Remission of autoimmune disease after massive vit-d dose

[tiredowl]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4734680/

Basically, this study shows a woman who had refractory myasthenia gravis and was put into remission by high dose vitamin-d.
I wonder, since ME potentially could turn out to be autoimmune as well, could this be tried? Anyone tried this?

 

[PatJ]

I tried 100,000IU per day (orally) for a couple of weeks but I only felt worse. My light and sound sensitivities worsened and I had even less energy.

 

[Gingergrrl]

Basically, this study shows a woman who had refractory myasthenia gravis and was put into remission by high dose vitamin-d.

Thanks for posting that study @tiredowl and it is very interesting. Shortness of breath and muscle weakness were two of my worst symptoms (although I am negative on all blood tests for MG autoantibodies). I skimmed through your link and was confused, did the patient take the high dose Vit D as an injection or pill?

I am currently taking 5000 IU's per day (b/c my Vit D runs very low on blood tests, even before I got sick). When it really gets low, my doctors have me increase to 10,000 IU's (which I tolerate with no problems) and this allows me to maintain a blood level over 30. I wish I could get my blood level to 60 or higher but would have to take an even higher dose. But maybe it would be worth it, especially if it can (maybe?) help with autoimmunity, too?

I tried 100,000IU per day (orally) for a couple of weeks but I only felt worse. My light and sound sensitivities worsened and I had even less energy.

I remember you mentioning this @PatJ and was curious, did you take an injection or was the 100,000 IU's in pill form? That must have been a lot of pills to swallow per day!

 

[PatJ]

That must have been a lot of pills to swallow per day!

I took the easy route and used a liquid that contained vitamin D in oil. It was 4000IU per drop so it was easy to take a lot.

 

[pamojja]

Suspect this case-study to having been on the protocol of CICERO GALLI COIMBRA, MD, Ph.D., usually for MS:
http://www.vitamindandms.org/researchers/coimbra/
- especially for the necessary precautions for anyone seriously contemplating this protocol.

 

[Gingergrrl]

I took the easy route and used a liquid that contained vitamin D in oil. It was 4000IU per drop so it was easy to take a lot.

Thanks and I forgot about the Vit D liquids (even though I took one myself in 2014).

 

[Gingergrrl]

- especially for the necessary precautions for anyone seriously contemplating this protocol.

I agree it sounds potentially dangerous and it is not something that I would try, it is just interesting to me. If I did anything right now, I would just increase my 5K IU's back to 10K IU's (which is that I think my doctors want me to do anyway to maintain a blood level over 30). I need to do blood work for my thyroid/Endo which always includes Vit D level but just have not had a chance to go do it yet.

 

[rel8ted]

I am currently taking 5000 IU's per day (b/c my Vit D runs very low on blood tests, even before I got sick). When it really gets low, my doctors have me increase to 10,000 IU's (which I tolerate with no problems) and this allows me to maintain a blood level over 30. I wish I could get my blood level to 60 or higher but would have to take an even higher dose. But maybe it would be worth it, especially if it can (maybe?) help with autoimmunity, too?

Just curious if you are taking a regular D3 supplement or which form of D you are using. I had Much, much,much trouble getting my D levels over 20 until my rheumatologist finally switched me to D2 (ergocalciferol). I believe she said it was a more bioavailable form (brain fog - can't science today). Last labs showed a whopping 45, which was fantastic since my lowest tested level was 7. When I pressed her about the difficulty raising and maintaing the D level, she commented that it is not uncommon in people with autoimmune issues. She said she now regularly puts those who can't get their levels up on ergocalciferol.

 

[Gingergrrl]

Just curious if you are taking a regular D3 supplement or which form of D you are using.

I take a daily D3 supplement by "Doctor's Best" that is 5000 IU's of D3 in an olive oil base.

I had Much, much,much trouble getting my D levels over 20 until my rheumatologist finally switched me to D2 (ergocalciferol). I believe she said it was a more bioavailable form (brain fog - can't science today). Last labs showed a whopping 45, which was fantastic since my lowest tested level was 7.

