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

Hip

Well-Known Member
Looks like you can buy vitamin D3 in 50,000 IU capsules:

https://www.amazon.com/Vitamin-Extreme-ProHealth-capsules-Supplement/dp/B002V0LHI6
https://shop.goaskjack.com/index.php?l=product_detail&p=211
https://www.amazon.co.uk/HealthAid-Vitamin-D3-50000iu-Capsules/dp/B00EXQ0ABQ



The questionable issue about this vitamin D treatment is that MS is a disease known for its spontaneous remissions, so this is not the best autoimmune disease to test this treatment on, as in any group of MS patients, you will get a percentage of spontaneous remissions, and patients spontaneously improving.

If this treatment were effective for other autoimmune diseases that were not known for spontaneous remissions, like type 1 diabetes, that would be more convincing.


It also seems dubious that Dr Coimbra says in the video that he will not perform a double-blind trial for his treatment, saying that it is unethical not to treat the control group of patients; he says he does not want to withhold this vitamin D treatment from any patient. But of course without a double-blind trial, the wider medical community will not pay much attention to his work, and as a result, millions of patients will not get his treatment.
 

Theodore

New Member
The questionable issue about this vitamin D treatment is that MS is a disease known for its spontaneous remissions, so this is not the best autoimmune disease to test this treatment on, as in any group of MS patients, you will get a percentage of spontaneous remissions, and patients spontaneously improving.

If this treatment were effective for other autoimmune diseases that were not known for spontaneous remissions, like type 1 diabetes, that would be more convincing.


It also seems dubious that Dr Coimbra says in the video that he will not perform a double-blind trial for his treatment, saying that it is unethical not to treat the control group of patients; he says he does not want to withhold this vitamin D treatment from any patient. But of course without a double-blind trial, the wider medical community will not pay much attention to his work, and as a result, millions of patients will not get his treatment.

MS is indeed known for its spontaneous remisions but what about the brain? Is the brain of MS patients also in remission?
 

Hip

Well-Known Member
MS is indeed known for its spontaneous remisions but what about the brain? Is the brain of MS patients also in remission?

According to this article, MS lesions in the central nervous system can clear up, though I am not sure how common this is.

Has Dr Coimbra found that the lesions in MS clear up with his high dose vitamin D treatment?

This article says that vitamin D can promote nerve myelin repair (remyelination) in multiple sclerosis, by stimulating the oligodendrocyte progenitor cells which create myelin-forming oligodendrocytes, which would help clear up the lesions (in MS, the lesions are the result of myelin damage).


If high dose vitamin D is helping to remyelinate the nerves in Dr Coimbra's multiple sclerosis patients, that mechanism of healing is different (and possibility additional) to the proposed anti-autoimmune mechanism of vitamin D.
 
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Theodore

New Member
According to this article, MS lesions in the central nervous system can clear up, though I am not sure how common this is.

Has Dr Coimbra found that the lesions in MS clear up with his high dose vitamin D treatment?

This article says that vitamin D can promote nerve myelin repair (remyelination) in multiple sclerosis, which would help clear up the lesions (in MS, the lesions are the result of myelin damage).


If high dose vitamin D is helping to remyelinate the nerves in Dr Coimbra's multiple sclerosis patients, that mechanism of healing is different (and possibility additional) to the proposed anti-autoimmune mechanism of vitamin D.

I only found this thread :

http://www.thisisms.com/forum/coimbra-high-dose-vitamin-d-protocol-f57/topic27182.html
 
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Folk

Well-Known Member
Has Dr Coimbra found that the lesions in MS clear up with his high dose vitamin D treatment?
Yes.

And Multiple Sclerosis was the disease that the protocol became famous for. But in the groups you see all kind of auto imune diseases like Psoriasis, Lupus etc.

Still, I'm not claiming he is right. But there are lots of patients going in remission on those groups.
 

Justin

Active Member
One other point Whitney Defoe had reallt skewed B2 if I can recall. Maybe this is a piece to the puzzle....

Maybe some outreach to the Brazilian team is needed. A protocol and list of tests to be done to determine patient that would be helped.
 

wanderer

Active Member
Hello friends!

I have ME/CFS and I'm on Coimbra protocol for 3 months. I had improvements from day 1. That was shocking.

on average about 50%. I started by spending 90% in bed, to now often times feeling good enough to do sports. My cognitive problems improved even more, i had big apraxia, and now its 60% better. I couldnt comb my hair, take a shower, it was very hard for me. i am 30 and my onset was gradual since early childhood. I have lyme

on best days i feel 70-80% better, on worst only 30% better, on average 50%.

