Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 I had a half-hearted Doppler. How have you been since your treatment? Thanks for the good wishes - I'll keep you posted. Janet To: mscured From: ephilipp@... Date: Thu, 7 Oct 2010 16:35:29 +0000 Subject: Re: CCSVI I would very much agree with you. I think that many doctors don't test with the correct protocols and when they do find and treat blockages, they often disregard 'minor' flow disturbances as unimportant. I also think that many doctors aren't identifying azygous issues. Dr Zamboni and Dr Tariq both find issues in a majority of patients whereas doctors in Belgium and Germany are not. I think the major ijv blockages are the easy obvious issues but unfortunately some of us aren't the easy fixes. I still believe being treated, albeit only partially, was absolutely worthwhile for me, but I do believe I have more issues to be addressed. (I was treated in Germany in August--40% blocked left ijv and 10% right) What tests did you have done in Spain? I hope you have great results in Poland! > > > I had a test a few weeks ago at a local hospital here in Spain and was told I don't have CCSVI. However, I also found out that none of the MS people they had tested had it, nor any in the general populace, and it therefore did not exist! > > > > I do not believe this for one second and presume they are not doing the tests correctly, no doubt to disprove the theory. > > > > I am down for CCSVI testing and treatment in a couple of weeks' time in Poland. If I can just prove my neurologist wrong I shall be very pleased; walking will be a further benefit. > > > > I'll keep you updated. > > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2010 Report Share Posted November 1, 2010 'PS I feel that a sound dietary protocol is even more important than pre-CCSVI treatment so please ensure your diet stays in check!' lol It's Janet you're recommending to stick to the BBD - THE Janet - the one who knows just about EVERYTHING about the BBD (and supplements and most other things too! - the best to go to with a question EVER) and who sticks to it more religiously than just about anyone and who is the reason I first 'gave it a try' and who has encouraged me and given me any answer I needed from day one. I don't think she has anything to worry about in regards to keeping her diet 'in check'! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: freewitheft@... Date: Mon, 1 Nov 2010 00:26:39 +0000 Subject: Re: CCSVI > PS I feel that a sound dietary protocol is even more important than pre-CCSVI treatment so please ensure your diet stays in check! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2010 Report Share Posted November 3, 2010 dudley yeaterday sent you an importnt e amil ing neuro tomorro am totaly numb had totoe an inside moti a on imuan which plan to ds and rebif any sugeston pease still smoking but willquit toy hoest walk huse only a few times feet n flo r onexixtent ant legs uppertorso and arms and ahands ace and head andinside mouth totally numb please help deb copeland Subject: Re: CCSVI To: mscured Date: Wednesday, November 3, 2010, 9:03 AM  Hi Everyone, A recent study has shown no association between MS and impaired cerebral venous drainage. For more information, visit http://www.msif.org/en/research/ms_research_news/noabnormalcrania.html Best regards, Dudley Delany http://profiles.yahoo.com/dudley_delany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2010 Report Share Posted November 3, 2010 I don't care how many studies disprove the CCSVI link, one only has to look at the amazing results people are having. Many tests (certainly in Europe) are being done incorrectly and thus not showing the true results. Mine is one. I had CCSVI tests done in Spain, the left jugular not performing the same as the right was noted but was decreed normal. Upon tests in Poland (which I saw on the monitor) there was 100% stenosis seated, 65% lying. I don't call that normal! Janet To: mscured From: DudleyDelany@... Date: Wed, 3 Nov 2010 13:03:53 +0000 Subject: Re: CCSVI Hi Everyone, A recent study has shown no association between MS and impaired cerebral venous drainage. For more information, visit http://www.msif.org/en/research/ms_research_news/noabnormalcrania.html Best regards, Dudley Delany http://profiles.yahoo.com/dudley_delany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2010 Report Share Posted November 7, 2010 i have done everyting except go natural and stick to diet and ldn in beginning og 2nary diagnosis did ldn and diet twice c got eemission gor bronchitis was smoking and losr gave up and went to conventional what it got ne total haead to toe snssory lost and now ms waknes of all nerves and muscles even inside mouthand thros noe eecting breting qit smoking 2 mos ago to go on plasma dr thougt good candidate got stromnger but he thought it woul stsbilix ze nerve dsmage did not wha i did wrong had to tske dteroids and di not test or pasce myself and walked milwuakee fr hs sfter treatmnt hene eerything cme cck