42 posts Page 3 of 5
For the Coimbra patients, were you able to learn of any stories of people who had a negative experience or reaction to the treatment? I am seriously considering the Coimbra approach. I will find a way! But I am trying to gather all the available information right now. There is a lot of good news out there, but before I proceed, I need to know of the potential downsides. Please let me know... I look forward to hearing from you.
PPMS: Right hand numbness 2009; increasing symptoms 2011; diagnosis 2013; OMS Dec 2013; Stable since 2013; Started Coimbra high vitamin D therapy May 2016.
There are a lot of people, who are convinced vitamin D in higher dose is toxic. Kidney stones is listed as the most popular side effect. There is no even a single story in facebook groups, where many people takes 60,000IU or biggger dose, with this specific side effect. In reality, the biggest problem with vitamin D high dose is loosing calcium in the bones. But not everyone is experiencing it. I think this side effect is the most unpopular among Coimbra protocol followers. I'm on high dose for 8 months already, I did DEXA and my results are good. I will continue to monitor my BMD closely, as it is potentially the only problem I could face. I think people must find a balance while on high dose. Too much calcium in longer run really can damage kidneys, but too few calcium can cause osteopenia and later on osteoporosis (NOTE: this is my personal opinion). Patients cannot agree as well on this subject, and why some people losses calcium and others doesn't have such problem even on dose higher than 100,000IU. Some people takes more K2 to prevent osteopenia, but my doctor says that K2 is not effective against high vitamin D dose. My doctor says that 30min aerobics/quick walking/other exercises eliminates osteopenia/osteoporosis risk. I will do DEXA in the summer and will know for sure. This side effect shows up pretty quickly from what I have read.
Dx 2015-02 (RRMS), REBIF 2015-03 till 2015-07, OMS 2015-05, High vit D. doses 2015-08
A very interesting and positive book about the author's experience of the high vitamin d protocol. In Englsh.
Multiple Sclerosis and (lots of) Vitamin D,by Ana Claudia Domene. Well written, well researched, and to the point. Also contains a few testimonies from other people who have used the protocol, It is available on Amazon. If you have questions, you can contact Ana through the link in the Facebook groups, (see below).
It includes many links to Facebook groups. The members are people who are patients of the Coimbra Protocol, set up to share their experience with the worls. There is a Portuguese, Spanish and Italian group, and recently a Norwegian group has been opened. If you ak questions in Englih, there is usually someone who will aner you in English. Mot of the groups have about 15,000 members.
There is also an updated list of doctors who have been trained to practise the protocol,
I am start taking 10,000iu a day (with a week of 20,000iu a day). I'm worried that bananas are on the "caution" list. I eat 2 a day (ever day). Is it because of the increased potassium, and the potential increase for kidney's?
Diagnosed June 2004
I should add, I also have kale daily. Dark leafy greens are so good, and the thought of limiting them really makes diet restrictive.

http://www.whfoods.com/genpage.php?tnam ... ce&dbid=38

Says 130g has 9%

but I guess this is 9% for someone who doesn't megadose on vitamin d?

Perhaps bananas (potassium) and kale (calcium) stress kidneys too much, for high dose vitamin-d?
Diagnosed June 2004
lym wrote: I am start taking 10,000iu a day (with a week of 20,000iu a day). I'm worried that bananas are on the "caution" list. I eat 2 a day (ever day). Is it because of the increased potassium, and the potential increase for kidney's?


Just letting you know....
What is being discussed here is the coimbra approach.
The levels of vitamin D given for this are far more than what we take to maintain a high vitamin D level.

On the coimbra approach it is done under the supervision of a doctor and yes calcium should be avoided.

We on OMS take daily anywhere from 1000iu - 10 000iu

If we take a mega dose because of level is too low it's usually 50 000iu for one or two days depending on how far we are from being in the safe zone.
We don't mega dose continually, the coimbra approach is more like that.

2 bananas a day is fine calcium wise, sugar wise it's not as good as just having one.

Hope this all answers what you were wishing to know.
X
Thanks Blueberry,

Well I ended-up mega-dosing for 2 or 3 days + sunshine. My max was probably 60,000iu in one day.

Back down to 10,000iu for rest of summer.

My readings were:

December (no supplementation) 111 nnmol/L
April (around a month on 1000 iu): 147 nnmol/L

... so i'm probably just above 200 nnmol/L after a bit of mega-dosing, maybe even higher.

I think 15,000iu would be safe, as long as calcium kept low, and 3-4 litres of water daily. But summer is coming, so may be 10,000iu instead. Undecided. Just trying to recover from relapse.

10,000-20,000, iu from just 20-30 mins sunshine, means daily dose of 15,000iu cant really be harmful.

Thank you for your advice and help.
Diagnosed June 2004
hi again,

I'm just recovering from a relapse too, although my vitamin D was high, it was caused by stress after a car crash.
I get my vitamin D tested 4 times a year, I get it done free once and pay the other 3 times.

You only need to be between 150-225nmol
the mega doses you took are enough for you to be in the 200's or higher

Without a doctor trained in the coimbra approach you shouldn't go over the top.

If you are getting sun this summer you don't need 10 000iu a day, most people I've noticed on here have 5000iu during summer as a maintaining current level.
I even took less than that during his last summer and my level still rose.
So I'd think again about how much you supplement this summer.

I hope others respond as I'm a little worried you are going to get too high.

We don't become anymore protected over 225nmol
I even took less than that during his last summer and my level still rose


... interesting, thank you.

I thought I read somewhere that dr jelinek said 10,000iu was safe, regardless of sun exposure. I think ill stick to10,000iu min daily, regardless of my level.
Diagnosed June 2004
It's been a while since my last post. Just wanted to share my latest test results after taking high vitamin D dose (70,000IU) for a prolonged period of time, which I have received just today.
I'm taking 70,000 since 2015-07. Tests results:

    25-OH Vitamin D 917.6* 75 – 107 nmol/L
    PTH 7.54* 15 – 65 ng/L
    Ca 24h in urinary 5.67 2.5-7.5 mmol/24h
    Calcium 2.45 2.15–2.50 mmol/L
    Ionized calcium (Ca++) 1.20 1.16 - 1.32
    UREA 3.50 2.78 – 8.07 mmol/L
    Creatine (CREA) 78.16 59 – 104 mcmol/L
    Ferit. 156 30 – 400 mcg/l
    ALAT/GPT 5.54 0.00-41.00 U/L
    ASAT/GOT 37.90 0.00-40.00 U/L
    Alkaline phosphatase ALP 62.40 40.00-129.00 U/L
    Albumin. (ALB) 49.1 35 – 52 g/L


First 3 tests are the most important. Vitamin D levels are very high, PTH is just below 10 (perfect result would 10) and my 24h Ca in urinary in normal range. After more than one year on very high dose (70,000IU ) there are no side-effects and tests confirms that. I feel very good, don't have bad days at all. Well I have (everyone does), but those are not related to MS in any way. Don't have any MS symptoms for sure. I'm curious what will tell MRI, but not sure when my doctor will order to do MRI. Hopefully this year and hopefully the results won't disappoint me ;)
Dx 2015-02 (RRMS), REBIF 2015-03 till 2015-07, OMS 2015-05, High vit D. doses 2015-08
42 posts Page 3 of 5

Who is online

Users browsing this forum: No registered users and 6 guests