Biotin and other B vitamins

I started this treatment in August 2003, along with my husband, Dr David Wheldoni: the same treatment but for different reasons: I had secondary progressive MSi but his problems were mainly cardio but also arthritic.  As you can see from out Patient Stories, we both made vast improvements.  I finished the treatment in late 2007 and have since then not had a single attack of MS returning: in fact in the following years I have even had a few new improvements, the most recent being the complete disappearance of my Babinski’s reflex, where my feet, especially the right one, would shoot upwards if touched on the sole.  This made cutting my toenails an arduous process.  My walking is still not of the best though, as is my handwriting, although my drawing skills are back in full force.  Wondering what more I could do, I hit upon the following:

There is a trial for high dose biotin underway for progressive MS.  This trial was in France but the paper is written in impeccable English:

http://www.sciencedirect.com/science/article/pii/S2211034815000061<

Various dosages given were from 100mg to 600mg.  If you read it you will see that there are some more than encouraging results. 

Now, neither of us are looking for an actual cure for MS, since I have already found mine and David doesn’t have MS in any case.  Neither of us can claim to be 100% neurologically perfect so we are looking to see what improvements either of us might make by taking 100mg a day and will post accordingly.

This is a worthwhile experiment because much can be seen on the internet about how good biotin is for hair loss, which sounds nugatory until you think of the fact that hair is ectoderm as is the embryonic brain.  This pdf is fascinating:

http://www.columbia.edu/itc/hs/medical/humandev/2004/Chapt4-Ectoderm.pdf< ………………..Sarah

Comments

Are you still using biotin ?

Hello Sarah 

Are you still using biotin in high doses and how is it benefiting you now?

Thanks 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

May 30, 2017, use of high dose

Homina, yes most days I am taking 200 mg of biotin most days.  For a time I was taking 300 mg and maybe I should have carried on at that dose for longer, since this isn't an instant aid, but at that rate I could nearly watch my fingernails grow and I really dislike long nails................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Biotin helps

Hi Sarah,

at the moment  I take 20 mg daily and I can move much better. I need less sleep .

I hope my kidneys won´t be damaged.

Best wishes

sphinx

 Wheldon CAPi May 2008,   52  Tinii pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpni free Oct. 2014

Sphinx, why are you worried

Sphinx, why are you worried that it may damage your kidneys?  People are safely taking high-dose biotin up to 600mg a day: I am taking 100mg...................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah, I had no idea there

Sarah, I had no idea there was an update (and such a good one, too) from Ken and Kim!  .  With everything they've been through, this is great news! Thanks for posting it here!

I started taking biotin on your suggestion, but wasn't being consistent, so plan to re-start, once I get home from a brief trip. 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I only saw it by accident: I

I only saw it by accident: I knew Kim had started taking it and now I have found out that Ken is making all the capsules himself, after working all day.  Since I am only taking the smaller amount, I just buy the tablets.

Enjoy your trip then restart and I guarantee that you will be able to watch your nails grow.................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Let the testing begin!

Just received some Biotin and started the day with 300 mg. Already feeling a bit of an energy boost. 

My goodness: that's good! I

My goodness: that's good! I have been splitting 100mg into two lots lest I waste it by weeing it out but was thinking that such a comparatively small amount could be taken in one go, so perhaps I will do that.............Sarah 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thank you for posting this,

Thank you for posting this, but in David's case I think it not relevant, firstly because he sorted his problems out simply by taking much more methylcocalamin.  Secondly his tinnitus">i had already pretty much gone, in addition to the fact that his hearing was never affected one jot.  His hearing has always been pin sharp and it still is.

CCSVI? Well, I was the one afflcted with MS, but I never had tinnitus.

What we both find interesting with biotin is that we both are finding benefits on just 100mg a day.  And I don't mean just in growing longer and stronger hair and nails, but neurologically as well.  Most noticeable to me is that I no longer jam my right foot by the toes when walking dowsnstairs but David has noticed that I just generally have a better sense of balance, which I have noticed that he does as well...........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Tinnitus and CCSVI

When you said tinnitus">i, I thought of this paper:

http://www.pagepressjournals.org/index.php/vl/article/view/vl.2014.3854<

---------------------------------------------------------------------------------------------------------------

Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

Intriguing ?

