Day 17

190 mg d-biotin yesterday

Day 16

Yesterday was 210 mg

Charting metric

this is not statistically distinct so don't read too much into it, but here's a chart of my first two weeks one leg stand times

Day 15

yesterday was the first day fully on d-biotin.  20 doses (200 mg).

Day 14

Yesterday was 210 mg (10 of it labeled as d-biotin).

Today will be purely d-biotin.  I am in the process of increasing my financial commitment to this trial, which will be necessary to go strictly with d-biotin.

For now I will log d or nd with my times.

Which biotins?

Here are the different brands of biotin I am using, along with pros and cons:

http://www.amazon.com/gp/aw/d/B00BPGPX1E/

Pros - states that it is d-biotin, no fillers

Cons - need 40x per day for 200 mg $7 / day at today's price

http://www.amazon.com/gp/aw/d/B009SZXM4E/
Pros - states it is d-biotin, $2.50 per day or so, fillers not too bad
Cons - not cheapest, some inactives

http://www.amazon.com/gp/aw/d/B009SD7OZ4
Cons - doesn't state d-biotin, contains calcium and magnesium stearate
Wish I hadn't ordered 3 bottles of these - will probably mix them in though

http://www.amazon.com/gp/aw/d/B00JZRQW10#
Pros - cheapest
Cons - doesn't state d-biotin, contains calcium and magnesium stearate
Wish I hadn't ordered 3 bottles of these - will probably mix them in though

Day 13

19 yesterday.  So far all days have been 18 - 21 (180 - 210 mg).

It was pointed out to me (Wheelchairkamikaze) that this is an estimate.  The FDA doesn't regulate supplements and there is no guarantee that I'm getting exactly 10 mg in each dose.

I'm willing to take that chance.  This trial isn't an exact replica of the Med-day trial, but it's what is available to me now.

😊

How enhanced is enhanced?

Since I felt like I might be seeing some benefit on day 11 - it got me thinking about what was plausible.  What is the upper bound for the impact of my enhancements?

- the primary enhancement is the distributed dosing.  The half life of biotin is 2 hours.  I am taking 3333% of the daily dose once per hour for 18 hours per day and every 2-3 hours at night.  The trial involves 33330% every 8 hours.

- the upper bound for this enhancement would be that the body sees no difference between 3333% and 33330% (90%+ of the Med-day biotin is excreted).  If this is the case then the eight hours see roughly (1 + .75 + .5 + .375 + .25 + .1875 + .125 + .091875) ~ 3.2

- 3.2 x 3 = 9.6 compared to 20.  Note that if 3333% is also too much for the body to process this would drop the 20 but it would also drop the 9.6.  The overall conclusion here is that at most the distributed dosing will double the effectivity.

This brings us to the second enhancement - eating biotin containing food with each dose.  If I am seeing results 11 days in, that would be six times faster than expected.  Since distributed dosing gives me at best a factor of 2, the food principle would have to be providing a factor of 3.

Plausible?  Maybe - jury's out.

Day 12

Day 11 was exciting.  I had my best game of soccer in (years?). Sure it could be placebo effect.  I'm not supposed to see any results for 2 - 8 months.

Still, I can't help but be hopeful.

Yesterday hit 20 doses (200 mg).

Yikes on the peanuts

20 times per day x 2 peanuts = 40 / 12 per serving = 3.33 servings = 7 g sat fat and 46 g total fat.  Since limits are meant to be 15 & 50 that's a big chunk of my daily allotment.

For now I'm dropping to 1 peanut with each dose.  Going to the store for Swiss chard asap.

Day 11

Day 10 was a record low (180 mg) - still not bad though

Day 10

yesterday took 210 mg - this is above the target of 180 - 200

Day 9

19 yesterday

Day 8

20 yesterday

Day 7

yesterday was 20

9 bottles (3 months) arrived today

Day 6

Yesterday was 18.

One possibility I have to consider

I have to be open to the possibility that the high dose is medically necessary and that my distributed dose misses the point and won't work.

I hope this is not the case - and I doubt it - but I do accept the possibility that my "enhancement" will negatively impact the results.

Day 5

Yesterday finished at 20.  Today is off to a late start.

Why this isn't patent infringement

biotin was not patentable.  What made it patentable was the pharmaceutical grade high dose.  My trial does not rely on that - it is using a supplement that has been available for decades.

The hourly dosing - which wouldn't be possible with the 100mg doses - is one of the two enhancements.  The other is my practice of consuming biotin containing foods with each dose.

Day 4

Yesterday finished with 19
Today will start soon

Good News

http://www.medpagetoday.com/MeetingCoverage/AAN/51048

Day 3

12:10 AM

Hopefully I'll sleep better tonight and actually miss a few doses.  Hit 20 yesterday - expected 16 - 18 per day.

The medical value of hope

It is fascinating that there is such a thing as the placebo effect. The necessity of double blinded trials shows us that there is some value in doing SOMETHING even if that thing has no intrinsic value on its own.

