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Chronic Cerebrospinal Venous Insufficiency

Discussion in 'Other Health News and Research' started by Koan, Nov 20, 2009.

  1. parvofighter

    parvofighter Senior Member

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    Dr Zamboni looking into Epstein-Barr Virus. What about XMRV?!

    FYI another update from the MS forums. :)

    Note the mention below of "Endothelial Disrupters" (endothelial = the inner lining of blood vessels), specifically by Epstein Barr Virus. In other words, Dr Zamboni is looking at viruses that also are associated with ME/CFS, that might affect narrowing of those veins draining the brain. (NOTE: Parvovirus B19 is another endothelial disrupter, as are HHV-6, cytomegalovirus, adenovirus, and enterovirus - all ME/CFS opportunistic viruses) Might virally-related CCSVI end up also falling under the XMRV umbrella? Interesting to consider the crossovers between XAND and MS/CCVSI.... If the latitude-influenced MS cases end up having XMRV/EBV causing swelling of those stenosed veins, that could be another "game-changer" for us - a whole other patient group (like prostate cancer pts) clamoring for XMRV testing and therapies. I would think that would be a good thing - strength in numbers, and synergy in major goals. Imagine if WPI's breakthrough doesn't just help us, but other patient groups in dire need? Very cool.

    From: http://www.thisisms.com/ftopict-9040.html
    "Dr. BB Lee addressed the geographic incidence question at the Bologna conference- he stated that venous malformations occur in Caucasians- who also happen to settle further from the equator. Also, women suffer from venous insufficiency at a higher rate than men. These are known, studied facts in relation to other venous diseases, but have not been written about in CCSVI, since we've only known of this pattern for a year. Dr. Zamboni's team is currently studying EBV and a variety of other external influences (smoking/fats/obesity/Lyme/Cpn) in endothelial disruption and exacerbation of stenosis and reflux. But there are no papers available today. Therein lies the problem, and the flights of fancy in the current speculation. We just don't have the research today (Check back tomorrow for the Liberation Procedure paper.)"

    Also: http://www.thisisms.com/ftopict-8691.html
    "Dr. Zamboni spoke recently in Bologna about "endothelial disrupters" such as Cpn, Epstein Barr, low vitamin D, toxins, heavy metals and smoking...all outside influences which can worsen a stenosis and exacerbate reflux. Maybe candida could be added to that list. There will be many studies in the coming years

    so...according to Dr. Zamboni's research, we see stenosis comes first, then reflux of blood into the brain (which can be exacerbated by endothelial disruption) which results in what we now call "MS."


    I can't help thinking that MS/CCSVI and XMRV/XAND researchers should be cross-pollinating their work. Imagine if we had the power of the MS advocacy groups behind us - to mutual benefit?! At the very least, somebody should point out the possibility to Dr Z that if he is looking at EBV, he should definitely also be considering the possibility of XMRV involvement.

    And so, good night!
  2. nora_n

    nora_n

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    I think they speculated on the wpi facebook page if there is some connection between CCSVI and "infectious venulitis".
    Google infectious venulitis, as it was an early cfs outbreak. Dr. Ryll studied it in Sacramento, some ten years before the Lake Tahoe outbreak.
  3. Ruth

    Ruth Member

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    Just found this thread. Past too tired to think, but want to post two things:

    1. Look into Cryoglobulinemic vasculitis


    2. I looked into Infectious Venulitis and found this article:
  4. Ruth

    Ruth Member

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    cold wx and cryoglobulinemia and infectious venulitis[me/cfs]

    [sorry i hit the wrong key and posted prematurely above]

    here are the two things wanted to add to this discussion before i crash. hopefully some of you can help make the connections that I think i see but can't write about being so worn out.

