new treatments

Interview with Lew Chapman: MS Patient who had Endovascular Surgery to Treat Symptoms

Merely Me Health Guide September 08, 2009
  • In my previous post I introduced the theory of a researcher named Doctor Zamboni who believes that the Multiple Sclerosis is not primarily an autoimmune disease but a vascular one.  The theory that Multiple Sclerosis has a vascular cause is called Chronic Cerebrospinal Venous Insufficiency which...

15 Comments
  • Lisa Emrich
    Health Guide
    Sep. 08, 2009

    Great topic and interviews.  When I first read information regarding the theory (on Marc's Wheelchair Kamakaze blog and MSRC), I thought it to be very exciting.  I really appreciate, Lew, that you included so many great links for further information in this one location.  May you continue to improve and feel well.

     

    Thanks, Merely Me, for...

    RHMLucky777

    Read More

    Great topic and interviews.  When I first read information regarding the theory (on Marc's Wheelchair Kamakaze blog and MSRC), I thought it to be very exciting.  I really appreciate, Lew, that you included so many great links for further information in this one location.  May you continue to improve and feel well.

     

    Thanks, Merely Me, for bringing this topic to MS Central.

    • momdukes
      Sep. 09, 2009

      Merely, what a great interview, I am impressed.  Considering how MS changes our lives, I am wondering, how much farther down can it take up, we can only go up.  I am at a point in my life where I would be willing to take that leap, if there would be a chance to make my life just a tiny bit back to normal, then I am your person.  I am 51 soon...

      RHMLucky777

      Read More

      Merely, what a great interview, I am impressed.  Considering how MS changes our lives, I am wondering, how much farther down can it take up, we can only go up.  I am at a point in my life where I would be willing to take that leap, if there would be a chance to make my life just a tiny bit back to normal, then I am your person.  I am 51 soon to be 52,I  would be willing to give it a try.  My hat is off to anyone who gets that chance.  Thank you MM for bringing this to our attention.

      sherry/smomdukesKiss

    • Merely Me
      Health Guide
      Sep. 09, 2009

      Thanks!

       

      I do want to say...please stay tuned for tomorrow's post from Doctor Nitin Sethi...he is going to provide his viewpoints on all this with a healthy dose of skepticism.  I really want to provide some balance on this topic and...let you all decide for yourself what you think.

  • Anonymous
    Colleen
    Sep. 20, 2009

    HOW DOES ONE LOOK INTO THIS PROCDURE?  I HAVE HAD RRMS FOR 17 YEARS AND CAN NOT WALK W/O ASSISTANCE...DOES THIS HELP EXISTING PROBLEMS?  I hate MS..I would try anything that may help me.

    • Anonymous
      Him
      Sep. 21, 2009

      Contact Dr Michael Dake @ Stanford University in California - he is doing testign and treatment, only place to get it in the US right now. It seems to help immediately with brain fog, heat sensitivity, fatigue, and bladder issues in many people. No one yet knows if longer term it may help with mobility issues ... but many are hopeful!

    • Anonymous
      colleen
      Sep. 21, 2009

      Thanks HIM for your reply~

  • Anonymous
    COLLEEN
    Sep. 20, 2009

    AWESOME!   MS can be terrible.. If this works...GREAt!

  • Anonymous
    fiore marco
    Sep. 16, 2009

    To me Dr Zamboni is a GENIUS, his teory leads to immediate therapeutical application.

  • Oneofakind
    Sep. 09, 2009

    Ok, what comes forth after this sentence all comes down to this...I just want to encourage/plead? with everyone to take this new theory with a grain of salt. I am not discounting it entirely, but I am not going to run out and have that surgery, either. I want to explain why I feel what I feel.

     

    I haven't read everything that's been posted, but I read...

    RHMLucky777

    Read More

    Ok, what comes forth after this sentence all comes down to this...I just want to encourage/plead? with everyone to take this new theory with a grain of salt. I am not discounting it entirely, but I am not going to run out and have that surgery, either. I want to explain why I feel what I feel.

