Welcome! This blog contains research & information on lifestyle, nutrition 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 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

Monday, December 7, 2015

Vitamin D News--it boosts remyelination!

This just in today----

Vitamin D boosts remyelination
Researchers at the University of Cambridge set out to find what controls oligodendrocyte progenator cells (OPCs) ability to differentiate and create myelin--and discovered that it is Vitamin D which binds and activates vitamin D receptors and controls myelin sheath regeneration.  In fact, remyelination of axons is impaired when Vitamin D receptor (VDR) is blocked.  When Vitamin D was added to the brain's stem cells, production of OPCs increased 80%.
http://www.eurekalert.org/pub_releases/2015-12/rup-asf120115.php

In case we need even more proof that Vitamin D is an important part of MS recovery,   I'd like to round up the latest crop of papers, published in 2015,  linking higher Vitamin D levels with better health for people with MS.


Vitamin D prevents brain atrophy
Researchers at Yale University discovered that higher serum levels of Vitamin D is linked to higher levels of gray matter in the brain, and lower rates of tissue loss, or brain atrophy, in MS. They looked at 65 pwMS and measured brain volume on MRI.   The strongest correlation was between low Vitamin D levels and brain atrophy.
http://onlinelibrary.wiley.com/doi/10.1111/ene.12844/abstract

Vitamin D strengthens endothelial cells
A study from the University of Utah found that Vitamin D stabilizes the endothelium and strengthens the vasculature.  It acts directly on endothelial cells to inhibit vascular leak.  Since inflammation and "auto-immune" reactions are a function of plasmic particles leaking into tissue and setting off an immune reaction (in places like the gut or blood brain barrier)---finding ways to strengthen endothelial cells is vitally important.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4607301/pdf/pone.0140370.pdf

Higher Vitamin D levels means more time from RRMS to SPMS conversion
Researchers in the Netherlands found that there was an association of low Vitamin D levels at the start of diagnosis of MS which was linked to an early conversion to SPMS.  Those with higher Vitamin D levels took longer to convert to SPMS.
http://www.ncbi.nlm.nih.gov/pubmed/26598277

Higher levels of sun exposure decreases MS risk
Australian researchers find the UV ray exposure is associated with lower MS progression rates and disease activity, through both Vitamin D and non-Vitamin D pathways.  UV rays modify and regulate immune cells.
http://www.futuremedicine.com/doi/full/10.2217/nmt.15.33


Pretty impressive research!  But are the benefits of Vitamin D for those with MS simply recent news?  Not really.  Dr. Ashton Embry's Direct-MS site is where Dr. Terry Wahls and many of us first heard about the connection between Vitamin D and improved MS outcomes almost a decade ago.  In fact, Direct-MS funded two trials on Vitamin D, and both had very positive results published in 2009 and 2010.  Thanks to the Embry Family for funding and pushing this research!
http://www.direct-ms.org/plannedresearch.html

I've been writing about the therapeutic powers of vitamin D on the vascular endothelium since 2008.  I also included sunshine and UV rays.
 http://ccsvi.org/index.php/helping-myself/endothelial-health

Here's a blog post from 2010, where I explain how Vitamin D provides "vasculoprotection" and prevents brain atrophy.
http://ccsviinms.blogspot.com/2010/07/vitamin-d-provides-vasculoprotection.html

Here's some completely anecdotal evidence from our home:
Jeff's Vitamin D level has stayed around 70ng/mL since he began supplementing and getting rays, and he continues to do well, with no MS progression or disabilities.  His Vitamin D level was at 15ng/mL when diagnosed for MS in 2007.  We had to pay for his first D3 test, since it wasn't covered by insurance. Our doctor asked why we wanted his D3 levels tested, and I shared the Direct-MS site with her.  Since then, our insurance company has seen the light (pun intended!) and covers yearly testing of D3 levels.  As for me, I hadn't been taking any D3 supplements, but that's recently changed. This past spring, my level was 17ng/mL and I was put on a high dose (50,000IU) weekly dosage for 2 months.  My levels are now good at 65g/mL and I maintain that with 4,000IU daily. I have much less arthritis pain and more energy.  There's a link to optimizing Vitamin D levels for healthy people, too.

