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, April 29, 2014

New research on UV rays and MS symptom reduction

Most of you know about my suggestion that people with MS seek UV ray therapy, by spending ten to fifteen minutes in sunshine daily, or using UVB phototherapy in less sunny locales.  Not just to maintain healthy Vitamin D levels, but to boost levels of Nitric Oxide (NO).

I first wrote about this in the Endothelial Health Program in 2008.  We make sure Jeff gets his daily rays (as well as daily exercise and phytonutrients.)  Here's the program again, for new readers.

In the following note, I wrote about the ground-breaking, Noble prize winning research of Dr. Furchgott--he discovered the importance of Nitric Oxide and the process of "photorelaxation" or the vasodilation that occurs thanks to UVB rays.

Dr. Furchgott discovered the process of photorelaxation over 40 years ago.  What he noted in the lab was that exposure to UV rays changed the endothelium, encouraging nitric oxide production and vasodilation of arteries.  

It would be decades later Dr. Richard Weller discovered exactly how UVB rays released nitrates via our skin--and explained how this could explain the connection of latitude and heart disease.

Dr. Richard Weller of Edinburgh University reports on research finding that when skin is exposed to UV rays for 20 minutes, vasodilating nitric oxide is released.  This effect is independent of vitamin D levels--and may explain why even if D levels are raised by supplementation, the full benefit is not received.  

So, I was understandably interested to see a group of neurologists looking at the effect of UVB rays on people with MS.  

The neurologists first look at the murine model of MS, called EAE.  But, as Dr. Weller explains in his wonderful TED talk---mouse models do not work when we're discussing UVB rays and their affect on humans....because mice do not process UV the same way we do.  They do not have the same skin.  After learning this, Dr. Weller did all of his research on his student lab assistants, and as he quips, "They are cheap, and no one pickets you saying, save the lab assistants!"

Here's Dr. Weller on his discovery of what UVB rays do in humans.  If you haven't watched this TED talk yet--please do!  You'll thank me later.  (For a scientist, he's really entertaining!) 

Alright, back to the new paper from the Department of Neurology in Munster, Germany, which is titled:
UVB light attenuates the systemic immune response in CNS autoimmunity.

Here's what they saw in humans....an anti-inflammatory response in MS due to UV ray exposure.

Additionally, patients with relapsing-remitting MS were treated with narrowband UVB phototherapy. Immunomodulatory effects were examined in skin biopsies, serum samples and in immune cells of the peripheral blood. 
Results: Regulatory T cells (Tregs), which are induced locally in the skin-draining lymph nodes in response to UVB exposure, connect the cutaneous immune response to CNS immunity by migration to the sites of inflammation (blood, spleen, CNS). Here, they attenuate the inflammatory response and ameliorate disease symptoms. Treg-inducing tolerogenic Dendritic Cells (DCs) were further necessary for induction of this systemic immune regulation by UVB radiation since ablation of Langerhans cells abolished the UVB-induced phenotype. MS patients treated with UVB phototherapy showed an increase in induced Tregs and tolerogenic DCs accompanied by the downregulation of the T-cell effector cytokine interleukin (IL) -21. The treatment further induced elevated serum levels of vitamin D. Interpretation: Local UVB radiation of the skin influences systemic immune reactions and attenuates systemic autoimmunity via the induction of skin-derived tolerogenic DCs and Tregs.

Now, in English :)  When people with MS were exposed to UVB rays, their lymph nodes responded by sending out regulatory t cells to areas of inflammation.  These Treg cells are"good guys."  They calm inflammation.  And Tregs are enhanced by UVB rays via skin cells.  People who got UVB rays had a reduction of MS symptoms.  No prescription necessary.

That's right---neurologists are telling us that UVB rays helped pwMS! 

In fact, we already know this happens.  It's why UV ray phototherapy is used for patients with psoriasis.  UV light increases Treg cells, which in turn reduce inflammatory cells.

