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, 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





7 comments:

  1. Funny how Big Pharma seems so concerned about us and a drug will cure whatever ails us. There's that Magic Pill scenario!
    While I was reading their report on this Biotin study all my mind was screaming ... geeeeeeze these facts and figures are nothing to brag about. It reminded me of the CCSVI struggles and how nay Sayers (no doubt Pharma driven) said all our findings were ANECDOTAL. It is true as I read their findings my brain was inserting ANECDOTAL after each percentage. I now realize everything they do is ANECDOTAL.
    I now wonder how can anything as you mention ...

    "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."

    ... be true in the drug world? I know this is too simple a thought but, I now believe that CCSVI is proven with more certainty because it can be "viewed" before and after. And as you also mention ...

    " 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."

    ... They do know the real deal but, just refuse to let the proper experts (without threatening them) to do their job.

    Again Joan ... Thank you for your wise and thoughtful words.

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    1. sure, Shirley. Yup, the improvements were very small, and very anecdotal. I just don't get why people are so quick to jump on a new magic pill bandwagon, without understanding what it is actually doing in the human body? Especially when the science is already out there. Want to increase cerebral blood flow, oxygenation and perfusion? Exercise, UV rays, laughter, leafy greens, sleep, quitting cigarettes---will all do the trick. And they are mostly free. Want to increase ATP and cerebral energy? Eat more fruits and vegetables, cut out sugar and transfats and gluten, drink water, not soda. Bingo. More cellular energy for the brain. Drug and supplement companies know we'd rather hope for a magic pill, than do the hard work and change our habits. Protandim, biotin, CoQ10....whatever. They're all OK, but they never replace lifestyle changes that help increase cerebral blood flow and perfusion. The magic pill mentality keeps us sick. OK, sermon over :)

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    2. some people have taken biotin for a few months see results. Biotin for MS Instruction Manual on facebook.

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    3. That's terrific news! But it's essential to understand WHY and HOW biotin works on hypoperfusion, oxidative stress and energy depletion....because there is so much more people can be doing. 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

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  2. The two modes of action are increasing atp production and remyleination.

    Ccsvi is widely discredited by recent studies involving thousands of patients.

    Trying to somehow suggest biotins efficacy supports ccsvi theory is nonsense.

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    1. CCSVI research is ongoing--clinical trials in Australia and Italy actual show improvements in patients.
      Neurologists may discredit the researchers, but vascular scientists are finding a connection. Here are the papers. http://ccsvi.org/index.php/component/search/index.php?option=com_search&task=search

      Biotin addresses ischemic injury from hypoperfusion, via ATP production. That is why it is being patented for ischemic stroke, too.
      "Ischemic brain injury is triggered by vascular occlusion, either in situ thrombosis or embolization of a clot from a proximal arterial or cardiac source. The vascular occlusion initiates a complex cascade of cellular events, encompassing many different pathways, that ultimately leads to irreversible tissue injury, i.e., infarction. Within the centre or core of the ischemic territory, blood flow deficits, low ATP levels and energy stores, ionic disruption and metabolic failure are severe, and cell death progresses in minutes. Within the core territory, salvage of rapidly dying brain cells might not be feasible without early reperfusion. In fact, once tissues are damaged beyond a critical point, cell death seems inevitable, despite restoration of both blood flow and ATP levels." http://www.google.com/patents/WO2014016003A1?cl=en
      Vascular occlusion, hypoperfusion--This has EVERYTHING to do with cerebral blood flow and CCSVI.

      The improvements seen in MS are INTERPRETED to be due to remyelination--according to improved evoked visual acuity and optic nerve...but there were no measurements taken with MRI which showed remyelination. NONE. http://www.msard-journal.com/article/S2211-0348(15)00006-1/abstract
      Remyelination is A SUPPOSITION. It's a guess on MOA.
      Visual acuity improvements could be from increased oxygenation and perfusion of the optic nerve. http://www.pubfacts.com/detail/18179728/Antihypertensive-effect-of-biotin-in-stroke-prone-spontaneously-hypertensive-rats

      Your post is actually nonsense. Learn how to read the science, Anonymous. It matters. That's why I always provide links to published science. Of course Biotin's efficacy supports CCSVI and vascular research.

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