Also know that there are many environmental factors which can contribute to a lower Vitamin D status- including obesity, older age, living in a more northern latitude with less UV exposure, smoking, skin color and pigmentation, micronutrient and mineral deficiencies (especially magnesium and zinc) and genetic mutations on the Vitamin D receptor (VDR) gene---and all of these factors may influence your serum Vitamin D levels.

So, while this info on Vitamin D is not new or ground-breaking for most following MS research, it is further building on the foundation.  Let this be a shout out to all people with MS.  Find out what your Vitamin D levels are, and make sure you optimize them!  This doesn't always mean simply taking a supplement.  It might involve more sun exposure or phototherapy, quitting smoking, losing weight and eating a whole food diet.  Work with your healthcare provider to establish the best program for you, and get those numbers up!  And don't forget, it's not about one pill or supplement, it's about living a new life.


Be well,
Joan




Thursday, December 3, 2015

Confrontation

I was minding my own business, internally humming a John Philip Sousa march to keep up my pace (yes, I am a marching band nerd), as I hiked along the trail near our home.  Up ahead, about 25 yards ahead of me, I saw a coyote searching for prey in the underbrush.  It wasn't one of the scraggly coyotes we usually see in our neighborhood, it was rather large and well-fed predator.  A fighter.  Instead of continuing on the trail, I made an immediate decision to turn around, and headed back towards the main road.  I was in no mood for a confrontation.  I know that most coyotes will scare if you make a loud noise and look big and threatening, which isn't too difficult for me as a rather sturdy opera singer.  Studying this particular animal, I didn't feel as sure of my human superiority.  I went the other way and avoided the confrontation.

Lately, I've been feeling bombarded by confrontations.  Maybe you do, too?   We live in an exceedingly argumentative, in your face world.  Perhaps it's always been so, but I think we're all acutely aware of this fact, thanks to social media.  Our "news" sources pick up on this basest human desire for conflict, and provide us lots of clickable headlines.  Folks feel comfortable posting the vilest comments, hidden behind screen names and walls of anonymity. The more provocative the headline, the more clicks.  It's no longer about presenting actual news, it is about framing occurrences in a particular world view with a large side order of opinion. Clicks are selling soap these days.

Politicians understand this, and we are deluged daily with verbiage that seems as though it was transcribed from a middle school bathroom wall.  It's beyond shocking, and more saddening is the fact that it appears to be connecting with people.  Our family visited Washington, DC last summer, and I was moved to tears as we read President Lincoln's words inscribed on his memorial.  Will we ever hear this kind of intelligent, thoughtful discourse again?   We need to expect better from potential world leaders.

We all sense the precariousness of life.  Confrontational ideologies and words lead to avenging with guns and bombs.  As our population grows and natural resources become more scarce---water, clean air, trees, food, and yes, even oil---we are going to have to figure it out.  It is going to take a concerted effort.  May we be led, as Lincoln quoted Dickens in his inaugural speech,  by "the better angels of our nature."

For those of us who have been advocating for research and treatment in venous disease and multiple sclerosis, the initial push back and confrontation first came as a surprise, but is now a given.  When I brought Dr. Zamboni's research to Stanford University, I truly expected MS specialists to greet this research with enthusiasm and interest.  My naivete soon gave way to an understanding that research for a disease which already had 20 billion dollar a year pharmaceutical model would be guarded by the gate keepers of industry.  Why learn about MS etiology and help people, when there's already so much money being made on drug treatments?

As advocates for expanded MS research, we've all dealt with this confrontation and controversy. We've written letters to politicians and researchers, confronted MS specialists at rallies or conferences, made videos, replied to badly researched and one-sided news stories,  posted studies and research online,  raised money for clinical trials,  put on international conferences, started non-profits,  and shown up for each other.  At times, it's felt hopeless and exhausting.  But the truth is, we've all made a difference.

We may not have confronted the coyote head-on, but we have found ways around him.  By not going away and showing up.  By supporting research and sharing information with each other. By being encouraging and kind.  We just kept moving.

