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

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

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

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

Sunday, May 15, 2016

Ocrelizumab and "wrapping up MS"

While Dr. Stephen Hauser is proclaiming the "spectacular" results of the latest immune cell suppressing therapy, ocrelizumab, other MS researchers are not as impressed.  link

In a press release full of bravado and hyperbole---"Wrapping up multiple sclerosis at UCSF"--  link  Dr. Hauser humble brags about his discovery.

“My hope is that, with these wonderful results against relapsing MS and finally a treatment that works at least partially for PPMS, there will be new octane in academia and industry to make even more meaningful advances,” says Hauser. “MS is no longer a black box. There is so much more that can be accomplished, and we need to build upon this important success.”

Hauser's wording could not be more ironic----as there will most likely be an FDA black box warning for ocrelizumab, due to the risk of deadly infections, malignancies, and patient deaths.

Dr. Thrower predicted that the FDA may approve ocrelizumab with a black box warning for progressive multifocal leukoencephalopathy (PML)
link

But Montalban noted that there were numerically more malignancies among those in the drug group. There were 11 cancers among those on ocrelizumab compared with only two in the placebo group, something that deserves further monitoring, he said.  There was also a numerical imbalance in deaths, with four in the drug group and one in the placebo group.
link


Ocrelizumab is a CD20 monoclonal antibody,  which was originally developed as a lymphoma treatment.  It targets and binds mature B lymphocytes and suppresses them.   It is a humanized version of the chimeric Rituxan, (which was a the end of its patent and had to be altered and re-patented for MS, to continue making money.)  So, the idea that this is a new discovery could not be further from the truth.

In fact, ocrelizumab has been around for many years, and trials of this drug in rheumatoid arthritis and lupus were halted, after serious infections and deaths were reported at 52 and 48 weeks.

There were 6 deaths associated with serious infections in the RA phase III trial.
link
There were 5 deaths associated with serious infections in the Lupus phase III trial.
link

The financial press didn't think ocrelizumab would ever get this far. The Wall Street Journal commented on the dangers of the drug back in 2010, when Roche ended its RA drug trial.

"Roche said Tuesday that ocrelizumab's phase II trials in treating patients with relapsing remitting multiple sclerosis are continuing. But some analysts doubt the drug will come to market as the recent safety issues are likely to put the U.S. Food and Drug Administration on alert.

The recent trial failures have curbed the drug's sales potential and some analysts now expect that if ocrelizumab's multiple sclerosis indication passes all regulatory hurdles, it will generate less than $1 billion in annual sales."

Another problem is that autoreactive B cells return after treatment termination, as this study of rituxan in type 1 diabetes illustrated.  Autoreactive B cells would create a rebound or relapse after the immune system is reconstituted, similar to what we see with the Tysabri immune reconstitution inflammatory syndrome (IRIS), which occurs after termination of treatment.

We conclude that anti-B cell therapy may provide a temporary dampening of autoimmune processes through B cell depletion. However, repletion with autoreactive B cells may explain the relapse that occurs in many autoimmune patients after anti-B cell therapy.

If MS researchers truly want to make breakthrough discoveries, they will have to expand past the EAE mouse model and their narrative of the out of control immune system.  They could begin by looking at the the newly discovered lymphatic vessels of the CNS, cerebral endothelial cell permeability,  fibrinogen, microbleeds in the MS brain, neurodegeneration and hypoperfusion. If plasmic particles, like viruses, are indeed entering the MS brain through a permeable blood brain barrier, than blocking B cells may not be the best idea.  Time will tell.

So much for "wrapping up" MS.....in a billion dollar black box. 
Joan  





Sunday, April 24, 2016

The Endothelial Health Program--8 Years Later

The neuroprotective lifestyle program I created for Jeff, and would share with university researchers, grew out of a year of in-depth study; plowing through pubmed, and reading every book on the history and etiology of MS I could find at my public library or on the internet.

I called it The Endothelial Health Program, and it changed our lives.   If you google "endothelial health" today,  the link to it will come up first.  direct link to program   I am happy to see there are many more new links, information and many more published papers on PubMed eight years later.  Finally, the discussion of endothelial health is becoming mainstream, and the Nobel Prize winning science of Nitric Oxide (EDRF) is reaching doctors' offices.

Highly regarded MS and Alzheimer's researchers are now actively looking at the endothelium, nitric oxide and hypoperfusion in neurodegeneration, and encouraging other researchers to do the same.  This gives me great hope.