     

    I haven't read everything that's been posted, but I read this sharepost with the interviewee, and I read some of his references, and I read, too, the abstract to the actual study by the Italian doctor. Now, I in no way profess to be a doctor by any means, but honestly...the biology of the whole thing doesn't make sense to me. I don't really understand how our own blood can essentially attack our nervous system. Also, in some of the links that I read, like http://www.thisisms.com/ftopict-7374.html, in describing this CCSVI, they talk about blocked veins a lot. Now, I reiterate I'm not a doctor, but when I think of a "blocked vein" I think of a blood clot. So are they saying that people with CCSVI are throwing a lot of blood clots, which then leak blood...etc. Isn't a blood clot in a vessel in the brain a stroke? So what's the difference? Anyway, if I were interested in pursuing this further, I would definitely do more research by talking to my doctor (who would know the biology MOST definitely better than I) or by looking in some textbooks. I'm a geek like that.

     

    My second issue is with the interviewee himself, Lew Chapman. I'll be the first to say hey, if the procedure worked, then great for him, but some of the comments he made were wide generalizations, and I believe that when you are dealing with MS, which is SO different for every person, that it is a dangerous thing to do. What works for one person, may not work for another. I would hate to see someone's hopes get squashed.

     

    I do want to say that he's right in the sense that there's no down and dirty cause/"method of destruction" as it were for MS. The general "theory" is that our immune system attacks the myelin sheath, the portion that covers the axon. Doctors aren't sure why our immune system decides to attack itself, but there it is. Symptoms become permanent when the myelin is destroyed, and the body begins attacking the axon directly. This causes scarring.

     

    "Secondly, think about the fundamental definition of MS.  It means many scars.  Don't you have to do something to create scars?"

    If you want to get technical about it, and go with the immune theory, your body IS creating the scars. Your immune cells are attacking your axons. Scarring occurs as your body tries to repair the damage...like when you get a scar on your skin. "Doing something" isn't necessarily you yourself physically doing something, but it is your body's way of repairing itself, either on your skin or inside.

     

    The first would be to have them explain why they are convinced MS is autoimmune with no antigenic target. 

     

    Maybe I'm being picky here but, isn't the myelin sheath the "antigenic target". I'm not sure he understands what that means. Antigens are substances that provoke an immune response. Again, in the "immune theory", and by my interpretation, the antigen that is being attacked is the myelin.For some reason, our body decides that it needs to get rid of our myelin. The big question is, WHY is it being attacked. It also makes sense that the myelin/axonal damage shows up as lesions on MRIs. Now that I'm thinking about it, does he mean by antigenic target the specific cells that are attacking the antigen? The immune system is pretty complex and composed of many populations/subpopulations of immune cells, B cells, T cells,  leukocytes...etc. I can understand why they are still working on figuring it all out.

     

    We ALL have the venous stenosis.  Not one single thing ties all MS patients together, save clinical expression of symptoms, in the autoimmune model. 

    What bothers me here is the generalization. There have been a few published studies, yes, linking CCSVI with MS.  That in NO way means that we ALL have it. Maybe we do, maybe we don't. But without further studies and a way to screen people for that, it is just a gross generalization. The problem here also lies in trying to tie everything up into a tight little bow. If medicine was easy, there'd be a lot more doctors! I think we all know by so many doctors visits, and the unfortunate fact that many are in limboland, that medicine is NOT easy, and you cannot tie things up neatly. I think MS would have been figured out long before now if that were the case.

     

    Since they don't know the antigenic target, they use drugs whose intent is to drop you ENTIRE immune system. 

     

    Ok, this statement is just wrong. I will concede, as I was one one of the carb drugs and now I"m  on another, that even in the package inserts they say that they don't know the mechanism of action, but that it does have an immunosuppressive effect. However, I can attest to the fact that it doesn't "drop your entire immune system" because you know what? You'd be dead! People die from AIDS because their T cells are greatly diminished, and even THAT is not your entire immune system, just a large part of it.