My walk took longer than normal today.  Because I chose to avoid a confrontation, I had to back track and head out to the road.  But that was just fine. I was able to talk to two of my neighbors and share gardening and health chit chat.  I got more exercise, hummed my Sousa march a bit longer, got more sunshine, and had this thought, which I've now shared with you.  Finding ways around confrontation, whether online or across the holiday dinner table, can sometimes reap wonderful rewards.

"In the confrontation between the stream and the rock, the stream always wins.  Not through strength, but through persistence."  Buddha


Peace,
Joan









Tuesday, December 1, 2015

Moving forward

Research into the vascular connection to MS is continuing and expanding in scope.  I am heartened to see one particular group of researchers growing in size and addressing many new discoveries.  The ISNVD is moving forward.

The program and registration for the 2016 International Society for Neurovascular Disease 6th Annual Science Meeting is now online.
http://www.isnvd.org/newyork

From the announcement:
We are proud to announce that the 6th annual ISNVD scientific meeting will take place in lower  Manhattan, New York City on April 29th and April 30th of 2016.
During the past few years, the field of neurovascular disease has witnessed a vast growth in clinical and translational research. 

One of the most exciting revelations in this "vast growth" will be presented by keynote speaker, Dr. Jonathan Kipnis from the University of Virginia.  Dr. Kipnis will be presenting on his lab's landmark discovery of the brain's lymphatic vessels in "The Brain Drain, Meningeal Lymphatics and Neurological Disorders."  You might remember the attention his research received in Scientific America and the medical press, when headlines proclaimed the existance of a link between the brain and immune system.  

Here's more on this "stunning discovery."

As the Journal of Experimental Medicine stated, it is time to "rewrite the textbooks."

Why does Dr. Kipnis' research matter?  Because he has discovered that the brain's immune system relies on the veins which drain the brain.   

Other recent research, like Gladstone Labs discovery that a drop of blood can instigate an MS-like immune reaction in the brain, is important in light of opening day topics such as Dr. Alireza Minegar's discussion of "MS as a Vascular Disease" and Dr. Chih-Ping Chung's presentation on cerebral micro bleeds.

And there will be much discussion on clinical trials for treatment, as specialists from Italy, the US, Australia, and Bulgaria will speak about their treatment trials for vascular interventions in neurovenous disease.  

Here is the program:

As we learned in 2015, the brain is not immune privileged.  It is connected to the body's lymphatic system by vessels which rely on veins for drainage.  We also learned that it does not take an "autoimmune" reaction to cause MS.  As in stroke or traumatic brain injury,  all that is needed is to initiate myelin-destroying inflammation is plasmic particles breaking through the blood brain barrier.  These discoveries point to the undeniable connection of the brain to the vasculature.

The current resistance to this very real connection and dogged insistance on the 80 year old mouse model of multiple sclerosis is holding back research.  It will be independent groups, like the ISNVD and Gladstone Labs, who will break through the pharma-controlled impasse in MS research, and find real solutions, based on current scientific evidence.

In the meantime;  live your best, heart-healthy life.  Don't smoke, move your body every day, eat nutritious whole foods, manage stress, get sunshine and supplement Vitamin D and B, if warranted.  There are things you can do today to help your brain heal.  

Don't believe me?  Just check out Dr. Norman Doidge's new, NY Times Bestseller book, 
The Brain's Way of Healing    

They thought that the brain
was too sophisticated for its own good.
That during evolution it became so complex
that it lost the ability to repair itself and
to restore lost functions
or to preserve itself.
They were wrong.
Because it turns out that its very sophistication
can be the source of a unique kind of healing…
The brain’s way of healing…


Here's to moving forward, and leaving the old, incorrect assumptions behind.

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.”
http://motherboard.vice.com/read/canadas-new-science-minister-supports-a-widely-debunked-medical-treatment


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.
http://ccsvi.org/index.php/component/search/index.php?option=com_search&task=search

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

http://archneurpsyc.jamanetwork.com/article.aspx?articleid=646487

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.”
http://www.ms-mri.com/index.php?site=history


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.

