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

Saturday, May 16, 2015

Blood flow matters

If you ever wondered whether blood flow was important to brain health, all you would have to do is read about three new MS drug trials announced in the past month.

All three of these compounds have been shown in EAE mouse trials to reduce symptoms, reduce inflammation and slow progression of MS.  All three have been touted as "neuroprotective."

But all three of these medications have a very similar known method of action (MOA) in humans.  All have been used for years for cardiovascular and stroke patients.  All have an effect on the endothelium and release nitric oxide and lower blood pressure.  All three deal with "hypoperfusion", or reduced blood flow.

They all widen blood vessels, and increase blood flow to and from the brain.

guanabenz-- relaxes blood vessels so that blood may pass through more easily.
http://www.mayoclinic.org/drugs-supplements/guanabenz-oral-route/description/drg-20064106

ibudilast-- increases cerebral blood flow, is a vasodilator
http://www.ncbi.nlm.nih.gov/pubmed/18677969

biotin---decreases blood pressure, increases blood flow, treats ischemia (low O2) after stroke
http://www.ncbi.nlm.nih.gov/pubmed/18179728
http://www.google.com/patents/WO2014016003A1?cl=en



That's right.  MS researchers have learned from Dr. Zamboni's discovery of CCSVI and slowed cerebral blood flow and hypoperfusion in the MS brain.

But they do not want patients to try "alternative treatments"; to have venous malformations treated, or to receive HBOT treatment,  or have atlas adjustments, or to eat better, quit smoking, get UV rays or exercise more.  All of these alternatives have been scientifically shown to increase cerebral blood flow and perfusion.  These alternatives will help people with MS live healthier lives.  But they will not help MS researchers.

MS researchers would prefer it if you would take a pill.  That way, their research labs will remain funded.  That way, they receive finders' fees when you are enrolled in a drug trial.
(Up to $5,000 per patient!)
http://ccsviinms.blogspot.com/2012/04/clinical-trials-and-finders-fees-april.html

That way, they can receive speakers' fees, and have wonderful conferences, and do not have to address the elephant in the room----that the EAE model of MS is not MS.  EAE has been used to create a $20 billion dollar a year drug industry, based on immune modulation and ablation, but has not stopped MS disease progression in humans.

There is most certainly a problem with cerebral blood flow and hypoperfusion in people with MS.  In fact, all diseases of neurodegeneration have hypoperfusion.
http://ccsvi.org/index.php/the-basics/ccsvi-in-other-neurological-diseases

I simply wonder when the MS industry will admit that the new target of "neuroprotection", simply means increasing blood flow to neurons and myelin in the hypoperfused MS brain.

Still waiting,
Joan


This picture on the left is from Dr. Zamboni and Dr. Simka---it illustrates how cerebral blood flow becomes blocked, refluxes up jugular veins and goes to less efficient, collateral veins in CCSVI,  creating hypoperfusion.  I know it's real, because it's what my husband had on MRV (see pic on right)  And there is no pill in the universe that could have restored Jeff's blood flow.  He needed venous repair, and a new lifestyle.  Six years later, no MS progression.  This is real.


Thursday, May 14, 2015

"Neuroprotection" and Ibudilast

The latest MS drug trials all have a new target.  The new buzzword in MS drug development is "neuroprotection."  What does this mean, and why the switch?

Neuroprotection simply means protecting neurons by reestablishing blood flow and perfusion after a loss of oxygen to the brain.  We see these drugs are currently marketed to those who suffer from stroke.

Neuroprotective agents are used in an attempt to save ischemic neurons in the brain from irreversible injury.[2]    http://emedicine.medscape.com/article/1161422-overview

I wrote about this subtle shift from drugs which modulate the immune system to drugs which address blood flow in 2013.  Here's that post:
http://ccsviinms.blogspot.com/2013/08/medications-for-ms-addressing-blood.html

What MS researchers are now doing is working with pharmaceutical companies to test and prescribe new drugs which address the damage caused by slowed blood flow.  And these drugs are called "neuroprotective."

Which is exactly what Dr.  Robert Fox is doing now with Ibudilast.
How does ibudilast work?   
It relaxes blood vessels and increases blood flow by inhibiting phosphodiesterases and releasing nitric oxide from the endothelium.

