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

Monday, February 6, 2017

Gladstone Labs and Nrf2 protein

Gladstone Labs is at it again!   Finding a single protein which limits neuronal death.  How much do we love this innovative lab!  Thanks to Dr. Terry Wahls for tweeting about this paper today, I had missed it.
https://gladstone.org/about-us/news/single-protein-may-hold-secret-treating-parkinson-s-disease-and-more

"I am very enthusiastic about this strategy for treating neurodegenerative diseases," said Finkbeiner, a senior investigator at Gladstone and senior author on the paper. "We've tested Nrf2 in models of Huntington's disease, Parkinson's disease, and ALS, and it is the most protective thing we've ever found. Based on the magnitude and the breadth of the effect, we really want to understand Nrf2 and its role in protein regulation better."

In this new research, Gladstone Labs have shown how the protein Nrf2 serves as a housekeeper for our brains, by cleaning up damaging proteins.  Nrf2 actually protects neurons from cellular death by regulating other proteins.  

For those new to this super protein, the Nrf2 signaling pathway (nuclear factor erythroid 2-related factor) is how your body defends and protects itself against damaging proteins, toxins, oxidative stress and inflammation.   I have blogged about it before--since Nrf2 had been shown to reduce oxidative stress in MS.  This blog post is from 2012  link

There are actually ways to turn on our body's Nrf2 protein defenses, by using Nrf2 activators. 
Nrf2 activators are PRO-oxidant---meaning they introduce an oxidizer, so that your body create its own antioxidant protection.  Kind of like "fighting fire with fire."  This compound activates the enzymes in your own cells to fight oxidative stress in your body.  These enzymes then protect your oligodendrocytes (myelin forming cells), and keep them from dying during an attack of oxidative stress.   And now we know that Nrf2 protects neurons from harmful proteins.   A win/win for those with MS.

Three of the plants I recommend in the Endothelial Health Program as anti-oxidants, which also have published research as Nrf2 activators-

Curcumin--the golden powder that gives Indian curry its color, is extracted from the tumeric plant.
link  link  link
Silymarin--or milk thistle, known to protect liver cells and produce glutathione
link  link  link
and EGCG, or green tea. Known for its antioxidizing and metal chelating effects.
link  link   link  link

More ways to increase Nrf2:

Dr. Bernhard Juurlink has spoken and published on the power of broccoli sprouts as Nrf2 activators.  Here is information on his book on the health benefits of broccoli--
link

Paul Thornalley, from the University of Warwick (United Kingdom), and colleagues have observed that sulforaphane in broccoli, and quercetin in onions, are capable of increasing Nrf2 movement. Observing a continual movement cycle of Nrf2, which sees the protein oscillate in and out of the cell nucleus once every 129 minutes, the team found that sulforaphane and  quercetin sped the cycle up to 80 minutes.  Writing that: “We discovered cytoplasmic refresh rate of Nrf2 is important in maintaining and regulating the transcriptional response and links stress challenge to increased cytoplasmic surveillance,” the study authors aim to develop new food supplements – superfoods that stimulate Nrf2 activity.
link

The supplement Protandim is a scientifically recognized Nrf2 activator, as well--although Jeff has not used it, so I don't have any experience with it, but I know many other pwMS do.  link

Always talk to your own doctors before adding any supplements to your program, as there may be contraindications for you.  And, it bears repeating...I am NOT a doctor!



Hope you find this research encouraging!   I know I do.
Go, Gladstone Labs!!  
Thanks to Dr. Finkbeiner  (left) and Dr. Skibinski (right)

Joan  


Thursday, January 26, 2017

Ten years

2017 marks the 10 year anniversary of Jeff's MS diagnosis.

Today, at age 53, Jeff is conducting concerts around the world, back to performing as a jazz trumpeter, writing scores for films and TV shows, composing commissions for worldwide orchestras, ballet companies and choirs.  He can still jog, work full days, and he gets around just fine.  Most days, he forgets he even has MS. We are thankful, grateful and astounded.

But, you quickly say... Jeff is an outlier, a very blessed anomaly and surely his healing is anecdotal.  MS is different for every one, and Jeff was fortunate to get a "mild" course of MS.
You may well be right, and we can accept that.  (Although we don't think over 20 lesions on the brain and spine and a loss of mobility was "mild" and neither does his neurologist.)  I do believe we've been blessed, but I'd also like to humbly suggest that maybe Jeff's miracle recovery might be available to others--not all--but to some with MS.

