Some factual, documented history:
1. I believed there was a vascular connection to my husband's MS diagnosis from day one. That would be March 23, 2007, the day we got his serum results from the doctor and I saw so many numbers that were way out of normal range. Coincidently, my birthday.
2. Using Jeff's serum results as a point of reference, I went to the library and took out every single book they had on MS, including McAlpine's history of Multiple Sclerosis--which had a section on the long history of the vascular connection. This is where I first read about Dr. Tracy Putnam. link The pile of textbooks also included Dr. Swank's research. Dr. Swank wrote about the connection of MS to the blood. He published over 100 research papers on MS. He wrote about capillary fragility, petechiae and hypercoagulation in his MS patients--all of this research rang a lot of bells for me. link
3. I was on a forum called "This is MS" in September 2007. I wrote about Jeff's serum results, hypercoagulation, and postulated on a bunch of research with other people with MS and caretakers. It was a great community, and we shared papers, programs and MS research.
4. Using pubmed and my local library, I eventually came to the intersection between the vascular and immune system I had been searching for---the endothelium. Using published and peer-reviewed science, I created The Endothelial Health Program for Jeff and shared it on This is MS in the summer of 2008. I saw a connection between many of his vascular issues (petechiae, high Crp levels, hypercoagulation, high liver enzymes), endothelial dysfunction, and his MS diagnosis. We found that by changing his diet to a Swank program, increasing his Vitamin D levels, including cardiovascular exercise, thinning his blood with proleolytic enzymes, getting him out in sunshine, reducing work stress, improving his sleep---he was doing much better, he did not have a relapse and his serum results normalized. http://ccsvi.org/index.php/helping-myself/endothelial-health
5. I wrote to endothelial researchers at USC and Stanford, asking if they had any knowledge of studies or published research on the function of the endothelium in MS. Both of them e-mailed me back. I began a correspondence with the researcher at Stanford, because he was the most interested in this connection. Here is part of his reply. I have all of the e-mails, if anyone aside from me ever truly wants to get this story correct.
"I enjoyed reading your treatise.
I quite like the hypothesis that MS is secondary to a derangement of the endothelium of the cerebrovasculature, that results in inflammation and local damage.
I am also in agreement with your contention that a functioning endothelium is a major key to health.
Furthermore, I agree that diet and exercise are critical for endothelial health."
6. It would be three months later I would send more research to this doctor. One of the papers was Dr. Zamboni's new publication on CCSVI, which had been shared with me, the "vascular hypothesis gal" on This Is MS. He was fascinated by the research, and suggested further testing for Jeff. Here's part of that e-mail.
"You could get more evidence for cerebral venous abnormalities (I would be particularly concerned about venous stenoses) by MR imaging, with attention to the cerebral veins. "
7. We would eventually bring Jeff up to Stanford for TESTING to see if he had any venous abnormalities. It took a few months to schedule, as he was busy composing and we needed to travel from LA to the Bay Area. He was tested in April, 2009. My mistake was that I wrote about all of this online, on the This is MS forum. I should not have done this. It is my one, deep regret. But it is also why I continue to blog and write. Because I feel hugely responsible for what would later happen.
8. Jeff had serious venous abnormalities, documented on MRV. link He had a 99% stenosis in his left jugular vein and an 80% closure of his right. The doctor we were consulting with felt this was a serious issue for his brain perfusion, and suggested we think about potential treatment. We went home.
9. After consulting with other physicians, Jeff scheduled his venoplasty treatment for May 2009. He went back up to Stanford and was treated for his venous abnormalities. He had a profound response on the table---he felt as though the "lights came on" after a stent was opened on his left side. He came home and slept soundly, without spasms, for the first time in over a year. He was dreaming again. He also had a terrible headache the first day, and would develop severe shoulder pain from having his accessory nerve pinched by stents. These side effects from the treatment would pass, but it was scary. Again, I wrote about it online.
10. People read what I wrote, called Stanford, were treated there or tried to get treated elsewhere. The press picked it up, and the rest is pretty well documented. What is never reported correctly is that I didn't force an IR to treat Jeff. We asked him to TEST Jeff for venous abnormalities. When we saw how bad they were, the IR suggested treatment, and we eventually agreed.
I never called venoplasty a cure for MS. I also never meant for people to get hurt, or travel for medical tourism, spend thousands of dollars (as Jeff was covered by our insurance) or most terribly, to die from complications. I certainly didn't want to be labeled the crazed wife who forced an IR to treat her husband. I always said this was only part of living a vascularly healthy life, to encourage healing and strengthen the heart-brain connection. I never used the word cure. I started the Facebook group because I was really concerned with how this research was being discussed as a cure. link I was also shocked with how vehemently the MS specialists were denying any link to the vasculature. I wanted people to know this was only a treatment, and it might not be right for them. Which is partially why I stayed online. That, and a huge amount of pride, I'm sure. Ego is never a good thing, and I know it complicated this issue.