    1. Cryoglobulinemia

    Cryoglobulinemia is the presence of abnormal proteins in the blood. These abnormal proteins become thick or gel-like in cold [!!] temperatures. it is strongly associated with hepitits c but about 10% is of unknown origin. One treatment is to avoid cold!! and I think that somewhere I read that the little immune proteins that precipitate at temperatures lower than body temp have been found to contain pieces of viruses. if person has hepatitis c, then treating the hepatitis c seems to help resolve the vasculitis.
    [I found this info recently because i was trying to figure out why i seem to have some sort of vascultits with skin erythema on my left lower leg [the one that a car ran over many years ago, but this just came up a year ago after i had a very severe relapse of cfs symptoms after too much exercise.]


    2. infectious venulitis was mentioned above so I looked it up and found this article:

    http://www.ncf-net.org/forum/InfVenulitis-Fall05.htm

    tomorrow I will try to make the connections that I now think I see but cannot write about now....

    a parting thought: even if xmrv were totally discredited [I don't think it will be!!!] but even if it were, the stimulation to us all to try to put all this together and make sense of our ruined lives is likely to greatly accelerate medical research. makes me think of Forester's "only connect" [room with a view] and vanevar bush's 1945 piece on his envisioned memex
    [As we may think:
    http://www.theatlantic.com/doc/194507/bush
    we are becoming his memex and can, as he predicted, help to move along discoveries by at least a decade.

    Cheers,
    Ruth
  5. shrewsbury

    shrewsbury member

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    Univ of BC plans to test potentially groundbreaking MS treatment

    UBC plans to test potentially groundbreaking MS treatment


    The University of British Columbia has announced plans to begin patient trials to test a potentially groundbreaking method of diagnosing and treating multiple sclerosis, a disease that afflicts up to 75,000 Canadians.

    Researchers have proposed launching a study involving 100 patients to test a theory that MS is a vascular disease that can be treated with surgery. It's the first research proposal in Canada to suggest evaluating the findings of an Italian doctor whose early studies indicate that multiple sclerosis might be caused by vein blockages that lead to a buildup of iron in the brain.

    The findings of Paolo Zamboni have generated a great deal of interest among researchers and those with MS. Earlier this year, the Multiple Sclerosis Society of Canada appealed to scientists to follow up Dr. Zamboni's theories.

    The proposed UBC trial, which would be done in collaboration with researchers at the University of Saskatchewan, is an answer to that appeal, said Anthony Traboulsee, medical director of the UBC MS Clinic.

    Dr. Traboulsee said Dr. Zamboni's studies have caused both hope and anxiety among people with MS. They are hungry for a breakthrough, but realize the Italian doctor's findings are preliminary.

    They are very anxious about this, Dr. Traboulsee said Tuesday in an interview. MS is a lifelong disease. Young people are hungry for hope. Because of the intense interest in the new findings, Dr. Traboulsee said the proposed patient trials must take a careful approach.

    Unlike Dr. Zamboni's earlier studies, the UBC research plan will include a control group which gives more heft to a study's findings and will take place over a longer period
    .......
    Researchers including some at UBC have already been studying links between MS and iron in the brain, Dr. Taboulsee said. He said the latest findings are like another piece to a jigsaw puzzle. Previous studies have linked MS to, among other things, a Vitamin D deficiency and cold climates.
  6. parvofighter

    parvofighter Senior Member

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    Brilliant news, islandfinn!

    @islandfinn, thanks so much for posting this! Absolutely fascinating news - can't wait to see what UBC finds out. And yes - they needed to get that control group going too.
  7. Barliman

    Barliman Guest

    Hi all- I should introduce myself. I actually have ADHD- but have a good friend who hosts a support group for CFS and a discussion group for ADHD.
    I have seen many transient CFS/fibromyalgia like symptoms in myself. About a week ago I became aware of the issue of subluxation of the occipito- atlantal joint- and a proposed treatment called atlas-profilax.
    The symptoms are very much like the symptoms I get- and the neck discomfort is a real driver of my restlessness. I think I have been lucky not to fall into chronic fatigue myself- as I am a tryer - not one for giving up.

    The interesting thing is that this issue is associated with venous congestion in the brainstem. It is also described in yoga as a possible side effect of the "Kundalini awakening" Same stuff- different bucket. I am interested that there is an association with MS as well. I have a friend of a friend who aborted MS through meditation- and the meditation posture minimises pressure on the spinal cord at the foramen magnum. I will follow the Zamboni links with interest.
  8. julius

    julius Watchoo lookin' at?