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.
http://carcin.oxfordjournals.org/content/17/3/515
http://brain.oxfordjournals.org/content/128/6/1461

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.
http://www.bezpecnostpotravin.cz/userfiles/file/kvasnickova2/n-nitroso_database.pdf

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.
http://dhss.delaware.gov/dph/files/nnitrosofaq.pdf

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 ().
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4342365/

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.
http://ccsvi.org/index.php/helping-myself/endothelial-health
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!
Joan


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.
https://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/dr-philip-james-on-ccsvi/10150221964462211

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!!
Joan





Sunday, October 18, 2015

Community

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!
https://www.facebook.com/CanadianNeurovascularHealth

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.
Joan


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.
http://ccsviinms.blogspot.com/2010/12/the-autoimmune-response-in-stroke.html


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.
http://ccsviinms.blogspot.com/2014/03/blood-matters.html

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.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2579786/

Dr. Mark Haacke's presentation on SWI technology and imaging the MS brain is also a good place to start.
http://www.ms-mri.com/presentations/Imaging%20Iron%20in%20MS%20using%20Susceptibility%20Weighted%20Imaging%20(SWI).pdf

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.
http://isnvd.org/sites/default/files/Preliminary%20Website%20Program-Schedule%209-11-2015.pdf

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.


Joan







Friday, October 9, 2015

Endo-the-what???

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, 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.  http://ccsviinms.blogspot.com/2015/07/new-research-ms-as-disease-of.html

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.
 http://ccsvi.org/index.php/helping-myself/endothelial-health

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!
xo,
Joan





Tuesday, September 22, 2015

Melatonin and MS

New research shows the connection between low levels of melatonin, known as the sleep hormone, and MS relapses.

Melatonin is the hormone which helps encourage our sleep state.   It is made by the pineal gland in our brains, and it needs the visual cue of darkness in order to begin production.  We naturally produce more melatonin in the fall and winter months, because darkness is more prevelant.  This is why we might find ourselves sleepier and more likely to want to hibernate during these darker months, because our brain is cranking out melatonin.

New research is linking this lower level of melatonin found in spring and summer to seasonal relapses in MS.
http://www.cell.com/cell/fulltext/S0092-8674(15)01038-7

It appears that in humans with MS, the lower levels of melatonin found in their blood during the sunnier months might be linked to MS progression and relapse rate.  That is, there is a correlation between seasonal low melatonin levels and clinical relapses.  (It's always important to make the distinction between correlation and causation---  the researchers are just noticing that in people with lower levels of melatonin, there were more frequent relapses...but, if you read this whole post, I hope I'll explain why this might be.)  Don't go out and buy melatonin just yet!

The researchers who are studying melatonin weren't quite sure why it is so helpful to people with MS.   So, they go to the EAE model of MS in mice and studying t-cell modulation.  ARGHHH!!!!   Why???

We don't need to look at EAE in mice---we already have a correlation of melatonin levels in brain health for HUMANS.

When we look at MS as a disease like stroke in humans, where hypoxic injury and reperfusion injury damage the endothelial layer of the brain's blood vessels....it all makes sense.

Because melatonin protects the brain's endothelial cells under hypoxic and oxidative stress conditions.
http://www.hindawi.com/journals/omcl/2014/639531/


Melatonin has a cellular protective effect in cerebrovascular and neurodegenerative diseases. Protection of brain endothelial cells against hypoxia and oxidative stress is important for treatment of central nervous system (CNS) diseases, since brain endothelial cells constitute the blood brain barrier (BBB). In the present study, we investigated the protective effect of melatonin against oxygen-glucose deprivation, followed by reperfusion- (OGD/R-) induced injury, in bEnd.3 cells. The effect of melatonin was examined by western blot analysis, cell viability assays, measurement of intracellular reactive oxygen species (ROS), and immunocytochemistry (ICC). Our results showed that treatment with melatonin prevents cell death and degradation of tight junction protein in the setting of OGD/R-induced injury. In response to OGD/R injury of bEnd.3 cells, melatonin activates Akt, which promotes cell survival, and attenuates phosphorylation of JNK, which triggers apoptosis. Thus, melatonin protects bEnd.3 cells against OGD/R-induced injury.


Now in plain English---melatonin protects the endothelial cells of the blood brain barrier, and keeps those endothelial cells alive during times of of low oxygen and low glucose delivery--- so they can protect the brain.  Melatonin is a known anti-oxidant.  Just like fruits and vegetables.  