Overdose Concerns

I felt pretty confident going into my trial that I was OK.  I am using less biotin than the trial I am "enhancing" and distributing it more evenly.

It occurred to me, however (was pointed out by someone on thisisms.com), that I am consuming A LOT of filler.  So here are the fillers in the first brand of biotin I'm using along with what I could find about OD risk:

Xylitol:
"Very high doses of xylitol given by IV have been reported to cause high uric acid levels in the blood (which could increase the risk of kidney stones), changes in liver function tests (which could indicate stress to the liver), and high acid levels in the blood. There problems are not predicted to occur for other routes of xylitol use, such as in gum or candy." - I feel OK here

Cellulose Gum:
"Your body is not able to break down cellulose gum, so it simply passes through your digestive tract and you do not absorb it into your bloodstream. The U.S. Food and Drug Administration states that cellulose gum appears to have no effect on humans, except that the dietary bulk may fill you up and thus decrease the nutritive value of your diet. Nutrition labels for products containing cellulose gum can be misleading because products that contain cellulose gum sometimes include it in the dietary fiber count even though the body doesn't absorb it. The FDA also cautions that the consumption of large quantities of cellulose gum may have a laxative effect." - OK

Povidone (polyvinylpyrrolidone or PVP): PVP is a synthetic polymer used as a dispersing and suspending agent in virtually all encapsulated nutritional supplements; considered to be a potential carcinogen. - uh oh

Magnesium Stearate: This commonly used excipient can be made from animal or vegetable sources. It is used as a flowing agent and lubricant. It is insoluble in water and may hinder the absorption of nutrients. Research shows it suppresses the immune system. - uh oh

These last two have me a little concerned.  I'll look up the stuff that is en route from Amazon.  If it has bad fillers too I may have to consider ordering the pure biotin and having it compounded.

Thinking ahead

It feels a little odd to be taking 3333% the daily requirement of (anything) once an hour.  I'm thinking that after the first year I can drop down to 5 mg every 2 hours.

Day 2

Woke up and took 10 mg at:

12:50
2:20
5:00

Going back to sleep.

Metrics

The primary end points in the MD1003 trial are EDSS and TW25.  I don't really want to use those as end points.  A couple of metrics that may make sense to me might be:

- time to claw foot during soccer games.  My right foot tends to make a fist when I'm playing soccer after the first few minutes.  At the point that this happens my balance and leg strength is also deteriorating.  Typically I play well for the first 5 - 15 minutes before things start to go downhill.

- distance to vibrating legs on the stationary bike.  I typically ride 2 - 4 miles on the stationary bike but my legs start to vibrate about 1 - 2.5 miles in.  For the remainder of the ride I push down on my knees with my hands to steady them.

- others tbd

Started early - day 0.25

Ordered 10000 mcg (600 x) from Amazon for month 1.  Excited to start early so grabbed 180 x 5000 mcg at rite aid to last the  6 days before shipment arrives.

Took 2 x 5 mg at 8:48pm with a pinch of Spanish peanuts.  Plan to repeat at 9:50, 10:50, 11:50.

The plan

Trial plan:

·         Using 10,000 mcg (microgram) biotin from Natrol via Amazon.com
See Which biotin

·         Taking biotin with Swiss chard (just a pinch) or peanuts sunflower seeds (just a few)

·         1 unit once per waking hour

o   Or 2 units per 2 hours if necessary, always with biotin containing food

·         1-2 units if I wake up in the middle of the night for anything

·         Target 15 – 20 units daily

·         Maintain this plan for at least 12 months

·         Keep a log of actuals – recognizing that this is a difficult plan to adhere to

Rationale:

·         Patent based on 100 mg – 600 mg daily was well tolerated, therefor 200 mg should be safe

o   Biotin is water soluble and doesn’t build up in the body – excess will be excreted

o   Results were seen in case studies as low as 100 mg daily, most patients were given 300 mg

o   150-200 at the suggested interval most likely as effective as 300 in 3 daily doses

·         Half-life of biotin is 2 hours – that is why the frequent distributed dosing schedule

·         Food containing biotin most likely also contain elements that aid in the body’s absorption of biotin

o   Peanuts, swiss chard, egg yolks (but egg yolks contain saturated fat which is contra-indicated for MS)

·         Patients took 2 – 12 months to see results.  Will commit to this study for 12 months

o   Patients had very advanced progressive MS and still saw improvements – very exciting research geared towards recovering lost function

Considerations:

·         All indications are that this is safe.  Still – we are talking about hundreds or thousands of times the daily recommendation for Biotin

·         I’ve estimated cost to be around $45 per month.

o   There is a cheaper but less convenient and safe way to do this

o   Bulk pharmaceutical grade biotin is available for $166 / kg which would last more than a year at this dosing plan

o   This is less safe and less accurate and only saves $384 over the course of a year.  I don’t recommend it.