Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of the endothelium and heart-brain connection. 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 auto-immune paradigm of MS, and continues the 20 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

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 to many.

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!!

Sunday, October 18, 2015


I'm fortunate enough to be at the Canadian Neurovascular Health Society Conference this weekend.  I say fortunate for many reasons.  I have the gifts of mobility, financial resources, and free time necessary to get on a plane and fly to another country to have this experience.  And the older I get, the less I take this for granted.  I'll go down to breakfast soon, and hear Dr. Zamboni address us, via Skype!

Sandra Birrell and her husband Landon, along with the incredible CNHS board and dozens of volunteers and supporters, have put on a tremendous event.  The venue is wonderful, the food has been nourishing, the speakers are all interesting and passionate, and my fingers are flying on the keyboard.  There is something here for everyone.  It's wonderful to see old friends and new, and to share and connect and be physically together.

I don't have MS.  I found this whole world of activists and disease specialists because I love someone with MS.  So, I always feel a bit strange and slightly self-conscious receiving thanks for my work.  Which happens whenever I get out to these wonderful events and see people who have been part of our virtual community for six years now.

I am more convinced than ever of the vascular connection to multiple sclerosis.  As the new, ground-breaking research continues to come in---on the lymphatic vessels of the brain, on the connection of the gut to the brain and the microbiome's influence on our blood brain barrier, and on the fact that all it takes to create MS is blood on brain tissue.  All signs are pointing to the connection.  And I have to admit, there is a bit of ego gratification in hearing the word "endothelium" coming from the speaker's podium.  I am proud of having a part in encouraging this discussion...yup, proud.  I think that's OK, but this fact also embarresses me.  Because, in all honesty, I know that all of this has been a gift.  And I feel compelled to continue to share and encourage.  None of us can do this in a vacuum.

Thanks to Amy, Sharon and Carol, and our discussion at dinner last night, I really got this message loud and clear.  If you have found any inspiration or motivation from this blog, please share it.  By that, I mean, get the information out to other people with MS.  You don't have to make them read my verbiage, simply be for them the kind of friend you think they need.  The kind of friend you need.  Can you encourage them to eat a more healthy, veggie and fruit-filled diet?  Can you be there for them, to take a walk, help with learning about supplementation and the blood tests needed to monitor Vitamin D levels or B12 levels.  Can you listen to them, help them deal with day to day stress?  Teach them a few deep breathing exercises, or strategies that have helped you get to sleep and stay asleep.  You know, all the stuff we share on line.  Because in the end, the spreading and sharing of this encouragement and knowledge in our communities--in all its forms--will be what means the most.

The science will come in.  It took 70 years for the EAE mouse model of MS to become a 20 billion dollar a year pharmaceutical machine.  This establishment fortress is not going to fall overnight, or even in a decade.  But that wall is beginning to collapse, as we remove one false brick at a time.  MS is many different things to each individual, but the strategies to keep people well are being outlined.  Good spinal and cerebral perfusion, good sleep, exercise, whole food nutrition, UV rays and Vitamin D, a healthy microbiome and probiotics, toxin and allergen removal, spinal and muscular alignment.  This is the foundation of the new approach to managing MS.  Focus on the individual, functional medicine, healing of the vasculature----and dealing with mechanical issues which inhibit healthy blood, CSF and lymph flow.  You can follow one of the many plans and diets being published and sold and be a loyal acolyte to a specific individual,  or you can go free-style, and find your own way.  Just know that the basics remain the same.

It's the community effort which is creating this new world.  The volunteers who put flowers on the table or stuff envelopes, send out e-mails, book venues and speakers.  The people who post on twitter, FB, and blog about the research.  The patients who learn about new treatment modalities and share their knowledge with others with videos and books and speaking engagements.  Every individual has a specific part to play, a talent to share.  That means you, too!

This is what community looks like.

Sunday, October 11, 2015

A Single Drop of Blood...

....is all it takes to create MS.
Forget about requiring a rogue virus or some deranged auto immune reaction.
You don't need to inject mouse brains with foreign antigens and create EAE.