Although multiple sclerosis (MS) has traditionally been viewed and researched as an immune-mediated demyelinating and neurodegenerative disease of the human central nervous system (CNS), its highly complex pathogenesis clearly includes a significant vascular inflammatory component and many therapeutic approaches achieve benefit by direct or indirect effects on cerebrovascular endothelial cells.
link to research

Substantial evidence suggests that the neurodegenerative process is initiated by chronic cerebral hypoperfusion (CCH) caused by ageing and cardiovascular conditions. CCH causes reduced oxygen, glucose and other nutrient supply to the brain, with direct damage not only to the parenchymal cells, but also to the blood-brain barrier (BBB), a key mediator of cerebral homeostasis. BBB dysfunction mediates the indirect neurotoxic effects of CCH by promoting oxidative stress, inflammation, paracellular permeability, and dysregulation of nitric oxide, a key regulator of regional blood flow
link to research

The Endothelial Health Program is not a diet,  or a "don't do this" approach.  It's not about following specific rules.   It's proactive.   It's about living in a way which reverses damage and protects the six trillion endothelial cells inside every human body.
Why?   Because these cells maintain the health of all your organs and your immune system.

The endothelium is actually your largest organ.  It is the lining of 60,000 miles of blood and lymph vessels, and it communicates with all of your other organs.  It is also the interface between your immune system and your vascular system, and is what controls the blood brain barrier and keeps harmful plasmic particles out of delicate brain tissue.  It controls how much blood, oxygen and nutrition your neurons receive. Maintaining endothelial health is neuroprotective.  link to recent pub science from Columbia University

This communicative lining is made up of trillions of endothelial cells, and if these cells become damaged or die, this vital, protective network disintigrates.   This is a problem in ALL diseases of neurodegeneration, such as Alzheimer's, Parkinson's,  and dementia.   PubMed now has hundreds of scientific papers on endothelial dysfunction and each these diseases.   But endothelial cell death and dysfunction can be reversed.

I had been hugely inspired by Dr. John Cooke's book, The Cardiovascular Cure,  Link to book  and reached out to him.  That's how Jeff and I originally connected with Stanford University.   The information was out there,  I was just compiling and connecting the heart to brain health.    This is a complete lifestyle, a new way of looking at rising rates of neurodegenerative disease as a result of our westernized, industrialized lives.  It was an attempt to reverse cell-damaging practices that had become part of our modern routines, and to return to our inherent nature, to allow for balance and healing.

It was an attempt to connect the heart and brain, to understand the vascular connection to MS.  And I did it for Jeff.



The basic tenets of the lifestyle program are:

1.  Movement.  Daily cardiovascular pursuits are essential and healing. Shear stress, created by an active heart pumping flowing blood over endothelial cells, maintains their integrity by increasing nitric oxide release.  Inactivity allows endothelial cells to die.

2.  Stress reduction. The acts of deep breathing, the practice of meditation, yoga, prayer, all reduce endothelial cell damaging cortisol and increase healing, vasodilating nitric oxide.

3.  Liver health. Decreasing liver damaging toxins--like alcohol, plastics exposure, chemicals, pesticides, heavy metals, drugs--and increasing liver protecting flavonolignans (like silymarin) and antioxidants found in fruits and vegetables, maintains endothelial cell health.

4.  Vitamin D/UV ray increase. Skin makes vitamin D when exposed to ultraviolet B (UVB) rays from the sun. Because of sunscreen and our indoor lives, many people are not receiving enough of this potent hormone.  And our circadian rhythm is affected.  Vitamin D creates endothelial cell health by increasing nitric oxide.

5.  Sleep.  Sleep deprivation creates endothelial dysfunction and cell death.

6.  Eating whole, organic foods.  Eating a diet of whole foods (unprocessed foods; foods that retain the natural state) provide ample levels of nutrition, vitamins and antioxidants. Antioxidants bind with free radicals to minimize the damage they cause to the endothelium.  Vitamins B and C are hugely protective of endothelial cells.  A lack of B vitamins increases homocysteine, which kills endothelial cells.

7.  Eating healthy fats   Increasing omega 3 (DHA) fats found in fish, olives, flax seed, avocados, walnuts, etc.  and decreasing transfats and highly saturated animal fats improves endothelial cell health. 

8.  Probiotics and gut health.  The endothelial cells of the gut's lining communicate with the rest of the body and rely on "good" bacteria.  

9.  Essential minerals.  Magnesium, calcium and zinc are all important in the preservation of endothelial cells.

10. Anti-inflammatory food sources, spices and herbs. Curcumin, Salvia, Ginko, and Garlic are all shown to decrease inflammation and regulate blood viscosity, preventing hypercoagulation, allowing for better shear stress.  Proteolytic Enzymes, both serrapeptase and nattokinase, are enzymes which reduce inflammation and pain and help blood viscosity by regulating clotting. Bromelain, found in pineapple, is one of the best anti-inflammatory substances known.

11.  Reducing glucose and gluten.  Sugary baked goods, simple breads, pastas and snack foods are damaging to endothelial cells. 

