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

Thursday, March 31, 2011

Searching for a cure

March 31, 2011 at 7:49pm

Let's talk about the word cure.  This is a very, very powerful word.  We use it when we talk about solving the worst of our mystery diseases, like cancer, diabetes, Alzheimers and multiple sclerosis.  But the truth is, doctors are now admitting there may not be an actual cure for these diseases.  They are beginning to write and speak out and say that prevention and lifestyle changes early in life may stop these diseases from happening later.   Here's a highly recommended paper on "the best cure for disease"

Let me explain further.

We understand that there is no cure for a stroke, right?  Someone develops a blood clot over time.  Maybe they smoked, maybe they didn't get enough exercise and liked to eat fatty foods, or maybe it was just a predisposition they inherited. One day WHAM!  The clot breaks off and heads up the carotid artery and goes into the brain.  The clot blocks blood flow and brain tissue doesn't get oxygen and it dies.  The stroke patient is given clot busting medicine, blood flow is restored, but there's been damage.

Well, it looks like the damage from CCSVI could be somewhat like a stroke.  It may be affected by epigenetics and environment. Lifestyle matters. It is a chronic process due to a venous malformation which creates slowed cerebral blood flow and possible venous hypertension.   

My husband lost his peripheral vision as a kid due to a swollen optic discs--but it wasn't until 30 years later he got an MS diagnosis.  We now know he had venous hypertension his whole life.  That's a long time!   Eventually the brain is not able to reroute around the damaged parts and there is MS progression.  This leads to an MRI, a lumbar puncture, an eventual diagnosis of MS.    But the part of the brain or spine or optic nerve that has been damaged is not going to come back completely, even if we get blood flow going correctly.  Dead axons are dead.  My husband won't get his vision back.  

There is hope through rehabilitation and recovery.  A stroke victim works hard to learn how to walk again, to speak normally, to take care of themselves.  Perhaps, via plasticity,  the brain can reroute around the damage.  But there is no "cure" for a stroke.  A stroke victim doesn't go back to the way he was before the stroke.  And that also happens in MS.

We need to stop speaking about venoplasty to relieve CCSVI as a cure, or a return to complete health.   It just gives false hope to pwMS, and leads to high expectations and later disappointment.  The truth is, the brain and spine may be damaged due to years of insufficient blood flow.  That doesn't mean there is no hope.  There may be symptom relief for many.  Often the relief comes in a lifting of fatigue or heat intolerance, a reduction in spasms, a return of better vision, clearer thinking, and yes, even return of mobility in some.  This allows for physical therapy, brain plasticity and rerouting,  retraining the body, adopting a new, healthier lifestyle and hopefully, an end to disease progression.  Just like a stroke patient--it is all about rehabilitation and a new life.

To make venoplasty the "cure" for MS is to expect too much.  Dr. Zamboni says so himself--this is not a cure.   As a community, we have to be honest with those who are looking at this treatment.  We need to be honest with each other.  And we need to realize that venoplasty is not a one time magical answer to ending MS.  It is a commitment to an ongoing lifestyle, a relationship with a vascular doctor, hopefully covered by insurance,  and a new life.  That may be hard to read and harder to comprehend on a gut level, but it has to be said; because too many are mortgaging the house, using their IRAs, going into debt--to buy a "lottery ticket" for a cure.  And they're getting hurt.

Don't get me wrong, I believe in miracles.  I've seen them in my own life and in others' lives, and I know God is bigger than any one of us--but I also believe in honesty and full disclosure.  Please understand that no one, including the doctors, is calling this a cure.  


Saturday, March 12, 2011

Bologna---18 months later

March 12, 2011 at 10:18am

To those who are new to the page, or those who may not have read the notes from the first Bologna  CCSVI conference when they were posted in September 2009, I'm linking them here:

This coming week many of the same doctors are reconvening in Bologna to discuss ongoing studies of CCSVI.  When I was invited to the first conference in 2009, Dr. Zamboni asked me if I could help out by inviting some press from the US to cover the meeting.  I called all of my press contacts, as well as several medical writers. None were available.  One medical writer yelled at me for calling and bothering her.  She  told me "no one is interested in this."  Her big medical story the week I called was Steven Tyler falling off stage and breaking his arm.  I told her she was wrong, people were interested.  

Things are different in 2011.  People with MS, their caregivers, doctors and activists around the world have focused a light on the proceedings in Bologna.  It turns out that people are interested in CCSVI.  Very interested.  

As the doctors reconvene and discuss all that they have learned in 18 months, as new doctors step up to the podium and bring innovative perception to the research, I'll be at home with my family.  I don't need to fly by myself to cover the meeting and post it online, because there will be many more witnesses.  There will be international press and a host of participants transcribing the presentations.  And that makes me very, very happy.

Thanks to Dr. Zamboni for continuing the research, in the face of some very powerful opposition.  Thanks to all of the doctors who have taken up this cause.  Thanks to all of you for researching, reading and sharing this information.  Thanks to those who have reached for the baton and are running forward, so I can go to a concert, make dinner, go to church, walk the dog and enjoy my weekend with my husband and son in sunny California.  And to all those in Italy, make sure to step outside during breaks, walk the lovely ancient streets and have a gelato!