But in all honesty, all I wanted were answers for the love of my life. And we hung around because we had hoped this could be helpful to others. But to be continually portrayed as cure seekers, zealots and wingnuts by the NY Times, the Wall Street Journal, and other publications (which will live online ad infinitum) and to have our names linked to false and incomplete reporting is simply too much.
So, there it is.
Going for a walk with my love, and our 17 yr. old dog, Angel (another medical anomaly)
Have a nice day,
I can understand your frustration, Joan, with all the negativity that has transpired. I, for one, am so glad you persevered and published your findings and experiences so the rest of us could be informed. Being from Canada, I was one of those who had to travel to Costa Rica for treatment in 2010 and am glad to this day that I did. I appreciate reading your updates. Without your insight and research, those of us with MS would still be in the dark. So..thank you ...and please keep blogging. Gayle C.ReplyDelete
I was just thinking today before this post came through, I DO NOT KNOW what I would have done without your hope, research, and ongoing passion - - never give up, and try not to even think about the negativity. I know from experience it is very upsetting, but some things are just so important - like your work. (When I'm not writing letters etc about CCSVI/MS things, I'm trying to stop the grizzly trophy hunt in BC and you can be sure I have been severely stalked, threatened and mocked by hunters. But I can't stop.) I am always so grateful for you. <3ReplyDelete
Dearest Joan, I am so sorry that you have to deal with the negativity. These days I am not surprised you and so many advocates are targeted. The untruths on so many levels, floating out there are being turned around to create chaos. Of course science/medicine has been in the Nay Sayers world for years and we have learned to grow thicker skin and point out the facts. If not for you Joan I shudder to think what would have become of me. November 21, 2009 you helped my journey to improve my life and over seven years later I’m still here with a better state of wellbeing . CCSVI treatment, diet, supplements etc. are not a cure but, heck it helped me deal so much better with my daily living. Back in 1993 I was told by these so called MS experts there was nothing for me. And they were right. Nothing. You, Dr. Franz Schelling, Prof. Zamboni and Denise D.-M. are my HEROES. Love you and God bless. Onward! xoxoReplyDelete
You are a complete inspiration and really encouraged me to own my treatment path, be proactive, and fight the good fight rather than delve into depression. Your tireless dedication to the MS cause and the generosity of your spirit to share everything with our community is priceless. That you have helped contribute towards making someone's experience even a bit more manageable is the greatest gift you could ever give, and I suspect you have had a much greater impact than you realize. The world needs more people like you. Please keep being brave and keep doing what you do. It's amazing!! Thank you!ReplyDelete
Throughout history people who have spoken the truth have been called all sorts of names. This is one of those situations when what they write/say, says more about them than it does about you. They must be running scared. It doesn't matter what they say. You made a difference to so many lives.ReplyDelete
I wrote to you in the early days as you were the only person, other than myself! who was looking at MS in a different way. I too have been laughed at by the medical profession for suggesting Vit D might be of benefit and asking about a diet.
15 years into his secondary progressive MS journey my husband is still standing and some of that is due to you. Bravo. Thank you from the bottom of my heart for sharing everything you learned along the way. You made a huge difference to our lives. Keep sharing and thank you for all the work that you do. Love and hugs.....xxx
I call it a win when a researcher has to resort to personal attacks and name-calling rather than arguing ideas. You never have to defend yourself. The truth and honesty in what you say speak volumes. Understandably you are a threat to some. However, so many of us with MS hold you in the highest regard.ReplyDelete
How anyone could possibly make fun of you just baffles me. You have been so selfless, open, honest and transparent in absolutely everything you do, have done, and will do in the future. Of that I have ZERO doubt.
We are all in this together, and you always encouraged everyone to do their own research before being treated. You were the original "cheerleader", and that is absolutely incredible.
I keep a record of all of my dozens (hundreds?) of friends with MS. In the last few year, I have seen many decline. Some were treated for CCSVI, and some were not. One thing that I have noted through the cases of PML, suicide (assisted or not), death because of medication-related issues is that fewer MS friends have had complications due to CCSVI treatment than to conventional treatment. The fact is, we are all in constant decline. CCSVI treatment restored quality of life to some people, even if their narrow-minded neurologists refused to see it.
A new chapter in this entire journey will soon be opened up as Zamboni publishes the results of his trial.....the best and most robust one completed in the world.
Please accept our gratitude for bringing this to the forefront. Yes, some people were exploited.....some clinics were less than ethical....you could not have foreseen this in your wildest dreams. However, others are still living the benefits of their treatment.
My MRV was very similar (99% of left and 77% of right jugular closed). I had on-the-table improvements and I have had lasting improvements. Six years later! Eternally grateful for you for paving the way.ReplyDelete
I bless you daily as I do all the things that were stollen from me in 2001 when the diagnosis came through. It was not until I saw MS Liberation with you and Jeff and Dr Zamboni and at that point they had to tear me off the ceiling. With the use of "underground emails and communication", I was able to secure my CCSVI procedure on 14th July 2010. I have been advocating for this ever since and have ensured that each time Jeff wins yet another award, you both are highlighted on my page.ReplyDelete
Joan, you saved my life with your dedication and I shall be forever grateful for my freedom from fatigue and loss of independence.