 Hello everyone,

thanks Sara/ DW  for sharing this info.  I'm very interested since fatigue  plays one of the key roles in my case.  Reading about the Sarah' post/link I've noticed they mentioning thiamine and following innitial info found this:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736110/<

I already looking for Biotin source, does  anyone have experience with  Thiamine?  Anybody, information/ experience with ?

thanks A.

Link not working

Link not working Daka..... 

regards

D

The Greatest Risk of all is Not taking the Risk...

No problems

 It's working on my end ?

Link to another website that

Link to another website that gives good info here!

http://lpi.oregonstate.edu/mic/vitamins/thiamin<

Regards

D

The Greatest Risk of all is Not taking the Risk...

Daka, I only have experience

Daka, I only have experience of the thiamin I get in my multivitamins, but on the other hand, fatigue has never been one of my problems.

I guess that the lack of fatigue is also why it might take me a long while to show any improvements from taking biotin.......................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thiamin &fatigue

 Sarah,

 It's never too late,  I didn't include thiamine in my supplementsi how stupid I was.   Probably your body reaction might delay or based on your protocol smooth ride ( but the results noticeable)  you will/have expedienced the same thing-  delayed reaction? Or Your problem probably have different "face".  Consider yourself  Lucky with  luck of  fatigue  problems  

 The time will tell,  you may agree on this? 

 We are lucky we have you and DW  on our side.

We certainly are lucky, but

We certainly are lucky, but he did nearly come a cropper himself with his B12 deficiency!.....................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

As someone already said

Sarah,

DW must take care of him self first- he's our shinning star. Some man are though to admit when something is wrong- until cornered. As well as person typing these words. 

best of luck,

True Alex: he was worried in

True Alex: he was worried in the end but maybe more worried about me, who seemed like I was getting worse because I could see what was happening to him: a vicious circle!..........Sarah 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

.

pls disregard

Here's a page full of info on

Here's a page full of info on biotin. I do note what it says about raw egg white - strange but true. So those of you that have touted the virtues of mayonnaise: beware!

"Raw egg whites contain a protein called Avidin that interferes with the body's absorption of biotin."

http://umm.edu/health/medical/altmed/supplement/vitamin-h-biotin

 Cool

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Biotin

I've been doing a trial on myself of Biotin 10,000 mcg per day for several months now; I notice a large increase in energy, particularly in my legs.  Irene 

Forgive me here if I am

Forgive me here if I am wrong.... always gets confused on these Unit convertions...

you say you have been given yourself 10,000 mcg daily.... and find energy improvement, isn't that 10mg of Biotin..

All the reports that are carried out using biotin at high doses are given a daily dose of between 100mg - 300mg which would be 100,000mcg - 300,000mcg

That seems an huge amount .... doesn't it?

I know its water soluble but its quite a large daily dose...Surprised

Or am I all wrong in my guestimate on the units...

regards

D

The Greatest Risk of all is Not taking the Risk...

Irene, I am glad that you are

Irene, I am glad that you are finding improvements in energy at 10mg: I will certainly bear that in mind!  Our biotin arrived this morning and are aiming for 100mg a day. Yes Darren, that is correct.  The French trial which I have put above goes up much higher than that with some people, but since that is for people with progressive MSi and David certainly doesn't have that and neither do I now, we are trying something lower, but taking it in three amounts throughout the day lest we just wee it all out and waste it.

The thing is, I don't really want to have to take 100mg forever: Irenes dose seems much more manageable, but these trials have not been going on for long enough yet to see if any improvements are permanent so I guess we will just have to wait and see what happens.

However, since stopping CAPi, my hair and nails still grow much faster than before and that is before much biotin.  This is working on the fact that the brain and nervous system started out as ectoderm in the early embryonic brain.........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Biotin

Dear Sarah and David,

I´m really interested in the Biotin experiment.

