Dr. Hubbard, Alarming Comment from Seattle

[drbart]

CCSVI in Seattle, Part 3 of the Q&A with Dr. Hubbard, around the 6:50 mark.


Dr. Hubbard: "...and so I, myself, and my wife and my daughter, we enrolled ourselves as normal subjects. None of us were normal. We all had some kind of obstructions...."

What the heck? The last thing I want to do is stir the skeptic pot around here, but these remarks can't go unscrutinized.

On one hand, he could just be saying nobody's veins are perfect. On the other hand, he might be saying everyone's veins are screwed up but MS patients should get theirs fixed just because.

I've looked, but I see no mention in this thread of the fact that both his wife and daughter had been complaining of severe fatigue for years before his son developed MS.

[concerned]

CCSVI in Seattle, Part 3 of the Q&A with Dr. Hubbard, around the 6:50 mark.


Dr. Hubbard: "...and so I, myself, and my wife and my daughter, we enrolled ourselves as normal subjects. None of us were normal. We all had some kind of obstructions...."

What the heck? The last thing I want to do is stir the skeptic pot around here, but these remarks can't go unscrutinized.

On one hand, he could just be saying nobody's veins are perfect. On the other hand, he might be saying everyone's veins are screwed up but MS patients should get theirs fixed just because.

I've looked, but I see no mention in this thread of the fact that both his wife and daughter had been complaining of severe fatigue for years before his son developed MS.

But they never developed MS? Are you saying that CCSVI is the cause of fatigue, not MS? Thus, everybody suffering from fatigue should be "Liberated"?

Here's a better method I've dug up: http://tinyurl.com/66dk8d6

[sou]

IOW, try to fix anything else, but NEVER ever touch any veins, whether occluded or not. Does not make sense to me, even if you are joking, which also does not make sense to me.

Veins are a hoax, colon cleansing is not! Doh!

[Cece]

I've looked, but I see no mention in this thread of the fact that both his wife and daughter had been complaining of severe fatigue for years before his son developed MS.

I wasn't aware of that. Makes sense to me. I also would accept seeing CCSVI tied in to severe fatigue in its own right, separate from MS. When concerned lightly says "everyone suffering from fatigue should be 'liberated,'" I can only try and have sympathy and know that his use of the word fatigue does not match my use of the word fatigue and that true MS fatigue would have him crying, IMO. It has certainly had me crying at times.

[Lyon]

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[Rokkit]

This was posted on FB by Arlene Hubbard. It appears to be an answer to the question raised in this thread. I don't think she would mind me posting it here:

"What is normal? Since we have our own scanner we've tested ourselves and friends of the family with other conditions. Only about 6-7 cases. We have not included these findings in any of our studies. Our preliminary thoughts are that normal vs not normal is not simply black or white. We'll need many more normals to determine this and an important question is who should be defined as normal. We agree that relatives must not be considered normal since jugular abnormalities are presumably congenital . Our own assessment is that the severity of CCSVI(number and location of obstructions) plus other factors such as history of trauma, and sources of inflammation including diet and lifestyle work together to cause CNS lesions. In fact Dr Hubbard has come to the conclusion that a less likely factor is a primary autoimmune attack on myelin-the orthodoxy of the last 40 years."

[cheerleader]

Rokkit-
since Arlene posted that on the page I admin (I know you keep your ID/MS status private on FB, and I respect that), I'd like to provide my response and context here, on this thread.

Again, these are the images the Hubbards took, without the flow quantifications provided by the Haacke protocol. They didn't submit them to Dr. Haacke as part of the study. As Dr. Zamboni has stressed repeatedly, "it is not architecture, it is flow".

Many people can have arterial disease, and never have a stroke or heart attack. We may find many "normals" using MRV that have areas of stenosis. They may be migrainers, have fatigue, bad circulation, but NOT MS. BNAC found CCSVI in 25% in healthy controls (which included family members), but their MRVs did NOT have the Haacke flow quantification. This is why Dr. Zivadinov now uses doppler ultrasound as the means of testing. Because CCSVI is about flow, not architecture.

MRV, when combined with Haacke flow quantifications, is a good indicator of CCSVI, but venography remains the gold standard. And this argument over MRV vs. doppler will continue. For those that are able to be tested by doppler, it is much more affordable and easier on the body (no dye/less time/less money) There are a few centers in the US now providing the Zamboni protocol, and will be more in the future.

What MRV provides is a longetudinal picture of venous health and brain health. Jeff's had four MRVs/MRIs, and this is how Dr. Dake is charting his brain and vein health. This is also what the Haacke protocol will provide.

I hope this provides some context,

cheer

[Lyon]

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[Rokkit]

Thank you, Cheer, I appreciate it.