Just one bit of blood on brain tissue activates the immune system and creates MS demyelination.


From the Gladstone Institute Press Release:
In the current study, published in Nature Communications, the scientists created a new animal model of disease to determine if BBB (blood-brain barrier) leakage can cause autoimmunity. They discovered that injecting just one drop of blood into the brain set off the brain's immune response, kick-starting a chain reaction that resulted in inflammation and myelin damage.

These findings offer a completely new way of thinking about how the immune system attacks the brain--it puts the blood in the driver's seat of the onset and progression of disease," says senior author Katerina Akassoglou, PhD, a senior investigator at the Gladstone Institutes and professor of neurology at the University of California, San Francisco. "This opens up the possibility for new types of therapies that target blood coagulation factors, upstream of autoimmune processes."
"Our results provide the first evidence that blood promotes T cell responses against the brain," says first author Jae Kyu Ryu, PhD, a staff research scientist at the Gladstone Institutes. "Not only did we confirm that the presence of blood in the brain recruits peripheral immune cells to the area, which is sufficient to cause myelin destruction, we also identified fibrinogen as the critical protein driving this process."
"These findings question a long-held paradigm that myelin-specific T cells initiate inflammation in the brain through activation of microglia and brain macrophages," says Scott Zamvil, MD, PhD, a professor of neurology at the University of California, San Francisco and co-author on the paper. "This study demonstrates that the original paradigm may also occur in reverse. Namely, initial activation of microglia and brain macrophages may activate T cells."


Why didn't we know this before? Shouldn't we know this???

Well, we do. We see this reaction in stroke and vascular dementia in humans. And stroke specialists have published on the immune system response to blood in the brain. But MS specialists don't talk to other doctors, and they have chosen to stick to the EAE autoimmune mouse model--come hell or high water-- and consistently ignore the vascular evidence. Here's a blog post I wrote about the autoimmune response in stroke back in 2010.

You'd think this idea of blood in brain tissue would have been tested by now, especially since we know that people with MS have microbleeds in their brains, as seen on 7T MRI. Dr. Yulin Ge discussed this at the 2014 ISNVD conference. People with MS have tiny, pinpoint bleeds in their brains, only seen on the most powerful MRIs. Blood is not supposed to breach the blood brain barrier. But for some reason, in MS, it does.

In 2015 we finally have an actual animal model, created by the innovative Gladstone Institutes (go, Silicon Valley!), demonstrating that injecting one single drop of blood into the brain begins an "immune response akin to MS."

The Gladstone Institute has been honing in on the blood for several years now. Dr. Katerina Akassoglou has published in the past decade on how leaking fibrinogen, a clotting protein found in blood, can trigger inflammation in the brain. http://www.nih.gov/news/health/nov2012/ninds-27.htm

Dr. Akassoglou's premise has been that fibrinogen causes neuronal damage to the MS brain. With this current study, Dr. Akasssoglou and her colleagues saw the actual result of this leakage--activation of the immune system.
I would like to suggest that instead of rushing off to create the next MS drug bonanza--based on coagulation factors and blocking fibrinogen-- perhaps researchers would like to revisit MS disease etiology? Perhaps it is time to reconsider the vascular connection to MS? To study how altered venous hemodynamics might be affecting the endothelial wall of vessels, and creating permeability?

Maybe we should figure out what is causing these microbleeds in the MS brain, and why fibrinogen is there in the first place?

Want to cure MS? Let's discover the cause of MS.

Here is Dr. Yulin Ge's description of tiny micro bleeds seen in MS brains in vivo, with 7T MRI.
These pinpoint drops of blood precede demyelination.

Dr. Mark Haacke's presentation on SWI technology and imaging the MS brain is also a good place to start.

Or how about Dr. Paolo Zamboni's "Big Idea" paper from 2006, where he outlines the similarities of MS and venous disease? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633548/

In the past year, we have learned that the brain has an immune system and lymph vessels--that the brain's immune privilege is a myth. http://ccsviinms.blogspot.com/2015/06/rewrite-textbooks.html

And this week, we learn that a single drop of blood in the brain can cause MS---just like the micro bleeding seen on MRI.