12.  Smoking cessation.  Please quit...smoking kills endothelial cells.

13.  Laughter, joy, community, purpose, loving relationships.  
All of these things increase nitric oxide and improve endothelial health.


That's it.  Simple, right?  Yes and No.  It took our family a couple of years to utilize all of the strategies.  Jeff was NOT thrilled that I changed our meal plans.  He was resistant at first, but after the first several months of MS disease stability, he embraced his new life.  

And then he went even further.  Jeff has added his own twist on endothelial health by incorporating neuroplasticity.  He has become an expert in the dictum of "use it or lose it."  He got back on his bike, back on skis, back to composing, conducting, performing and public speaking.  The things that had become challenging, like balancing or staying up all day, became an activity to face head on and in doing so, rewire his brain.   Receiving his venoplasty treatment at Stanford allowed for increased perfusion of his brain and healing.  But he kept that shear stress going by remaining active and engaged.   His grey matter looks normal on MRI, and he's had remyelination of MS lesions.  He is my hero.

This model for health is called "a systems approach." as opposed to a mono-therapeutic approach utilized by pharmaceutical companies.  It is much more expensive and difficult to clinical trial a lifestyle when compared to a singular drug or supplement,  but it can be done.  UCLA recently published on a systems approach in disease reversal in Alzheimer's.  Link to UCLA study   My dream would be to fund a gold standard clinical trial of this program.  Maybe someday.

What's ahead?  God willing, more of this.   We have no idea of what tomorrow may bring, but we consider the gift of this lifestyle program to be our message of hope. 

So please, share the program.  Try it out, let me know how you're doing.  Always work with your own physician, to modify the program to suit your individualized needs.  I don't have a book to hand you, but I think that's OK.  I was given this direction as an answer to prayer, and will continue to share it for free.


Be encouraged, 

Joan

bounty from our organic garden---full of colorful phytonutrients (nutrients from plants!)


hiking provides UV ray exposure, calming nature, and exercise









Sunday, April 17, 2016

Neuroprotection--it's here. Today.

These are things you can do today, which have published, peer-reviewed scientific research behind them, shown to protect neurons and help maintain your brain mass.

Pharmaceutical companies know that current MS drug treatments do not stop progression, nor do they stop disability.  Because the MS brain continues to lose neurons.  "Neuroprotection" has become the new target.

"Multiple sclerosis as the most common inflammatory demyelinating disease in Western countries, major therapeutic success has been achieved with regard to strategies targeting immunological master switches. These approaches effectively reduce inflammatory disease activity but fail to address ongoing neurodegeneration or disturbed regeneration. However, intense research efforts investigating molecular mechanisms of disease have identified 'druggable' targets for prevention of inflammatory neurodegeneration and disturbed regeneration. " https://www.ncbi.nlm.nih.gov/pubmed/27035900

While pharmaceutical companies search for "druggable targets" in order to sell the next wave of "neuroprotective" MS drugs, you can take matters into your own hands.

These are all scientifically proven means of maintaining gray matter, or neuronal mass, in the human MS brain, and they are available today.  I've made sure to weed through animal models, to find actual evidence of gray matter maintenance in people with MS.

1. Exercise---move as much as you are able.  The science is in, there is no doubt that it maintains gray matter.  Get help if necessary, physical therapy or modified programs for people with limited mobility.  But do all you can.

Brain-derived neurotropic factor (BDNF) is a very important cerebrovascular protein which protects neurons and allows for neurogenesis, or the growth of new neurons.   BDNF is created by shear stress, or the action of blood whooshing over the cells which line our blood vessels, called the endothelium.  BDNF is released into the blood stream when the cardiovascular system is most active by vascular endothelial cells.  BDNF is vital to learning, memory and executive function.

BDNF is low in people with MS, but showed a huge improvement after 24 weeks of an exercise program.
http://www.ncbi.nlm.nih.gov/pubmed/26992038

Daily personalized physical therapy and exercise programs designed for people with MS increases BDNF, supports cell survival and brain mass, increases neuroprotective antioxidants, decreases inflammation and improves well-being.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3375103/

Aeorobic exercise plus strength training designed for people with MS reduces inflammatory cytokines and is shown to be neuroprotective
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4409551/

Aerobic exercise helps people with MS maintain the volume of their hippocampus, and improves memory.
http://www.tandfonline.com/doi/abs/10.1080/13554794.2013.841951

Exercise is neuroprotective for children with MS
http://journals.lww.com/neurotodayonline/blog/breakingnews/Pages/post.aspx?PostID=509