Another connection could be that people with MS who have lower levels of melatonin just aren't getting enough good sleep---and that could be the connection to higher relapse rates.  Especially now that we understand how the brain's lymphatic cleansing system works only when we sleep.

To complicate and confuse matters---melatonin has an inverse relationship with vitamin D.  In research in people with MS, it was shown that people taking higher Vitamin D supplementation had lower levels of melatonin. 

But we also know that lower vitamin D rates are correlated with MS relapses.  So, what's a human with MS to do?  Take melatonin???  Bump up vitamin D?  Do both?  How much?  When?  How...?  Light?  Dark?  

Bottom line:  Both melatonin and vitamin D are hormones which are also anti-oxidants, decrease inflammation and address oxidative stress. 

Long-time readers of this blog will know that it's never about one pill or supplement, it's about living a complete lifestyle which encourages endothelial health.   It's all about balance. And there are many ways to accomplish this.  

It's difficult to double-blind and research a complete lifestyle----which is why researchers will pick one aspect at a time---like Vitamin D levels, or melatonin levels, or cholesterol levels.  You get the picture.  

Have your vitamin D levels tested.  If they are low, supplement and get some UV ray therapy.  If you have trouble sleeping, or are jet-lagged,  talk to your doctor about possibly adding melatonin to your regimen.  But remember to move, and eat whole and colorful foods, and laugh, and reduce stress, and get good sleep.  It's a complete lifestyle, and no one pill or supplement can replace that.

Be well!
Joan





Tuesday, September 8, 2015

Celebration!

Our family has some great news to share!  Jeff's new MRI shows a continued healing of his brain and spine.  His cervical lesions are now "less prominent" than they were on his last MRI in 2012, an indication of remyelination.   He has no new white matter lesions, and, most importantly, his gray matter structures are all healthy and normal, with no signs of atrophy.  This MRI shows actual healing---not placebo---when compared to Jeff's very first MRI in 2007, which showed gray matter atrophy and enhancing lesions on the spine and brain.

It has been 8 1/2 years since Jeff's MS diagnosis, and 6 years since his venoplasty treatment at Stanford.  Jeff remains physically and mentally active, and has stayed on the Endothelial Health Program.  He has had no MS progression.  We do not take Jeff's health for granted.  We are very thankful for the wonderful CCSVI community and researchers, and we consider this blessing of good health something which we are responsible to share. We want to stay involved in the neurovascular community at large, because we remain convinced that it is essential to look at the brain's blood, cerebrospinal fluid and lymphatic flow when evaluating treatments.  

MS is an inflammatory disease in which neurodegeneration and gray matter loss is the only correlate to disease progression.  The autoimmune hypothesis remains unproven.  All of the current drug treatments---now, a $20 billion a year industry--- are based on the EAE mouse model of MS, which relies on stopping immune activation in the central nervous system, and uses white matter lesions to measure "success" of a disease modifying med.  None of these meds have been shown to stop MS disease progression.

New research on the brain continues to come in, and points to the brain's reliance on the major draining veins to maintain gray matter structures.  MS specialists remain intransigent;  by refusing to consider how slowed venous flow and endothelial dysfunction might be affecting their patients' brain health.

Yet the evidence continues.  Outspoken advocates who have treated their own MS with cardiovascular means of diet, exercise and lifestyle changes continue to speak out and gain followers.  These individuals are pointing the way to health and healing for the MS brain.

Dr. Terry Wahls  http://terrywahls.com

Matt Embry  http://www.mshope.com

Dr. George Jelinek  http://www.overcomingmultiplesclerosis.org

Jeff Beal  http://ccsvi.org/index.php/helping-myself/endothelial-health


Even though each program has specific dietary differences (paleo, anti-allergen, low fat)---it's important to notice the lifestyle measures which these programs SHARE.