That is really interesting and I had been told that D3 was the better form (although I now have no idea re: who told me that)! My lowest level on a test was "8" and then it went undetectable (this was around 2013 or maybe even earlier). With daily supplements, I can maintain a level around 30. In general, I cannot maintain normal levels of anything without supplementing and my B-12 went so low I became anemic and my Potassium also got very low (both are normal now with supplementing).

When I pressed her about the difficulty raising and maintaing the D level, she commented that it is not uncommon in people with autoimmune issues.

I asked my doctor why I cannot maintain normal levels of anything on my own and he admitted that he did not have a definite answer (which I appreciated) but he also felt it related to autoimmunity in my case.

Can you remind me, do you have an autoimmune disease or specific autoantibodies? I think we have talked about doggie issues before but can't remember if we've talked about autoimmunity .

 

[pamojja]

She said she now regularly puts those who can't get their levels up on ergocalciferol.

Actually remember Dr. Davis warning about D2 supplements, since in his clinical experience it wouldn't raise serum 25(OH)D consistently (Uses it against CVD). Also LPI mentions differences:

http://lpi.oregonstate.edu/mic/vitamins/vitamin-D#supplements
Supplements
Most vitamin D supplements available without a prescription contain cholecalciferol (vitamin D3). Multivitamin supplements generally provide 400 IU-1,000 IU (10 μg-25 μg) of vitamin D2 or vitamin D3. Single-ingredient vitamin D supplements may provide 400 to 50,000 IU of vitamin D3, but 400 IU is the most commonly available dose (66). A number of calcium supplements may also provide vitamin D. A meta-analysis of randomized controlled trials suggested that bolus doses of vitamin D2 (ergocalciferol) may not always be as effective as vitamin D3 in raising serum 25-hydroxyvitamin D concentrations, yet no difference in efficacy was found with daily supplementation with vitamin D2 or vitamin D3 (320). Nonetheless, a 25-week, randomized, double-blind, placebo-controlled trial found daily supplementation with 1,000 IU of vitamin D3 initiated at the end of summer to be more efficacious than vitamin D2 in maintaining summertime concentrations of 25-hydroxyvitamin D during fall and winter months (321).

Here is my past log of serum levels and intake of vitamin D3 in micrograms:

year: ng/ml - mcg

2009:       -   50
2010:   63  -  160
2011:   43  -  140
2012:   62  -  300
2013:   84  -  200
2014:   50  -  190
2015:   78  -  210
2016:   72  -  170
2017:  101  -  220
2018:   93  -  170

Important to add in this respect: In 2012 with the highest intake had the whole year a terrible chronic bronchitis. Since 2013 - first to get rid of the bronchitis - I took my whole 6 weeks yearly vacation on a South-Indian beach, always in the deepest Winter from middle of Jan. till the of end Feb.. Each day during 10:00-12:00 AM and 3:30-5:30 PM - 4 hours total - whole body sun-exposure daily (minus maybe about 40 minutes swimming in the ocean).


PS: multiply by 40 to get IUs.

 

[tiredowl]

I might try this eventually, if nothing else works. I have had pretty low vit-d, however it's normal range now.
I will definitely supplement with magnesium as well, since vit-d lowers mag.

 

[Gingergrrl]

I might try this eventually, if nothing else works. I have had pretty low vit-d, however it's normal range now. I will definitely supplement with magnesium as well, since vit-d lowers mag.

Please keep us posted if you do try it. Do you have symptoms similar to MG like the woman in the study (muscle weakness and shortness of breath)?

 

[pibee]

The (in)famous Coimbra protocol with mega doses of vitamin D. He claims the cure/remission rate is 95% for neuro and 100% for other autoimmune diseases.
I tried it for a year, (the dose was up to 120,000 IU per day), at first I felt extremely better (typical steroids effect??), but I think it made me more vulnerable to viruses, which caused problems. I got even worse since I quit it.
If the dose wasn't so high maybe would end up better.

