So has anyone else been tested for CCSVI yet?? Or working on it?? So far I think I've only heard one person here....
Posts: 56 | From California | Registered: Mar 2010
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MichaelTampa
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I am working on it. I am lucky to have someone local, but it is a 3-4 week to get an appointment. I'm on week 3 right now. No idea if the appointment will then be soon or another significant wait.
As I feel I have done a lot with abx and herbs, killed about all there is to kill, and still have very significant neuro symptoms, I am jumping at the idea that this could be a big (the big?) remaining piece for me.
I am doing a lot of stuff now for biofilm and on a very low-fat vegan diet (10%-15% calories from fat) for biofilm as well. Want to hope that this can take care of blockage, but still waiting to see if I have one and how serious it is.
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what diet for biofilms is this? I think the CCSVI is a key player. The question is this: is it the pathogens that have thickened the blood and thus damaged the veins or stenosed them or is it also a genetic defect that set your veins up for this? Some lyme patients that have had this done are educated more so in hypercoagulation so taking enzymes after the procedure instead of Plavix etc , I think will have a lower rate of re stenosis. I too am looking into this as we have a great dr in Newport Beach, ca that trained with Dr. Zamboni. Best wishes on your quest.
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MichaelTampa
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sk8ter, not sure what you're asking on the diet. Dr. McDougall (not a lyme doc) has put forward the idea that a very low fat diet can cure some conditions such as arteriosclerosis (clogged arteries). Dr. F. has suggested that this type of diet could be very helpful for biofilm.
Perhaps this diet could also unclog the CCSVI, but who knows, I don't know that any lyme doc has speculated that, it may just be my speculation. I remember hearing something about the lyme condition causing iron to oxidize in the brain and that is at least part of what is getting clogged, causing the CCSVI. But perhaps the biofilm is part of it?
Posts: 1927 | From se usa | Registered: Mar 2010
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Glad to here a few other are working on this too. I think it's real important we get to the bottom of this.Either way having it or not...
My prediction is this HUGE and somehow plays a key role in in our inability to recover as quickly or as much as we would like...
If not anything else it's a piece of hope that I has me very interested at the moment...
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So far I am doing well, still going trough Lyme&Co flare ups but I think I have been handling these symptoms much better than I did before the procedure.
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MichaelTampa
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coffee -- could you talk about what difference you think it made in the following days -- did you notice a difference, if so what changed?
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What is CCSVI?
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MichaelTampa
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Chronic Cerebrospinal Venous Insufficiency
This is a blockage in the vein(s) in the neck area leading from the brain back to the heart. Apparently iron is involved in this blockage and I don't remember the details on why/how about iron.
I don't know precisely how long this has been a topic, but in May at a seminar Dr. K. presented it as a fairly new topic and discovery. Dr. Zamboni from Italy discovered for MS patients many of their neuro symptoms were relieved by doing a procedure like angioplasty to clear the blockage. As such, this has apparently taken the MS world by storm as a new great discovery. Since MS is actually lyme, it makes sense that lyme patients would get checked for this as well.
Dr. K. spoke of one lyme patient who completely got her life back from this procedure, all neuro symptoms gone, but relief only lasted 4 days and the blockage was back. So, treating biofilm and thinning the blood can be a very useful step before getting the procedure.
Okay, that's about all I know on the topic.
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MichaelTampa
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Interesting reading on wiki.
Note that some of the criticism of the CCSVI theory of causing MS symptoms is that people with MS have viral infection and parents with MS, and other neuro disorders like Parkinson's and Alzheimer's have iron deposits, so CCSVI can't really be the cause of MS.
All that's missing is for someone to discover that lyme causes MS, Parkinson's and Alzheimer's and that lyme can be passed on in utero and this will make a lot more sense. Oh, wait, that's right, some have already figured that out...
posted
MichaelTampa- Why are we as patients the ones figuring this out lol Try telling telling that to a interventionalist treating so CALLED "MS" patients right now. Believe me they are finding out really fast here that they have been treating Lyme patients all along...
This is all going to blow up here in a few weeks I had to make a guess...Would make a great new story...
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springshowers
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I was told this diet too would help clear up vein issues and blockages that cause neuro symptoms and so it all makes sense does it now if that is true. And it is worth a try. And I have gone on this sort of diet too. I have had a new progression of neuro symptoms never had before and this helped in my decision to get on that diet and give it my all. And try to work on those biofilms.
And if those biofilms are helped and diminished we also are exposing the buggers who are hiding in them to the meds and the immune system and hopefully are also treating the infections in a better way too.
That is the hope.
Its always work in progress isnt it.
Thanks for all the info.
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