Tuesday, December 15, 2015

Ending trial early

Since upping dose to 300 I have seen a steady decrease in my balance.  I am ending the trial early - I think around 8 months.  I plan to taper off to avoid any bounce risk.  Probably go 200, 150, 200, 50, 10.

Wednesday, December 2, 2015

Day beyond

Since I have switched from my protocol to the standard protocol I no longer see the need to keep an accurate log.  I am still getting 300 mg in most days.  I think I have missed 2 doses this month.

I still plan to finish 1 year on biotin.

Tuesday, November 3, 2015

Wednesday, October 14, 2015

Monday, August 31, 2015

Tuesday, August 18, 2015

Day 127

230 mg yesterday.  Started mixing in some of the other brands that aren't explicitly d-biotin

Saturday, August 1, 2015

Day 109

190 mg yesterday

Yesterday was the longest in 109 days I've gone withou biotin.  Dinner and a movie and forgot travel baggy.  ) ;

Tuesday, June 16, 2015

Day 63

210 mg yesterday

Paper and pen logged night time doses:


Monday, June 15, 2015

Slight change to trial plan

given that adequate rest is an important element of the Swank diet and lifestyle, I sm going to try to cut down on dose logging at night.

Plan is to take enough at bedtime to get to 200 mg for day and take 20 - 30 mg at wake up with few - no midnight doses.

Day 62

200 mg yesterday

Saturday, June 13, 2015

Thursday, June 4, 2015

The Plan (reposted at day 52)

Trial plan:

·         Using 10,000 mcg (microgram) biotin from Natrol via Amazon.com
See Which biotin - now using Natures bounty exclusively.  It is d-biotin, calcium free, $9 per 6 day supply (120 x 10 mg is 6 days per my protocol).
·         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 (19 - 21 units daily so far)
·         Maintain this plan for at least 12 months
·         Keep a log of actuals – recognizing that this is a difficult plan to adhere to


·         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


·         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.

Tuesday, June 2, 2015

Day 49

210 mg yesterday.

Yesterday was very uneven with lots of missed doses and double doses.  I was extremely busy from early AM to late PM.

Part of the reason for keeping this log is recognition that 10 mg 20 x per day is an ambitious plan.  I want to be able to look back and see the "actual" - not just the idealistic version of what I think I did.

Tuesday, May 26, 2015

Day 42

210 mg yesterday.  Started doubling up on some night doses if I'd slept more than two hours.

Sunday, May 24, 2015

Day 40

40 days is a long time.

325 days to go (at least)

210 mg yesterday

Tuesday, May 19, 2015

Day 35

Yesterday was a bad day in terms of on time logging (meetings, mediation) but 210 mg.

Saturday, May 16, 2015

Updated Metrics Chart 05/16/15

Bad measurements today.  On the whole the left leg still seems to be trending up and the right leg is still flat.

Monday, May 4, 2015

Updated metrics chart

I am beginning to think that I've hit on a good metric with the one leg stand.  The charts are consistent with my experience.  My right leg hasn't improved but my left leg has.

Hopefully the right leg will be coming along in time.  The earliest I expect to see improvement is 2 months. 

One leg stand times seem to be up on the left leg, right leg lagging. It's still very early.

Sunday, May 3, 2015

Day 20

Plenty more d-biotin has arrived, so from here on out it will all be d-biotin unless specifically noted otherwise.

Yesterday was 200 mg which seems to be the most common daily dose.

RRMS or SPMS? - It's not one or the other

It is unfortunate that we feel the need to classify our MS as either or when in all cases it is most likely both.  I have seen SPMS patients have exacerbations (relapses) and I have been progressing as an RRMS patient.  What separates a bad week from a relapse?  Most likely not mechanism but only scale.  So if your relapses are too small to be seen by your Nuero you must be SPMS?

I don't think so, but I'm sure the insurance companies do.  If copaxone is doing its job (lowering relapse rate) and the patient is still progressing - does that mean they no longer need copaxone?  That's a load of hogwash - but the insurance companies will surely note that glatrimar isn't FDA approved for SPMS.  Ok, no worries, this patient will soon be able to take biotin (MD1003).  Until they have a relapse and realize that SPMS and RRMS are not either or but both and.

Which is why I am taking copaxone AND biotin (10 mg 20x daily with sunflower seeds)

Day 19

200 mg yesterday.  Good soccer game yesterday - may note on metrics page.

Friday, May 1, 2015

Day 18

195 mg yesterday.  Have my trusty travel bottle of d-biotin and sunflower seeds.  Did a poor job of logging doses but didn't miss any.  11:00 dose was very late so took 1.5 doses

Wednesday, April 29, 2015

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

Tuesday, April 28, 2015

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.

Monday, April 27, 2015

Which biotins?

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

Pros - states that it is d-biotin, no fillers
Cons - need 40x per day for 200 mg $7 / day at today's price

Pros - states it is d-biotin, $2.50 per day or so, fillers not too bad
Cons - not cheapest, some inactives

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

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.


Sunday, April 26, 2015

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).

Saturday, April 25, 2015

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.

Friday, April 24, 2015

Thursday, April 23, 2015

Tuesday, April 21, 2015

Sunday, April 19, 2015

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.

Saturday, April 18, 2015

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.

Thursday, April 16, 2015

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:

"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:


Going back to sleep.

Wednesday, April 15, 2015


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


·         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