Please keep us informed about it. I might follow you.

I did the same as Irene this week, and yes, my energy is much higher during the day but I don´t sleep as well as before, maybe of the higher dose of biotin, I´m not sure .

All the best

sphinx

 Wheldon CAPi May 2008,   52  Tinii pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpni free Oct. 2014

Take it in the morning, not

Take it in the morning, not at night to sleep better....

Sphinx, yes I will certainly

Sphinx, yes I will certainly keep you informed.  Nothing to report as yet though, but it is only three days!............................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Biotin dosage

I started on 3 tablets a day, so now just on one daily.  Irene

Many doctors neglect their

Many doctors neglect their own health; I am one of them. About a year after completing antibioticsi I stopped most of the supplementsi. That was a big mistake. After a year or so I began to get a peripheral neuropathy. This was most insidious in its onset. It would manifest itself in the evening. It grew slowly worse; occasionally I had to descend the stairs on my bottom. Sarah was very worried.

 

Well, I put myself on high doses of methylcobalamin (5,000 mcg three times a day) and two Healthspan vitamin B complex tablets daily. Within three days the symptoms began to evaporate. A friend who came to visit was astonished by the improvement. Now, three weeks later, I am much improved.

 

What were the symptoms? Firstly, a subtle lack of balance. Secondly, tinnitus">i: the hearing of numerous high, changing notes. (Those of a certain age will recall that, as children, they put their ear to a telegraph post to hear a range of singing notes. As a nine-year-old I thought the sounds were those of the actual messages, but they were caused by the wind in the wires. My tinnitus had a similar aeolian quality.) Paraesthesia in the legs and feet followed; then numbness round the mouth. Then weakness.

 

Many people as they grow older absorb less B12. Deficiency is apparently quite common, and is usually not recognised. Also, Chuck Strattoni tells me that in chronic C. pneumoniae infectionsi antibodies are raised against bacterial components which bind to B12; bound B12 does not pass the blood-brain barrieri. The answer is to flood the body with B12. I am told that methylcobalamin is the most active form and the most effective in deficiencies characterised by nerve symptoms.

 

So that is me on methylcobalamin for life.

As for biotin, Sarah and I thought we should try this and see what happens.

 

 

 

 

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

neuropathy and mineral imbalances

dr wheldon, i too have developed peripheral neuropathy after completing a 2-yr treatment of doxyi, zithro and pulses of flagyli. the symptoms felt worse after i discontinued the tratment. large doses of b12 provided a significant relieve. i have blamed flagyl and expected the symptoms to go away eventually.

i like to take infrared sauna and have noticed that my symptoms get significantly worse after ir sauna. this even when i drink lots of water during and after the sauna.

this lead me to see what other minerals contained in sweat are being lost and in what quantity. it turns out that sodium is lost at high enough level that could lead to severe imbalance. 

i also came across this interesting site discussing peripheral neuropathy in the context of diet and nutrients.

interestingly enough iodine defficiency is being quoted as significant contributor. anyway, i though i will share it with you. happy to hear your thoughts.

http://www.arniebakercycling.com/pubs/Free/NS%20Sweat.pdf<

https://www.jackkruse.com/what-is-peripheral-neuropathy/<

Adult onset asthmai in 2013 after bad cold that woul not clear. On capi since 2013.

You are damned right that you are on it for life:

You are damned right that you are on it for life: I have been worried sick for the last couple of years as I saw you steadily decline, so now you will take some every day.  More supplies should be beimg delivered any moment, so no slacking!  I am glad that it started working very quickly and that the deficiency hadn't been going on for too long.

I think that some other people might try extra methylcobalamin as well: I have always taken it regularly since I realised that I felt so much better taking at least 1000mcg a day rather than waiting for a cyancobalamin jab at my GPs.  I realised that I might have finished antibioticsi, but it would be foolhardy to stop B12, vitamin Di and many other things.

