Welcome! This blog contains research, information on lifestyle, nutrition, dietary supplements and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 15 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Thursday, November 12, 2015

History written by the victors?

Dr. T. Jock Murray, retired Canadian neurologist,  was considered the "go to" expert in Canada for all discussions regarding multiple sclerosis research. And there are many reasons why he earned this respect. Dr. Murray had a long and illustrious career.

Dr. Murray has over 200 publications. He is the author of a textbook of neurology, now in its fourth edition, and 2 books on the management of multiple sclerosis; he coauthored a book on medical quotations and a recent one on the quotations of Sir William Osler. He has contributed 37 chapters to other textbooks. He is or has been on the editorial board of 22 medical journals..... He was a founder and currently is past-president of the Consortium of North American Multiple Sclerosis Centres and was chair of the Canadian Medical Forum. He has served as vice president of the American Academy of Neurology, as president of the Canadian Neurological Society, and as president of the Association of Canadian Medical Colleges. Dr. Murray has received many awards and has delivered many distinguished lectureships. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1214566/

But Dr. Murray made some rather antagonistic and blunt comments to the press the week, regarding the newly appointed Canadian Minister of Science, Dr. Kirsty Duncan. Dr. Duncan has been an out-spoken advocate for further research into MS and CCSVI.  All along, she has maintained that the vascular issues in MS and diseases of neurodegeneration need further exploration.

Dr. Murray is having none of it.

"Ms. Duncan's role will ensure, among other things, that scientific analyses are considered when the government makes decisions," wrote Dr. Murray. "This would have been a problem if she was in this position when the government was dealing with the pressure on CCSVI, because Duncan chose to ignore the peer-reviewed scientific papers which indicated that CCSVI was not an MS breakthrough."

“Perhaps if she were to revisit her former comments and championing of CCSVI, as others have done, and would issue a statement to that effect,” Dr. Murray said, “she would regain some credibility in the eyes of scientists.”

Here you go, Dr. Murray.  Here is a database with hundreds of published and peer-reviewed papers citing a connection between CCSVI and MS.  Dr. Kirsty Duncan is right, there is more to research, and evidence of a connection.

I decided to take an in-depth look at Dr. Murray's much-lauded book, "Multiple Sclerosis: The History of a Disease" in order to understand his viewpoint. Why he would he so adamently negate Dr. Duncan's insistance that Canada fund vascular studies in diseases of neurodegeneration? And what I found was truly disturbing. Dr. Murray's book, considered to be a definitive history of MS research, is simply not the truth. It's just plain wrong.

Dr. Murray devotes a few scant pages to the 200 year vascular history of MS---on pages 285-288 he attempts to discuss and dismiss the "Vascular Theory."
link to chapter

Most disturbing is his characterization of Dr. Tracy J. Putnam's research in the 1930s and 1940s. In his book, he claims that Dr. Putnam's "experiments" were on the "carotids of cats and dogs." In fact, Dr. Putnam published on formation of MS lesions in dogs by blocking the venous sinus in the animals. Veins, not arteries.  Just like CCSVI.

Here's the actual study:
Putnam et al. injected oil into the longitudinal sinus of dogs and described brain pathology similar to that seen in human multiple sclerosis.
Putnam, 1935 T.J. Putnam. Studies in multiple sclerosis: IV. “Encephalitis” and sclerotic plaques produced by venular obstruction. Archives of Neurology and Psychiatry. 1935;33:929-940


Dr. Murray continues to characterize Putnam's research as a failure, since the lesions created did not look like those seen in MS. This is patently false!

Here's the truth:

"Dr. Tracy Putnam, American neurologist and chair of the medical advisory board for the National MS Society, experimented by obstructing venous outflow in dogs, only to find that the dogs quickly developed brain plaques similar to those found in MS patients.
Putnam wrote about his observation, “The similarity between such lesions [in dogs] and many of those seen in cases of multiple sclerosis in man is so striking that the conclusion appears almost inevitable that venular obstruction is the essential immediate antecedent to the formation of typical sclerotic plaques.”

Dr. Murray claims he is the real scientist, yet he is not correctly portraying science in his own book. He is creating a new narrative, in which he rewrites the history of vascular research in MS, so that he can dismiss it in a few pages. Dr. Zamboni's CCSVI research has found a connection between what Dr. Putnam saw in the 1940s, and what new technology has allowed us to see today. Venous stenosis, reflux and blockage affects the brain and spine.