ten fold had car accient in milwialkee which trsma body bad fo ns i believe slso why teatment failed trama always stops treament i am tkaing and doe not lalow a new one to srt effetiveness waas rrms for 20yr wit complete remissions stopped diert becsme bulemic overworke 12 hrs a day all behavior that led to onste of diesease only concentional med that has worke in3 yr is novsntrone remision in 5 dys knowcked out when someone hit me in car on way to dr never sine 0 tx has anything workerd i returned to smokimgbad decisonnow on crash coirsse towhelchair i beliee wetn from walking soneduy 1 1hr to struggling 5-10 min theywant me on tysabri jsur=t started 5 dy course of iv steriod s whch usually help 12 hrs later now nothing wakkenimg never aproble now all muscles entie body head to fee sensory loss serioa and weakmesss mobiltiy deterity effected \do u thin any hope if i tr conventional and stop amoking agsn and die t all please respond thanks deb c Subject: Re: CCSVI To: mscured Date: Monday, November 1, 2010, 11:29 AM  Thanks for pointing this out to me ..... I would never have known that Janet knew " EVERYTHING " about the BBD even though I have been on this message board since 2007. :-) For others, I am merely pointing out that CCSVI is not the whole answer and diet surely plays a huge part in any progression or recovery. Cheers, Pinda > > PS I feel that a sound dietary protocol is even more important than pre-CCSVI treatment so please ensure your diet stays in check! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 i received another email from dr diethrich at the AZHI in arizona and he told me that he is confident that they will be resuming therapy for ccsvi in january. Re: CCSVI I know of two locations in California....the Hubbard Foundation in San Diego, and Pacific Interventionalists in Newport Beach (Los Angeles area). Both have websites. Alice > > I am also confused about where in the states one can do this. I think I read the > Albany doctor has a waiting list until September 2011. Arizona is temporarily > closed down. Tampa is doing it but I don't know how much experience they have > and Dartmouth as well. Those are the four I know of. I guess I need to start > making calls. > > It is also tough not to know which doctor has the most skill with this > procedure. As we all know, the skill of the doctor can make much of the > difference in outcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 i have learned that fish oil is recommended for those who live in warm climates in the winter because they have exposure to the sun, otherwise you'd use cod liver oil. green tea is supposed to be excellent as a natural antioxidant and ip6 inositol hexophosphate dissolves the iron build up in the brain but does not effect the iron attached to hemoglobin. i am in the process of ordering another bottle of ip6 from vitacost. it's cheapest there. including shipping it is less than $15. i started on the ip6 after the procedure. i ordered 240 caps @500 mg. each and am starting on my second bottle. i figure i must have lots of iron since i have had symptoms for 30 years. we're all in unchartered waters doing the best we can following liberation. maybe soon a protocol will be developed. Re: CCSVI Thank you. Fish oil as opposed to cod liver oil? I'm getting conflicting opinions on green tea. Why do you think it's beneficial? Did you take ip6 before the treatment? > > i'm happy for you allison. you won't regret it. i've found that fish oil after the procedure will keep your blood from clotting and ip6 will dissolve the free iron in your brain. cups of green tea are also beneficial post procedure. good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2010 Report Share Posted December 31, 2010 I read that if you are on blood-thinners (after angio) then to steer clear of fish oil, Vitamin K, Vitamin E, Vitamin C, horse chestnut, ECGc AND I have just found not to take butcher's broom either. They all interact as they further thin the blood. I'd gradually decrease them before treatment, it might help stop bruising so easily. Can't wait to stop the aspirin and go back to these good old natural supplements. IP6, milk thistle (I think it crosses the BBB) and pycnogenol all cross the BBB and detox iron. Janet To: mscured From: DSP592@... Date: Thu, 30 Dec 2010 20:31:55 -0500 Subject: Re: Re: CCSVI i have learned that fish oil is recommended for those who live in warm climates in the winter because they have exposure to the sun, otherwise you'd use cod liver oil. green tea is supposed to be excellent as a natural antioxidant and ip6 inositol hexophosphate dissolves the iron build up in the brain but does not effect the iron attached to hemoglobin. i am in the process of ordering another bottle of ip6 from vitacost. it's cheapest there. including shipping it is less than $15. i started on the ip6 after the procedure. i ordered 240 caps @500 mg. each and am starting on my second bottle. i figure i must have lots of iron since i have had symptoms for 30 years. we're all in