing to my son's brain. He's confused a lot. He can't read. He loses his thoughts mid sentence. He forgets things. He stares off for long periods of time. He can't play games like he used to. The constant migraine headaches since June have to be telling us to relieve the pressure. I believe this surgery can help with this. It helped Thane!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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OMG! I can't thank you enough for this video. This explains a lot.
I have to share a story. I started Plaquenil back in February or March. And, one of the first things I noticed was my veins looked HUGE. I'm already a pretty fit guy, but I had never seen my veins like that.
I told the doctors, and they didn't think twice about it.
Well, about two weeks into my treatment with Plaquenil, I started getting intense neuropathy. I couldn't handle that amongst other symptoms, so I had to stop.
But, the lightbulb went off in this video when he talked about the girl who was getting worse because the veins in her neck had opened up.
I'm convinced that Plaquenil did something to open my veins up, and the infection went crazy after that!
Posts: 829 | From MD | Registered: Dec 2009
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posted
There are two ways to look at this. In the MS world on ThisisMS.com ...one can ask did the bacteria clog up the jugular veins first to start the stenosis ...or is some of this congenital? On that site is all the info you want for this procedure including drs that are doing this here and in Europe.
Some have stopped to do clinical studies and there is much pressure from Big Pharma. Some have done the balloon with it returning others are doing stents. With our situation the concern would be that when opened the bacterial is released so to be on antibiotics,herbs would be a safer deal. There is a huge fight with Big Pharma trying to stop this but University of Buffalo and Stanford are doing the studies.
I would think taking enzymes like Lumbrokinase, rechts-Regulate could make a huge difference. You must have the ultrasound done to the Haacke protocol or it will not show up. I have a MRA done for TOS that showed my left jugular 1/2 the size thinner than the right. When I asked the vascular surgeon is he concerned he said you probably were born that way !!! That was before I knew about this.
Some have gotten better others the same and others have had to repeat this. They have been doing this for vascular issues for years so you don't have to have MS to have them look at this.
By the way most Neurologists are poo-pooing this..they get their money from Big Pharma for MS drugs...It is as controversial as Lyme !!!
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Are you suggesting the enzymes Lumbrokinase or Rechts-Regulate are supplements to open clogged veins? Have you tried this yourself?
What is the Haacke protocol, and where can I find more information about it?
This is huge for me. I don't know what it means yet, but it just seems exciting!
Posts: 829 | From MD | Registered: Dec 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by sk8ter: Some have done the balloon with it returning others are doing stents.
I would think taking enzymes like Lumbrokinase, rechts-Regulate could make a huge difference.
Regarding the stents, a study has finally shown that using stents to open up the arteries in the neck causes more deaths than using the balloon.
I agree with Sk8ter that systemic enzymes would likely help. They reduce the inflammation and gradually remove the buildup of the gunk blocking the arteries.
I've been taking Wobenzym, which has reduced the body pain and the daily headache down to a much more manageable level. Rechts Regulat is on my list of things to try.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Go to ThisisMS.com and look under CCSVI...That is the best website for all the latest info. Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
I just have one question about enzymes. Are they safe to take with antibiotics, or do I need to be cautious about interactions?
Posts: 829 | From MD | Registered: Dec 2009
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I think everyone takes them with abxs..It thins out the blood and helps break up biofilms. You just need to take them away from food otherwise they act as digestive enzymes which is not what you want from them.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
i ve been looking at this for awhile. i believe that it is worth me finding someone who knows how to do the proper ultrasound to see if veins are bent and or blocked.
i have a long neck, have had multiple whip lash injuries and have some symptoms that point to this. while enzymes help with many things..like thining the blood if your vein is bent, knoted up, or twisted physicaly keeping blood from flowing then enzymes aren't going to help.
i am on the west coast, standford is doing it but they have closed their wait list. there is a place in newport beach that for some reason makes me uncomfortable. i plan on getting this test done once i find someone i can trust. i will have to weigh how bad it is to the risks involved with any proceedure but i want to know if this is adding to the problem.
there is also a technique called the Perrin technique. it is a manual therapy done by DO in england. it is suppose to do a similiar thing but no one is doing this in the US. i made many a phone call and contacted them in england.
if you are intrested google the perrin technique for cfs.
Posts: 161 | From sonoma county | Registered: May 2009
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posted
It seems that anything that will facilitate blood flow to the brain is helpful. I feel significantly better after a vigorous head massage.
If the brain of a LD sufferer is hypoperfused with blood, addressing this in some way has to help symptoms. Does anyone know what is supposed to be responsible for this hypoperfusion? Lymies including myself often complain of neck stiffness - could it be that tense neck muscles constrict blood flow to the brain?
Ali
Posts: 17 | From Australia | Registered: Oct 2010
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