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

Sunday, January 7, 2018

New research on cholesterol clearance and MS

Long-time readers of this blog will remember a variety of posts on fats, lipids, cholesterol and inflammation in multiple sclerosis.  It was Dr. Roy Swank's research on ingestion of animal fats and the changes to the vascular system which first interested me in this connection.  Once again, what is old in MS research is new.

Research published this week from the Technical University of Munich explores how the degredation of myelin leaves a destructive cholesterol residue in the brain, which increases an inflammatory response and blocks myelin regeneration.  It appears that with age, the process of transporting cholesterol out of the brain becomes less efficient.  (Important to state that this research was done on a mouse model of MS.)

"Myelin contains a very high amount of cholesterol," explains Prof. Simons. "When myelin is destroyed, the cholesterol released has to be removed from the tissue." This is performed by microglia and macrophages, also referred to as phagocytes. They take up the damaged myelin, digest it and transport the non-digestible remainder, such as cholesterol, out of the cell by transport molecules. However, if too much cholesterol accumulates in the cell, cholesterol can forms needle-shaped crystals, which cause damage the cell. Using a mouse model, Simons and his team showed the devastating impact of the crystalline cholesterol: It activates the so-called inflammasome in phagocytes, which results in the release of inflammatory mediators, attracting even more immune cells. "Very similar problems occur in arteriosclerosis, however not in the brain tissue, but in blood vessels," says Simons.

Although cholesterol synthesis in the brain is considered a different process than cholesterol synthesis in the rest of the body, lower plasma levels of HDL cholesterol have been found to be related to MS.  Cardiovascular researchers have been looking at this fact, in relation to the heart brain connection.  

HDL plasma levels have also been associated with other neurodegenerative diseases such as multiple sclerosis (MS).74 Patients in the acute phase MS have been reported to have lower HDL-C levels compared with those in the remission phase, and they show a higher probability of developing acute inflammatory lesions (assessed by MRI).74–768 Moreover, HDL inhibits cytokine-induced expression of adhesion molecules in endothelial cells.72

Why are HDL levels important?  Because HDL, also known as "good cholesterol", contains the transport protein ApoA1---needed to take cholesterol out of the blood and tissue.

Here's more research on low levels of ApoA1 found to be linked to MS severity.  The lower HDL
ApoA1 plasma levels, the more severe the disease. 

ApoA1 was reduced by approximately 25% in patients with relapsing-remitting MS, 50% in those with secondary progressive MS, and 75% in patients with primary progressive MS, the most severe form of the diseaselink

Here's a whole blog post from 2013 on "Good" cholesterol and your brain

While we wait for researchers to create their cholesterol transport block buster MS drug, or to repurpose things like statins (please, don't go there, so many side effects!)---there are things pwMS can do today, to encourage this process in their own bodies, by increasing your HDL levels with lifestyle.
1. Don't smoke.  Quitting smoking will increase good cholesterol by 10%
2. Lose weight.  Extra weight depletes HDL.
3. Exercise.  Within 2 months of regular exercise, you can increase your HDL by 5%
4. Choose healthier fats for your diet. Avoid transfats and saturated animal fats.  Choose omega 3s and monosaturated fats found in nuts, olive oil, and fish
5. Add fiber to your diet--lots of fresh fruits and vegetables, legumes and oats
6. Limit alcohol consumption.

7. Check your vitamin D, magnesium, calcium and zinc levels--make sure they are in balance.

Keep an eye on the latest MS research.  
It continues to affirm the heart-brain connection, and the importance of living a vascularly healthy life.
Be well,
Image result for cholesterol clearance multiple sclerosis

Friday, December 22, 2017

Multiple Sclerosis is a Spectrum Disorder

Dr. Gayatri Devi is a neurologist at Lenox Hill Hospital in NYC.  She has recently published a book called "The Spectrum of Hope: An Optomistic and New Approach to Alzheimer's Disease and other Dementias."