unchartered waters doing the best we can following liberation. maybe soon a protocol will be developed. Re: CCSVI Thank you. Fish oil as opposed to cod liver oil? I'm getting conflicting opinions on green tea. Why do you think it's beneficial? Did you take ip6 before the treatment? > > i'm happy for you allison. you won't regret it. i've found that fish oil after the procedure will keep your blood from clotting and ip6 will dissolve the free iron in your brain. cups of green tea are also beneficial post procedure. good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2010 Report Share Posted December 31, 2010 I'm sure you'll be fine once you have it done - I think it's great that you're on the path!! RachAel 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: alpdesigns1@... Date: Thu, 30 Dec 2010 19:46:04 +0000 Subject: Re: CCSVI Thanks . It might be awhile before this happens but knowing that it's a possibility has taken some of the stress away. --- In mscured , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 Hello, I just bought a new computer and it brought up 8,000 e-mail that I had missed. Almost all were from the mscured group. Needless to say, I can't read every one of them. I was especially interested in the comments made regaing the Liberation Treatment, CCSVI. I was diagnosed in 96 and lost a good job (couldn't get re-elected). I had almost lost hope but this treatment gives me hope. I'm in the midwest so the opportunity is limited.  What can you tell me about it? ________________________________ To: mscured Sent: Fri, November 19, 2010 8:05:25 PM Subject: Re: Re: CCSVI  i received another email from dr diethrich at the AZHI in arizona and he told me that he is confident that they will be resuming therapy for ccsvi in january. Re: CCSVI I know of two locations in California....the Hubbard Foundation in San Diego, and Pacific Interventionalists in Newport Beach (Los Angeles area). Both have websites. Alice > > I am also confused about where in the states one can do this. I think I read >the > > Albany doctor has a waiting list until September 2011. Arizona is temporarily > closed down. Tampa is doing it but I don't know how much experience they have > and Dartmouth as well. Those are the four I know of. I guess I need to start > making calls. > > It is also tough not to know which doctor has the most skill with this > procedure. As we all know, the skill of the doctor can make much of the > difference in outcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 anyone interested in ccsvi should go to a website called: ccsvi-ms.ning.com. they have all kinds of information from around the world on ccsvi. you may also try writing to: liberation@.... they have knowledge of 22 different locations around the u.s. i hope this helps. good luck. if i had to do it all over again i would in a heartbeat. i feel so much better. Re: CCSVI I know of two locations in California....the Hubbard Foundation in San Diego, and Pacific Interventionalists in Newport Beach (Los Angeles area). Both have websites. Alice > > I am also confused about where in the states one can do this. I think I read >the > > Albany doctor has a waiting list until September 2011. Arizona is temporarily > closed down. Tampa is doing it but I don't know how much experience they have > and Dartmouth as well. Those are the four I know of. I guess I need to start > making calls. > > It is also tough not to know which doctor has the most skill with this > procedure. As we all know, the skill of the doctor can make much of the > difference in outcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Hi everyone, Edie's question has prompted me to get this out to everyone to help anyone else who has any similar questions. This info is what I generally send out to anyone who wants to know about CCSVI if they are a 'starter' in regards to learning about CCSVI. Hope this helps people get their head around CCSVI - there's plenty more indepth information to be had from all the sites that I've included in this for you. Look further into what makes up blood and how ferritin assists restenosis etc too. 1- 2 - 3 - Go to 'CCSVI in Multiple Sclerosis' on facebook for GOOD info - it's run/was created by Joan and her husband's the US guy who was spoken about/shown in part 3 of the YouTube vids. If you just type in CCSVI in the 'search' panel of any Facebook page and you should find your local CCSVI group no matter where you're from - the UK Group's gd, 'Healthy Talking' which is the EHC's Facebook group, is also good to give some updates, MY group is 'Michelangelo'S Angels' and helps inform members of what's happening around the world through the articles I receive each day. I send out papers for people to study and learn too - that way they can have the info in their head and can quote stuff and no doctor or neuro can treat them like a fool. I've got heaps more that I can send out to people too. The best places to start are Zamboni's papers and the stuff on Facebook in CCSVI in Multiple Sclerosis and