Also I suspect that in fact it made me better 'only' because vit D is also mast cells stabilizer, and anti-inflammatory, it definitely didnt address the cause of my disease because it would not make me worse in the end.

I have been following /and met personally/ many people who did this high dose protocol, most of them have MS, but some had other diseases too, and the claims of so high success are absolutely not supported.
It works for maybe 30% of pwMS (given the nature of that disease is also often relapsing-remitting it's hard to tell and even 30% could be overestimation)


Recently some girl on FB group mentioned she has MS and ME, and her ME is not good on protocol, while MS is good .(she's on high doses for 5 yrs). I was wondering if protocol actually is making her ME worse.


TLDR: high dose vit D is quackery

 

[pamojja]

I tried it for a year, (the dose was up to 120,000 IU per day), at first I felt extremely better (typical steroids effect??), but I think it made me more vulnerable to viruses, which caused problems. I got even worse since I quit it.
If the dose wasn't so high maybe would end up better.

What were the 25(OH)D serum levels reached with that dose?
Did you also test 24 hrs urine for calcium and serum PTH?

In my case since 8 years after starting with Vitamin D3 I got very pain-full muscle-cramps. And despite my intake of up to 2.4 g oral elemental Mg, less severe and much shorter cramps still occurred on a weekly basis. Only end of last year found a GP, who gives inexpensive Magnesium-sulfate IVs. And after 5 of them I've been totally free of cramps for more than 2 months, till last week. Therefore will get an other tomorrow.

Extreme high dose of nutrients may increase the need of other nutrients intertwined in the same metabolic pathways. And may push a subclinical deficiency very fast to a very severe. If not cached early as in my case, but with only 8.000 IUs in average.

 

[pamojja]

It works for maybe 30% of pwMS (given the nature of that disease is also often relapsing-remitting it's hard to tell and even 30% could be overestimation)

TLDR: high dose vit D is quackery

Even 15% would still be fabulous. Though I hope nobody attempts this dangerous high doses without a knowledgeable physician on board. That would be the quackery.

 

[iwillwin1day]

I tried 1,20,000 iu for 15 days and I was looking and feeling toxic...
The colour of my skin tourned orange and I suffered from very severe pneumonia after the 15 days experiment was over.

 

[pamojja]

I tried 1,20,000 iu for 15 days and I was looking and feeling toxic...

No doubt. Never take such high doses not under the care of a physician, or having self-educated yourself to know better. Never take Vitamin D, lets say above 5000 IU/d without testing serum levels and taking cofactors (ie. Magnesium, Zinc, Vitamin K, Boron, Vitamin A).

 

[brenda]

I have always responded badly to Vitamin D3 so use a lamp for that purpose. Last week I had my levels measured and they are 72.

 

[pamojja]

Last week I had my levels measured and they are 72.

Tested in ng/ml (30 - 100 normal range with my lab) or nmol/L (multiply by 2,49)? If tested in nmol/l you would still be deficient according to my lab's normal range.

 

[pibee]

Even 15% would still be fabulous. Though I hope nobody attempts this dangerous high doses without a knowledgeable physician on board. That would be the quackery.

why would 15% be fabulous? if placebo often times works better.
Most DMD for MS have better effect than 15% so in this case I'd pick DMD, at least has some research so I am informed of the possible side effects.


There are no knowledgeable physicians regarding high dose protocol, because there is no research. We have no clue how those doses affect the body's systems, like immune system. I met many of those physicians, they couldnt answer any of my questions. I spoke to Coimbra, he also didnt answer any of my questions, except stating that CFS is autoimmune and vit D is cure. And dismissing all other questions that go against it.

Let me just remind you that education for 'Coimbra protocol doctor' lasts 5 days, and the instructions for physicians are about 15 pages long. That's all they really need to know about high doses.