In 2007, I began following the bread crumb trail.  The first crumbs were Jeff's serum results at diagnosis.  His blood was hypercoagulated, he had high liver enzymes and blood spots (petechiae) on his shins.  He was not a healthy guy, even aside from his MS.  He was about 15 pounds overweight, had not been exercising or moving much from his desk chair.  He had trouble walking after his first MS flare, as his left side was numb and he couldn't balance.   He spent most of the day in bed, as he had overwhelming fatigue.  He ate a lot of cheese, dairy, processed meats, sugary sweets and drank coffee and diet Dr. Pepper.  He didn't get outside or see the sun.  He was depressed and not well.  And I was desperate to help him.  I prayed constantly.

I saw a connection between Jeff's blood results, his poor health and his MS diagnosis.  I believed it was a problem with his vascular system.  I went to the library, found books by Dr. Swank and others, and read more and more published research online.  I saw that modern researchers had found a link between endothelial cells (lining all 60,000 miles of our vascular and lymph systems) and the breakdown of the blood brain barrier in MS.  I also learned about the connection between heart health and brain health.  And I created the Endothelial Health Program for Jeff, to address these issues.

Let me be honest here-- I truly pissed off my husband---because I changed his life and (at first) he really didn't like it.   I cleaned out our kitchen, began serving only whole, organic foods, got rid of junk and processed food and soft drinks, grains, sugar and dairy, and made him get on the elliptical machine and back outside.  I began corresponding with a cardiovascular specialist at Stanford University, and shared my program with him.  He thought it made sense and asked me to stay in touch.  I would soon send this doctor research from Italy; Dr. Paolo Zamboni's study on CCSVI in MS.  Jeff would be treated with venoplasty by his colleague at Stanford in 2009, and the benefit from that procedure has been profound and long-lasting.  Jeff's gray matter atrophy has reversed on MRI, his gray matter is normal,  his lesions have shrunk, and his MS is in remission.

Life has gone on.  I've tried, along with hundreds of other advocates, to help others receive venoplasty treatment and to spread the word on the vascular connection to MS.  We've had some success, although not as much as Jeff and I had hoped.  Powerful immune ablating drugs continue to get the money and press, and I honestly don't think this will ever change.   Money is our God in the US and other developed, industrialized nations.  We worship authoritative, powerful men with large bank accounts.  We give corporations our trust and pledge allegience to them, hoping we might have some of that money, some of their power, some of their knowledge.  But it's a sham.  We are only consumers and customers to them.   They take advantage of our fear.  They want us to buy their wares for life.

Each of us is responsible for our own health, our own lives, our own souls.  No powerful, authoritative man will ever save us.  It is only in doing the small, imperceptable things for ourselves and each other, that we will be helped.  The little kindnesses, the home cooked meals, the sunshiny walks with our family, the trips to the gym or physical therapy,  the hugs and prayers and affirmations.  Stress reduction and good sleep.  The support of community.  Positive, kind dialogue and the conscious choice to avoid cruelty.   Real and meaningful face to face relationships.  Forgiveness and love.  This is how we heal.

I'll turn 55 this year, and I have selfishly and whole-heartedly enjoyed the recent focusing on my own health, my own family, my own voice.  Returning to singing on stage has been a dream come true. Our son is engaged to be married next year (!!!), I'll be performing with Jeff in Europe this spring, I've got other missions to fulfill.  Jeff and I are enjoying our bonus round.  Life is really, really short.  We don't know what tomorrow may bring, but today is pretty good.

There are amazing new resources available today for people with MS.  Dr. George Jelinek, Dr. Terry Wahls, Matt and Ashton Embry and others have medical degrees, books, lectures, podcasts---they will continue to get good info out there.  They've got real skin in this game.  The ISNVD is on the trail, they are going to publish and change our understanding of MS and other diseases of neurodegeneration.  Results from Italy and Australia placebo controlled venoplasty trials are coming later this year,  Marie Rhodes' book is still the best publication on CCSVI available.  CCSVI Alliance website is still up and chock full of good info.  The Annette Funicello Research Fund is supporting great studies, The Canadian Neurovascular Society is also bringing this research forward,  Dr. Franz Schelling's work is all still true.  The Gladstone Institute is on the right path with the study of coagulation and MS.  Dr. Jony Kipnis will unlock the brain's immune system.  Stem cells will eventually be the answer for neurodegenerative disease repair.   I'll keep this blog online as long as I'm able.  And I may even write up a post now and then, if I see something of value.  But honestly, I think it's all here already.   Please read and share the info I've blogged, whatever you find resonates and is applicable in your own life.  And if it hasn't helped you, I'm sorry---and I truly hope you find your own answers.