We are in the midst of a huge paradigm shift in MS research.

Here's the preliminary program for the 2016 ISNVD conference in NYC next April. Lots of discussion on microvasculature imaging in MS. And Dr. Yulin Ge, Dr. Mark Haacke and Dr. Paolo Zamboni will be presenting! The keynote speaker will be the scientist who discovered the brain's lymphatic vessels, Dr. Jonathan Kipnis.
 Please come, MS specialists and researchers---I guarantee you will learn something.

Let's not let this moment pass us by. Get this research to your local universities.
Tweet about it, share it in your community. Ask your MS Society to fund further research into the vascular connection. Support groups like the ISNVD. www.isnvd.org Educate yourself and others in the MS community.

The vascular connection to MS is real.

It's as real as a single drop of blood.


Friday, October 9, 2015


I know.  Reading medical words causes the brain to shut down.  I completely get it.
I've watched, as Jeff's eyes roll into the back of his head as I start discussing some new paper.  He just doesn't like medicalese in the same way I do.  And he teases me all the time.  While taking a bite of salad,
"So, is this good for my phytonutrient endothelial lifestyle?"
Or on a walk with the dog,
"Am I irridicating my endothelial dysfunction yet??"
Yeah, he's a really funny guy.  Thirty one years of his teasing me, since we got married in college.  The laughs just don't stop in our home.  Which is a good thing, since laughter is part of the endothelial health program!  :)

I know that I have become the broken record.  The pain in the neck naggy Mom who is always checking to see if you have a sweater, or brushed your teeth.

But I really can't stop harping.  Because your endothelium is so important.
Please, just hear me out.
Let me explain.

The lining of all 60,000 miles of vessels in your body---this includes arteries, veins and lymph vessels---is lined with your body's biggest organ (yeah, not that one, Jeff...)
It even serves as your blood brain barrier, to protect your brain from plasmic particles--like iron and coagulation proteins, or viruses, or bacteria--which are severely damaging to your brain tissue.

Your miraculous endothelium.  Say it with me,  en-do-the-li-um!!!  All of the tiny endothelial cells fit together to form a special lining, guiding the blood and lymph flowing inside your vessels.

Picture the waterproof lining roofers put on your roof before they add roof tiles. You've got your plywood layer down first, and you need to protect it (that's your body tissues).  So, the roofers put down a waterproof membrane (your endothelium.)  On top of that go the shingles (that's the vessel)  Once the rains come (bodily fluids), the health of your home DEPENDS on the waterproof lining doing it's job and channeling water into your gutters.  Even though the roof and plywood seem much stronger, they need that membrane.  If the waterproofing membrane has holes, or is in bad condition, you're going to have a problem.

Same thing with your endothelial layer.  If you've got a problem, it's called endothelial dysfunction.  And this problem is found in multiple sclerosis, heart disease, dementia and Alzheimer's, and a whole host of other diseases which are linked to heart and brain health.  Leaky and faulty endothelial layers allow plasmic particles into your brain and cause inflammation.  Faulty endothelial cells don't allow blood and lymph to flow smoothly and create slowed cerebral blood flow, or "hypo perfusion."

The good and bad news is that there are a lot of environmental factors that affect your endothelium.  That means there are things you can do, or not do, to help it.

When I started blabbering on about endothelial health to Jeff and all who would listen-- back in 2008---there wasn't as much research published on the link of endothelial health to MS.  But there sure is a lot more now.  link

I sent my program to Dr. John Cooke at Stanford, and he thought it made sense.
Here it is.  Please check it out.  It works.  Honest!!

Don't let medical words keep you from the truth of the research.
There are things you can do, starting TODAY, to improve this lining.  To feel better, to decrease MS symptoms, to decrease MS progression, to increase health and vitality.

Endothelial cells are very forgiving.  They can heal and repair.
And that's why I'm going to keep harping and nagging and take the teasing (you hear me, Jeff??!!)

Learn about your endothelium.

Because you matter!