     

    Oh, another point is, Dr Zamboni, in his research says, "CDMS is strongly associated with CCSVI". I waned to point out the words "strongly associated" because in NO WAY does that mean CCSVI CAUSES MS. You cannot make that leap. Like I said, the research is interesting, and maybe this adds another layer to the whole pathogenicity of MS, but you can't at this time find a cause/effect. I just got the feeling that this guy believes  this CAUSES MS, and you just can't say that yet. There seems to be a link with the research, and more research is needed.

     

    And they don't do anything for someone who is actually dealing with MS that is more than a nuisance.  That's the truth.  I can say this with confidence.  The only people "happy" with any of those drugs are very mildly affected MS patients. 

    This comment is not only NOT factual--um, is HE a neurologist?? But irritating. I was on Betaseron  and no it didnt work. I'm on Copaxone now, and it is too soon to say, but even though Betaseron didn't work as well as we wanted (my doc still said it was better than  nothing) I was happy with it, it was convenient, didn't hurt...etc. Does that make my MS JUST a nuisance???? I think both myself AND my doctor can say that I do not have MILD MS. I think that that term is an oxymoron anyway.

     

    Well, if you've read this far, I appreciate it. I guess it lit a fire under me because I think people so much want to believe in an easy fix  (not that surgery on a vein is an easy fix) that it is easy to get caught up in enthusiasm. But my point is that it needs to be tempered  with  skepticism. That what science is for...to provide that knowledge, that assurance. Sometimes we get there, a lot of times we don't. I think, regardless of which side of the fence we're on, we need to be open minded. I think this guy feels that CCSVI is the only way to go, and when you get stuck on only ONE solution, at the very least it is one sided, at the worst, dangerous.

     

    Thanks for reading!! I will get off my soapbox now, LOL.

     

     

    • Merely Me
      Health Guide
      Sep. 09, 2009

      I am hoping that Lew or Mark can maybe come back to provide some feedback but...just wanted to say thank you for your very well articulated and thoughtful response.  Some of the questions you ask...I wondered about too.  I think it is definitely smart to be skeptical...to do the research...and to ask for more than one opinion. 

       

      I was hoping...

      RHMLucky777

      Read More

      I am hoping that Lew or Mark can maybe come back to provide some feedback but...just wanted to say thank you for your very well articulated and thoughtful response.  Some of the questions you ask...I wondered about too.  I think it is definitely smart to be skeptical...to do the research...and to ask for more than one opinion. 

       

      I was hoping that some of our members would provide a dose of health skepticism and you have given this much needed balance in expressing your views here.

       

      I hope you stay tuned...tomorrow I will posting the opinion of Doctor Nitin Sethi, a neurologist, who is inclined as you are to be skeptical of this procedure.

       

      You did a great job of telling us what you think and why.  Thank you so much for your comment!

       

       

    • Anonymous
      chrishasms
      Sep. 12, 2009

      I was very skeptical until I actually read all, I mean all of the related research.

       

      I would say this is the real deal. 

       

      First of it is a stenosis, which mean a narrowing of the vein.  It is not I repeat not a clot.  It seems to be a cogenital defect.

       

      Dr. Z in Italy did a great job at a concortium in It this past week showing...

      RHMLucky777

      Read More

      I was very skeptical until I actually read all, I mean all of the related research.

       

      I would say this is the real deal. 

       

      First of it is a stenosis, which mean a narrowing of the vein.  It is not I repeat not a clot.  It seems to be a cogenital defect.

       

      Dr. Z in Italy did a great job at a concortium in It this past week showing that the narrow veins are the cause of MS.  He actually followed a group of kids that he found with these narrow jugulars for 20 years.  90% of those kids had developed MS and the other 10% showed some neurological deficits.

       

      He also treated 100 patients with the liberation treatment where they opened up the veins.  All patients showed an instant improvement in Fatigue, heat sensitivity, and balance.  A few people actually had relapses in the 18 month period.  The patients who relapsed all had restenosised.  They went in and removed it again and within 4-48 hours the relapse was over and they were back to pre relapse condition.  Yet again proving the theory.

