Autoimmune patients going into remission with Vit D protocol from brazilian Dr..

[Zapped]

i dont really understand some of your post

Hmm, anything specific, e.g. is something cryptic, or motivation for post? I will clarify if there’s something of particular concern

There are no instant remissions on D3, nobody is claiming that, only VERY FRESHLY diagnosed MS people usually get better within 3-6 months and feel cured, but those sick for longer (if not only official MS and no symptoms) improve slowly and in years of protocol..

I did not get this out of the interview article. My interpretation of successful use of protocol is improvement of quality of life, whether feeling better or reduction of symptoms. I’m not focused on ‘curing my ME/CFS’; arresting its heretofore progression would satisfy, but it’s too early to tell if that is happening (with my current efforts, protocols, et al).

I do believe observational info about 90% (even coimbra says 95%) because, it is based on CRAZY BIG SAMPLE. I mean 4000+ people, 15+ facebook groups (some have 15,000 members). It is just too big.

There is one research when EBM is not needed, and that's when effect size of "experimental" group is much bigger than of untreated samples (or treated w conventional medicine) and i think Coimbra protocol will qualify for this.

State of current chronic diseases treatment in conventional medicine is horrible and i blame EBM as gold standard. It has so much flaws and if you cant fund study, its worthless in the eyes of medicine. I dont know how so called smartest people in world fall in EBM trap.

I otherwise agree with your observations but I’m not sure what ‘BEM’ is acronym for, i.e. as ‘gold standard?' If it’s analogous to double blind placebo controlled trials then I really agree with your comments on sample size and observed results... .

Hey, I would eat 'rock soup with pine cones' if I learned X-number of people considerably improved their ME/CFS with it, irrespective of the underlying science

 

[Zapped]

@Zapped,
are you doing protocol now or you quit it ?

Yes, I think it must be end of 6th week. I’m using 100,000IU D3(50k in am/pm), along with the other supplements Coimba recommends + some of my own.

As a result (?) I’m exercising a little more without PEM but very cautiously. Cognitive seems improved as well as slight energy enhancement. Also, I seem to sleep better but have wierd, lucid dreams.

I’m overdue for lab tests to check related concerns referenced in the protocol, but I intend to get blood profiles this week.

FWIW, I did start Amisulpride, 25mg, about 10 days ago and its affects are as referenced elsewhere - alleviates anhedonia and anxiety; maybe helps with concentration. It may be too early to tell for sure but I definitely feel these affects
(could be long placebo effect - or not...)

 

[Zapped]

@Zapped, are you doing protocol now or you quit it ?

@wanderer
As an afterthought, I assume your progression of efforts, sic trying different rxs
and protocols is pursuant to your following all those 1-2-3's referenced in Dr. Jay
Goldstein's book 'Betrayal by the Brain,' published back in the '90's? (My copy is
not at hand but available if you want to reference other info.)

 

[ankaa]

Dr. Cícero Coimbra has created a protocol that he suggests can put into remission all Autoimmune diseases.

He's a brazilian Neurologist that started his treatment with MS patients and now treats any autoimmune disease with this protocol.

The odds are high: 95% succes with MS, 100% with Crohn's and the list goes.

I've spoken with one of his Drs. and the protocol is basically taking 1000 Vit D for each Kg (it's latter regulated by the PHT which will drop as the Vit D goes up), dropping all dairy (cause Vit D opens the door for calcium) and take Vit B2.
He suggests even for healthy people, 10.000 is the recommended dose and the current recommended dose is way too low.

There are something like 3 or 4 huge Facebook groups with hundreds of testimonials and I've spoken to some patients who defend the protocol with all their strenght and claimed they're in total remission. There are Drs. all over Brazil doing the prtocol, some in Argentina and now some in Europe. There are testimonials in youtube and even a documentary which I'll add in the end of this post.
On the other hand conventional neurologists are still skeptical about it and say it can do more harm than good.

I'm too, still skeptical. But I'm finding each time harder not to believe as it's growing so much and there are so many people who claim to be "cured" by it.

Documentary with Eng and Spa sub):

Dr. Coimbra answers questions (with Ita and Eng sub):

intriguing! what's the problem w dairy/calcium and vitamin D? I thought that they should be taken together, actually.... Milk if fortified w vitamin d, and my solgar vitamin d has calcium, too.

how much b2?

thanks

 

[Zapped]

intriguing! what's the problem w dairy/calcium and vitamin D? I thought that they should be taken together, actually.... Milk if fortified w vitamin d, and my solgar vitamin d has calcium, too.
how much b2?
thanks

Kidney stone and gall bladder formation. Remember too, water by the gallons, which I found impossible (even a liter, daily)!