Please don't let these people get you down. There are so many of us backing you!
Joan, I have had lasting positive effects from my CCSVI treatment in September 2009. You are my Angel and I will forever be grateful for all of your research and your friendship!ReplyDelete
Thank you always for all your links I share in many places from me here in the UK .ReplyDelete
You have my utmost respect and appreciation, Joan. I was diagnosed in late 2008 and got in on the very beginnings of your investigation. I have been convinced from the start that my symptoms had a vascular cause, and through your suggestions of diet and supplements I have been fortunate to not have any relapses or loss since 2009. I've been sharing relevant articles with my internal medicine doctor for years and he is now also convinced. One patient, one doctor at a time... Please continue the journey with us.ReplyDelete
Ad-hominem arguments are no arguments at all. I am surprised how can a scientist, a man of logic and sense use such a fallacy just to deprive a "singer" (sic). Do not take it seriously. You did not create this disease and certainly you are not responsible for their own incapacity to treat it at all.ReplyDelete
Dear Joan, I would not spend a moment on worries what other people think of you!!ReplyDelete
You did what you had to do; you helped Jeff to have a normal life and never suffer from the MonSter that we all know so well. Let them wright, with time this will pass too. Meantime enjoy your walk, go home a kiss your husband from all of us. If not his MS and your perseverance some of us would never have know we had a chance to live better. It worked for many of us because of you. So thank you and have a wonderful life with your husband. Love his music, he often works with my cousin, a movie director, Agnieszka Holland.
Joan, you have been, and continue to be, an inspiration to so many.. You represent the potential loss of respect and income for those threatened by your research - their attack is merely defending their egos and pockets. Their Bad..ReplyDelete
Thank you from the bottom of my heart for your love, commitment and integrity!
I received this beautiful comment from my dear friend, Marie Rhodes. She wasn't able to post on the blog--and sent it along via e-mail. It gives me great solace. For those not familiar with her important work, Marie wrote THE book on CCSVI science. It is a must-read/own/share publication. https://www.amazon.com/CCSVI-Cause-Multiple-Sclerosis-Controversial/dp/0786460385 Thank you for everything, Marie. You are a special woman.ReplyDelete
Having been here since the very first day I can say your characterization of the facts in this blog post are the absolute unvarnished truth. From the beginning you have been completely honest. I have always been grateful for your advocacy and integrity. God bless you!
The mischaracterization in the press makes me cringe; it finds its roots in the fact that a science writer whose specialty is to report on something like this has experts in his rolodex, in this case a neurologist with an interest in how MS is represented in the press, who will tell them how to “correctly” characterize their story. Because of this, the Press is not an impartial arbiter of the truth, but advocating for the National MS society and the pharmaceutical industry when it comes to CCSVI. It's not surprising they resort to discrediting the messenger when their lucrative paradigm is questioned.
However, medical people who are not directly involved with MS pharmaceutical companies immediately see that blood flow would be important in an MS brain. My primary care physician said “Of course you would need good blood flow to give you the best chance.” If she were to be mentioned in the press she would be “a primary care doctor with no expertise in MS” or similar characterization to discredit her opinion. It’s not your profession that causes them to say you shouldn’t be allowed to have an opinion-- it’s that it isn’t the RIGHT opinion!
Neurologists who are steeped in the current paradigm are ignoring the fact that long-term studies are not demonstrating the promised reduction in disability, that there is an 11 fold increase in cancer among those taking immunosuppressants, and that PML is a problem that is worse than MS should you contract it. In the stark light of these facts, neurologists should willingly pause and be deeply considerate of new ideas. Instead they act like those facts are in some way unimportant or suspect and therefore should not be acted upon. If you are the patient with MS this is unacceptable.
You had the integrity to call this situation out. To speak truth to power. You are in the company of Barry Marshall (who discovered h.pylori causes ulcers), Matt Embry (who was sued by the MS society for having a logo too like theirs on a website that was advocating alternatives they didn’t like), Dr. Franz Schelling (who called MS a vascular back jet issue and was blackballed losing his neurology position at University) and our dear Dr. Paolo Zamaboni who was called a hoaxer and compared to an ICE MACHINE!
Please be at peace, dear Joan! History cannot be kind to those who blocked progress in this area. The truth cannot hide forever. Thank you for everything you have done and continue to do. You are always in my prayers... Marie Rhodes, RN.
Marie Rhodes RN
Hi, i'm very interested in proper CCSVI diagnostic, if you know anyone in EU to recommend as i've heard it's important to see who does the procedure, I have ME/CFS/lyme, not MS, so it's not so certain CCSVI is my problem. In fact, only so far one doctor spoke about it, dr Cheney.ReplyDelete
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