2.  Nutrition---  a whole food diet, full of long-chain omega 3 fatty acids from fish, olives and nuts and nutrients and antioxidants from leafy greens, colorful fruits and vegetables (phytonutrients) helps maintain brain volume.  Removing processed food products with nitrates, salt and sugar and replacing them with nature-made food protects neurons.  Maintaining a healthy weight is important.

https://www.researchgate.net/publication/51174375_Omega-3_polyunsaturated_fatty_acids_in_the_brain_metabolism_and_neuroprotection

https://www.ncbi.nlm.nih.gov/pubmed/26849357

https://www.ncbi.nlm.nih.gov/pubmed/?term=roy+swank


3.  Vitamin D--low levels of Vitamin D are correlated to loss of brain matter in MS, higher levels  are shown to be neuroprotective.  Clinical trials are ongoing.
http://www.scirp.org/journal/PaperInformation.aspx?PaperID=7402

http://yaledailynews.com/blog/2015/11/10/vitamin-d-gives-brain-protection-to-ms-patients/


                                            +++++++++++++++++++++

That's it for studies in actual people with MS---  The following studies were done in healthy people, elderly and people with other neurological diseases, as well as animals---so we do not know if the benefits will confer for people with MS, but it's worth considering these studies---because gray matter was preserved.

1. Curcumin/Turmeric---- this orange spice used in Indian cuisine has been shown to be neuroprotective.

Curcumin is anti-inflammatory, anti-oxidant and anti-protein aggregate.
http://www.ncbi.nlm.nih.gov/pubmed/17569212

Curcumin modulates mitochondrial dysfunction, reduces oxidative stress, and reduces inflammatory cytokines.  http://www.ncbi.nlm.nih.gov/pubmed/22742420


2. Magnesium --this vital mineral is low in most humans.  It has been shown to be neuroprotective, due to its affect on the endothelium.

Magnesium sulfate is neuroprotective for pre-term infants.
https://www.ncbi.nlm.nih.gov/pubmed/26735551

Magnesium status is low in those with Alzheimer's
https://www.ncbi.nlm.nih.gov/pubmed/26351088

Magnesium is neuroprotective in cerebral/ischemic injury in rats
https://www.ncbi.nlm.nih.gov/pubmed/25560670

3. Anti-oxidants found in all kinds of fruits, vegetables and herbs are neuroprotective.
http://www.ncbi.nlm.nih.gov/pubmed/17017945
There are hundreds of studies on pub med on anti-oxidants found in food which are neuroprotective.
I love what Dr. Wahls says about picking fruits and veggies to eat.  The darker the color, the more powerful the antioxidants.  This is why blueberries, leafy greens, and beets pack so much anti-oxidant power.
In the interest of time--I'll list some of the anti-oxidants found in nature, and you can do the googling, and see what suits you.    Here are some more antioxidants:
bromelain (found in pineapple), ECGC (in green tea), quercetin (found in red apples and red onions)  garlic, ginsing, ginko biloba, cannabinoids, caffeine, resveratrol, silymarin (milk thistle)

4. Yoga--those who practice yoga, which combines posture, breathing and meditation, have healthier gray matter and more brain volume.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4428135/

5. Lifelong learning.  Learning a new, mentally challenging skill provides neuroprotection and returns brain to youth-like status, encouraging neuronal health.
http://content.iospress.com/articles/restorative-neurology-and-neuroscience/rnn150533

6.  Probiotics.  The gut-brain link is being studied.  Probiotics have been shown in animal studies to protect neuronal integrity.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0106503

7. B Vitamins --studies are ongoing looking at how folic acid and vitamin B12 are neuroprotective in humans.  Plasmic levels of homocysteine, which become high when there is not enough Vitamin B, increases neurodegeneration.  Higher levels of B vitamins in the blood are linked to neuroprotection.
http://www.ncbi.nlm.nih.gov/pubmed/22419558
https://diagnosticpathology.biomedcentral.com/articles/10.1186/1746-1596-8-123

This is why the current studies of high dosages of biotin (vitamin B7) has been shown to be protective in progressive MS.  Studies are ongoing.
http://www.ncbi.nlm.nih.gov/pubmed/25787192



As I've said many time before, and will no doubt be saying again, it's difficult to trial a lifestyle---which is why published research focuses on one particular compound at a time.  Be that a drug, or a supplement, or a particular exercise program,  it's easier to test one specific thing against placebo and thereby have a "gold-standard" clinical trial.

It's much more difficult and costly to test a systems approach to MS treatment.  Dr. Roy Swank, Dr. George Jelinek and Dr. Terry Wahls have come up against this bias in MS research--which is rigged in favor of pharmaceuticals.

Don't let this mentality stop you from doing all you can to heal your own brain, and provide neuroprotection for yourself!  While we wait for science to figure out the disease aetiology of MS, there are things that are scientifically proven to provide neuroprotection.  Today.

Be well!
Joan