God speed.
Thank you for every kind word, every message of support.
Come see us if we perform in your town!  I'd love to get a hug.
with love,
Joan









Monday, December 26, 2016

2016 Research Roundup

2016 proved to be a banner year for break through Multiple Sclerosis research.  And it showed us that what is old, is also new.

We now understand the brain has a vital and circulating immune system, reliant on draining veins and newly discovered lymphatic vessels.  New modes of technology are allowing scientists to study microbleeds, plasmic particles in brain tissue and the central vein sign (CVS) found only in MS lesions, which was first described in 1863.   Researchers are discovering how plasmic proteins initiate inflammation and contribute to brain atrophy in the MS brain.

Many of these discoveries are being made inside independently funded labs--like the Gladstone Lab and the Kipnis Lab--innovative labs outside the traditional autoimmune theory of MS.  These researchers are breaking down neuron-centric walls in hopes of understanding the etiology of MS.

And yes, these are vascular connections to the disease.  The brain is connected to the rest of the body via 60,000 miles of blood and lymphatic vessels.  

Neuroimmunologists who continue to ignore and ridicule the vascular connection to MS are still wrong.  History will not be kind to those who turned a blind eye, or purposefully denegrated this research.


1.  From the Kipnis Lab--brand new research finds a special immune cell in the brain which protects against injury and disease. Immune cells were found outside lymph vessels in the dural sinus, near the draining veins of the brain. These rare lymphocytes are also found in the gut, and may be the gut-brain connection researchers have been searching for. The brain needs these immune cells.  We do not understand the implications of how lymphocyte sequestering drugs may be inhibiting their work.  Dr. Kipnis is working specifically on Multiple Sclerosis right now--and he is very hopeful.

The cells, known as “type 2 innate lymphocytes,” previously have been found in the gut, lung and skin – the body’s barriers to disease. Their discovery in the meninges, the membranes surrounding the brain, comes as a surprise. They were found as UVA researcher Jonathan Kipnis, PhD, explored the implications of his lab’s game-changing discovery last year that the brain and the immune system are directly connected via vessels long thought not to exist.

“This all comes down to immune system and brain interaction,” said Kipnis, chairman of UVA’s Department of Neuroscience. “The two were believed to be completely not communicating, but now we’re slowly, slowly filling in this puzzle. Not only are these [immune] cells present in the areas near the brain, they are integral to its function. When the brain is injured, when the spinal cord is injured, without them, the recovery is much, much worse.”

Curiously, the immune cells were found along the vessels discovered by Kipnis’ team. “They’re right on the lymphatics, which is really weird,” noted researcher Sachin Gadani. “You have the lymphatics and they’re stacked right on top. They’re not inside of them – they’re around them.”

2. Imperial College in London, UK has discovered how a leaking blood protein called hemoglobin is associated with brain atrophy in those with progressive MS.  Hemoglobin is responsible for delivering oxygen and iron to brain cells, but when red blood cells break down inside blood vessels---from endothelial dysfunction or disturbed blood flow--the blood cells fall apart and release hemoglobin, causing inflammation and neuronal destruction inside brain tissue.  

An underlying low-grade chronic intravascular haemolysis is a potential source of the iron whose deposition along blood vessels in multiple sclerosis plaques contributes to the neurodegeneration and consequent brain atrophy seen in progressive disease.

In English----- inside blood vessels there is a chronic break down of red blood cells, which releases the protein hemoglobin into the blood stream.   This freed hemoglobin is found inside MS plaques and inside the brains of those with MS and is linked directly to brain tissue loss.   Dr. Zamboni first described this process in 2006 .  He noted how venous disease of the legs looked like MS in his ground-breaking paper "The Big Idea"   link


3.  Hypercoagulation has been shown, yet again, to be a factor in the inflammatory phase of MS.  Elevated levels of prothrombin and factor x, which are blood coagulation proteins, were found to be linked to disease progression in those with RRMS and SPMS.  link

This discovery confirms continuing work by the Gladstone Lab, which has honed in on fibrinogen as the initiating factor in MS lesions.   link

All of these leaked blood proteins (hemoglobin, fibrinogen, prothrombin, factor x) are supposed to remain inside red blood cells, inside healthy blood vessels.  They are inflammatory once freed from vessels and behind the blood brain barrier.  This was my thesis in The Endothelial Health Program.

