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Remission of autoimmune disease after massive vit-d dose
- Thread starter tiredowl
- Start date
Don't know so much of MS, but with a CVD condition - which are responsible for most deaths and therefore most researched so far - I got prescribed a statin and baby aspirin only. Upon searching the literature I found the number needed to treat with CVD for just 1 person not to die of earlier 5-year mortality is 82! For aspirin that number is 333! Long term we still don't have accurate NNT (number needed to tread), regardless that these pharmaceuticals usually are prescribed for live.
Therefore please educate me of any better NNT with hard endpoints in MS, if you're aware of.
If I would be Coimbra I would even take greater care in preventing his protocol getting in the wrong hands. Maybe that's why he didn't answered your questions.
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I am all in favor of trying new and unconventional treatment options (doing it myself), but I would caution against taking such high doses of Vitamin D.
First, there are a lot of folks in this forum who report that even normal doses of Vitamin D makes them worse. It did make me worse on several occasions, even in doses as low as 1000 IU/d. I now stopped all VD, and restrict my sun exposure and try to keep my VD between 25-30, which seems the level above which I get worse.
Second, with such high doses, with very high doses hypercalcemia is a real concern. Once it occurs, it is persisting for weeks and is very difficult to treat. Too high calcium levels affect the heart, and the heart is already in bad shape in many CFS patients. Hypercalcuria and kidney stones are also a concern.
Third, the "natural" highest possible level of Vitamin D in the body is no more than 50-60 ng/ml. Given all-day sun exposures, the body would itself be able to produce megadoses of Vitamin D, but above a production of 10,000-20,000 IU per day, any additionally produced Vitamin D is degraded into an inactive metabolite. So the body "doesn't want" more Vitamin D than that.
Another mechanism by which the body reduces Vitamin D production is the darkening of the skin, which leads to lower UV-ray penetration, and thus lower production of Vitamin D.
It seems obvious, that the body is protecting itself from unphysiological megadoses of Vitamin D, and probably for good reason. That many people in this thread got worse with megadoses is therefore not surprising.
It's important to try new things, but as others have pointed out, it is probably important to do it under close supervision and in a cautious way. I don't think it would be good to start with injecting 100,000s of IUs.
First, there are a lot of folks in this forum who report that even normal doses of Vitamin D makes them worse. It did make me worse on several occasions, even in doses as low as 1000 IU/d. I now stopped all VD, and restrict my sun exposure and try to keep my VD between 25-30, which seems the level above which I get worse.
Second, with such high doses, with very high doses hypercalcemia is a real concern. Once it occurs, it is persisting for weeks and is very difficult to treat. Too high calcium levels affect the heart, and the heart is already in bad shape in many CFS patients. Hypercalcuria and kidney stones are also a concern.
Third, the "natural" highest possible level of Vitamin D in the body is no more than 50-60 ng/ml. Given all-day sun exposures, the body would itself be able to produce megadoses of Vitamin D, but above a production of 10,000-20,000 IU per day, any additionally produced Vitamin D is degraded into an inactive metabolite. So the body "doesn't want" more Vitamin D than that.
Another mechanism by which the body reduces Vitamin D production is the darkening of the skin, which leads to lower UV-ray penetration, and thus lower production of Vitamin D.
It seems obvious, that the body is protecting itself from unphysiological megadoses of Vitamin D, and probably for good reason. That many people in this thread got worse with megadoses is therefore not surprising.
It's important to try new things, but as others have pointed out, it is probably important to do it under close supervision and in a cautious way. I don't think it would be good to start with injecting 100,000s of IUs.
Totally agree.
However, one study found that up to 200 ng/ml 25(OH)D in serum - though technically hypervitaminosis - still produced no adverse effects:
Always start low dose and increase gradually to catch an always possible reverse reaction - due to preconditions and bio-chemical individuality - early on. When they still can be easily corrected. Taking anything above 5000 IU longer terms (months) without testing serum levels is absolutely not recommended.
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I agree and it's also worth noting that Vitamin D has a long half life (several weeks), so if you take too much Vitamin D or if you don't tolerate it individually, that negative state will persist for quite a while.
I take a daily D3 supplement by "Doctor's Best" that is 5000 IU's of D3 in an olive oil base.
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.
I have Celiac in addition to ME/CFS and fibro. So I really expected the docs to blame gut damage from the Celiac for the absorption problems, but my rhuematologist didn't at all. This may be because Celiac is also not well understood except by some GIs, but that's another story.
Also been evaluated for MG and lupus. At least the docs realized something was wrong! I have a close friend who has Ulcerative colitis (also autoimmune) that had a D level so low when she was admitted to the hospital that they told her it was approximately 1. She is also on ergocalciferol now. (it's 50000 units and its only 1 small gelcap, once a week). I've read articles in the past that pointed toward D deficiencies in autoimmune disease in general, but its been a long time. There are some that think D2 is inferior to D3. In my situation, if D2 raises my serum level and D3 doesn't I think that is better than nothing. It also beats injections. I don't often drive anymore and the hubs works to keep us in food and shelter, so it's just not feasible to get to the doc every time we turn around. With all you have on your plate, I know you understand that. Hope the pooch is doing better, BTW.It's interesting that your B12 levels are also low. Mine were also at first, but I've been able to keep that near the lower end of the normal range with sublingual B12. With more buzz about autoimmunity starting in the gut, maybe a researcher will find us a breakthrough treatment so we can all feel better.