Since 3 months is very short time, this is very promising.

I know many people who are great on vitamin D for MS, and it usually takes much more than 6 months to feel remisison.

My ME was quite strong, I am not an easy case.

early June i went to my dr in taxi, flu like feeling, fatigue, fibro, cognitive retard.
early July i went on a bike (5km), no flu, no fibro, much better cognitively

now my energy is not at how it was at best /July/ but i'm patient as i know from watching many MS ppl i know about osclations first 1yr , but its stil much better than at worst, and some days i do sports, bike ride, roller skates. also i take antibiotics for lyme so i am probably flaring a lot more than if i do only vitamin D

My cognitive sympoms improved much from july, even further.

No more flu like feelng, or fibro (90% gone)


I dont rely only on vitamin D, i'm treating lyme, plan to treat mold and started to chelate heavy metals few days ago, but nothing helped (tons of antibioticss) before vitamin D. So i'm sure it is behind my big jump in energy and cognition


I'll send honest report in few more months

I do believe in this treatmen for ME based on extreme similarity with MS it has (fatigue is 1st to improve for many MS patients) but lets wait results!!

if anyone wants to try this, find a doctor for Coimbra protocol. If anyone has questions i'm "pi bee" on fb, i post much on Lyme groups!
 

wanderer

Active Member
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.
 

wanderer

Active Member
I met a guy who has MS and was trying to help him and then we both found out about protocol Coimbra, because people in my country found out in early 2015, most are from July 2015 on protocol (MS ppl), a few of them longer. I'm from Croatia.
I was concentrating on Lyme, and only 4+ months ago started to read on ME, so i bumped into comparisons of ME vs MS, and it was convincing enough to try protocol
 

wanderer

Active Member
forgot to say i never had periods of remision or improvements in 30 years, i was just slowly getting worse. So this how i'm now (on my best days) is best i've felt in life, or maybe as when was 12 yrs old, i had similar condition to now. I still crash sometimes but not as much as before, my lowest point (least functional) isi far above what it was without vit D .
 
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Hip

Well-Known Member
on best days i feel 70-80% better, on worst only 30% better, on average 50%.

Very interesting, @wanderer, thanks for posting your experiences with high dose vitamin D to treat ME/CFS.

When people report improvements from taking a medication or treatment, I always like to quantify those improvements as precisely as possible, because this helps gauge the efficacy of the treatment.

I tend to find the ME/CFS scale of mild, moderate and severe the most useful and simple way of describing ME/CFS. Descriptions of these three levels of severity of ME/CFS are given in this post here.

If any treatment gets you up one level of this scale (eg, from severe to moderate, from moderate to mild, or from mild to cured), then I tend to think of that as a major improvement in ME/CFS.

What would you say your level of ME/CFS was before starting high dose vitamin D, and what level of ME/CFS did you go up to after 3 months on vitamin D?
 

wanderer

Active Member
I was a mix of your 3 levels, as explained, my cognitive condition was so bad that I couldnt comb my hair. I attended school but it was only 3-4 hrs a day and the rest was in bed. It was weird mix of fatigue, when i managed to move my body for action, I'd be okay, but i'd always end up in bed. I didnt do ANY house chores, I was often leaning on my elbow while standing or doing things with 1 arm. Average daily walk would be 100 m, and 800 meters would be very draining. I couldnt work full time, but i cant claim if I absolutely have no choice - like i'll die from hunger etc - that i couldnt drag myself to work , sitt there, and drag myself back. All rest was in bed.
so last 11 yrs since finishing HS i went to school 5 or so, i didnt have issues with studying, learning.. so most of my studying was from bed.


now I do all house chores, still not easily but more and more easy. 3-4 hours a week I do mild sport, and I often walk 1hr.

Most improvement is in energy and cognitive (apraxia) functions. I'm still not sure how will that copy paste to work ability.

I start grad school in 1 month, we will see.
 
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wanderer

Active Member
So energy wise I was mild (but wouldnt call that mild!!!), but cognitively i was severe form with apraxia. Now energy wise i'm still mild, fatigue improved but didnt disappear, but cognitively ii'm def mild now. I take care of myself, my hygiene, house, i didnt do it because of problems with apraxia...... i organize more easily. Fatigue wise i'm close to full functionality but i could manage school before too, but then 15+hrs a day in bed.
 