If Dr. Murray, a much-revered MS expert, has written a history book which is wrong, who is going to call him on it?   We have to. His book is not scientifically correct, and we need to get the truth out there.  To use his own words,  If Dr. Murray wants to "regain credibility in the eyes of scientists", perhaps he needs to comprehend the published venous connection to multiple sclerosis, and not rewrtie it.

Here's the truth about Dr. T.J. Putnam's multiple sclerosis research--which I sourced and compiled using published, peer-reviewed research. http://ccsviinms.blogspot.com/2012/06/dr.html

Neuroimmunologists have had a strangle-hold on MS disease etiology for decades. Their hold has increased, as pharmaceutical companies created a 20 billion dollar a year industry based on the EAE immunological mouse model of MS.  Neurologists, like Dr. Murray, received research money, finders fees for getting patients into clinical trials, honorariums and speakers payments from pharmaceutical companies. They told the story the way they wanted to, but it is not the truth.   They have been the victors, and they have written history according to their script.

I am thankful for real, independent scientists, like Dr. Kirsty Duncan. Scientists who understand that research is an ongoing process which is about uncovering the truth. Not backing up a false narrative to protect one's turf or line one's pockets.

I hope Dr. Murray rewrites his book and fixes the errata in the chapter on vascular research. But more importantly, I hope he and other MS experts open their eyes to the very real, ongoing research into the vascular connection to MS.

History will be written by the victors. And unbiased research will provide those victorious answers.


Wednesday, October 28, 2015

Science behind the headlines.

The one thing that drives me crazy is how media and internet news sites continually bungle the explanation of medical research to the public. One recent and very glaring example of this is the MEAT CAUSES CANCER news which seems to be confusing many, and creating smug vegan hashtagging.  I wanted to take some time and explain the research behind the headlines, in the hopes of educating.  Take this info and share it with your family and friends.  No need to get into arguments or shaming matches with carnivores, vegans and vegetarians (they are us-- our friends and loved ones.  We all eat food.)   Just add this information to your self-help file.  Knowledge is power.  Hyperbole is stupid.

When I created the Endothelial Health Program for Jeff, I wrote that consumption of processed meats like sausage, bacon and hot dogs and red meat were not recommended for endothelial health, and to watch consumption.   Consumption of processed meats has been linked to MS progression, as well as cancer and cardiovascular disease.

We want a strong and healthy endothelial cell layer in our blood and lymph vessels, to allow for healthy blood flow, cerebral perfusion and a functioning immune system.  Here's more on your endothelium, for those new to this science:  http://ccsviinms.blogspot.com/2015/10/endo-what.html

Some chemical compounds damage this cellular layer and create disease.  One such damaging compound is N-nitroso.  Processed meats and red meat contain sodium nitrate and heme (iron from blood) which is then converted in our gut to N-nitroso.  This is the same reason why these foods are considered carcinogenic.  N-nitroso causes DNA alkylation and mutation of cells.   We find this dangerous compound in cigarette smoke, too.  It's not the meat, or the nitrates or the processing which are inherently bad, it's how our gut processes these foods.

Want to learn more about which foods you eat will create the most N-nitroso?  Here's a published database from Baylor University with list with quantification of dietary amounts. Sausage, lunch meats, smoked meats and bacon are highest on the scale.

If you think of our bodies as elegant machines which need a specialized fuel in order to run most efficiently, you can understand this rationale.  We want to eat foods which encourage endothelially derived nitric oxide (eNOS), our premium grade fuel--like fresh fruits and vegetables, fish, nuts, omega 3 fats.  But eating too much glucose, processed foods and transfats is like pouring sugar into the gas tank.  It changes the chemical composition of your fuel, and your engine won't run.

Here's more on this nasty chemical compound, N nitroso--which is found in some plastics, cigarette smoke, and yes....bacon.  Try to limit your exposure to it.

Here's an explanation of how red meat metabolizes into N-Nitroso.  It's the blood which gives red meat its color, and its risk.
Red meat contains more iron heme than white meat. The iron is easily nitrosylated and this facilitates the formation of endogenous nitroso-compounds (NOCs; ). Red meat intake shows indeed a dose–response relation with NOCs formation, whereas there is no such relation for white meat. NOCs are mutagenic: induce nitrosylation and DNA damage. Processed (nitrite-preserved) red meat increases the risk. Heterocyclic amines are formed during cooking of meat at high temperatures, but this is not specific for red meat ().