       

      To give you an example lets look at venous insufficiency in the legs.  Very common actually.  These folks are the ones who develop these nasty collateral veins called vericose veins.  In MS people the jugs, and azygous veins have all formed these collateral veins to try to drain the blood properly.  In fact, it's thought that when you have a relapse, what ends it is the body has made another vein to carry the load.  Once you have made as many of the veins as you can for the area, it stps making them and when the blood can't drain at all you develop PPMS.  Well in the legs when the blood stops flowing and the vericose veins stop doing the job you will develop very nasty lesions.  In MS when the flow is disrupted you develop a lesion as well.  Also as in really bad leg insufficiency when they have to install a stent the vericose veins go away as the collateral veins go away in MS as well.

       

      Now when blood is left over in the brain or spinal colum,(or anywhere for that matter) the immune system is then told to go clean up the flood.  In the process they see these lesions, as a cut, and they try to fix them as well.  In fact some think if the immune system would leave them alone they would heal on their own.  This leftover blood will creat pressure changes within the CNS and this alone can create serious issues and Mylopothy is a perfect example.

       

      So to put it blunt folks.  Stop thinking of MS as an Auto Immune disease.  It's not.  It's a venous drainage issue.  They did a great job of showing it in It. last week.

       

      Here are some links to the notes from the people actually at the conference.

       

      http://www.thisisms.com/ftopic-8105-0.html

       

      http://www.thisisms.com/ftopict-8089.html

       

      http://www.thisisms.com/ftopic-8074-0.html

       

      http://www.youtube.com/watch?v=yGFe-3h26Vs

       

      Good luck folks!

       

      Chrishadms

    • Oneofakind
      Sep. 13, 2009

      I appreciate your reply. You gave some more interesting data regarding CCSVI and MS. Like I said above, I think it is exciting research, BUT I think more research is needed. I agree wholeheartedly with Dr Sethi, which he asks us all to be cautious. I agree that this research is exciting, and is opening another avenue to treating MS, but again, like I said above,...

      RHMLucky777

      Read More

      I appreciate your reply. You gave some more interesting data regarding CCSVI and MS. Like I said above, I think it is exciting research, BUT I think more research is needed. I agree wholeheartedly with Dr Sethi, which he asks us all to be cautious. I agree that this research is exciting, and is opening another avenue to treating MS, but again, like I said above, you canNOT at this time, say CCSVI causes MS. Even in Dr Zamboni's research, he concludes that CCSVI is "strongly associated" with MS.

       

      I think we all need to be open minded in regards to all the research that is going on. Personally (and this is just my opinion which is in no way based on any research) I think MS is probably a combination of CCSVI and the immune response. If  the immune system and inflammatory response wasn't involved, why do I feel so much better after Solu-Medrol?  Like I said above, I think all of us would like to tie up MS in a nice little box (certainly doctors like to do so when diagnosing, or NOT diagnosing MS) and find a one cure all. But medicine, and life, is not like that. Both are complicated, and likely, there are a combination of factors which make us likely to develop MS.

       

      Just because one factor rings true, does NOT mean you can discount everything else. Also, in regards to the research that you've mentioned, the patient numbers are really small. 90%  of 100 people is a lot different than 90% of 10,000. Which do you think is more significant? That's why more research is needed. More knowledge gained. MORE patients tested. You can't take a population of 100 people in a study, and because they all have CCSVI, you can't say that EVERY patient has that. That's not science, that's an assumption. Assumptions can be dangerous.

       

      So I think the future of MS research is exciting. There are new drugs coming out, and new research forthcoming. MS is a complicated disease, so to me, it makes sense that there is a complicated cause.

    • Anonymous
      Lew Chapman
      Sep. 13, 2009

      Good questions, and some of the ones that I had initially also.  The research and results coming from these studies (well over a thousand people now and they ALL have it) is that, yes the stenosis is what needs fixed, but it's all about the flow.  Massive amounts of stuff that have to do with iron deposition on the brain due to the reflux (iron is...

      RHMLucky777

      Read More

      Good questions, and some of the ones that I had initially also.  The research and results coming from these studies (well over a thousand people now and they ALL have it) is that, yes the stenosis is what needs fixed, but it's all about the flow.  Massive amounts of stuff that have to do with iron deposition on the brain due to the reflux (iron is not good in excess amounts in delicate brain tissue).  The hypoxia that occurs from constant levels of deoxygenated blood is also right there with why there is too much iron and it's all bad. 