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  9. FernRhizome

    FernRhizome Senior Member

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    Koan: This is great research. Thanks for posting it. It's a total tie-in to Dr. Bell's work on low blood volume. If you heard/watched his Q&A after his California talk he talks about how he believes the blood vessels in CFS have become narrowed due to low blood volume. He is probably aware of this research since it's in NY/Buffalo but I am sending it along to his office just in case. ~Fern
  10. Diva55

    Diva55 Member

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    This is another article where it talks about damage to myelin - a protective sheath surrounding nerve fibres of the central nervous system.
    When myelin is damaged, this interferes with messages between the brain and other parts of the body.

    I think it's been found that damage to the myelin causes the pain receptors in FM patients to go out of whack. Could have got that wrong but also damage to myelin does cause the cognitive problems.
    So I find this really interesting as an FM patient.


    -----------------------------------------------------------------------------------------------------------------

    Multiple sclerosis researchers have made an important breakthrough sparking hope of a cure for the disease

    Scientists have discovered that people with MS are more than twice as likely to have abnormal blood flow in the neck.

    The University of Buffalo study in New York opens the possibility of identifying a treatment for the degenerative condition.
    There is already evidence that sufferers are benefiting from surgery which unblocks veins in the neck.

    Sky's health correspondent, Thomas Moore, described the breakthrough as "tantalising evidence".
    "This could change the way we view multiple sclerosis," he said.
    The treatment is not yet available in this country but Martin Jones travelled to Poland for surgery.

    "These are only early days, but it's looking good so far," he said.
    "It's made a large difference to my symptoms.
    "I have warm feet. I have stopped choking on my food. My balance is better.
    "I have less twitching at night, in fact that's stopped."

    The American study backs initial study findings in Italy.
    More than 55% of MS patients participating in the Buffalo research were found to have the neck abnormality, a condition called chronic cerebrospinal venous insufficiency, or CCSVI.
    Robert Zivadinov, associate professor of neurology and principal investigator on the study, said he was "cautiously optimistic and excited" about the results.

    MS is the most common disabling neurological condition affecting young adults, with 100,000 sufferers in the UK.

    Researchers believe it is the result of damage to myelin - a protective sheath surrounding nerve fibres of the central nervous system.
    When myelin is damaged, this interferes with messages between the brain and other parts of the body.

    http://uk.news.yahoo.com/5/20100210/tuk-breakthrough-gives-hope-for-cure-to-45dbed5.html
  11. liverock

    liverock Senior Member

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  12. Kedodg

    Kedodg Guest

    I'm glad to find this thread. I have had undiagnosed chronic fatigue and pain for 13 years. My son is also quite disabled by pain and fatigue. I'm surprised more people with CFS/ME aren't making a connection with the Zamboni MS research since poor blood perfusion through the brain is supposed to be characteristic of CFS. I am fascinated. I recently developed high blood pressure, which seems un-CFS like (but my illness doesn't totally match up with CFS/FMS descriptions anyway). Recently my doctor noted that my right side jugular vein is large (but he thinks still normal). It looks and feels to me like a definite bump that's pretty big. It makes me really wonder about CCSVI. It's very frustrating to me that it seems insurmountably hard to get things like this checked out. BTW the vascular specialist I saw for high blood pressure looked at me like I was crazy to be asking him questions about cold feet and the rest of my symptoms. Definitely not interested. I have never been able to see a neurologist. My son got a plain MRI but it doesn't show anything. No SPECTs available here.
  13. maryb

    maryb iherb code TAK122

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    Do you think high iron levels in the brain would show up in normal bloods tests? My iron levels last year were the at the highest for the range, I meant to mention it to the doc at Breakspear but forgot and he never pointed it out, so I just forgot all about it. Reading this has made me think again.
  14. shrewsbury

    shrewsbury member

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    Doctors who believe MS linked to damaged veins urge more testing