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Hip

Well-Known Member
So energy wise I was mild (but wouldnt call that mild!!!), but cognitively i was severe form with apraxia. Now energy wise i'm still mild, fatigue improved but didnt disappear, but cognitively ii'm def mild now. I take care of myself, my hygiene, house, i didnt do it because of problems with apraxia...... i organize more easily. Fatigue wise i'm close to full functionality but i could manage school before too, but then 15+hrs a day in bed.

That's interesting, because I am similar to you: it is my cognitive symptoms like brain fog, and also the neuropsychological symptoms such as emotional sensitivity to stress and discord, anxiety, depression, emotional flatness, anhedonia, as well as the mental PEM (PEM from mental exertion, especially socializing or any form of excitement), that place significant limitations on my life, making me moderate level ME/CFS (I would call myself semi-housebound). But physically and energetically I am only mild ME/CFS. I can going running for 1 km no difficulty, for example, and can fast walk for 40 minutes with no problem.

So you found that this mega dose vitamin D protocol worked well for your cognitive symptoms like brain fog and apraxia. Do you have any neuropsychological symptoms (like emotional sensitivity, anxiety, depression, emotional flatness), and if so, did you find mega does vitamin D helpful for these?
 

wanderer

Active Member
I have a lot neuropsyche symptoms (its hard to draw a line between cognitive and emotional symptoms - like depersonalization - it is cognitive but in practice is psyche symptom).

No, neuropsyche so far didn't improve with vit D (EXCEPT, ever sense i'm on D i feel 80% more optimistic that i'll recover, befoe that i was very pesimistic). it responds the most to bartonella antibiotics, and i did 2 rounds of Cutler, and each time i had less depersonalization. So i thin psyche issues in my case are from bacteria etc, not autoimmune.

But cognitive responded extremely, from severe disability to mild. In just few weeks... At first i noticed that i wanted to go for a walk with my mom, 5 km, out of 'fun', which i never do, and i felt better connection arms-brain-body, which made my walking more easy.. so like cogn apraxia was linkd to body fatigue because my brain wasn't communicating with body and it was actually like my body is dead and only head walks and carries the body. So first i felt on D that better connection and felt intense pain in my neck, whenever i had it (never had it before D), i'd feel much better. Maybe vit D diluted some veins? Not sure... but like finally i started to feel that part of my body (neck) and more at home in my whole body.

My energy is not so good to run (i can if I must, but we're not speaking of that), but baseed on criteria you posted i'd be 'mild' case even before D, which i wouldnt call myself. I think its extreme to spend all your time in bed , at home. i did go to school and party but ALL time at home was in bed. NO movement was when unnecessary. i'd only walk when i have to (food, go to school) it was like dragging 80 kg potato bag.

You have to keep in mind i'm only 3 months in, many get rid of fatigue much later, and MS fatigue is on avg smaller than ME, so for me its a main symptom.

I dont hink there is a question this protocol will work for majority of ME patients - just looking at extreme similarity of MS and ME is enough. Not to mention so many new evidence ME is mostly autoimmune. Rather this (almost free) than Rituximab (expensive & damaging & temporary).
 

Hip

Well-Known Member
My energy is not so good to run (i can if I must, but we're not speaking of that), but baseed on criteria you posted i'd be 'mild' case even before D, which i wouldnt call myself. I think its extreme to spend all your time in bed , at home. i did go to school and party but ALL time at home was in bed. NO movement was when unnecessary. i'd only walk when i have to (food, go to school) it was like dragging 80 kg potato bag.

Based on what you have said, I would describe the physical and energetic side of you ME/CFS as moderate rather than mild, and the cognitive side of your ME/CFS as severe, if not very severe. I have never come across anyone who had so much cognitive difficulties that they could not figure out how to comb their hair. That really does seem like very severe cognitive issues. I am very pleased that vitamin D has improved your cognitive difficulties to such a great degree.


If you think that your ME/CFS is driven by bacteria such as Borrelia, it's possible the megadose vitamin D may be having an antibacterial effect, by activating the intracellular immune system that fights intracellular infections such as Borrelia. (Chlamydia pneumoniae is also a common intracellular bacterial infection that is associated with ME/CFS. Dr Chia treats many patients whose ME/CFS appears to be due to Chlamydia pneumoniae, using antibiotics).

I am not sure if you are familiar with the Marshall Protocol, which has been used to treat ME/CFS and other diseases associated with intracellular bacterial infections. The Marshall Protocol involves taking the drug olmesartan (Benicar), which activates the vitamin D receptor inside the cell. Like vitamin D itself, Benicar attaches to and activates the vitamin D receptor (VDR), which is located on the nuclear membrane in the cell.