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pibee
Senior Member
- Messages
- 304
I have a very close friend who was 3 years on CP for MS. He is so so much worse, unrecognizable by that protocol, I watched it for 3 years, seen all the shit unimaginable that the high dose vit D made from his brain, and experienced half of those same symptoms.
He was briliant lawyer despite his MS, and within weeks on CP his brain was fried and cant even Google things or order supplements for himself. Because we were tricked to believe it will go away, from Coimbra fanatics, he didnt stop it on time.
So I personally have a person I care A LOT about that is visibly ruined by the protocol which cant be reversed as MS damage is permanent at some point.
I also have some people I know for 4 years that were damaged too. Well, most I talked to, ended up badly.
He didnt answer my questions because nobody in the world knows the answer to those questions because there aren't any studies.
Like specific questions:
How many people with ME have been treated with this protocol?
How many with Lyme?
What will so high dose do to already Th2 dominant immune state?
What happens after 10 years of this high doses (he cant know, nobody takes that for 10 yrs at so high doses. Only 30,000-40,000 dose just a few people)
He didn't answer the same questions to one of his Coimbra trained neurologists when he asked him. Because he is fanatic who thinks you can treat people without even knowing what you are treating (as we dont know what is ME/CFS!) or Lyme (because, of course, he claims to cure Lyme too), or autism (yes, he even claims that now ).
He was briliant lawyer despite his MS, and within weeks on CP his brain was fried and cant even Google things or order supplements for himself. Because we were tricked to believe it will go away, from Coimbra fanatics, he didnt stop it on time.
So I personally have a person I care A LOT about that is visibly ruined by the protocol which cant be reversed as MS damage is permanent at some point.
I also have some people I know for 4 years that were damaged too. Well, most I talked to, ended up badly.
He didnt answer my questions because nobody in the world knows the answer to those questions because there aren't any studies.
Like specific questions:
How many people with ME have been treated with this protocol?
How many with Lyme?
What will so high dose do to already Th2 dominant immune state?
What happens after 10 years of this high doses (he cant know, nobody takes that for 10 yrs at so high doses. Only 30,000-40,000 dose just a few people)
He didn't answer the same questions to one of his Coimbra trained neurologists when he asked him. Because he is fanatic who thinks you can treat people without even knowing what you are treating (as we dont know what is ME/CFS!) or Lyme (because, of course, he claims to cure Lyme too), or autism (yes, he even claims that now
).
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Because I know such high doses have never been tested I did repeatedly advise in this thread not to do it without medical supervision of all bodily system effected by such massive doses. If at all. I probably wouldn't.
And better start with lowest doses gradually increasing. This is rather experimental science while taking the absolutely necessary precautions. Not anti anything.
And better start with lowest doses gradually increasing. This is rather experimental science while taking the absolutely necessary precautions. Not anti anything.
I only asked about more information from you if you're been under an MDs supervision. Read my posts again.
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pibee
Senior Member
- Messages
- 304
I am not avoiding any answer. I thought it's self-explanatory that when I say I was under supervision of Coimbra trained physician (which means the guy went to Brasil and did Coimbra training and is back with a 'licence'), that it is clear I tested everything that's needed like PTH, Calcium, 24hr urine calcium.
My PTH was still a bit high and I felt best when it was higher, not as it was going down.
I think only reason for feeling better in start (while i ignored obvious cognitive worsenings because i believed promises) has not much to do with autoimmunity, but because of MCAS effect, unfortunately it caused unexpected reactions that nobody can explain, as I already said. And since I hear this soo sooo often from others who tried CP, my conclusion is that those doses aren't safe.
Well that's what I saw too.
MS close friend was also under supervision of Coimbra trained physician, he in fact, went to 2 of them. It doesnt matter.
The protocol simply doesn't work.
One can try, but be alarmed at the risk it can cause. For me cause permanent ME progression, severe progression. Well, 'permanent' only because it still lasts.
1 year on CP was worst year of my life. I kept doing it believing the theory and massive propaganda on facebook, by people who arent aware of the damage they're doing and they simply want to believe it.
My PTH was still a bit high and I felt best when it was higher, not as it was going down.
I think only reason for feeling better in start (while i ignored obvious cognitive worsenings because i believed promises) has not much to do with autoimmunity, but because of MCAS effect, unfortunately it caused unexpected reactions that nobody can explain, as I already said. And since I hear this soo sooo often from others who tried CP, my conclusion is that those doses aren't safe.
Well that's what I saw too.
MS close friend was also under supervision of Coimbra trained physician, he in fact, went to 2 of them. It doesnt matter.
The protocol simply doesn't work.
One can try, but be alarmed at the risk it can cause. For me cause permanent ME progression, severe progression. Well, 'permanent' only because it still lasts.
1 year on CP was worst year of my life. I kept doing it believing the theory and massive propaganda on facebook, by people who arent aware of the damage they're doing and they simply want to believe it.
Gingergrrl
Senior Member
- Messages
- 16,171
I agree and it is better to raise your Vit D level in whatever way you can and it's better than nothing!
She is, thank you!
My B-12 was finally normal the last time it was tested and I did not need to get the injections and just take sublingual. I take Hydroxy B-12 & Folinic Acid b/c I don't tolerate the Methyl forms.
That would be amazing! Maybe some day...