This DOES NOT mean eating meat causes cancer.  It means eating some meats (red and processed) raises your levels of bad fuel,  N-nitroso, which can cause disease.  We do not know how much N-nitroso it takes to create disease states, but we know there is a link, so watch your consumption.  Make sense?  Good!

Here's the complete Endothelial Health Program.
Guaranteed to get you running on the best endothelially derived nitric oxide (eNOS) fuel.  Premium grade nitric oxide.  Now, share this knowledge with your friends-- vegetarian and carnivores alike.

Be well!

Wednesday, October 21, 2015

Canadian Neurovascular Health Conference

Congrats to the Canadian Neurovascular Health Society!!!  www.cnhs.ca

I'm very glad I was able to hear all of the presenters at the conference in Vancouver this past weekend.  CHNS board members Dr. Sandra Birrell, Landon Schmidt, Michelle Walsh, Dr. Bill Code, Dr. Bernhard Juurlink and Dr. David Christie put on an incredibly informative (and fun!) event.    It was all about making Connections---between patients, doctors, caregivers and information.  For those who wish to hear all of the speakers, I'd really suggest purchasing the DVD set of the conference to learn more.   http://www.eventbrite.ca/e/neurovascular-connections-richmondvancouver-2015-tickets-15062769148

This is going to be a very brief overview of some of the discussion----and my post is most woefully incomplete.  I have my own interests in what I think is note-worthy, and that's certainly not the same for anyone else.   But I hope this gives you an idea of the weekend.  All of the speakers were great.

Dr. Bill Code started out the conference with this important statement---"There are no silver bullets.  We need a combination of approaches in dealing with MS.  The pieces of the puzzle are different for each one of us."  He outlined all of the different approaches we would be looking at over the course of the weekend---and he was right, there was something for everyone!  I don't write about important discussion on stem cells, Lyme disease, sleep, exercise---so again, forgive the brevity.

David Ultrianen from MS MRI in Detroit (or as I call them, Team Haacke) had some very interesting slides on their recent studies of jugular pathology in those with MS who have stenotic jugular veins.
Input from the carotid artery and output from the jugular veins should be equal, but in those with CCSVI, it is most certainly not.  Patients with stenotic jugulars show much more flow through collateral veins.  Iron, shown on SWI MRI, builds up retrograde to veins.  The transverse sinus drains the basal ganglia--and there is increased iron buildup in this area in many with CCSVI.  David is busy studying cerebral micro bleeds (CMBs) and finding that SWI technology is a good means to measure this phenomena.  Because of the Gladstone Institutes' recent research showing how a drop of blood can activate the immune response in the brain---looking at plasmic deposition into brain tissue is hugely important.

Dr. Ivo Petrov has been doing some very interesting studies, looking at specific parameters before and after he treats patients for CCSVI.  He has treated over a thousand patients now, at the Tokuda Hospital in Sofia, Bulgaria, and has a wealth of knowledge and data.  One measurement I found truly fascinating was a blood/gas analysis study where he measured CO2 and oxygen levels in patients he treated.  He has found that the O2 pressure is much less than normal in those with CCSVI and the CO2 levels are higher.  Not good for brain health!   Immediately after treatment, these markers improved.  Dr. Petrov has also found that collaterals are highly related to CCSVI, and after stenting the vein, these collaterals disappear and drainage occurs through the IJV.  His studies show that CCSVI is strongly associated with MS.  Looking forward to seeing publications on this.  Nothing in pubmed yet.

Dr. Paolo Zamboni received a wonderful warm standing ovation.  Although he wasn't physically in the room, he could feel the appreciation being sent via Skype, and was visably moved by it.  Dr. Zamboni discussed how his recent work with NASA and the International Space Station has helped him refine a new, operator independent means of measuring venous flow.  He admitted that a major problem and a cause of controversy in CCSVI diagnostics has been the fact that using ultrasound as a diagnostic tool is completey depenedent on the training of the operator.  And this has been confusing and has kept the science from moving forward.  The main difficulty is that the jugular vein is a pulsatile (or moving and pulsing) vessel, and it has different measurements during the cardiac cycle, depending on how much blood is going through at any one time.  Also, the jugular vein is ellyptical, and not a circle, which has also confused cross sectional (CSA) measurement.

His new method of measurement looks at flow velocity and how the jugular venous pulse (JVP) is synchronized with the carotid artery and heartbeat.  By looking at normal subjects, we can see how all three of these measurements are synchronized in a determinate interval of time.  The venous pulse begins with the heart contraction, giving a positive wave up to the brain.  Each movement of the heart is reflected in the jugular vein.

