Has anyone with SPMS or PPMS given it a try?

[PJM26]

I've heard some second hand accounts (from Brazil, seemingly) of people with "more aggressive MS (did not explicitly state SP or PP)" using this program.

So what I'm wondering is whether you (persons with SPMS or PPMS) have personally used the protocol.

Or if you have direct contact with anyone as described above.

If so - your thoughts?

No hearsay please!

Thanks

[PointsNorth]

Welcome PJ, I have SPMS

I have been on the protocol since September 2014. Needless to say but I had difficultly getting any information at that time. With the help of an M.D. with MS I waded into the water. I started using a dosage based on 1000iu per kg of weight. Whenever I increased my dosage I got some positive effects but I reverted back to baseline with time. Recently I have increased my dosage to two 165Kiu. Within days I got improvement in bladder function, possibly some other minor improvements. Luckily this time improvements have lasted. I guess it was a matter of reaching the right dosage! Hopefully I'm on the right track.

I firmly believe you must follow the protocol to the letter which means you must have a doctor ordering blood tests and keeping Watch over your shoulder. If you follow the protocol you should expect to be safe. You'll notice that I have posted the protocol that I am on personally. I am on a B 12 protocol as well as experimenting with low-dose immunotherapy which I have had some success with.

Best of luck, PN

[Columbo]

Was it hard to find a doctor willing to support you in this?

[PointsNorth]

List of Doctors Worldwide : Coimbra High-Dose Vitamin D Protocol - This Is MS Multiple Sclerosis Community: Knowledge & Support

http://www.thisisms.com/forum/coimbra-h ... 27159.html

Or preferably enlist your own doctor or naturopath. You can print stuff on this forum and take them to your doc or better yet simply provide them with a link to it.

[HUD45]

Hi pjm........I am following the Coimbra protocol for 2 months now. I live in a small town and basically enlisted my family physician to follow me through the tests that are necessary. I had to become my own expert and educate my Doc. on the Hi D protocol. There are many videos, testimonials and excellent books recommended on this TIMS site and many others.

Good luck and don't hesitate to ask for thoughts.....HUD

PS I have PPMS and noticed bladder improvement in 2 weeks No other improvement or side effects so far......

[PJM26]

Updates, anyone?

[CureOrBust]

I have SPMS, and have been on 1000IU / kg / day for a number of months with no side effects or improvements. I have had PSH test which show that the dose is slightly too high, and have accordingly lowered it. I do not see any of the benefits others are describing. I was already on 4000IU / day before I started the higher doses.

[Lionel]

I have SPMS, and have been on 1000IU / kg / day for a number of months with no side effects or improvements. I have had PSH test which show that the dose is slightly too high, and have accordingly lowered it. I do not see any of the benefits others are describing. I was already on 4000IU / day before I started the higher doses.

10,000IU isn't enough vitamin D3 for people with autoimmune diseases (second the Coimbra Protocol).

My family takes 10k UI everyday to get enough vitamin D3. They recommend 10,000 IU only for people that don't have autoimmune diseases.

I have MS and I take 80,000IU every day. Because of a gene resistance we need more vitamin D3.
''This resistance seems to underlie the predisposition to (and maintenance of) autoimmune aggression through the Th17 program of activities. As the protocol aims at regulating the immune system, it has been similarly effective in treating several other autoimmune diseases''.

You need to take enough vitamin D3 till you achieve the minimum range of PTH. Afterwards, it is necessary to continue with this dose for more than 6 months to see good results.

Everyone have a right dose. Your PTH ranges will tell what is your right dose.

[CureOrBust]

I do not understand your post/point. You appear to have misread my post.

1000IU / kg / day

10,000IU isn't enough vitamin D3 for people with autoimmune diseases (second the Coimbra Protocol).

That is 10,000IU PER KILOGRAM. So at 77kg it was 770,000IU / day (I actually rounded up to 80kg so was also taking 800,000IU/day.

You need to take enough vitamin D3 till you achieve the minimum range of PTH. Afterwards, it is necessary to continue with this dose for more than 6 months to see good results.

I was on that dose well over 6 months (more like 12 months)

Everyone have a right dose. Your PTH ranges will tell what is your right dose.

As I also said, I had blood work done and my PSH levels were below the reference range, so it tells me the dose was high enough for me.

Because of the above, I think i can justly say that the protocol does not work for me, which is what this thread is about.

[Lionel]

I do not understand your post/point. You appear to have misread my post.

1000IU / kg / day

10,000IU isn't enough vitamin D3 for people with autoimmune diseases (second the Coimbra Protocol).

That is 10,000IU PER KILOGRAM. So at 77kg it was 770,000IU / day (I actually rounded up to 80kg so was also taking 800,000IU/day.

You need to take enough vitamin D3 till you achieve the minimum range of PTH. Afterwards, it is necessary to continue with this dose for more than 6 months to see good results.

I was on that dose well over 6 months (more like 12 months)

Everyone have a right dose. Your PTH ranges will tell what is your right dose.

As I also said, I had blood work done and my PSH levels were below the reference range, so it tells me the dose was high enough for me.

Because of the above, I think i can justly say that the protocol does not work for me, which is what this thread is about.

Ok, now I see that you were following the 1,000 IU per kilogram. I misread that information.

Well, when you achieve your right dose measured by your PTH range for some people it takes more than 6 months for the results appear. Sometimes 2 years to see results, specially when patients have MS for a very long time.

Maybe you need to continue it for more time to see some results... or maybe you need to increase your dose. But only a certified doctor can assure that.

I combined Coimbra Protocol with LDN and I'm getting better faster... I'm taking 4.5mg of LDN every day + 3g of Melatonin.

[CureOrBust]

or, maybe, it simply does not work for me.

[Lionel]

or, maybe, it simply does not work for me.

Yes, It also can be true. Maybe it didn't work for you.

But you are following it for a short period of time.

Second my doctor only 30% of people have good results following the protocol for only 6 months (with the right dose)... Some people take 6 months only to discover the right dose for them.

So, maybe it's necessary more time for vitamin D produce good results.

[AntonioBR]

Cure... like Lionel said,

6 months is a short period to know 100% if it really doesn't work for you.

Coimbra tells about 2 years.

2 years taking the dose that makes your PTH ranges at the minimum level.

Even following it for nearly 9 months my brother still does not achieved his right dose. Although he has a problem of big high resistance with vitamin D3.

[CureOrBust]

I have been on a Coimbra dose for 12 month's and I still have had relapses.

[Lionel]

I have been on a Coimbra dose for 12 month's and I still have had relapses.

Are you following the protocol by yourself?