It makes me wonder if the obstructions found in the "normals" scanned by the Hubbards were accompanied by collateral veins. That was the striking thing about my first MRV - a big ball of spaghetti in the back of my head trying to make up for my occluded jugulars. That would seem to me to be a big indicator of flow problems. That's more of a no-flow problem than a turbulent-flow problem I guess.

I just find it so odd that Dr. Hubbard would characterize this as any great challenge if it just meant his scans hadn't been through the full Haacke.

I also realize getting caught up in a bunch of MRV minutiae isn't going to be too productive. I just wish someone would publish a good-sized, venography study comparing pwMS to healthy controls. And it needs to be from someone who claims to be able to readily find these problems in pwMS and let them demonstrate that ability while blinded to diagnosis. It will accomplish nothing for such a study to come from the German neuros for example who can't seem to find CCSVI in anyone when we know that between Dr. Siskin and Dr. Arata over 1000 people have been treated for SOMETHING in the U.S. alone.

[Rokkit]

In fact Dr Hubbard has come to the conclusion that a less likely factor is a primary autoimmune attack on myelin-the orthodoxy of the last 40 years."

Hey Rokkit, I don't know why but my brain won't wrap around that last paragraph, particularly the part I put in blue. If you understand that he's trying to say can you put it another way?

I think he's just saying it looks to him unlikely that MS is caused by an unprovoked attack from a defective immune system as neurologists have thought for 40 years. Unless I'm missing what you're pointing out.

[cheerleader]

I just wish someone would publish a good-sized, venography study comparing pwMS to healthy controls. And it needs to be from someone who claims to be able to readily find these problems in pwMS and let them demonstrate that ability while blinded to diagnosis. It will accomplish nothing for such a study to come from the German neuros for example who can't seem to find CCSVI in anyone when we know that between Dr. Siskin and Dr. Arata over 1000 people have been treated for SOMETHING in the U.S. alone.

I agree 100% rokkit....it's really a problem. Dr. Haacke applied for NIH and NMMS funding to test normals and pwMS blinded using his protocol, and was turned down. (He's rarely been denied funding before, so this is a bit odd) We've been scrambling to raise him some $, but he is one person, working 24/7, without a staff. He's looking at perfusion rates, O2, amount and timing of cerebral bloodflow, as well as reflux. Deep cerebral vein reflux seems to be one smoking gun, hypoperfusion and low O2 are others. He's presenting an abstract in Bologna...one month away.

Meanwhile, people are being treated for slowed and refluxing blood flow, and doctors (and their families and laypeople like me) around the globe are putting forward their sometimes conflicting views on testing and treatment protocols. The cacophony is overwhelming. My best advice is for patients to have a one on one relationship with their IR, to understand what's going on in their own bodies. And support research.... many of the ongoing clinical trials and studies have tax deductible status in the US...I know BNAC, Haacke and Stanford do.
cheer

[Cece]

In fact Dr Hubbard has come to the conclusion that a less likely factor is a primary autoimmune attack on myelin-the orthodoxy of the last 40 years."

Hey Rokkit, I don't know why but my brain won't wrap around that last paragraph, particularly the part I put in blue. If you understand that he's trying to say can you put it another way?

I think he's just saying it looks to him unlikely that MS is caused by an unprovoked attack from a defective immune system as neurologists have thought for 40 years. Unless I'm missing what you're pointing out.

I took it to mean that a primary autoimmune attack on the myelin is among the factors, although it is a less likely one, so maybe only happening to some people with MS and not the majority as was previously believed?

[drbart]

I've looked, but I see no mention in this thread of the fact that both his wife and daughter had been complaining of severe fatigue for years before his son developed MS.

I wasn't aware of that. Makes sense to me.

Hubbard brings this up in his talks on YT. But, he hadn't mentioned his own non-normal test, that I know of.

I also would accept seeing CCSVI tied in to severe fatigue in its own right, separate from MS. When concerned lightly says "everyone suffering from fatigue should be 'liberated,'" I can only try and have sympathy and know that his use of the word fatigue does not match my use of the word fatigue and that true MS fatigue would have him crying, IMO. It has certainly had me crying at times.

By some accounts, fatigue is the #1 indicator of whether relief of symptoms will follow relief of CCSVI.

Speaking of which, we'll all be hanging on any news about your outcome.

No pressure or anything..

[Leonard]

I think it is not the venous obstruction as such that is the issue but the feeding of the brain.

If you take it from that point, the pieces of puzzle including the points raised here fit together so neatly.

please have a look at

http://www.thisisms.com/ftopic-15188-da ... asc-0.html

I know, the title of the thread sounds a bit arrogant for which I apologise. I was in a state of euforia when I found the explaination of the double peak in the graph of the age of onset and the explanation of vitamine D relation in MS which make the ccsvi - low glucose theory so plausible (see my posting 30 Jan 6:11am)

Incidently this piece fits in neatly as well

http://www.thisisms.com/ftopict-13959.html

[Lyon]

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