Dr. Fox has been working on a clinical trial for those with progressive MS, using Ibudilast (MN-166) which has been prescribed to treat stroke and asthma patients for two decades-

Ironically, ibudiblast has already been studied in a phase II trial involving 292 patients with relapsing MS and was found to decrease relapses.

However, Dr. Fox's trial will only be looking at progressive MS.  This way, people with relapsing remitting MS can still be sold expensive immune modulating drugs, and the researchers do not have to change their EAE story line.  

When Dr. Zamboni discovered the link to slowed venous return, hypoperfusion and MS, he opened up a new way of looking at the MS disease process.  Although neurologists and MS specialists will not say this, he has changed how they are studying the MS disease process and how they are developing drugs to treat MS.

And, not coincidently, one such researcher is Dr. Robert Fox.  In 2010,  Dr. Fox, a neurologist, received money from the MS Society to study CCSVI, a vascular disorder.   A medical student in his lab discovered never before seen venous malformations in the jugular veins of cadavers of people with MS.  And in 2011, the results of this study cause quite a stir at ECTRIMS.


Some results from the first 13 cadavers were presented during a platform session at ECTRIMS by Case Western University medical student Claudiu Diaconu. He confirmed that venous structures in the brain and brainstem appear to be far more complicated and variable than previously thought.
In fact, the postmortem study revealed the presence of a novel venous valve that had not been described in anatomy textbooks.
Perhaps the most important finding was that most of the stenoses identified in the study were not associated with vessel wall thickness or circumference.
As a result, Diaconu said, cerebrospinal vein scans in live patients "should focus on identifying intraluminal abnormalities, not just vessel wall narrowing or thickening.

What Diaconu found, and Dr. Fox knows---"intraluminal abnormalities with possible hemodynamic consequences were higher in MS patients compared to healthy controls."  
http://registration.akm.ch/einsicht.php?XNABSTRACT_ID=137778&XNSPRACHE_ID=2&XNKONGRESS_ID=150&XNMASKEN_ID=900

"Hemodynamic consequences from intraluminal abnormalities" simply means they found a mechanical reason for the slowed blood flow, also known as hypoperfusion, which exists in MS.  Blockages inside the veins.

This hypoperfusion and ischemia in MS is a fact.  But neurologists and MS specialists cannot make any money treating venous malformations, or understanding how to improve perfusion with nutrition, exercise and lifestyle adjustments.  Understanding the heart brain connection won't benefit them, or their labs.

That's right.  Dr. Robert Fox will never tell you that ibudilast is a post stroke treatment, already approved and shown to relax blood vessels, increase blood flow, oxygenation and perfusion in the brain.  And it helps people with RRMS, as well as progressive MS.  He will tell you it is "neuroprotective" and blood flow doesn't matter....

I am so sick and tired of this charade.  I hope everyone can understand this.  Medicalese is being used to keep people in the dark regarding the MS disease mechnisms.

Hypoperfusion and slowed blood flow are realities in MS.  

Make sense?

Joan









Monday, April 27, 2015

Biotin for Progressive MS

Recent research and press releases on the use of super-high dosages of biotin (300 mg a day, also known as MD1003) for progressive MS are all over the internet, after moderate improvements in MS symptoms were announced at the annual American Academy of Neurology meeting last week.  MS boards and patient blogs describe how people are considering trying this therapy on their own, by securing high dosages of biotin from compounding pharmacies or health food stores.   But strangely absent from this online discussion is the method of action implied for biotin, which is targeting the results of a decrease in cerebral blood flow, as well as the actual results of pilot studies.  I think it's vitally important to look behind the MS research headlines, and consider the science.  Especially before investing time, money and hope in a new product.

I simply do not think it's wise to take mega-doses of biotin.  Although I do think it's important to deal with slowed cerebral blood flow in the MS brain.  Please take 5 minutes to read this note, and I believe you might feel the same way.

I first wrote about biotin at the beginning of April, on the CCSVI in MS Facebook page, after one of our administrators posted a link to an abstract.
High doses of biotin in chronic progressive multiple sclerosis: A pilot study.