1. Healthy, whole foods, with plenty of colorful organic fruits and vegetables
2. Removal of processed foods and transfats
3. Smoking cessation
4. Increased intake of Vitamin D with UV ray exposure and supplementation
5. Regular cardiovascular exercise
6. Meditation or some form of stress relief
7. Consideration of the blood, CSF and lymphatic flow to and from the brain
8. Good quality and regular sleep
9. Maintaining a healthy weight
10. Addressing microbiome health with probiotics

There are things that can be done today, to help the brain heal.  Will these measures "cure" or "end" MS?  None of us know that for sure.  There may well be genetic factors which contribute to highly progressive MS, that cannot be completely addressed by these programs.  But we now have years and years of evidence compiling---Matt Embry is out the furthest with 20 years of no disease activity, George Jelinek is at 16 years, and Terry Wahls and Jeff are at eight years.

These numbers are impressive, and they matter.
Please be encouraged (which literally means, to give heart!!!)
The heart and brain are connected, and it's possible to take care of them.
You can do it, one day at a time,

Joan and Jeff




Wednesday, August 5, 2015

MS News--It's deja vu, all over again

Following neurology headlines since Jeff's MS diagnosis 8 years ago--I've seen many exciting research developments in understanding the human brain.

Recent examples of game-changing research include
The discovery of the brain's lymphatic cleansing system, which occurs when we sleep.
http://ccsviinms.blogspot.com/2015/04/glial-cells-glymphatics-and-nedergaard.html

The discovery of the brain's lymphatic vessels, which mean that the brain is not immune privileged, and immune cells are needed in the CNS to insure brain health.
http://ccsviinms.blogspot.com/2015/06/rewrite-textbooks.html

And all of the discoveries made into the vascular connection to diseases of neurodegeneration published by the International Society for Neurovascular Disease (ISNVD)
http://ccsviinms.blogspot.com/2015/03/2015-isnvd-conference-abstracts.html

Meanwhile, MS research spins on a hamster wheel of repetition and dismal lack of progress.  It's been the same, sad headlines for the past eight years.   Nothing about disease etiology.  There is a complete disconnect between what is happening in neuroscience, and what is happening in MS treatment.

Here are today's MS "News" headlines--- (we've seen these over and over again)

PML, the deadly reaction to the JC virus found in immune-compromised individuals, is now being diagnosed in patients on MS drugs Tecfidera, Gilenya and Tysabri.
http://www.medpagetoday.com/Neurology/MultipleSclerosis/52930

White matter lesions are not meaningful in understanding MS progression, and gray matter disease is more closely tied to disability progression.
http://www.nature.com/nrneurol/journal/vaop/ncurrent/full/nrneurol.2015.140.html

Salt, lack of vitamin D and environmental factors like smoking contribute to MS progression, but MS specialists are not sure why.  Even though cardiovascular researchers already know these factors all contribute to endothelial dysfunction.  The heart-brain connection is continually ignored by MS research.
http://www.eurekalert.org/pub_releases/2015-08/foas-hsi080515.php
http://www.independent.co.uk/life-style/health-and-families/five-ways-to-boost-your-vitamin-d-levels-10437766.html
http://www.mstrust.org.uk/news/article.jsp?id=6850

And in a bumbling show of complete disregard for the cardiovascular connection to brain health, the MS Society of Canada asks Canadians to pledge to eat super-sized portions of french fries to "EndMS"!!!!!  You could not write this stuff, folks.   Simply unbelievable.
http://www.weightymatters.ca/2015/08/multiple-sclerosis-society-of-canada.html





What I find most troubling is that nothing has changed the $20 billion dollar a year MS treatment machine.  Drugs with harmful side effects, which calm inflammation but DO NOT address gray matter loss or disease progression, continue to be prescribed as "gold standard" treatment.    Patients are not being told that lifestyle changes-- such as exercise, vitamin D supplementation and UV ray exposure, whole food nutrition, limiting processed foods and transfats, not smoking, and getting good sleep--are all scientifically shown to make a difference in disease progression and calm inflammation in a less risky way.  Advocates who try to help people understand this, like Matt Embry, are sent cease and desist copyright infringement letters by the MS Society.  And no one, with the exception of the ISNVD and Dr. Zamboni, and advocacy groups like CCSVI Alliance, Direct-MS and the NCS, is discussing the vascular connection to MS.

MS research labs are funded, MS specialists get their speaking and consultation fees from pharma, the stock market and investors continue to follow MS drugs, MS Society leaders are paid, funds are raised from people eating french fries---- money is being made off of MS patients.
Yet no one is pursuing disease etiology.