So now we have to wait for the piles of biotin to arrive and see what that might do for us both!............................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

You must look after yourself - for all our sakes.

Well, Dr Wheldon …

Like everyone else on this site, I wish you as complete a recovery as is possible, not just for your own benefit, but for mine too. There are lots of big names that feature on these pages but yours is the only qualified one amongst them. When questions of scientific or medical fact arise, it is your voice that is awaited. So, as a first priority, you must look after yourself; for all our sakes.

 Cool

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Sarah is as good as her

Sarah is as good as her word.

 

The packing-case of B12 arrived, this afternoon, brought in by two burly navvies. They were exhausted. I gave them a cup of tea. ‘That should last me the rest of my life,’ I said. ‘Sign here,’ said the foreman. I signed. ‘And there’s twelve more.’ Perhaps they think that I’m Methuselah.

 

Anyway, thank you, Sarah: we’ve saved each other for the brief period we have on earth.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

A cup of tea with THE Sarah

A cup of tea with THE Sarah and THE D W... Now that sounds lovely...

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...

Awesome Sarah!I still have

Awesome Sarah!

I still have peripheral neuropathy - though it's considerably better since I've gotten largely off of gluten.

Nugatory?  Interesting - I have not heard that word before:

nu·ga·to·ry
ˈn(y)o͞oɡəˌtôrē/
adjective
adjective: nugatory
of no value or importance.
"a nugatory and pointless observation"
synonyms:worthless<, unimportant<, inconsequential<, valueless<, trifling<, trivial<, insignificant<, meaningless<
"a nugatory observation"

I'm going to review the information you posted - and discuss this with Rick, as well as consider it for myself. 

I will also have to find ocassion to use "nugatory!" 

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Bit more do you think?

Hi!

Cool

I am the man that rattles with supplementsi. Yes, biotin is one of those supplementsi that I take first of the day. How much? Hang on, I’ll just go and check …

                                   …..

Here we are: uhmmm, 5mg! I think that’s what one would call a nugatory amount. I shall have to consider what action I should take on my biotin intake; bit more do you think?

Smile

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Normal rather than nugatory I

Normal rather than nugatory I would have thought! Wait to see what happens here, or be daring. Or take much more B12 like David, who had become very remiss about taking anything............Sarah 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Cyanobalamin v methylcobalamin

Thanks so much for this David & Sarah. We have been using 1000mcg of cyanobalamin but have just read about the difference between the two. Have now ordered the methyl version :)

I used to have trouble

I used to have trouble remembering which one to buy, then I started reminding myself CYANide is bad, so CYANocobalamin is not the one I should buy.  (Hey, it worked for me.)  Cool

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

That actually is how the

That actually is how the molecule is named: it has a cyanide group attached to it.  (It holds onto it so strongly that there's no poisoning issue, but that is where the name comes from.)

My latest on biotin.

Not two weeks yet but my nails are growing apace which is slightly annoying because I don't like long nails.  My hair seems to be growing similarly.

But what is happening to my internal endoderm as was?  Well, I did manage to cure the lack of communication between my PC and printer after downloading Windows 10, which I am very relieved about.  David also thinks I am going up and downstairs more easily.......................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I meant to say "internal ectoderm as was."

But I can't edit it now!

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah,As you were working

Hi Sarah,

As you were working your way up to a high dose can you tell me what dose are you at and what dose did you start with increasing by x per day?

Thanks

D

The Greatest Risk of all is Not taking the Risk...

Darren, I wasn't working my

Darren, I wasn't working my way up: there was a little biotin in my b complex, but then I just started to take 100mg a day in two or three amounts.  People in the French trial were taking from 300mg to 600mg but this was a trial to cure MSi, which it won't because you need to address the infection causing it first.  Since I had already done that by taking CAPi, I just wanted to see what further improvements I might get.  I don't think I will need to take 600mg a day....................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Perfect... thanksD

Perfect... 

thanks

D

The Greatest Risk of all is Not taking the Risk...