you should go to ThisIsMS too - that site will give anyone a lot of info and give you lots of stuff about Sclafani, Haacke, Zamboni and the other big CCSVI names. Some websites people should get to know: http://www.multiplesclerosissurgery.com/where-tested-ccsvi.html http://my.clevelandclinic.org/disorders/vascular_abnormalities/vs_may-thurner_sy\ ndrome.aspx - something you should get them to check for too http://csvi-ms.net/en?page=1 & order=title_2 & sort=asc http://www.ccsvi.no/ http://www.fondazionehilarescere.org/ www.essentialhealthclinic.com All these sites will give great info. Apologies if others have answered with the same sites etc already, I just thought the information might help anyone who's interested and needs a place to start their CCSVI research journey! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: DSP592@... Date: Fri, 7 Jan 2011 23:17:13 -0500 Subject: Re: Re: CCSVI anyone interested in ccsvi should go to a website called: ccsvi-ms.ning.com. Re: CCSVI Hello, I just bought a new computer and it brought up 8,000 e-mail that I had missed. Almost all were from the mscured group. Needless to say, I can't read every one of them. I was especially interested in the comments made regaing the Liberation Treatment, CCSVI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Hi everyone, Edie's question has prompted me to get this out to everyone to help anyone else who has any similar questions. This info is what I generally send out to anyone who wants to know about CCSVI if they are a 'starter' in regards to learning about CCSVI. Hope this helps people get their head around CCSVI - there's plenty more indepth information to be had from all the sites that I've included in this for you. Look further into what makes up blood and how ferritin assists restenosis etc too. 1- 2 - 3 - Go to 'CCSVI in Multiple Sclerosis' on facebook for GOOD info - it's run/was created by Joan and her husband's the US guy who was spoken about/shown in part 3 of the YouTube vids. If you just type in CCSVI in the 'search' panel of any Facebook page and you should find your local CCSVI group no matter where you're from - the UK Group's gd, 'Healthy Talking' which is the EHC's Facebook group, is also good to give some updates, MY group is 'Michelangelo'S Angels' and helps inform members of what's happening around the world through the articles I receive each day. I send out papers for people to study and learn too - that way they can have the info in their head and can quote stuff and no doctor or neuro can treat them like a fool. I've got heaps more that I can send out to people too. The best places to start are Zamboni's papers and the stuff on Facebook in CCSVI in Multiple Sclerosis and you should go to ThisIsMS too - that site will give anyone a lot of info and give you lots of stuff about Sclafani, Haacke, Zamboni and the other big CCSVI names. Some websites people should get to know: http://www.multiplesclerosissurgery.com/where-tested-ccsvi.html http://my.clevelandclinic.org/disorders/vascular_abnormalities/vs_may-thurner_sy\ ndrome.aspx - something you should get them to check for too http://csvi-ms.net/en?page=1 & order=title_2 & sort=asc http://www.ccsvi.no/ http://www.fondazionehilarescere.org/ www.essentialhealthclinic.com All these sites will give great info. Apologies if others have answered with the same sites etc already, I just thought the information might help anyone who's interested and needs a place to start their CCSVI research journey! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: DSP592@... Date: Fri, 7 Jan 2011 23:17:13 -0500 Subject: Re: Re: CCSVI anyone interested in ccsvi should go to a website called: ccsvi-ms.ning.com. Re: CCSVI Hello, I just bought a new computer and it brought up 8,000 e-mail that I had missed. Almost all were from the mscured group. Needless to say, I can't read every one of them. I was especially interested in the comments made regaing the Liberation Treatment, CCSVI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 , Thank you for you reply, yes, it will get me started. These links are full of a wealth of information. Thanks so much! Edie ________________________________ To: MSCured <mscured > Sent: Sat, January 8, 2011 1:26:11 PM Subject: RE: Re: CCSVI  Hi everyone, Edie's question has prompted me to get this out to everyone to help anyone else who has any similar questions. This info is what I generally send out to anyone who wants to know about CCSVI if they are a 'starter' in regards to learning about CCSVI. Hope this helps people get their head around CCSVI - there's plenty more indepth information to be had from all the sites that I've included in this for you. Look further into what makes up blood and how ferritin assists restenosis etc too. 1- 2 - 3 - Go to 'CCSVI in Multiple Sclerosis' on facebook for GOOD info - it's run/was created by Joan and her husband's the US guy who was spoken about/shown in part 3 of the YouTube vids. If you just type in CCSVI in the 'search' panel of any Facebook page