l belong to the Biotin for Progressive MS – and have learnt so much from the people on this site - they are so pro-active. l have joined now - a group called Free indeed -Vitamin D3 - which is all about Dr Coimbra’s protocol - he is the Brazilian neuro who has been treating people with auto-immune diseases with D3 and other supplements.
Doctors trained in this protocol can be approached online- and skype appointments made. Lots of the people’s names l have seen on other MS sites.
And l have just been reading ‘Multiple Sclerosis and lots of Vitamin D’ by Ana Claudia Domene. l got it from amazon uk - and they also do a free kindle version. This is about this lady’s 8yrs of treatment with the Coimbra Protocol for Autoimmune Diseases.
With the high dose Vit D3 you need to drink lots of water. As well as take magnesium - or use magnesium oil topically.
We owe it to ourselves to follow up all these options - and not rely on the drugs that our GP’s dish out.
Most of these people also take LDN and Biotin - B complex and B 12 and Alpha lipoic acid. omega 3
Feeling so much better to-day - that l even went and rode my horse. Been a long time since l could do that.
Well done on the riding Frances, my mother in law can remember you riding when she was next door, she mentioned it the last time I saw her!
My second lot of biotin has just arrived …I had to pay duty this time but it’s well worth it!
Its vital that you get you vitamin D levels checked regularly…I used to take 5000iu but on my last test my levels were way too high and my neuro reduced me to 1000iu. I’ve recently been diagnosed with a kidney stone and since I drink gallons of water and have done for years the likelihood is apparently that it’s been caused by excess Vitamin D so there is always need for caution and checks even on things we often wrongly assume are harmless. I remember when Pat (snow leopard) started taking magnesium and a couple of days later was rushed to hospital with a suspected heart attack…turned out the magnesium didn’t suit her.
I use magnesium oil rather than tablets but I hate the feel of it on my skin…I noticed on Amazon that it’s available as a cream as well so I will try that next time.
I do hope the ride doesn’t knock you about and you can go out again soon,
I think as with all these diets and supplements you have to make sure you speak to your GP first, and have your levels checked. I know personally two people who have been very ill with Vitimin D toxicity, and not only that, another person who got very sick for drinking way too much water on a supplement diet which flushed out all her natural and necessary sodium, her levels were dangerously low.
You can get Vitimin D through eating correctly too. My levels are steady and i take no supplements. I also sit outside for minimum of 20/25 minutes a day to just get some light/sun on my skin.
I noticed these people also taking other things like LDN, so it could be that too which is helping them. I also advise caution and see GP before one starts radical diets etc.
I’m going to ask for a vit D check next time I have bloods done as I was advised to cut back on supplements when my D3 was too high. I was only taking between 1 & 2,000 iu a day. I started taking that full vit D 1,000 iu oral spray. I managed to get the 3,000 spray and I’ve had a couple of weeks taking it daily, so I need to see what that’s doing as I’ll try it every other day if my levels are too high again.
Just ring CityAssay Labs B/ham 0121 5074278 £28 - for a postal kit. They are brilliant and much more comprehensive then the GP’s test. lt is only a pin-prick test - and results can be sent email.
Our GP’s are years behind with their ideas of ‘levels’. After years of taking 20,000ius daily l am still only 98. on the Dr Coimbra protocol they are looking for levels from 300 -4,000ng/ml – whereas normally levels of 150/225 used to be recommended for MS.
l am going to get in touch with a neuro trained in the Dr Coimbra protocol. You can get a ‘skype’ appointment - although l do no of people [who have been on this site] who are going over to Portugal and Spain for an initial appointment. AND their GP’s are willing to authorise the blood-tests etc to monitor them. lt is the calcium levels that are a worry. That is why a non-dairy diet is requested. Calcium levels only need a urine test. Bone density - as well as correct any vitamin B12 deficiency.
Do look at Free - indeed Vitamin d3 protocol. on facebook.
Becca - l have had PPMS for 34yrs. Have no use in left leg/foot - bladder/bowel also useless!! - l rely on my rollator to get me about the house and garden. And outdoors - l use my Tramper scooter. Now l do exercise - l have an eliptical trainer and a Health Rider which l do a few minutes on each day - as well as doing a bit of Pilates. During the day l try not to sit down, keep moving even it if is a bit of a shuffle.
The Biotin and Vit D3 protocols, l am trying to follow, have given me more stamina and energy. l am taking magnesium L-threonate - which is supposed to be the best type. Magnesium Citrate and Oxide are too laxative for me.
lt seems that people with auto-immune diseases do not absorb essential vits and minerals enough , which is why we need to take optimum doses.
lts too much calcium that causes problems. - kidney stones etc. That is why you need to drink plenty of water throughout the day.
Changed GP’s this week. And thankfully, the new doctor has agreed to do the PTH blood test for me to see how high my calcium is- too high, l have to adjust my diet. Also, too low then it is easy to add a few nuts. But if he will monitor me - then l hope to still follow the vitamin d3 regime.
The book l mentioned previously , you can get it for free, on kindle l think.
Amazon have Nu U vitamin d3 10,000ius 365 - on offer at the moment - l bought 2 pots to get free postage.
Most Coimbra trained doctors do skype or whatsapp consultations. So no need to worry if you live too far from one. Good news - is that Michael Cawley - cawleymjd@gmail.com - who is a nutritionist in Dublin has trained with Dr Coimbra. Michael has been following th protocol himself as he has MS.
Vitamin D Protocol North America is a great fb group - so it High Vitamin D for Auto-immune Diseases. l did join the Vitamin D deficiency UK group - but they are not using the Coimbra protocol. And they seem to lack knowledge of the correct treatment.
We are up against a lot of ‘ignorance’ regarding our nhs doctors/neuros - and vitamin d. Now that they are recognising the danger of being vitd3 deficient - they are prescribing expensive and harmful meds that certainly will not help as they are too low in vitd3 and contain too many additives.
The best vitd3 to take is the softgel type - like Healthy Origins 10,000ius vitd3 [amazon] - taken in the morning - everyday.
Magnesium is just as important as the vitd3 - and they need each other to correctly. l take 3 types of mag - Magnesium L-threonate in morning magnesium lonic chloride midday and glycinate at bedtime. Citrate and Oxide are too laxative for me!
7 months on highdose vitd3 - and magnesium/B2 and my muscles are getting stronger. l have a physio who massages my legs and gives me exercises to do. She has noticed how my muscles have improved and my walking also. l lent her Ana Claudia Domene’s book - and now she too is now taking vitd3/magnesium.
Most of the people on the vitamin d protocol north america group did take dmd’s - and many also have had HSCT - and now find their lives transformed after following the d protocol.
Yes true it’s been so frustrating dealing with doctors that tell you sorry nothing is available to help PPMS I will get the correct vitamins. Thank you for doctors e-mail I will join Facebook page as well. Do you have PPMS? I read that it could take up to two years to see results if you have PPMS