Dr. Zamboni trained astronauts in how to use B mode ultrasound to take video clips of their venous return and JVP on the space station. These video clips are purely data, which were then transmitted to vascular researchers to extrapolate the hemodynamics of flow.  The beauty of this new video clip method is that it's just numbers...like an EKG readout.  You can't give a neurological "opinion" on numbers.  It is, or it isn't, normal.  Dr. Zamboni is already seeing that the distance of waves is much wider and more regular in normals, than in patients with CCSVI.  This new non-invasive method will give us a precise picture of the heart-brain axis, and help end the diagnostic controversy of CCSVI.   It will also help clarify who should be looked at further with venogram, and can be used as a follow-up method for patients after venoplasty treatment.

Dr. Terry Wahls- rock-star of both the MS and paleo worlds- got up to the podium and gave a big shout out to the Embry Family.  She thanked Ashton for putting published research up on his Direct-MS site, which helped her look at how nutrients and diet affected MS.  She said that she wanted to learn how to prevent brain atrophy, and turned to modifiable risks (the things we can change) as a way to heal her brain.  She presented some pretty startling info on how much more sugar we have been consuming since the Industrial Revolution---now up to 153 lbs of sugar per person per year (!!!!!)  Refined sugar is a known creator of inflammation and endothelial dysfunction and linked to all chronic illnesses.  Something to thing about.

She discussed many ways to increase our mineral, micronutrient, macronutrient and vitamin intake through diet, and compared the hunter gatherer way of life to our modern sitting/eating processed food lifestyle.  She was there to sign books after her presentation.  I like Dr. Wahls.  She is no-nonsense, pro-patient, and her personal story is inspiring and very moving.  Dr. Sandra Birrell, president of the Canadian Neurovascular Society, is following The Wahls Protocol, and she and her husband Landon have had great success with this program.   Sandra made sure all of the catered luncheons at the conference were Wahls compliant, and I was so happy to have fresh, organic produce, healthy protein and colorful meals.  Jeff and I travel a lot, and finding healthful and nutritious meals on the road takes a bit of effort.  It was nice to simply show up and fill up my plate with good stuff.

Dr. Philip James presented via Skype, as well.  I was thrilled to get to see and hear him speak in person.  When Jeff first came home from high altitude with several enhancing lesions and received an MS diagnosis, googling hypoxia and altitude took me directly to Dr. James' important research. Here is a note I wrote about him when he came out with a statement on CCSVI in 2011.

Dr. James laid it out there, he does not mince words.  You could feel the frustration in his voice.   He has been publishing on MS since the 1980s, and understands how much MS research has tragically veered from scientific evidence due to pharmaceutical influence.   As he stated plainly,  "Multiple Sclerosis simply means "many scars" and scars are a symptom of healing.  How tragic that we have developed a 20 billion dollar industry which seeks to end this healing."  Wow.

Hypoxia causes both inflammation and MS lesions (Ge, Lassmann, Juurlink) Oxygen is necessary for healing, and the lack of oxygen creates disease.  The primary reason for circulation is to deliver oxygen to our organs.  Medical students are no longer taught the importance of oxygen in healing.  Dr. James has been treating MS patients with hyperbaric oxygen for decades, and has seen great success in his patients.  http://www.taysidemstherapy.co.uk/Documents/Philip%20James%20HBOT%202005%20Paper.pdf

He lamented that part of the problem with HBOT treatment receiving due acknowledgement (aside from pharma industry issues) is simply the word "hyperbaric".  It makes this treatment sound otherworldly---when in fact, it's simply delivering oxygen to a hypoxic brain and spine.  It should just be called oxygen treatment.  The correaltion of HBOT with CCSVI is the fact that venous oxygen is critically important because it allows for correction of any breaches in the blood brain barrier.  HBOT treatment is scientifically accepted as a useful practice for people with MS in the UK, and is funded by the national health association.  Patients only pay a small fee to receive regular treatment.  Would that this were true in Canada, the US and the rest of the world.  Hopefully, with continued research, we will get there!

That's it for my notes---off to enjoy the day with Jeff.
Eat colorful whole foods made by mother nature, not processed by some factory.  Get good sleep, get some UV rays, find something that makes you laugh or sing or smile today.  The research is coming in, and we are all changing the paradigm, a little bit everyday.  Connections matter.

Hope and Healing!!