Here's what I posted below the link from Sandro:
"Biotin is also known as vitamin B7. It is found in peanuts, leafy green veggies and egg yolks. It is naturally produced by healthy intestinal bacteria. Smoking and drinking can deplete it. Thanks to Sandro for this link.  
All of these ideas can be found in the Endothelial Health Program, which recommends probiotics, B vitamins, dietary increases in leafy veggies, and smoking cessation. It's not a pill, it's a lifestyle. Joan"

At that time, readers were asking for more information, so I dug a bit deeper and found the patent application for this new "drug."
http://www.google.com/patents/WO2014016003A1?cl=en

"A pharma company is patenting this high dosage of biotin, to market this vitamin as a drug. Here's the patent. I suggest you read it, it is enlightening. They are also patenting this "drug" for ischemic stroke damage and hypoperfusion. Drug companies understand the vascular connection."


In fact, if you read the entire patent application, the method of action for high dosages of biotin in multiple sclerosis is explained--biotin is targeting the damage from ischemia.  This vitamin addresses the results of  decreased cerebral blood flow, which creates ischemia, oxidative stress and reduced ATP production in the brain's cells.  From the patent application:

 The major responsibility for the evolution of the ischemic penumbra is the status of local cerebral blood flow. It is assumed that a decrease in cerebral blood flow yields reduced ATP production and failure of Na+/K+ pumps, increasing extracellular glutamate and activating glutamate- mediated channels, ending in an increase of intracellular calcium that is deleterious for the cell. It is widely accepted that the ischemic penumbra is a target for neurorepair and neuroprotective therapies.

Once again, we see quite clearly that drug companies understand the fact that the MS brain is hypoperfused and suffering from ischemia.  They know there is a vascular connection in MS, and that the damage to the MS brain is very similar to ischemic stroke.  


The results of the biotin study were somewhat compelling, but I was surprised at how many people were ready to take high doses of a vitamin, without understanding the mechanism of action, or the fact that this treatment was created for a very specific type of MS--mainly optic neuropathy.  In fact, the major improvements in patients in the trial were not in motor abilities, but in vision.  The changes is EDSS were incredibly minor. All of this information is very specifically addressed in the patent application.

I've often said that it is much easier to placebo control one compound, one drug, one treatment modality at a time, rather than an entire lifestyle. Because of this fact, drug companies are able to test high dosages of biotin in the gold standard method, against placebo,  and publish results.  But this does not mean that the best method of addressing the damage of a hypoperfused brain is high dosages of biotin.


There are side effects noted with high dosages of biotin, and serious interactions with other drugs.

Interactions. Biotin negatively interacts with anti-seizure medications and medications that help lower cholesterol, causing these medications to work less effectively. While biotin is helpful in regulating your metabolism and blood sugar levels, it can have a distinct effect on the overall blood glucose level in your body. If you are taking medications like cholesterol medication or anticonvulsants or treating a condition like diabetes, taking biotin can have an impact on your symptoms.
http://www.md-health.com/Biotin-Side-Effects.html



Best results are found in a complete lifestyle approach, with cardiovascular exercise, physical therapy, whole food nutrition full of leafy greens and phytonutrients from plants, stress reduction, probiotics,  UV ray therapy, vitamin D supplementation, vitamin B supplementation, smoking cessation, hydration, adequate sleep,  and addressing venous malformations which may be impacting cerebral blood flow.

There is no one miracle pill or supplement or drug which can replicate the results of a complete lifestyle.

Here's the complete program I created for Jeff, which takes all of this into account.  It was created to deal with oxidative stress, hypoperfusion and energy depletion in the brain.
http://ccsvi.org/index.php/helping-myself/endothelial-health

The Endothelial Health Program was created to increase cerebral blood flow, via healthier blood vessels and cardiovascular function.  All of the steps are proven, scientifically, to increase cerebral blood flow and oxygenation of the brain.  It is preventative and reparative medicine.  And it works.  Jeff's going strong, now 8 years past his MS diagnosis, with no MS progression and a reversal of brain atrophy on MRI.  He's still jogging and working full days. Always consult with your own physician before beginning a new lifestyle program.  Jeff works with our GP, to make sure all of his blood numbers are good, and that he is doing well on his program.

Be well, be hopeful, but understand that there is not one pill or compound or vitamin that will ever replace a multi-modal, systems approach to healing.

Joan