I did 2 months at average of 100kIU daily, up to 150KIU. I felt better early on and slept better but acclimated quickly. I then added Amisulpride and it helped me noticeably, so I dropped back to 20kIU of D3 maintenance dose daily and eased up on the related D3 supplements - and water, ugh.

 

[Zapped]

intriguing! what's the problem w dairy/calcium and vitamin D? I thought that they should be taken together, actually.... Milk if fortified w vitamin d, and my solgar vitamin d has calcium, too.
how much b2?
thanks

Specifically, I found In research paper ~800mg w/full D3, depending on weight/kg (2.2lbs/kg).
Other sources (science) suggests adding B1 and K2, Choline, Mg. Others have thei own elixirs but whatever you take you
definitely do not want stone formation, so heads up on Ca and and dairy. Water, water, water - go with the flow

 

[Folk]

@ankaa vitamind D is responsible for calcium absorption. If you take a normal dosage you are ok, but in the protocol you'll take like 30 times more than a normal dose, which means to much calcium absorption

 

[ankaa]

@Folk - got it, thanks!

 

[ankaa]

I couldn't agree more with this.

what is EBM?

 

[Remy]

what is EBM?

Evidence based medicine or not accepting any treatment that hasn't been "validated" by a randomized controlled trial.

 

[ankaa]

forgot to mention my dose, i started with 80,000 IU and now raised to 100,000 IU. I have 80kg. In April 2016 i took 200,000 IU in 1 day and next week was amazing for me, but I didnt connect it to vit D, because i was trying other therapies. And then end of April and until mid May, i was researching ME, MS similarities, contacted dr Coimbra (He promised me results!) and many other protocol doctor.. and then jumped in, because I was desperate enough. I'm not healed but I can see ONLY good things from this protocol and so far nothing ever helped like this. *Fingers crossed* it works for ME as it does for MS.

what other supplements are you taking as part of this protocol? How much?

 

[ankaa]

I have ordered some 50,000 IU vitamin D3 capsules from here, and will be trying them soon.

@Hip - which supplements did you take w the Vitamin D3? In what amounts?

I did an amazon search for Vitamin K and found something called Vitamin K2 mk7, whatever that is... Do you know much about vitamin k, and specifically, the diff between K2 and K3?

thx

 

[ankaa]

I took 10,000-20,000 for 2-3 years and if anything it made me feel a bit worse, not better!

I am not sure if it can be dangerous 30 days. I can not advise on such stuff, a dr wouldnt do it, they'd ask you to measure PTH.
Alo, Coimbra usually starts with higher dose for 3 days and then lowers it, like 100,000 IU 3 days and then 60,000 IU..

but i read in 'vitamin D miracle' book that some dr took 1,000,000 IU for 2 weeks daily, without any change in life style, and had no problems.


In a month you might or you might not feel anything. I talk to Lyme friend who said he had drastic improvement with fatigue after 5th month. I think i was lucky to feel immediately, probably cos i was way worse than him in start.

Good luck whatever you decide!

p.s. some Coimbra dr work over Skype.

what other supps do you take w the vitamin d, and in what doses?

B2?
K2?
K3?
Magnesium?

Some where in this thread someone mentions selenium & chromium, too..

other: NO Dairy; LOTS of water

 

[Hip]

@Hip - which supplements did you take w the Vitamin D3? In what amounts?

None. I just tested out a few doses of vitamin D3 50,000 IU, and found it very disturbing to my sleep, so stopped taking it.

I did an amazon search for Vitamin K and found something called Vitamin K2 mk7, whatever that is... Do you know much about vitamin k, and specifically, the diff between K2 and K3?

I used to, when I was reading into it several years ago, but like most things, I forget quickly.

 

[Remy]

specifically, the diff between K2 and K3?

K1 and K2 are the active forms of Vit K. K3 is a synthetic provitamin that requires conversion to be active. Typically it's only added to livestock feed. The supplements we buy are typically K1 or K2.

 

[Danesh]

It's seven months since this thread ended, but I'm posting, because I just saw an integrative MD who worked with Dr. Coimbra for one week, and uses his protocol with autoimmune patients, including ME and Fibro. I have to do labwork for a number of things and a bone scan, to see if I can do it, and how much D he'll have me on. I scanned the messages above, and the doc gave me list for
Omega 3 (720 EPA, 480 DHA) or 1 gr 4X a day;
A blend I think, of the following, taken 4 X day: 100 mg Vit B2 4X, selenium 50mcg, chromium picolinate 50 mcg, Magnesium malate 100 mg, zinc 5 mg, methylcobalamin (B 12) 25 mcg, L-Methlfolate 3 mg.
magnesium chloride 115 mg 4X day (called Ionic Magnesium, by Good State supplements)
MK 7 supplement or food source (A Vit K)
After he checks my levels of all these and calcium, my parahyperthyroid, thyroid and bone density he will decide how much Vit D3 to prescribe. I have to drink at least 2 1/2 liters water daily (I already drink plenty, not a problem). The hard part will be adjusting my diet to cut out calcium... nuts and seeds are a good portion of my protein. No dairy, fine with me. No sodas, also fine with me. He asked if I can walk.... ha! nope.
He said as of last December Dr. C has made some new discoveries or such, had fine tuned his previous protocol, and is having more success now. I don't know what those changes are, perhaps some of you will notice something different from my list. Post a note on here for me, if you want me to report back. It will be several weeks before I really get going, if I 'pass' the tests.