I've talked to many researchers over these past years, and they are all frustrated by the lack of initiative and funding available to them.

Jeff and I are traveling, working, back to our careers and lives.  I keep blogging, hoping that drawing attention to research on the vascular connection might help someone.  Every month or so, I check the MS research headlines, and see the same ol' same 'ol.  Deja vu, all over again.

In the next few months, I will be posting links to my new podcast.  It will feature interviews with doctors and researchers who are passionate and committed to helping people heal.  I'll have more information available as I get further along in the process.  It will be available, for free, on iTunes and linked on a webpage.

I do not want to see the same stagnating MS headlines and failed treatments eight years from now--and I know none of you do, either!  We owe it to this wonderful MS community, we owe it to our children and their children.  If you have ideas for doctors, researchers or topics you'd like to hear addressed, please leave me your suggestions! I'll be speaking to functional medicine doctors, researchers and advocates.

Let's all be the change we wish to see, and get off the hamster wheel,
Joan



Monday, July 27, 2015

New research: Flow means Go

We are just beginning to understand the brain's lymphatic vessels, and how this newly discovered system may be implicated in neurodegenerative diseases like MS.  It will be important to consider the mechanistic system which enables lymphatic drainage to mature and function.  In recent experiments conducted with mice, veins are implicated in lymphatic flow.  In fact, when mice had veins that did not drain, but had a reflux of blood flow---like what we see in CCSVI---lymph stopped flowing.  And lymph vessels stopped forming correctly, due to endothelial dysfunction.

From a press release from the Perelmen School of Medicine at the University of Pennsylvania's Kahn Lab-- on research published in The Journal of Clinical Investigation's August issue:
http://www.uphs.upenn.edu/news/News_Releases/2015/07/kahn/

Flow means "go" for proper lymph system development
PHILADELPHIA--The lymphatic system provides a slow flow of fluid from our organs and tissues into the bloodstream. It returns fluid and proteins that leak from blood vessels, provides passage for immune and inflammatory cells from the tissues to the blood, and hosts key niches for immune cells. How this system develops hasn't been well understood, but now researchers from the Perelman School of Medicine at the University of Pennsylvania have found from experiments in mice that the early flow of lymph fluid is a critical factor in the development of mature lymphatic vessels.  

The project was prompted in part by recent studies of cultured lymphatic vessel endothelial cells that suggested that fluid forces could be an important factor in the maturation of lymphatic vessels. But there was no straightforward way to test this hypothesis in live animals. 
"No one had been able to come up with a way to stop lymph flow in embryonic animals, without preventing their lymphatic vessels from developing in the first place," said first author Daniel T. Sweet, PhD, a postdoctoral fellow in the Kahn Laboratory.

In humans and other mammals, the lymphatic system is a low-flow system that, unlike the blood circulatory system, has no central pump. Instead it relies on muscular contraction of the mature lymphatic vessel wall and small valves in lymphatic vessels to squeeze fluid along and prevent backflow.

Larger collecting lymphatic vessels receive many small inflows from lymphatic capillaries in surrounding tissues. "You can't just close one of the vessels to block flow downstream--there are many other tributaries coming in," said Sweet.
The solution to testing the role of flow in developing lymphatic vessels turned out to be a line of transgenic mice, developed earlier by the Kahn laboratory. Lacking a gene called Clec2, the mice fail to produce a certain receptor on blood platelets, with a remarkable result: veins that normally help drain the lymph system leak back into it. Like an ocean tide surging into a river, this upstream flow of blood stops the usual downstream flow of lymph.

What's more, the researchers found that smooth muscle cells, which normally form a thin lining in mature lymphatic vessels, and perform contractions that help lymph flow, instead formed an abnormally thick lining, as if the usual signal to shut off cell proliferation were missing. 
"We started off thinking that flow might have a role just in valve formation, but ended up realizing that flow is really controlling all aspects of the maturation of these lymphatic vessels," said Sweet.


