Biotin for Progressive MS

UPDATE:  December 2017---

Medday, the company developing high dose biotin for progressive MS, has told the European Medicines Agency that it wishes to withdraw its licence application for the treatment of progressive multiple sclerosis.The European Medicines Agency (EMA) has been examining data on high dose biotin (MD1003, Qizenday) since the application was accepted in September 2016. At a meeting last week, the EMA's Committee for Medicinal Products for Human Use (CHMP) concluded that the clinical data from two trials that enrolled 253 patients was not sufficient(link is external) to assess the effectiveness or the safety of biotin.  link

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.

http://www.ncbi.nlm.nih.gov/pubmed/25787192

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

Columbia Researchers Provide New Insight into How the Brain Regulates Its Blood Flow

A group of multi-disciplinary researchers at Columbia University have made an exciting discovery.  They have witnessed how the vascular system regulates blood flow to the brain.
http://engineering.columbia.edu/columbia-engineers-provide-new-insight-how-brain-regulates-its-blood-flow 

The vascular endothelium maintains the lining of all 60,000 miles of our blood vessels, even the vessels inside the brain.  It is the largest secreting organ in the human body.  Neurological researchers had postulated that endothelial cells were not as important in maintaining blood flow inside the brain--that the brain itself was responsible for initiating cerebral blood flow according to neuronal health.  But this theory was wrong.

The brain relies on healthy blood vessels to maintain healthy cerebral blood flow.

The brain was thought to use a different mechanism--and this has lead neurological researchers to focus on the cells surrounding blood vessels in the brain.

According to researcher and professor of biomedical engineering, Elizabeth M.C. Hillman, this supposition has lead to incorrect ideas on brain health.

“Once we realized the importance of endothelial signaling in the regulation of blood flow in the brain,” Hillman adds, “we wondered whether overlooking the vascular endothelium might have led researchers to misinterpret their results.”

Dr. Hillman has spent the past 10 years using advanced medical technology, to study how blood flow is controlled in the brain.  Her research team was comprised of a multi-disciplinary members.  Other lab members who assisted with the study included PhD and MD/PhD students from Columbia Engineering, Neurobiology and Behavior, and Columbia University Medical Center. The group combined their engineering skills with their expertise in neuroscience, biology, and medicine to understand this new aspect of brain physiology.

To tease apart the role of endothelial signaling in the living brain, they had to develop new ways to both image the brain at very high speeds, and also to selectively alter the ability of endothelial cells to propagate signals within intact vessels. The team achieved this through a range of techniques that use light and optics, including imaging using a high-speed camera with synchronized, strobed LED illumination to capture changes in the color, and thus the oxygenation level of flowing blood. Focused laser light was used in combination with a fluorescent dye within the bloodstream to cause oxidative damage to the inner endothelial layer of blood brain arterioles, while leaving the rest of the vessel intact and responsive. The team showed that, after damaging a small section of a vessel using their laser, the vessel no longer dilated beyond the damaged point. When the endothelium of a larger number of vessels was targeted in the same way, the overall blood flow response of the brain to stimulation was significantly decreased.

The researchers damaged the endothelial layer of cells, causing oxidative stress.  After this damage, the blood vessel was no longer able to dilate past the damaged point.  This process restricted blood flow to the neurons.

The damaged endothelium is what initiated lowered blood flow, also known as hypoperfusion.   We see hypoperfusion in MS, Alzheimer's, Parkinson's and dementia.

MS experts have maintained that it is the death of neurons in the brain caused by the unknown disease process we currently call "multiple sclerosis", which leads to a lowered need for cerebral blood flow.   Their assumption has been that the hypoperfusion of the MS brain (which is a scientifically documented fact) is due to MS.  
http://ccsviinms.blogspot.com/2010/08/blood-flow-and-white-matter-lesions.html

But what if this chicken and egg supposition has been wrong?  Have 70 years of EAE postulation and drug development placed the focus on the wrong cells?

Dr. Hillman is urging other researchers to join her in the pursuit of understanding how the vascular endothelium and brain health are connected.  

“Our latest finding gives us a new way of thinking about brain disease—that some conditions assumed to be caused by faulty neurons could actually be problems with faulty blood vessels,” Hillman adds. “This gives us a new target to focus on to explore treatments for a wide range of disorders that have, until now, been thought of as impossible to treat. The brain’s vasculature is a critical partner in normal brain function. We hope that we are slowly getting closer to untangling some of the mysteries of the human brain.”

I share her urgency.  It was seven years ago when I first began looking at the correlation of endothelial dysfunction and neurodegenerative disease.  Blood flow to and from the brain matters.  Understanding how we can reverse endothelial dysfunction and oxidative stress--not only through future drug development---but through present day lifestyle, exercise, nutrition, UV rays, smoking cessation and other means-- is critical in helping those who are suffering from cerebral hypoperfusion found in MS, Parkinson's, Alzheimer's and dementia.

Here's the program I created for Jeff.  I hope it can help you, too!

http://ccsvi.org/index.php/helping-myself/endothelial-health

Time equals brain,

Joan

Full paper A Critical Role for the Vascular Endothelium in Functional Neurovascular Coupling in the Brain  http://jaha.ahajournals.org/content/3/3/e000787.full

There is no miracle pill

April 11, 2012 at 12:18pm

We all know nutrition is an important part of good health and recovery in chronic illness.  If some forms of MS are indeed related to the venous system, as Dr. Zamboni's and others' research indicates, it's important to live a vascular healthy lifestyle.  

Medical doctors like Dr. Terry Wahls and Dr. George Jelinek have shown, through their own lifestyles and published research, the importance of diets rich in antioxidants and phytonutrients from fruits and vegetables.  It helps some people with MS find stability.  I believe there is no coincidence in this fact.

I wanted to write a bit about the new supplement companies coming forward with special, proprietary blends of products for MS that "enhance your DNA!!" or "provide epigenetic support!!"  These products can only be purchased by a special distributor.  

They all seem to all have snazzy webpages and YouTube videos hosted by toothy and tanned men in white coats.  Some of them get celebrities to hawk their wares.  The products all end in "ex" or sound vaguely scientific and futuristic.  They claim to switch on your body's own DNA. (Here's the deal, your DNA is already in the on position.  Epigenetics just means outside influences that change our DNA...stuff that isn't written in our code, but affects of genes from the outside.  Your genes are changed by what you ingest and come in contact with--both the good and the bad.  In other words, you control your epigenetics.)  

We then read testimonials from our friends online, whose lives have been forever changed by this one product, and they sincerely want to help us.  But this supplement can only be purchased from so and so, and we'd better go and meet so and so and change our lives.  Oh, yeah.  There's a dollar sign attached.

 ALL of these new supplements contain phytonutrients.  Phyto simply means plant in Greek.  So, these are nutrients from plants, that's all.  Nothing super special or proprietary. These supplements are very colorful.  Jeff's curcumin supplement leaves my hands orange.  We just had a note from the Hubbard Foundation on beets, and as Jason noted, BE CAREFUL!  Beet juice stains!  So does wine, which is rich in phytonutrients.  Any fruit or veggie rich in these nutrients will probably stain, because they have such intense color.  God made them colorful, and He made them good for us.