I recently went to see my neurologist. As i have an aversion to medication and also suffer from PPMS he really didnt have much to give me. He said greatly increase your Vitamin D intake and google Biotin.
Is there anyone using this, and how successful have you found it?
Patricia
thanks for the reply
Hello Patricia,
I have been taking 300mcg of Biotin daily for about three months now. It is difficult to quantify the results of taking it, if any, so far. Experts suggest taking it for at least nine months to judge its efficacy.
Anecdotally, I believe it has helped with bladder control and the fatigue is less pernicious. I have some mobility but I cannot swear to any improvements there.
Take a look at the Facebook page that has some useful files about dosage, how to measure the dose and how to obtain it in concentrated form.
You will need to buy it in concentrated powder form and use a measuring device. I am sourcing mine from PureBulk in the USA. Postage is cheap but be aware that you might incur either a customs fee or VAT when it arrives. So far I have made two orders, one attracted the attention of the Border Agency but the other did not.
On the Vitamin D front, were you recommended a particular dose? I take 5000iu daily but others take up to 10,000iu. You should have been advised not to take Calcium supplements with it in case calcification sets in. After a few months on a high dose, ask your GP for a blood test to check your Vitamin D level and your Calcium level.
Best wishes
Alun
Hi Alun
Thanks for your help i have been advised to take 3000ui daily of vitamin D dont take calcium supplement, how much do you order at a time from Purebulk. I am still amazed that neurologist suggested i google it , but did tell him i have been taking LDN for years so may be a reason why he felt he could suggest it
Patricia
10,000ius daily is recommended for ‘healthy’ people. For anyone with an auto-immune disease it is best to join Coimbra’s Vitamin D Protocol for MS and Auto-immune Disorders. Great lot of people - very helpful. Dr Coimbra is a Brazilian Neuro who has excellent success treating patients with vitd3/magnesium/B2/B12 and other vits/minerals. Pharmacuetical companies not happy about it as they are losing money on their drugs.
Biotin is another b Vit - and it is best to get the pure powdered Biotin from somewhere like Pure Bulk. 50grams would last you about 6months. You would need to weigh it on small digital scales - like jewellers scales. Either take 100mg x 3 daily or put 300mg into a bottle of water and drink in stages throughout the day - making it pro-longed release.
l do both vitd3 and biotin [and ldn and CBD paste]
Never take the GP’s prescription vitd3 - full of toxic fillers and more expensive than buying it online in pure softgel capsules. And l use CityAssays LAb B/ham for testing D levels. Have used them for many years. My original level was 7 - and it needs to be 175/225 nmols. NHS levels are way lower - but then they are about 50yrs out of date.
With autoimmune diseases - it seems we are all low in vitd/magnesium/b12 etc - due to bad absorbtion. So it is worth taking at least 10.000ius daily in summer and more in winter - plus b12 and b complex + biotin and magnesium malate in morning and Glycinate at bedtime. The mag will also help with joint pain and restless legs.
thanks for your help Spacejacket
patricia
Hi Patricia, I started with the powder but found it really fiddley and I did do something wrong as I went through it too quickly.
So now I buy the capsules. A bit more expensive but I think worth it. I buy them from MetaBiome at www.metabiome.com and did get stung for duty in this country (they’re from the USA) but did hear that an Italian company are now selling them and while we’re in the EU we won’t be charged duty. I’ll see if I can find the link for that provider.
I have had really good results. It’s been 7 months now and my walking has improved no end as has my energy!
I wish someone in UK would start selling it! Any entrepreneurs out there wanting to start a business??? Apparently it’s all bought from somewhere in the east so I bet there’s a good profit margin!
Best of luck,
Pat xx
Pat
can i ask do you take three capsules a day? new to this so probably being a bit thick
Patricia
Patricia,
Sorry for the delay in replying.
Initially, I bought 25 grams from PureBulk that cost just over £30 plus postage of £6. I started using it in early April and I still have about two weeks worth left. I use a measuring spoon as recommended by the following file on the Facebook user group.