       

      The few published studies, as I've said now over a thousand people, show that we all have it, so I guess if it would take 100% accordance with the entire population of the world, then you'll remain skeptical about that statistic.  At what point would the population be large enough at 100% for it to be believable to you would be my question.  10,000?, 100,000?  Hey, with NOTHING being 100% present, save for expression of symptoms, 100 people across all 3 variants sharing a physical characteristic is ENORMOUS in MS, let alone over 1,000.

       

      And remember, there are NO CLOTS.  These are narrowed veins, not clogged/clotted arteries.  It's the drain off that's the problem.  That blood is supposed to go up there, supply the necessary oxygen and get out of dodge.  It is decidedly not.  It's refluxing back up there and preventing the oxygen saturation at the normal level from occuring, and it seems as if it's "leaving things behind" like iron. 

       

      I would HIGHLY recommend that you take out a username and password on http://thisisms.com. and start researching the CCSVI thread.  Numerous answers from people who have a much better understanding about this than me explain all of these questions and more.  There are a couple of threads that were started just for debated, called CCSVI skeptics and something else, I don't currently have the page up.  So I can dance around some of the questions.  But if you really want to know the answers, you will get them there.  And if you have other questions, that's the place to  go.  This forum right here, while informative and great, is just scratching the surface of this topic.  All of the real debate that I've seen has taken place on thisisms and that's where I'd go.  I leave tomorrow, 9/14, for round 2.  Wish me luck!

    • Mark_w_MS
      Sep. 16, 2009

      Exactly Lew, and also I just wanted to toss in something else: all these new drugs require testing on live humans. When they first start out these wonderful new drugs, they don't know if they will A. Work B. Kill you C. Make you worse. D. Do nothing.


      Point being that the very drugs which the neurologists prescribe have been bought and paid for with blood. Maybe...

      RHMLucky777

      Read More

      Exactly Lew, and also I just wanted to toss in something else: all these new drugs require testing on live humans. When they first start out these wonderful new drugs, they don't know if they will A. Work B. Kill you C. Make you worse. D. Do nothing.


      Point being that the very drugs which the neurologists prescribe have been bought and paid for with blood. Maybe not yours or mine, but someones.

       

      To further that, with CCSVI we have an actual mechanical defect, identifiable and treatable, sure, the exact connection between CCSVI and MS isn't clearly proven yet, neither is immune system involvement either. I feel great on a dosepak of Solumedrol too, but so would a normal healthy person, as one doc said, "it fixes everything". For a time at least. Temporary fix at that. Has a limit on how often you can use it too.

       

      I certainly wouldn't caution anyone about starting any new drugs because they have risks, other than to make sure they understood EXACTLY what they were getting into.

       

      Same with CCSVI, and stenting, both Lew and I,  and moving up into the multiple dozens of others know exactly (at least I did) what we were getting ourselves into, and why. No promises were implied or given, at all! Not even a hint. I know the stents are forever, so are my kids and wife, at least as long as I am on earth, I feel obligated to explore all the options and take the better road based upon the best available evidence. As you say Lew, there's usually better, but not always a best choice.

       

      At a minimum my midday fatigue and heat stress are gone, something all the medicines in the world did nothing for prior to getting stented, and I live in a very hot clime so it's noticeable big time.

       

      Just to reiterate from an earlier posting, I wouldn't tell ANYONE to do, or not to do, rather would point and say "check it out for yourself". ALL of it, not just the pros, not just the cons, and make a highly personalized decision. Remember one thing, the doctors, the Neurologists, the researchers, the pharma companies, are not looking out specifically for your best interests, only YOU can do that.

       

      Mark Miller

    • Mark_w_MS
      Sep. 16, 2009

      Sorry no way to edit that post, but it should read "Immune system involvement" as to cause, not "at all". (that's just my opinion of course)

      I refer to the juveniles identified as having CCSVI who later on developed MS at a rate of 90%.