If the endothelium becomes damaged and the NO levels become imbalanced, cells which should remain in the blood can leak through blood vessels and into adjacent body tissue. Some of the leaked cells can include proteins, such as the C-Reactive protein, which is produced by the liver and causes inflammation8.   link

It was Jeff's sky high hypercoagulation numbers which first brought me to endothelial research and the vascular connection to MS almost 10 years ago.
The blood matters.    link


4.   The central vein seen inside an MS lesion is now recognized as a biomarker for MS,   according to a consensus statement from the North American Imaging in MS Cooperative (NAIMSC)  Multiple Sclerosis is unique, in that there is an enlarged vein at the center of each lesion.  Not an artery (which delivers blood)---but a VEIN, or a draining vessel,  which has become engorged and leaky.   Rindfleisch first noticed this phenomena with his microscope in 1863.  And the central vein is still there.  Finally, MS imaging specialists acknowledge this is a biomarker for MS.
link

A group of scientists asked this cooperative why they chose not to cite Dr. Paolo Zamboni's prior research, as he has published on the central vein sign and the link to venous disease.   Their query was published in Nature.  Again, it is Dr. Zamboni's ground-breaking paper, The Big Idea from 2006.

Re: The central vein sign and its clinical evaluation for the diagnosis of multiple sclerosis: a consensus statement from the North American Imaging in Multiple Sclerosis Cooperative.
Bernhard HJ. Juurlink MD, Dario Alpini MD, Attilio Guazzoni MD, Laura Mendozzi MD, Raffaello Pagani MD, PierluigI Stimamiglio MD, Pietro Maria Bavera MD

We read with interest the consensus statement titled "The central vein sign and its clinical evaluation for the diagnosis of multiple sclerosis: a consensus statement from the North American Imaging in Multiple Sclerosis Cooperative" (1).
We wonder why the authors haven't cited in the notes any paper of Dr. Paolo Zamboni from University of Ferrara, Italy.
Particulary, his oldest paper titled "The big idea: iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis" published in November 2006 (2).
In that paper he readily showed the histology of the CVS, and explicitly reported the possibility to image it by the means of MR, as well.

Regards.
Disclosures: none
References:
1) Sati, Pascal, et al. "The central vein sign and its clinical evaluation for the diagnosis of multiple sclerosis: a consensus statement from the North American Imaging in Multiple Sclerosis Cooperative." Nature Reviews Neurology (2016).
2) Zamboni, Paolo. "The big idea: iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis." Journal of the Royal Society of Medicine 99.11 (2006): 589-593.


5.  Dr. Paolo Zamboni presented an update on his Brave Dreams placebo controlled CCSVI trial at the 2016 Veith Conference in New York City.  This is the first placebo controlled multi-center trial which is utilizing neurologists, MS specialists and vascular specialists, all working together and collaborating.  All are independently reviewing the results from the study.  Dr. Zamboni spoke with Sharon Richardson of CCSVI Alliance, to give a breakdown of the study.

This was a six center study throughout Italy.  200 subjects started the year long study, 125 people completed it.  They were mostly RRMS and some SPMS  (under 5.5 EDSS) who were investigated, treated (or not if they were in the sham control) and followed a year through completion of this study.  There were primary endpoints, which Dr. Zamboni explained were OBJECTIVE.  This means that these changes were not subjective, or based on patient's feelings, but were measurable by approved medical instrumentation.  These objective measurements included volume of bladder, visual acuity, timed walking and manual dexterity, as well as MRI lesion consideration.  All of these measurements were looked and compared during 3, 6, 9, and year intervals.  The first paper will report on these primary endpoints after treatment, and will hopefully be available next June.


As Dr. Zamboni stressed---this type of trial is unique and should become the gold standard for MS treatments.   NO drug trial has ever been weighted and measured in such a precise, objective way.
To the patients, Dr. Zamboni asked us all to "be patient".  There will be more coming on how CCSVI treatment improves perfusion and cerebrospinal flow, as well as how it helps with depression, memory, fatigue, and cognition.  This research is more "like an opera"--it is going to take cross-disciplinary collaboration and cooperation.  Across disciplines and countries.




2017 will only further our understanding of the connection of the brain to the rest of the body, and how the vasculature is implicated in the MS disease process.

Until we know more, live your best, vascularly healthy life.
Move as much as you can, as often as you can.  Eat organic whole, colorful foods full of phytonutrients.  Get your UV rays and Vitamin D.  Get good sleep and manage your stress levels.  Don't smoke or eat junk food.  Stay hopeful.
There are better days ahead.

Promise,
Joan