How, exactly, does this happen?  Although it's not mentioned here, other researchers have explained it ...Wait for it.....it's Nitric Oxide!

Nitric Oxide (NO), the marker of endothelial health, is also responsible for helping those treg cells leave the lymph nodes and head to sites of inflammation, calming MS inflammation and symptoms.  The same Nitric Oxide that Dr. Weller has shown to be released from human skin cells by UVB rays.  It's all connected.

The endothelium is the interface between our vascular and immune systems.  The lining of our blood vessels connects every inch of our body.  Nitric Oxide is essential for our health.  And we can boost NO with nutrition, lifestyle, exercise, meditation, and sunshine.

I continue to hope that neurologists will reach out across the aisle, and work with endothelial specialists, to understand the intricate interplay between our vascular and immune systems. To move beyond the credo of EAE and autoimmunity, which may exist in mice, but not in men.  To understand the connection of the heart and the brain, via the vasculature.  The ISNVD is looking at this connection, and they want neurologists to join them.

It's all there.
Sunny days ahead,

Saturday, April 19, 2014

"Unproven" Treatments for MS

When MS specialists discuss treatment modalities for people with MS, they use a specific phrase to refer to disease modifying drugs, which have been through the pharmaceutical trial process.  These MS therapies are referred to as "proven treatments."  Simply, this means is that the drug has been clinical trialled in a double-blind, placebo controlled trial.  This is considered the gold standard for proving a treatment is effective.

But this does not mean is that the drug actually does anything to slow progression of MS.

It simply means the drug is "proven" to slow relapses and new lesions when compared to placebo.  This does not mean it is proven to slow gray matter atrophy, to help with symptoms, or slow disability or progression.

Neurologists will steer their patients towards these "proven treatments", because they have attended symposia and conferences where only the best, cherry-picked results of clinical trials are released.   Side effects are often down-played, because MS is such a devastating disease.  They will hear about reduction in relapses and reduced enhancing lesions on MRI.  They will be told this treatment is proven, and they will receive incentives for prescribing these medications to their patients.

But what of the "unproven" treatments for MS?  These are often lumped together by MS Societies and neurological organizations as "alternative treatments" and discussed with barely disguised disdain. But that doesn't mean these treatments don't help people with MS.  Nor does it means there isn't published science regarding these treatments, showing their efficacy.  It just means pharma does not sponsor the placebo controlled clinical trials.  No one is paid to tell you about an alternative treatment.

Here's a recent example.  Aerobic exercise increased brain size in people with MS 16.5%, and improved memory 53.7%.  It's been shown to be effective, and is "proven" in scientific research.  There are no toxic side effects.  Yet exercise is still called "alternative" by MS specialists.

It is impossible to have a double blind placebo controlled trial for venoplasty and lifestyle modification which includes endothelial health, whole food nutrition, exercise, smoking cessation, meditation and UV ray therapy.

It is impossible to have a placebo-controlled trial for a new life.

Where does this leave us?  With a lot of "unproven," anecdotal evidence that has been accumulating for seventy years.

Dr. Swank came up against this brick wall in the 1950s.  He had plenty of anecdotal evidence that his patients--who were on a low fat diet and staying physically active--did better.  They had slower MS progression and remained mobile into old age.  But medical science would not accept his evidence, because it was not from placebo-controlled clinical trials.  Dr. George Jelinek and Dr. Terry Wahls come up against the same brick wall today.  Dr. Paolo Zamboni created a furor, by suggesting that these "proven" MS treatments were merely going after a secondary reaction of the CNS due to slowed venous return from the brain.  His CCSVI research, although proven to be relevent to MS and neurovascular disease, resulted in the most heavily debated "unproven" treatment.