Dr. Devi is redefining Alzheimer's as a spectrum disorder, meaning that this diagnosis is not the same for every patient, that each patient will have a unique experience, and that there is much which can be done to empower the individual patient to reclaim their health.  A diagnosis of Alzheimer's is not "one size fits all."  And she attacks the biggest myth---that all people with an Alzheimer's diagnosis will end up incompetent in a nursing home.  She says this simply isn't true.

In this new book, Dr. Devi outlines ways to treat and arrest Alzheimer's progression through nutrition, exercise, lifestyle and medication.   She asserts that 60% of all Alzheimer's cases are preventable, and that science has shown that less than 5% of Alzheimer's cases are genetic.   link

I like Dr. Devi.  A lot.  She is positive, informed and uses real data and science to back up her claims. She has worked with Alzheimer's patients for 23 years, and she wants to dispel the myths about the disease.

Dr. Stuart Zola of Emory University has been making the same case.  He has been advocating for a spectrum disorder classification for Alzheimer's Disease and has specific recommendations for treatment.

His most important lifestyle interventions are the exact same as Dr. Devi's.
1. Heart Healthy Diet
2. Stress Reduction
3. Exercise
4. Sleep
5. Cognitive training--use it, or lose it.

Does this list look familiar to anyone else?  

I would submit that the exact same case could be made for Multiple Sclerosis.
MS is a neurodegenerative disease which is not genetic.  MS is a vastly different disease in individuals.  MS also occurs more commonly in women.   MS progression can be halted.  MS is a spectrum disorder.

Then why aren't MS neurologists using this same language in discussing treatment and lifestyle intervention with their patients?

The difference is that MS has a $20 billion dollar a year drug industry attached to the diagnosis.  And it is important for MS specialists to maintain the narrative that MS is a destructive, incurable autoimmune disease which must be attacked at the very beginning with immune modulating drugs.  No matter the disease presentation, the age of the patient, the level of neurologic damage---the narrative has been that ONLY drug intervention can arrest the MS disease process.  And this narrative has been pushed and publicized by MS Societies, MS advocacy groups, MS blogs, MS groups (which are sponsored by pharma) and in the press.  There's a lot of money wrapped up in telling this story.

Watch this Canadian news story from 1989, almost 30 years ago.   It will take you 18 minutes, but I believe it is important. The first half is about chemo treatment for MS, the second half is about nutrition.

Link to 5th Estate MS Story

Notice how the neurologists speak to the MS patient about his wheelchair prognosis "in two years" if he does nothing to treat his MS aggressively.   Jeff had a very similar prognosis. He was having trouble walking, was spending the day on the couch, exhausted.  Just like Ron, he was told to "do everything he could" to fight his MS.  But that "everything" only included drug therapy.  Listen to how Ron accepts the risks of cyclophosphamide (Cytoxan), a cancer treatment with very serious side effects,  which would eventually be shown to be ineffective as a monotherapy for MS. link

At 10 minutes in we meet another person with MS.  She has been part of Dr. Roy Swank's 35 year observational study of a low fat diet.  Dr. Swank's patients are still walking, working, living, remaining stable.  Dr. Swank gave his patients hope of disease reversal, of remaining mobile.   His program is simple.  Avoid fats from meat and dairy, eat mostly plants.  What we would call a "heart healthy diet."

The MS neurologist speaks for the medical profession, saying diet has "little to no role" in the care of MS patients.  And this is the position of the MS Society today---even though the science shows that the diet has made a difference.   Again, this was 30 years ago.  And it is still true---as the MS Society threatens to sue Matt Embry for speaking out about true MS Hope, and a program based on the Swank Diet.   link

We need to reframe the dialogue.  MS is a spectrum disorder.  It can be treated with lifestyle, nutrition, and exercise.   A healthy heart and vasculature can protect the brain.   Yes, MS will be different for every individual, medications may help some--and not all will recover.  But that does not negate the very real improvements made for many.

Push back against the pharma narrative.
Write your own story,


Saturday, November 18, 2017

Exciting New MS Treatment!