If flow is essential for a healthy lymphatic cleansing system---which we now know is part of the brain as well as other organs---the lack of venous drainage for the brain and spine could have disaterous affects on immune cells and metabolite cleansing processes. And reflux and slowed flow of venous blood in the jugular veins--as noted in CCSVI--could be shutting down the lymphatic drainage system of the brain.  Endothelial dysfunction, which has also been noted in MS, also plays a role in the cessation of lymphatic flow.  Flowing fluids create shear stress, and are needed for healthy endothelial cells.  It's a virtuous cycle.

Venous flow matters. Jugular flow matters. Lymphatic vessel flow matters.  The basic science is being established.


Joan


Wednesday, July 15, 2015

New research: MS as a disease of Endothelial Dysfunction

We have a brand new peer-reviewed paper from the researchers of the ISNVD which is considering the vascular connection to MS.  It is called:
"Blood circulating microparticle species in relapsing–remitting and secondary progressive multiple sclerosis. A case–control, cross sectional study with conventional MRI and advanced iron content imaging outcomes" This paper is published in the Journal of Neurological Sciences.
http://www.jns-journal.com/article/S0022-510X%2815%2900309-3/abstract

The researchers looked at serum markers of healthy individuals and compared them to people with MS. (Can I just inject a "Hallelujah" here?  This was my dream eight years ago, and it is now a reality.)  What they found were that in people with MS, there are circulating microparticles in the blood that aren't found in healthy people.  These markers  (CD31+/CD51+/CD61+/CD54+)  are microparticles which are shed from the lining of the damaged endothelium.  We see the same markers in cardiovascular disease.  These markers are associated with coronary artery disease, hypercoagulation, thrombosis (clotting) and stroke.
http://onlinelibrary.wiley.com/doi/10.1111/j.1538-7836.2010.04007.x/full

Endothelial microparticles (EMP) are shed by dying and injured endothelial cells.  They cause hypercoagulation, inflammation and contribute to vascular disease.   They slow blood flow.
http://atvb.ahajournals.org/content/31/1/27.abstract

It's been eight years since I first put together research on MS as a disease connected to blood flow and the vascular system.  What I saw in Jeff's blood results when he was diagnosed during his first severe flare---hypercoagulation, high c reactive protein, high inflammatory markers---looked to me like a vascular reaction caused by endothelial dysfunction.  I sent the research I compiled to university researchers, and created a nutrition and lifestyle program for Jeff, to address this issue.  My hope was that he could find stability in his disease process, by reducing the impact of vascular endothelial dysfunction.  I saw that cardiovascular researchers, like Dr. John Cooke, were having great success with their heart patients, and that encouraged me!  And sure enough, after three months on the Endothelial Health Program, Jeff's serum markers of endothelial dysfunction were lowered, and his MS stayed in remission.

What I saw in Jeff's serum markers was real.  Although his neurologist claimed it had "nothing to do with MS"---it appears that wasn't true, and Jeff is not alone.  These markers were shown to be correlated with lesions and brain atrophy in MS using SWI and MRI scans.

Here is the conclusion from the researchers:  These results indicate that circulating microparticles' profiles in MS may support mechanistic roles for microvascular stress and injury which is an underlying contributor not only to MS initiation and progression, but also to pro-inflammatory responses.

This means that stress and injury to the endothelial lining, also known as endothelial dysfunction, may be a contributor to MS initiation and progression.

The good news is that there are things we can all do today to reduce endothelial dysfunction,  cellular stress and injury and bring these serum markers down.  The hope is that by helping the endothelium heal, we can limit microparticle shedding into the blood, and reverse this inflammatory process.

What would be the next step?  Retest the microparticle levels in pwMS after they have been on the endothelial health program for months/years---and see if this correlates to a slowing or stopping of MS disease progression.  If Jeff is any indication, there is great hope. 

Here's the Endothelial Health Program.
http://ccsvi.org/index.php/helping-myself/endothelial-health

Talk to your own doctor, see if it might be something you can do.  I am not a doctor, so it's always best to consult one before beginning a new regimen!  Keep an eye on your blood levels of Crp, hypercoagulation, d-dimer, AST and ALT, and serum cholesterol--as well as vitamin D and B12 levels.  


Keep learning, keep moving and keep hoping!  More answers ahead,
Joan