I live with someone who was told- at his MS diagnosis seven years ago- that sadly, he would most likely not be walking much longer.  As his neurologist reviewed his lumbar puncture and MRI results, my husband was told that his MS, which had been diagnosed in his forties with many enhancing lesions, was the type shown to be rapidly progressive in men.  His neurologist was sorry that she could not prescribe the most effective, proven treatment, Tysabri--because it had just been taken off the market by the FDA due to (at that time) the deaths of a few patients.  She suggested Copaxone, another "proven" treatment, and sent us on our way, with the advice to "do everything you can right now!"

Seven years later, Jeff visited his neurologist for a check-up last week, where he told her of his recent trip to Israel and hike up to the top of Masada.  He discussed his mountain biking, hiking and active lifestyle, which he credits to his successful venoplasty at Stanford University in 2009 and his new life--full of phytonutrient rich food, UV rays, stress reduction and aerobic exercise.  All "unproven" treatments that have changed his MS course.  His gray matter atrophy has been reversed, he has had no further MS relapses in seven years.  "You are very lucky!", says his neurologist.  His health and MS disease cessation is called an anomaly, because there was no placebo-controlled, age matched patient to compare him to.

Like thousands around the globe, Jeff has used "unproven" treatments to regain his health.  Sadly, these treatments will remain "unproven."  They will be discussed in a neurologist's office with an eye roll and disdainful laugh.  The way Dr. Aaron Miller mocked me when I told him two years ago that Jeff had returned to downhill skiing.

"Ha!  You're kidding!  You still believe in CCSVI!  Hope your husband keeps skiing!",  Dr. Miller said to me with a cold laugh as he turned away from me, and walked back into the AAN conference meeting.  Back into a gathering of MS patients and neurologists, where he would tout the newest "proven" treatments for MS.

Two years later, Jeff's doing even better, Dr. Miller.  And yes, I still believe.  The science will eventually clarify MS disease progression.  In the meantime, we'll continue to live well.


Tuesday, April 15, 2014

Stenting carotid artery stenosis improves cognition

While neurologists continue to insist that cerebral blood flow isn't all that important to brain health---vascular surgeons are finding out that a simple endovascular treatment can help their patients' memory and cognitive function.

25 patients were treated with carotid artery stenting.  These patients were elderly and had carotid artery stenosis, but were asymptomatic (since they had not had strokes.)   Their arteries were simply
closed off and the blood flow going to their brains had been slowed, resulting in hypoperfusion.  These patients showed cognitive impairment in a variety of functions, which were assessed before their treatment.

Six months after carotid artery stenting treatment there was significant improvement in neuropsychological testing for all patients. 

RESULTS:  There were no neurological complications during the procedure or during hospitalization in any patient. No deaths or cardiac complications occurred in any patient. 
The pre-procedure neuropsychological study showed cognitive impairment in: information processing speed in 15 patients (62.5%), visuospatial function in 14 (56.0%), memory in 18 (72.0%), executive functions in 14 (56.0%), language in three (12.0%), attention in 10 (40.0%), and global cognitive performance in eight (32.0%).
Comparison of these scores with those obtained 6-month post-procedure showed significant improvement in GCS in all patients (p = .002), with a particularly marked gain in information processing speed (p = .018). Although significant improvement was not found for the remaining cognitive functions assessed, some gain was documented, and there was no deterioration.
Revascularization by transcervical CAS with flow reversal for cerebral protection results in improved neurocognitive performance in asymptomatic elderly patients with severe carotid artery stenosis.

How does this relate to CCSVI?  

People with MS have cerebral hypoperfusion.  This is scientific fact.


There has been an association found between slowed venous return, hypoperfusion and MS. 

Improving cerebral bloodflow through balloon angioplasty, exercise, nutrition, supplements, UV rays and lifestyle changes such as smoking cessation can truly make a difference.  The heart and brain are connected.  The brain is nourished by the arterial delivery of blood, and cleansed by the venous return back to the heart. Stenotic blood vessels, on both the arterial and venous sides, harm the brain. We ignore this connection to the detriment of our health.

The research continues to come in, from all over the world, in a variety of specialties.  
Cerebral bloodflow matters.