and you should find your local CCSVI group no matter where you're from - the UK Group's gd, 'Healthy Talking' which is the EHC's Facebook group, is also good to give some updates, MY group is 'Michelangelo'S Angels' and helps inform members of what's happening around the world through the articles I receive each day. I send out papers for people to study and learn too - that way they can have the info in their head and can quote stuff and no doctor or neuro can treat them like a fool. I've got heaps more that I can send out to people too. The best places to start are Zamboni's papers and the stuff on Facebook in CCSVI in Multiple Sclerosis and you should go to ThisIsMS too - that site will give anyone a lot of info and give you lots of stuff about Sclafani, Haacke, Zamboni and the other big CCSVI names. Some websites people should get to know: http://www.multiplesclerosissurgery.com/where-tested-ccsvi.html http://my.clevelandclinic.org/disorders/vascular_abnormalities/vs_may-thurner_sy\ ndrome.aspx - something you should get them to check for too http://csvi-ms.net/en?page=1 & order=title_2 & sort=asc http://www.ccsvi.no/ http://www.fondazionehilarescere.org/ www.essentialhealthclinic.com All these sites will give great info. Apologies if others have answered with the same sites etc already, I just thought the information might help anyone who's interested and needs a place to start their CCSVI research journey! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: DSP592@... Date: Fri, 7 Jan 2011 23:17:13 -0500 Subject: Re: Re: CCSVI anyone interested in ccsvi should go to a website called: ccsvi-ms.ning.com. Re: CCSVI Hello, I just bought a new computer and it brought up 8,000 e-mail that I had missed. Almost all were from the mscured group. Needless to say, I can't read every one of them. I was especially interested in the comments made regaing the Liberation Treatment, CCSVI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 , Thank you for you reply, yes, it will get me started. These links are full of a wealth of information. Thanks so much! Edie ________________________________ To: MSCured <mscured > Sent: Sat, January 8, 2011 1:26:11 PM Subject: RE: Re: CCSVI  Hi everyone, Edie's question has prompted me to get this out to everyone to help anyone else who has any similar questions. This info is what I generally send out to anyone who wants to know about CCSVI if they are a 'starter' in regards to learning about CCSVI. Hope this helps people get their head around CCSVI - there's plenty more indepth information to be had from all the sites that I've included in this for you. Look further into what makes up blood and how ferritin assists restenosis etc too. 1- 2 - 3 - Go to 'CCSVI in Multiple Sclerosis' on facebook for GOOD info - it's run/was created by Joan and her husband's the US guy who was spoken about/shown in part 3 of the YouTube vids. If you just type in CCSVI in the 'search' panel of any Facebook page and you should find your local CCSVI group no matter where you're from - the UK Group's gd, 'Healthy Talking' which is the EHC's Facebook group, is also good to give some updates, MY group is 'Michelangelo'S Angels' and helps inform members of what's happening around the world through the articles I receive each day. I send out papers for people to study and learn too - that way they can have the info in their head and can quote stuff and no doctor or neuro can treat them like a fool. I've got heaps more that I can send out to people too. The best places to start are Zamboni's papers and the stuff on Facebook in CCSVI in Multiple Sclerosis and you should go to ThisIsMS too - that site will give anyone a lot of info and give you lots of stuff about Sclafani, Haacke, Zamboni and the other big CCSVI names. Some websites people should get to know: http://www.multiplesclerosissurgery.com/where-tested-ccsvi.html http://my.clevelandclinic.org/disorders/vascular_abnormalities/vs_may-thurner_sy\ ndrome.aspx - something you should get them to check for too http://csvi-ms.net/en?page=1 & order=title_2 & sort=asc http://www.ccsvi.no/ http://www.fondazionehilarescere.org/ www.essentialhealthclinic.com All these sites will give great info. Apologies if others have answered with the same sites etc already, I just thought the information might help anyone who's interested and needs a place to start their CCSVI research journey! 'What we do in life, echoes through eternity.' MARCUS AURELIUS (121 - 180 A.D.) To: mscured From: DSP592@... Date: Fri, 7 Jan 2011 23:17:13 -0500 Subject: Re: Re: CCSVI anyone interested in ccsvi should go to a website called: ccsvi-ms.ning.com. Re: CCSVI Hello, I just bought a new computer and it brought up 8,000 e-mail that I had missed. Almost all were from the mscured group. Needless to say, I can't read every one of them. I was especially interested in the comments made regaing the Liberation Treatment, CCSVI. Quote Link to comment Share on other sites More sharing options...
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