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

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!

UPDATE 2018---Jeff remains MS progression free eleven years after diagnosis, with no new lesions, and a continuation of healing.


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