    Doctors who believe MS linked to damaged veins urge more testing

    Demand by patients for surgery prompts researchers to advise caution and safety

    Dr. Paolo Zamboni , whose revolutionary research into Multiple Sclerosis suggests that it is a vascular disease rather than a autoimmune condition, is seen here at the American Academy of Neurology Conferece in Toronto For the Globe and Mail

    From Thursday's Globe and Mail Published on Wednesday, Apr. 14, 2010 8:20PM EDT Last updated on Thursday, Apr. 15, 2010 5:10AM EDT

    The researchers behind a controversial theory that multiple sclerosis may be cured with simple surgery are now urging patients demanding immediate access to the treatment to wait until it is properly tested.

    Doctors who are already offering to perform the procedure are acting irresponsibly and may risk harming patients, the researchers said during a forum at a major neurology conference n Toronto this week.

    It is a cautious message coming from Paolo Zamboni and Robert Zivadinov, two researchers who helped propel the notion that MS is linked to blocked blood vessels leading from the brain, rather than the conventional thinking that it is an autoimmune condition. But it illustrates how little scientific research examining the theory has been done and how many important questions remain unanswered.

    I think that the steps should be respected of scientific research, said Dr. Zivadinov, associate professor of neurology at the University of Buffalo who is conducting research on the new theory, which was developed by Dr. Zamboni. We need to first find whether something is safe, then whether it might be effective.

    But some members of the medical community say unjustified risks have already been run as MS patients around the world invest their money and fly to foreign destinations in hopes the unproven treatment will eliminate their often-debilitating symptoms.

    Weve seen over and over again in the history of medicine claims for other surgical procedures, other kinds of interventions that come out with great hype and then, if theyre ever studied adequately, turn out not to be valid, said Aaron Miller, who was part of Wednesdays panel. He is professor of neurology and director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at New Yorks Mount Sinai School of Medicine.

    At the heart of the debate is a theory developed by Dr. Zamboni, director of the Vascular Diseases Center at the University of Ferrara in Italy. He believes multiple sclerosis is a vascular condition caused by blocked or malformed veins responsible for draining blood from the brain, and that it can be treated with surgery to reopen the veins. After news of his research was published, patients flooded doctors offices with phone calls and some have travelled to such countries as Poland to get the controversial treatment.

    Research conducted by Dr. Zamboni and published last year showed that nearly three-quarters of a group of 65 patients had no MS symptoms two years after they had surgery to repair the brain drainage problem.

    However, critics say the study had serious limitations, such as the fact that results may have been biased because patients and doctors knew what the treatment was designed to do.

    Another major issue is the fact that Dr. Zivadinov, who is also the director of the Buffalo Neuroimaging Analysis Center, wasnt able to identify a vein problem in nearly half of the 500 MS patients involved in a study he is conducting. Furthermore, 22 per cent of the healthy control group involved in the study had the vein blockage problem.

    Some members of the medical community say those kinds of facts cast doubt on Dr. Zambonis research. They also say its impossible at this stage to judge whether the vein drainage problem triggers MS, contributes to its progress, or is simply a secondary issue common to some people with the disorder.

    I think that a lot of people arent getting the full picture, said Katherine Knox, director of the MS clinic at Saskatoon City Hospital. We have to be very careful that we dont conclude that association equals causation. We cannot make those conclusions at this time.

    Dr. Knox is planning a study to determine whether the vein problem is present in people with symptoms of MS, as well as those at high risk of developing the disorder.

    But Dr. Zamboni says his research clearly shows there is a link between vein blockage or malformation and multiple sclerosis. Now, its up to researchers to determine the extent of the link, how it might be related to the progression or onset of MS, and whether its associated with other neurodegenerative diseases.
  15. shrewsbury

    shrewsbury member

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    MS patient has 'energy to burn' after new procedure

    MS patient has 'energy to burn' after new procedure

    Steve Garvie who can now walk without his wheelchair after undergoing Italian doctor Zamboni's neck vein surgery to cure his multiple sclerosis, walks outside his home in Barrie, Ont.