A new MS drug appears to alter fluid dynamics and repair the blood brain barrier!
In fact, 63% of the patients treated with Perfuza (toxicmuzab) had no new or enhancing MS lesions at 12 months! In light of recent discoveries of the brain's lymphatic vessels and the connection to venous flow, we are thrilled to be able to offer MS patients a drug treatment which may be addressing CNS fluid dynamics.

Here's more on the impressive results of Perfuza from a recent publication in JAMA---

We found a reduction in the mean number of new brain lesions (corresponding to more lesion- free patients) in the toxicumab group compared with the placebo group at 6 to 12 months. The delayed and positive effect on the magnetic resonance biomarker suggests that toxicumab could affect the dynamic of the blood-brain barrier.

Gadolinium enhancement is a marker of damage to the blood-brain barrier, whose time course depends on lymphatic drainage18 and hence on venous drainage from the skull.19 Previous studies have reported that venous pressure is lowered3 and cerebrospinal fluid dynamics is improved20 after taking toxicmuzab, thereby favoring the drainage of cerebro spinal fluid into the dural veins, which depends on a pressure gradient between the subarachnoid spaces and dural veins.21,22

Another study23 reported that white matter lesion load was inversely correlated with reduced cerebrospinal fluid dynamics, as measured by MRI. In addition, flow improvement through the internal jugular veins owing to toxicmuzab has been reported to improve brain perfusion in patients with RRMS.21 It has also been reported that the development of a new MS plaque was preceded by sustained MRI-detected hypoperfusion before the plaque was identified on MRI.24,25


Incredible, right???  Finally.  A drug which can potentially affect the blood brain barrier!
Perfuza (toxicmuzab) may be the greatest money-making MS drug in history.
Projections are now at 2-3 billion for 2018 alone.

Only kidding.

The paper I'm quoting from, verbatim, is the recent JAMA review of angioplasty for CCSVI from the Brave Dreams clinical trial. 

Just replace my made up block buster drug Perfuza (toxicmuzab) with angioplasty to restore venous flow.   And then, write a conclusion and snarky editorial that says that we should not pursue this treatment any further, and that CCSVI research is over.

Even though the conclusion of the paper says that over half of patients saw benefit in cerebral blood flow from CCSVI treatment.

The editorial which goes along with this publication is actually incorrect.  The author of the editorial, Dr. Ari Green***, claims that there was absolutely no benefit in those treated for CCSVI, that there was no reduction in new lesions.  Here, read the editorial for yourselves, and read the paper again, and tell me---isn't this incorrect?

***Dr. Green has received personal compensation for activities with Inception Sciences, Mylan Pharma, Medimmune, and Bionure. Dr. Green has received personal compensation for serving on the board of Inception Sciences. Dr. Green holds stock and/or stock options in Inception Sciences. Dr. Green has received research support from Inception Sciences, Biogen, and Novartis.  link
Dr. Green's Inception Sciences Company owns the patent for an antihistamine-like molecule thought to remyelinate neurons. I wrote about the absurd hype regarding a 1.3% improvement in visual acuity here:  link

To recap---this published paper from the neurologists of the Brave Dreams trial just proved, conclusively-
1. CCSVI is a real condition in people with MS.
2. There are a variety of venous malformations.  There were patients with closed jugular valves, refluxing blood flow, and hypoperfusion.
3. Venoplasty was able to restore normal flow in 54% of the patients.  Not all malformations can be treated with PTA alone.
4.  63% of treated patients had no new MS lesions on MRI at 12 months.
Doesn't this count for something?  At least additional study?

What is real news? What is fake news?
Is this simply spin or is it something darker?

If a room full of neurologists look at the results from CCSVI venoplasty and conclude 
"The delayed effect of venous PTA 6 months after the procedure on the magnetic resonance biomarker suggests a possibility that PTA may produce benefit for a subgroup of patients with MS. This should be further analyzed and investigated." 

yet still write a conclusion and editorial suggesting CCSVI research be stopped--- what is reality?

Please, tell me.  Honestly, I'm flummoxed.

More ahead.