The other 2 are a before and after this CCSV1 procedure. You do not need to watch the entire video to get the idea of the before and after. My worst symptom that doesn't go away is brain problems. This procedure entails opening the veins in the neck that get blood to the brain. It makes sense to me.
posted
hum yeah but as long as the infection is still there, veins will restenose... so I don't think it's worth the investment...
Posts: 723 | From Montreal | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I sent these to my LLMD. I came across them by accident... I was searching youtube for videos using the keywords lyme disease affects brain... and found the video you listed first.
I watched the entire video thinking... this man reminds me of my son. In a lot of ways. The pause, the frustration, the pain, the forgetfulness and slow nature... the hopelessness.
I was sad. I saw in his comments that he mentions teasel root is helping him and I made note of that.
Then I clicked on his youtube name to see if he had any more recent videos... and found the one on ccsv1...
Great stuff. My LLMD says it is not likely that we will get this approved for an 11 year old and we are years away from that... but still keeping it in mind if he is still suffering in years to come.
I might persue it if I were as bad as my son...
I have a friend who has MS which is similar to Lyme in so many ways... I sent her the link. She was thinking of traveling to Italy for the operation so it is good to know they are doing it in the US. She tells me it is very restrictive (limited # of people accepted)and entirely experimental.
-------------------- 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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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I could totally relate to the guy on this video. The brain stuff takes away who you are as a person. After watching the first video I thought, this is so depressing. There is no hope for brain problems.
I then watched the second video. I couldn't believe it was the same guy. I am considering getting the test to see if the blood is flowing. Although I am pretty much out of money.
My theory is that this is one of the reasons that exercise helps. it forces those arteries (or veins) to open up and get oxygen into the brain.
Posts: 2232 | From USA | Registered: Aug 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
They're doing it in the U.S. so no need to travel out of country.
CA, NY, GA, RI, IL are some states where there are doctors doing it. I have a list if someone would like to investigate.
The procedure is just is a vienogram what Interventional Radiologist do hundredws of times...angiograms are on the arteries.
I just had it done Nov. 11th in R.I. as part of a clinical trial - w/Brown University.
It is done by an Interventional Radiologist. I had 3 stenosis, L. Jugular, Right Jugular & in the Azygous.
The test for it is just an ultrasound but as the doc told me...got brain lesions more than likely got stenosis in or all of the "draining" veins.
Even if ultrasound didn't show anything they still find stenosis during the vienogram.
The lesions were the key criteria for the trial.
The doctor said, doesn't matter what caused the lesions (lyme, concussionetc.), it the build up of toxins from "Cerebrall Spinal Venous Insufficency" -
R.I. gave me the pictures on a disc of the procedure. If you click fast on them it's a video. Cool to watch how & when the doc ballooned them open.
You are awake & watching the screen. At times the IR had me hold my breathe as he opened the vein.
Mine were approximately 50% closed. My husband thought 50% didn't seem like a big deal but apparently the body thinks it is.
The ultrasound showed what they called Collateral...new small veins by-passing the stenosis (kinks) Creepy.
Yes, I thought my brain was clear after Lyme/Babs treatment...wow, I was in a dream auto-pilot state then.
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Haley wrote a long PM & lost it since your mailbox full. UGGGH
It is not a "crazy" procedure. I.R.s do it all the time for heart, dvt, varicose vein surgeries.
ultasound only 20mins long. The 2 hr one is ...not necessary. Also not necessary to meet 3 of the 5 criterias of the zambonia protocal. Even if the ultrasound doesn't show any "collateral or reflux", they find stenosis in the veins.
I try to tell my "MS" email people what I've learned during mine but they're so gullible if it's not a huge ordeal they can't believe it.
The brain lesions are the indication the venogram is needed.
Curious as to if you ever had a brain SPECT scan and if so what that report said?
If I read your post correctly it has been about a month since you had the procedure? What if any symptoms have improved?
Unfortunately I can't watch the videos on my computer until I get some work done on it.
Hubby had a standard doplar ultrasound done on his jugular veins about 3 years ago that was supposedly normal. But his MRA shows that he is missing one of his cerebral arteries -- probably a congenital birth defect. Neuros have said that this is probably not affecting brain blood flow but we are not so sure.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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