A good form of B12

Guys,

this B12 is a good form - 1 squirt on your skin is apparently equiv to 1 injection.

It is slow release (opposite to an injection). The methyl/adenosyl combo is the equivalent ratio to what you have in your body.

Undergoing clinical trials in Australia at the moment.... good if you dont like needles. Should be much better than oral forms.

http://b12oils.com/AdoMeBuy.htm<

Have fun, Mark

Now here is a question for

Now here is a question for everyone taking high dose biotin, asked by a friend taking 100mg a day herself: does taking it make anyone feel hot?  By this she means not hot and sweaty, but burning skin.

I am asking because neither of us feel  any difference with taking it, apart from the fact that we are having some already reported improvements in balance and strength, but I thought that someone might be feeling the heat...............................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Rick takes 300mg daily - no reports of any kind of effect...

Hi Sarah,

Rick has been taking 300 mg daily (we bought bulk, and weighed and put 300mg in capsules) - for about 2-3 weeks.

He hasn't reported any thing related to Biotin - he has had a pretty severe and immediate reaction to Flagyli though.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Reports of improvements from the Longlands Wheldon household.

David first: he has been dutifully taking his little pile of B12 tablets every day, plus the added biotin in high doses after reading about the French trials.

Yesterday an oak dining table meant to seat six people arrived, which I wanted to use for watercolour painting.  I had ordered it with the legs seperate to make it lighter, but as you must know, oak is a heavy wood.  I work on the middle floor, but the table is now in my room, ready to have the legs screwed on.  David carried it up unaided.

As for me, I have owned a multipart Swiss army knife since before we married but it has laid in one drawer of my desk since 2002 because I could not open it.  This mornng I was looking for somethinng to alter the metal strap of my watch which had become much too loose.  I found the knife and thought I would try it: I managed to open all the segments with comparitive ease, apart from the corkscrew.  I guess that this is a combination of the general improvement which I have been noticing from time to time since finishing the treatment, and the addition of 100mg  biotin a day.  What  it shows is that once the infection is gone, you can still hope for improvements bit by bit if you are willing to work for them.................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I started this thread about

I started this thread about high dose biotin with the thought that combining it with the CAPi treatment might be very beneficial especially to people with MSi.  I had started taking it myself in a lowered dose to see what improvements I might make even after having finished the antibioticsi quite a few years ago.

Now, I read about a patient of Sriram at Vanderbilt, over on ThisisMS, about whom I had had heard very little for a couple of years.  It turned out that she had suddenly relapsed badly.  So I told her husband about high dose biotin, thinking they might combine the two treatments.  This they did and here is the result:

"A self reflection ....

I have come to realize that my hiatus is not so much about stress at work, it's about a lack of excitement about improvement. I figured this out about myself, not through endless hours of self examination, but by observing my own feelings and emotions as I watched KIM WALK UP THE STAIRS TONIGHT, ALTERNATING HER STEPS, JUST AS NON-DISABLED PEOPLE DO ..... and I realized that I couldn't wait to come here and type.

Kim has been on 300mg Biotin daily for 2-weeks. Bladder control is improved. But, tonight, Kim walked up a flight of stairs, much like I do. I was shocked. "Kim, when were you going to tell me about this?". Let me back up a bit. For about the last year, it's been getting a lot harder for Kim to climb the stairs at night. She has needed help at times and one night a month or so ago, she complained on the stairway that maybe we need to move the bed to the main level of the house. That was my motivation to get myself back here to find something that might help. I spent weeks reading new material and Sarah was so very thoughtful to have messaged me about Biotin. Thank You Sarah!

So, this was big for us. Now, you have to understand, and I know we all do, that this is very early, very anecdotal, very much a one time occurrence, very not at all scientific. But, I am motivated to come here and share. I should tally up all of Kim's supplementsi and update the list here. I think we see Sriram in about a month. Oh, and today is my birthday. best birthday EVER! Ken"

http://www.thisisms.com/forum/antibiotics-f28/topic4375-165.html#p237136<

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.