 

[jimbridger]

Any REAL scientific evidence?

 

[Folk]

It's seven months since this thread ended, but I'm posting, because I just saw an integrative MD who worked with Dr. Coimbra for one week, and uses his protocol with autoimmune patients, including ME and Fibro. I have to do labwork for a number of things and a bone scan, to see if I can do it, and how much D he'll have me on. I scanned the messages above, and the doc gave me list for
Omega 3 (720 EPA, 480 DHA) or 1 gr 4X a day;
A blend I think, of the following, taken 4 X day: 100 mg Vit B2 4X, selenium 50mcg, chromium picolinate 50 mcg, Magnesium malate 100 mg, zinc 5 mg, methylcobalamin (B 12) 25 mcg, L-Methlfolate 3 mg.
magnesium chloride 115 mg 4X day (called Ionic Magnesium, by Good State supplements)
MK 7 supplement or food source (A Vit K)
After he checks my levels of all these and calcium, my parahyperthyroid, thyroid and bone density he will decide how much Vit D3 to prescribe. I have to drink at least 2 1/2 liters water daily (I already drink plenty, not a problem). The hard part will be adjusting my diet to cut out calcium... nuts and seeds are a good portion of my protein. No dairy, fine with me. No sodas, also fine with me. He asked if I can walk.... ha! nope.
He said as of last December Dr. C has made some new discoveries or such, had fine tuned his previous protocol, and is having more success now. I don't know what those changes are, perhaps some of you will notice something different from my list. Post a note on here for me, if you want me to report back. It will be several weeks before I really get going, if I 'pass' the tests.

Any news on your treatment @Danesh ?

 

[Zapped]

@Danesh. Earlier in the year I used the same protocol you have outlined. Mine was DIY, w/o specific tests (as I had a general idea of my blood makeup from physical and cardio.)

I then read Dr. Coimbras latest papers at the time. Somewhere I came up with Vitamin D3 prescribed at 1.5 - 2 times your weight in kilograms. For example, I'm 200lbs; this equals ~90 kilos x 2 = 180mg D3, daily. I rounded down to the lower range of 150kg, daily in 2 divided doses. I took this for ~6 months - noticeable affect.

This second effort was pursuant to an earlier conservative attempt of 100mg daily for 3 months; it also had no noticeable affect.

I then stopped after concluding all this D3 intake was close enough to the protocol to otherwise have some affect. The only caveat was the idea that my second trial may have been effective if taken for, say 24 months??? I just didn't want to push it on my own after a non-eventful test run... .

In the end you might want to be prepared for a lengthy effort. There's a group on Facebook who follows progress and I think Coimbra had a website directly. Good luck.

 

[Danesh]

It's seven months since this thread ended, but I'm posting, because I just saw an integrative MD who worked with Dr. Coimbra for one week, and uses his protocol with autoimmune patients, including ME and Fibro. I have to do labwork for a number of things and a bone scan, to see if I can do it, and how much D he'll have me on. I scanned the messages above, and the doc gave me list for
Omega 3 (720 EPA, 480 DHA) or 1 gr 4X a day;
A blend I think, of the following, taken 4 X day: 100 mg Vit B2 4X, selenium 50mcg, chromium picolinate 50 mcg, Magnesium malate 100 mg, zinc 5 mg, methylcobalamin (B 12) 25 mcg, L-Methlfolate 3 mg.
magnesium chloride 115 mg 4X day (called Ionic Magnesium, by Good State supplements)
MK 7 supplement or food source (A Vit K)
After he checks my levels of all these and calcium, my parahyperthyroid, thyroid and bone density he will decide how much Vit D3 to prescribe. I have to drink at least 2 1/2 liters water daily (I already drink plenty, not a problem). The hard part will be adjusting my diet to cut out calcium... nuts and seeds are a good portion of my protein. No dairy, fine with me. No sodas, also fine with me. He asked if I can walk.... ha! nope.
He said as of last December Dr. C has made some new discoveries or such, had fine tuned his previous protocol, and is having more success now. I don't know what those changes are, perhaps some of you will notice something different from my list. Post a note on here for me, if you want me to report back. It will be several weeks before I really get going, if I 'pass' the tests.