I bought some more recently, but I decided to buy 50 grams at just over £50. On this order the Border Agency interceded and decided to charge me VAT and then Royal Mail added a handling charge.
http://www.royalmail.com/sites/default/files/International-customs-charges-leaflet-Jan-2017.pdf
This leaflet suggests that imports with a value over £39 might draw their attention. You live and learn.
On the Vitamin D front, I had my blood tested recently and the reading was 180 n/mol. For me, taking 5000iu clearly works, as I was in the range recommended for MS sufferers, as stated by Spacejacket.
Best wishes
Alun
Hi Patricia, yes I take one after breakfast, one after lunch and one at 8 pm.
I have had significant improvement although I had also made some other changes in my life. I lost 2 and a half stone and I eat one square of very dark chocolate a day (helps with fatigue). Also I pray.
So not sure if all the improvements are Biotin or not! But I will certainly keep taking it because my life has been turned around.
Pat xx
Hi Pat. I would be interested in that link, if you can find it? Thanks x
Hi Patricia
i am a great believer in trying alternatives that may help keep me well.
I have been taking biotin fo 11 months I don’t have anything wonderful to report my energy is below zero but my bladder and bowels seem to be behaving. I am still mobile but can’t walk far. According to neuro my EDSS is 6.5 not sure I agree!
my neuro suggested a coffee every afternoon can’t say I have noticed any difference in my fatigue levels just more trips to the loo.
i am sitting between RRMS and SP so maybe that is why the biotin isn’t as effective. In the last 2 years I have had 3 episodes of Optic Neuritis which has left me visually impaired and the biotin hasn’t helped improve my sight. Still keep on taking the powder and keep the faith life could be worse
Kat x
I’m not sure if this is the same place as Pat got hers, but this is where I got my biotin capsules from - they are very efficient, and speak English - so I’d suggest e-mailing them rather than trying to go through their form.
It’s been quite a while since I ordered some (I didn’t do well on high dose biotin, it increased my spasticity when I was only taking one capsule a day), but it looks like they’ve refined their operation since I ordered.
Jo x
Hi I managed to source a supplier in the UK who supplied 100gm plus scales for £125. I asked if he could knock the VAT off which he kindly did for me.
So far I can honestly say less fatigued which is a major bonus and feel a lot better in myself with no relapses.
Horsemad,
That’s good news. Are you prepared to share your source with the rest of us?
Alun
lt is imperative that you use digital scales to weigh your powder. Amazon/ebay sell them very cheaply. Put a piece of edible rice-paper onto the scale before switching on - then weigh the powder on it - about the size of a tiny petit pois pea. So no guessing!!
You can even make up your own capsules - as the kit can be bought -amazon again. But just by adding the 300mg to a bottle of water and drink gradually throughout the day is an excellent way. Especially, if you are out at work etc.
So glad more of you are trying this. When l first mentioned that l had started - about 3 yrs ago - fb group Biotin for PPMS - l had little reaction. ln the original trial the doses were 300mg to 600mg spread through the day.
l also follow Dr Coimbra - Brazilian Neurologist’s protocol – fb group Coimbra Protocol for MS and Auto-immune disorders - now this is really excellent with a high success rate. Monitored by trained doctors and nutritionists. Each persons treatment depends on their blood results/weight/ and mobility etc, so not one size fits all.
We need to do all we can to keep ourselves from progressing with this damn awful disease - and as our bodies are made up from vitamins/minerals/ fat and water then why take toxic drugs/meds that just make us worse off. AND our GP’s do not know anything about nutrition - it is not part of their medical training. And of course they all work hand in glove with Big Pharma - who certainly do not want us to get better - bad for profits.
Admin said I wasn’t allowed to put a link as it’s classed as advertising, so if you want the details send a pm and I will let you have the details
thanks all for your help much appriciated
patricia
Kat
I think it is the fact Neurologist told me to google it they dont usually suggest anything that the NHS hasnt approved had that issue with LDN saying that my GP was good
patricia
My walking has improved beyond recognition since I started biotin! I also feel that it’s improved my recovery time as in whatever we do we get payback the next day.
Cant recommended it highly enough.
Nina x