US Media Coverage...Begins Now :-)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby tzootsi » Thu Feb 11, 2010 8:02 am

Sammy Jo - FINALLY something in the US media - how did you do it? Great job! We are now in a new era of MS treatment.
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Postby mormiles » Thu Feb 11, 2010 10:34 am

Hey Sammy Jo, How's that placebo effect working for you?

The coverage and your interview are terrific exposure for CCSVI treatment, but I couldn't help snickering about the "placebo effect" comment.

Thanks for this and all your efforts through the years.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby SammyJo » Thu Feb 11, 2010 11:03 am

mormiles wrote: I couldn't help snickering about the "placebo effect" comment

Me too! I've been trying everything for MS for 15 years, first the FDA approved drugs, never got a boost from any of that, just wrosening. Then I've tried plenty of alternative MS treatments, and I can identify that initial adrenalin rush that one can mistake as an improvment, that's the placebo effect, but it doesn't last longer than a few days.

Nothing worked except LDN. After 4 weeks on LDN I quit using my cane and cancelled the ordered motor chair, and within a year could walk a mile. Sustained improvement over the years can't be a placebo. This is already feeling like the LDN recovery, not as fast, but everyday nerve function is coming back, symptoms are improving. If you are concerned about holding MS at bay while the CCSVI trials move along, please investigate LDN, it has worked for so many of us.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby MS_mama » Thu Feb 11, 2010 11:18 am

SammyJo--You did an excellent interview, you were really glowing and looking fantastic! It really touched me when your husband talked about your improvements, I'm so happy for you.

I hear you on the LDN bit, and I don't want to take this off track, but as regarding LDN and CCSVI I have found that the people on the LDN list (yahoogroups) are so focused on the LDN/MS story (which is important too) but they think CCSVI must be a joke or something because many people feel "cured" by LDN. In reality when I read your notes on your case history it was sobering because LDN stopped working well for you after a few years. That's why I think that LDNers, being such strong advocates, could really help spread the word about CCSVI, but it seems like a lot don't really care. Any thoughts? If this is too far off base we can take it to PM or another thread :)
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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abc news story

Postby esta » Thu Feb 11, 2010 11:21 am

good for you sammyjo
its so exciting when someone listens, and now you have touched many many lives amd they will spread the word and and and...
thank you for everything you've done. i'm off to poland in june...a liberated website would change the world, i think...
esta
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Postby Bobbi » Thu Feb 11, 2010 12:43 pm

Sammy-Jo
Wonderful interview. I will share it with family and close friends who are having a hard time visualizing the CCSVI concept. Well done and thank you.
Bobbi
"A journey of a thousand miles begins with a single step." Lao-Tzu
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Postby SammyJo » Thu Feb 11, 2010 12:50 pm

MS_mamma,
Now that I had something tangible like the ABC interview, I posted it and this message on the man LDN board: "The next message I want to get out there is that LDN is a logical therapy adjunct for CCSVI. The papers Dr Zagon has written on the angiogenesis effects of LDN have many connections that need to be explored in the context of MS as a
vascular disorder."

That's all we can do, and if they are feeling great and don't feel the need to rush into a CCSVI trial or procedure, that's a good place for an MSers to be, and speaks loudly for the effectiveness of LDN. If they need to get their veins fixed later on, I hope we've got it all figured out for them :-)

esta,
Good luck on your trip to Poland, we are all cheering for you! Please, when you feel up to it, post your results in the sticky Tracking thread, it is so important early on we share our results.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby magoo » Thu Feb 11, 2010 1:37 pm

SammyJo,
I too want to thank you for getting out there and putting a face on CCSVI. You did a fantastic job!
We had our treatment around the same time. My gains have been wonderful too. I was just going through a period where I started having headaches, fatigue and dizzy spells. I was not happy. When I saw my GP he had an "I told you so" look when we discussed the placebo effect. I swear it is so frustrating! BUT, my labs came back with anemia and my blood pressure is low.............those things explain my setbacks! I have increased salt and will hear soon about how to treat my anemia. I already feel better, no headaches and no dizzy spells since the salt increase.
There is no placebo effect going on. It may not repair damage, but it stops MS!! That is huge. The mental clarity, lack of fatigue, and strength I have gained is more than any drug ever gave me.
May you have continued healing:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby annad » Thu Feb 11, 2010 1:44 pm

Way to go, Sammy Jo! Loved seeing you two smile!!!
Keep well!
:)
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Postby Sotiris » Thu Feb 11, 2010 2:09 pm

Great job for the promotion of CCSVI SammyJo!
On the other hand, I cannot understand the connection between LDN and CCSVI.
SammyJo wrote:[...] "The next message I want to get out there is that LDN is a logical therapy adjunct for CCSVI. The papers Dr Zagon has written on the angiogenesis effects of LDN have many connections that need to be explored in the context of MS as a
vascular disorder."[...]
Checking for Dr. Zagon's studies I found the following
In his early studies of opiate antagonists on cell growth, Zagon discovered that low doses of opiate antagonists such as naloxone and naltrexone blocked opiate receptors for approximately four to six hours. This resulted in increased production of endogenous opiates once the blockade ended. In subsequent studies Zagon determined that the primary importance of this blockade is the increased production of opioid growth factor (OGF).
This clearly means that taking LDN should increase the production of OGF. But this should lead to the inhibition of angiogenesis.
Zagon and his team have also determined, in animal studies using chick eggs, that opioid growth factor has a significant inhibitory effect on angiogenesis. Their studies showed that both the number of blood vessels and the blood vessel length were decreased in vivo.
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Postby jimmylegs » Thu Feb 11, 2010 2:21 pm

There's no way in hell I can follow that much miscellaneous info on a single, long thread. I'm particularly interested in US media, but work full time. I can't slog through these newly formed, gigantic, conglomerate threads to find the posts I meant to reply to when I had time.

i have been attempting to address many complaints by others, but it does take a lot of my time.
from now on if i receive several PMs about a particular issue, I will take whatever steps I can, on a case by case basis.
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Postby Sharon » Thu Feb 11, 2010 2:33 pm

Sammy Jo - congrats to you on the interview - you look great! Also, thank you for talking about LDN - I agree with you -- I think the LDN can be a complimentary therapy with CCSVI.

Sharon
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Thank you!!

Postby LDNAwareAdvocate » Thu Feb 11, 2010 2:56 pm

The power of networking is huge! Thank you, Sammy Jo for agreeing to the interview. I also have to thank my husband (the great writer he is) for contacting the ABC news affiliate here in the bay area. Had I not known all of you through the Internet boards and forums, this wouldn't have happened. This is so cool!

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Postby Sharon » Thu Feb 11, 2010 3:06 pm

Sherri - you deserve a thank you too -- you and your husband were instrumental in getting the interview process started. I was glad to see the local ABC station set up to interview Zamboni when we walked out of the meeting at NYU.

Sharon
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Postby JoyIsMyStrength » Thu Feb 11, 2010 3:19 pm

This placebo effect everybody's been talking about... where do I sign up? Pick me! Pick me!

I always say that to docs who warn me about my next treatment suggestion, LDN being one of them. Don't get me wrong I believe in CCSVI but to the docs who think everybody just *happens* to feel better because of the placebo effect -- who cares! Sign me up! I want to feel better too! :lol:

Great job SammyJo!!
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