    Two Canadian research teams set to test Italian scientists blocked-vein theory

    Caroline Alphonso

    Toronto From Wednesday's Globe and Mail Published on Tuesday, Apr. 13, 2010 11:50PM EDT Last updated on Wednesday, Apr. 14, 2010 8:34PM EDT

    Steve Garvie has energy to burn, can bathe himself and rarely uses his wheelchair a much different picture from just a few months ago.

    Diagnosed with multiple sclerosis about 10 years ago and desperate for more control over his body, Mr. Garvie underwent a procedure in January that unblocked a vein in his neck a potentially groundbreaking method of treating MS that was first introduced by Italian doctor Paolo Zamboni.

    Ive been getting better all the time. Im doing just fine, Mr. Garvie, 53, said from Barrie, Ont.

    The potential treatment is still in its preliminary stage. And as researchers in Canada and around the world lay the groundwork to test Dr. Zambonis theory, the doctor, along with Buffalo researchers, will present findings at the American Academy of Neurologys annual meeting in Toronto on Wednesday.

    Dr. Zambonis study on the degenerative condition has sparked both hope and controversy. He believes MS is a vascular condition, caused by blocked or malformed veins responsible for draining blood from the brain, and can be treated with surgery. It is a departure from conventional thinking that MS is an autoimmune condition in which the immune system attacks myelin, a fatty substance that coats nerve cells.

    Dr. Zamboni found that in 90 per cent of people with MS, including his spouse, the veins draining blood from the brain were malformed or blocked. But many in the medical community have been skeptical of his work because it is preliminary, with a small sample size, and has been heavily promoted before going through the rigorous research process.

    Despite the skeptics, Mr. Garvie and other MS patients have been seeking out the treatment, which involves a simple surgical procedure, angioplasty. A few clinics in Canada offer it, including one in Barrie. Mr. Garvies surgery took less than an hour, and just moments afterward he could move his left hand and left leg, which he couldnt do before.

    Patients, eager for a remedy, are also seeking out researchers who are about to embark on studies.

    There has been significant e-mail traffic, voice-mail traffic, said Ian Rodger, vice-president of research and academic at St. Josephs Healthcare in Hamilton, Ont. Theres been a lot of phone calls that have come into a variety of places, some to my office, some to my colleagues office. Certainly in the thousands.

    A team of doctors from McMaster University, St. Joseph's Healthcare and Hamilton Health Sciences has been set up to test Dr. Zambonis theory. Another team involves researchers at the University of British Columbia and the University of Saskatchewan. Researchers will study the veins in the brains of long-suffering patients and healthy people to see if there is a difference between them.

    Both teams are waiting for approval from the ethics board, and trying to secure funding before moving ahead with the trials. If all goes as planned, they hope to have preliminary results within a year.

    Were anxious to get going. But at the same time, this needs to be studied properly, said Lindsay Machan, associate professor in radiology at the University of British Columbia. Its a really intriguing theory that Dr. Zamboni has come up with, and there have been some patients who seemed to have had some really impressive responses.
  16. shrewsbury

    shrewsbury member

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    Zamboni video: New MS Theory Still Needs More Study

    medpage from the American Academy of Neurology Meeting

    New MS Theory Still Needs More Study
    By Michael Smith, North American Correspondent, MedPage Today
    Published: April 16, 2010

    TORONTO -- This special InFocus report explores the novel theory that multiple sclerosis is at least partly a matter of abnormal vasculature in the neck, a theory that has generated a storm of attention here at the American Academy of Neurology meeting.

    Paolo Zamboni, MD, the man whose findings sparked the intense interest, sat down with MedPage Today correspondent Michael Smith to explain the theory, discuss what research still needs to be done, and suggest what doctors should tell their patients while studies are under way.
  17. Jenny

    Jenny Senior Member

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  18. Enid

    Enid Senior Member

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    I've only just discovered this (late in the day) and apart from vascular problems (pretty certain about that one as heart seemed to struggle from slow heartbeat to excessive rapidity) - the high iron levels/build up would explain the strong metallic taste of everything experienced over many months too. (dropped all supplements at that point).
  19. Jenny

    Jenny Senior Member

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