Here is the link to the International Society of Neurovascular Disease site and information about the conference next week:

Stay tuned.  As reports come in from the meetings, we'll be posting them all over the internet.  And who knows?  Maybe that medical writer will discover that people really do care about Multiple Sclerosis and the vascular connection.


Monday, March 7, 2011

Dr. Zamboni and Dr. Zivadinov's hypoperfusion study

March 7, 2011 at 1:59pm

This research was presented in April 2010 at the American Academy of Neurology conference as a poster, but we have the full paper available to us online.   Those who have read the notes on this page know that this has been an area of research near to my heart.  Hypoperfusion simply means slowed blood flow through the brain.

Here is a link to the complete paper in pdf form:

To the best of our knowledge, this pilot study is the first to report a significant relationship between the presence and severity of CCSVI and hypoperfusion in the brain parenchyma. These preliminary findings should be confirmed in a larger cohort of MS patients to ensure that they generalize to the MS population as a whole. Reduced perfusion could contribute to the known mechanisms of virtual hypoxia in degenerated axons.

 An altered CBF (cerebral blood flow) pattern may be a consequence not only of local circulatory disturbances due to inflammatory mechanisms in acute or chronic phases, but instead could result from an outflow blockage situated far away from the lesions. CCSVI is a vascular condition described in MS patients that is characterized by stenoses caused by intraluminal defects such as web, septum, malformed valve or, rarely, by segmental hypoplasia/agenesis [1,2]. Stenosing lesions of CCSVI have been classified among the truncular venous malformation in a consensus document [18,19].
Therefore, CCSVI may impact local hemodynamics and overload microcirculation at places distant fromthe location of the mechanical stenosis, as in any condition of venous obstruction of the major trunks.
Such a mechanism may lead to capillary hypertension and leakage, consistently contributing to inflammation
[20]. In this pilot study, we have shown a strong relationship between the severity of CCSVI and hypoperfusion in the WM, GM and SGM.

Please note:
All 16 pwMS had CCSVI, none of the healthy controls had CCSVI.  All pwMS had slowed cerebral blood flow, or hypoperfusion, which affected the white matter and gray matter of their brains.

100% pwMS had hypoperfusion, which was related to the severity of CCSVI.

Bromelain---how pineapple can reduce inflammation

March 7, 2011 at 11:13am

Another one of my favorite supplements is bromelain.    
It is a natural anti-inflammatory and a proteolytic enzyme--meaning it eats up proteins.

Bromelain is a mixture of protein-digesting (proteolytic) enzymes found in pineapples (Ananas comosus). Pineapple has been used for centuries in Central and South America to treat indigestion and reduce inflammation. Bromelain, which is derived from the stem and juice of the pineapple, was first isolated from the pineapple plant in the late 1800s. The German Commission E approved bromelain to treat swelling and inflammation following surgery, particularly sinus surgery.
Bromelain can be useful in treating a wide range of conditions, but it is particularly effective in reducing inflammation associated with infection and injuries.

Be sure to read up on contraindications before taking, since bromelain does interfere with some medications:

Here is research from Duke University that shows why Bromelain tamps down inflammation:  it's all about decreasing the number of neutrophils that respond to a site of injury.  Neutrophils are a special type of white blood cell that is called in after injury to tissue.  They kill infectious agents and are defenders, but they also contribute to inflammation, and could potentially lead to restenosis, by leukocyte adhesion to injured blood vessels.

Bromelain, a mixture of proteases derived from pineapple stem, has been reported to have therapeutic benefits in a variety of inflammatory diseases, including murine inflammatory bowel disease. The purpose of this work was to understand potential mechanisms for this anti-inflammatory activity. Exposure to bromelain in vitro has been shown to remove a number of cell surface molecules that are vital to leukocyte trafficking, including CD128a/CXCR1 and CD128b/CXCR2 that serve as receptors for the neutrophil chemoattractant IL-8 and its murine homologues. We hypothesized that specific proteolytic removal of CD128 molecules by bromelain would inhibit neutrophil migration to IL-8 and thus decrease acute responses to inflammatory stimuli. Using an in vitro chemotaxis assay, we demonstrated a 40% reduction in migration of bromelain- vs. sham-treated human neutrophils in response to rhIL-8. Migration to the bacterial peptide analog fMLP was unaffected, indicating that bromelain does not induce a global defect in leukocyte migration. In vivo bromelain treatment generated a 50-85% reduction in neutrophil migration in 3 different murine models of leukocyte migration into the inflamed peritoneal cavity. Intravital microscopy demonstrated that although in vivo bromelain treatment transiently decreased leukocyte rolling, its primary long-term effect was abrogation of firm adhesion of leukocytes to blood vessels at the site of inflammation. These changes in adhesion were correlated with rapid re-expression of the bromelain-sensitive CD62L/L-selectin molecules that mediate rolling following in vivo bromelain treatment and minimal re-expression of CD128 over the time period studied. Taken together, these studies demonstrate that bromelain can effectively decrease neutrophil migration to sites of acute inflammation and support the specific removal of the CD128 chemokine receptor as a potential mechanism of action.

Bromelain is included in the Endothelial Health Program, and Jeff's been taking it for 2 years.  My Mom takes it for her sinus congestion and dizziness issues, my father in law takes it for COPD,  and they think it's the bees' knees.
Here's the Endothelial Health Program-

I love finding natural healing in medical research papers.  It reinforces my deeply held belief that we creatures and this planet were specifically designed for each other.