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.
I still plan to finish 1 year on biotin.
Sunday, November 29, 2015
Saturday, November 28, 2015
Friday, November 27, 2015
Sunday, November 22, 2015
Friday, November 20, 2015
Thursday, November 19, 2015
Tuesday, November 17, 2015
Monday, November 16, 2015
Saturday, November 14, 2015
Thursday, November 12, 2015
Wednesday, November 11, 2015
Monday, November 9, 2015
Sunday, November 8, 2015
Saturday, November 7, 2015
Friday, November 6, 2015
Thursday, November 5, 2015
Wednesday, November 4, 2015
Tuesday, November 3, 2015
Monday, November 2, 2015
Saturday, October 31, 2015
Friday, October 30, 2015
Wednesday, October 28, 2015
Tuesday, October 27, 2015
Monday, October 26, 2015
Saturday, October 24, 2015
Friday, October 23, 2015
Wednesday, October 21, 2015
Tuesday, October 20, 2015
Monday, October 19, 2015
Sunday, October 18, 2015
Saturday, October 17, 2015
Friday, October 16, 2015
Thursday, October 15, 2015
Wednesday, October 14, 2015
Tuesday, October 13, 2015
Monday, October 12, 2015
Saturday, October 10, 2015
Friday, October 9, 2015
Thursday, October 8, 2015
Wednesday, October 7, 2015
Tuesday, October 6, 2015
Sunday, October 4, 2015
Friday, October 2, 2015
Thursday, October 1, 2015
Wednesday, September 30, 2015
Monday, September 28, 2015
Sunday, September 27, 2015
Friday, September 25, 2015
Wednesday, September 23, 2015
Monday, September 21, 2015
Sunday, September 20, 2015
Saturday, September 19, 2015
Friday, September 18, 2015
Wednesday, September 16, 2015
Tuesday, September 15, 2015
Monday, September 14, 2015
Saturday, September 12, 2015
Friday, September 11, 2015
Thursday, September 10, 2015
Tuesday, September 8, 2015
Sunday, September 6, 2015
Saturday, September 5, 2015
Friday, September 4, 2015
Thursday, September 3, 2015
Wednesday, September 2, 2015
Tuesday, September 1, 2015
Monday, August 31, 2015
Sunday, August 30, 2015
Saturday, August 29, 2015
Thursday, August 27, 2015
Wednesday, August 26, 2015
Tuesday, August 25, 2015
Monday, August 24, 2015
Sunday, August 23, 2015
Saturday, August 22, 2015
Friday, August 21, 2015
Thursday, August 20, 2015
Wednesday, August 19, 2015
Tuesday, August 18, 2015
Day 127
230 mg yesterday. Started mixing in some of the other brands that aren't explicitly d-biotin
Sunday, August 16, 2015
Saturday, August 15, 2015
Friday, August 14, 2015
Wednesday, August 12, 2015
Monday, August 10, 2015
Sunday, August 9, 2015
Saturday, August 8, 2015
Friday, August 7, 2015
Thursday, August 6, 2015
Wednesday, August 5, 2015
Tuesday, August 4, 2015
Monday, August 3, 2015
Sunday, August 2, 2015
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. ) ;
Yesterday was the longest in 109 days I've gone withou biotin. Dinner and a movie and forgot travel baggy. ) ;
Thursday, July 30, 2015
Wednesday, July 29, 2015
Tuesday, July 28, 2015
Monday, July 27, 2015
Saturday, July 25, 2015
Friday, July 24, 2015
Thursday, July 23, 2015
Wednesday, July 22, 2015
Tuesday, July 21, 2015
Monday, July 20, 2015
Sunday, July 19, 2015
Friday, July 17, 2015
Thursday, July 16, 2015
Tuesday, July 14, 2015
Monday, July 13, 2015
Sunday, July 12, 2015
Saturday, July 11, 2015
Friday, July 10, 2015
Thursday, July 9, 2015
Wednesday, July 8, 2015
Tuesday, July 7, 2015
Monday, July 6, 2015
Saturday, July 4, 2015
Friday, July 3, 2015
Thursday, July 2, 2015
Tuesday, June 30, 2015
Sunday, June 28, 2015
Saturday, June 27, 2015
Thursday, June 25, 2015
Tuesday, June 23, 2015
Monday, June 22, 2015
Sunday, June 21, 2015
Saturday, June 20, 2015
Thursday, June 18, 2015
Wednesday, June 17, 2015
Tuesday, June 16, 2015
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.
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.
Sunday, June 14, 2015
Saturday, June 13, 2015
Friday, June 12, 2015
Thursday, June 11, 2015
Wednesday, June 10, 2015
Monday, June 8, 2015
Sunday, June 7, 2015
Saturday, June 6, 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).
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).
· 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
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.
Wednesday, June 3, 2015
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.
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.
Monday, June 1, 2015
Sunday, May 31, 2015
Saturday, May 30, 2015
Friday, May 29, 2015
Wednesday, May 27, 2015
Tuesday, May 26, 2015
Monday, May 25, 2015
Sunday, May 24, 2015
Saturday, May 23, 2015
Friday, May 22, 2015
Thursday, May 21, 2015
Wednesday, May 20, 2015
Tuesday, May 19, 2015
Monday, May 18, 2015
Sunday, May 17, 2015
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.
Friday, May 15, 2015
Wednesday, May 13, 2015
Monday, May 11, 2015
Sunday, May 10, 2015
Saturday, May 9, 2015
Friday, May 8, 2015
Thursday, May 7, 2015
Tuesday, May 5, 2015
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.
One leg stand times seem to be up on the left leg, right leg lagging. It's still very early.
Hopefully the right leg will be coming along in time. The earliest I expect to see improvement is 2 months.
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)
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)
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
Thursday, April 30, 2015
Wednesday, April 29, 2015
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 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.
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
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
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.
😊
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).
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
Wednesday, April 22, 2015
Tuesday, April 21, 2015
Monday, April 20, 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.
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.
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.
Friday, April 17, 2015
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.
Hopefully I'll sleep better tonight and actually miss a few doses. Hit 20 yesterday - expected 16 - 18 per day.
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:
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.
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.
Wednesday, April 15, 2015
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
- 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.
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:
· 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.