When the VDR is activated, it triggers the release of antibacterial compounds inside the cell (these antibacterial compounds are called cathelicidin and beta-defensins), which fight intracellular bacterial infections. So possibly megadoses of vitamin D may work in the same way as the Marshall Protocol: these megadoses of vitamin D may strongly activate the VDR, causing the release of these antibacterial compounds, thereby fighting intracellular infections.
 

wanderer

Active Member
Based on what you have said, I would describe the physical and energetic side of you ME/CFS as moderate rather than mild, and the cognitive side of your ME/CFS as severe, if not very severe. I have never come across anyone who had so much cognitive difficulties that they could not figure out how to comb their hair. That really does seem like very severe cognitive issues. I am very pleased that vitamin D has improved your cognitive difficulties to such a great degree.



I mostly agree but it's complex. I had apraxia, but not much problem with learning, or memory, reading. I can read 14+ hrs a day, had very big exams that you prepare for 5+ months which I memorized without problems, and work part time and go full time to school. But yeah apraxia part was getting very severe. It wasnt obvious on me if you dont live with me, because i just had problem with such stuff combing hair, cooking, organizing desk.. (anything practical).

Energy - i'm not housebound and never was and it said so for 'moderate'. I could be active 70% of the day but with GREAT difficulty/suffering

If you think that your ME/CFS is driven by bacteria such as Borrelia, it's possible the megadose vitamin D may be having an antibacterial effect, by activating the intracellular immune system that fights intracellular infections such as Borrelia. (Chlamydia pneumoniae is also a common intracellular bacterial infection that is associated with ME/CFS. Dr Chia treats many patients whose ME/CFS appears to be due to Chlamydia pneumoniae, using antibiotics).

I'm pretty sure antimicrobial effect of vit D (cathelicidins etc) isnt reason for improvement because:
1. I was on antibiotics for 18 months before vit D
2. I didnt herx from D
3. when i take 100,000 IU I feel usually more energy immediately.

I think it shuts down some antibodies / immunity pathways.

I am not sure if you are familiar with the Marshall Protocol, which has been used to treat ME/CFS and other diseases associated with intracellular bacterial infections. The Marshall Protocol involves taking the drug olmesartan (Benicar), which activates the vitamin D receptor inside the cell. Like vitamin D itself, Benicar attaches to and activates the vitamin D receptor (VDR), which is located on the nuclear membrane in the cell.


When the VDR is activated, it triggers the release of antibacterial compounds inside the cell (these antibacterial compounds are called cathelicidin and beta-defensins), which fight intracellular bacterial infections. So possibly megadoses of vitamin D may work in the same way as the Marshall Protocol: these megadoses of vitamin D may strongly activate the VDR, causing the release of these antibacterial compounds, thereby fighting intracellular infections.


Yes, I'm familiar, i guess they're trying to do (Marshall and Coimbra) the same thing just opposite approaches!

I really doubt that is the reason, as I said, i herx like crazy on antibiotics and on vitamin D i havent.
 
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Hip

Well-Known Member
I mostly agree but it's complex. I had apraxia, but not much problem with learning, or memory, reading. I can read 14+ hrs a day, had very big exams that you prepare for 5+ months which I memorized without problems, and work part time and go full time to school.

OK, so it seems that you do not have much brain fog. I find it difficult to remember what I had for supper the previous day, and have not read a book for 10 years, when my ME/CFS first began. Before that I used to be a voracious reader of books on science (especially physics), philosophy, mathematics, spirituality, etc. Now I cannot mentally penetrate into these books.

So perhaps we can say that the physical energy side of your ME/CFS is mild to moderate, your ME/CFS cognitive issues (brain fog) are mild, but in addition to ME/CFS, you also have apraxia, as an additional condition, and this is severe. The apraxia may be caused by the same underlying infection, but since apraxia is not a normal symptom of ME/CFS, we can consider the apraxia to be a comorbid condition. ME/CFS often comes with one or more comorbid conditions.

Does that sound about right?

So megadose vitamin D has mainly improved your apraxia, and also improved your ME/CFS energy levels quite a bit, and seems to have improved you mood and optimism (perhaps metabolically, or perhaps just because you are very happy to have achieved these improvements).



I'm pretty sure antimicrobial effect of vit D (cathelicidins etc) isnt reason for improvement because:
1. I was on antibiotics for 18 months before vit D
2. I didnt herx from D
3. when i take 100,000 IU I feel usually more energy immediately.
...
i herx like crazy on antibiotics and on vitamin D i havent.

In that case, I agree that it is probably not any antimicrobial effect of vitamin D that is behind the benefits you feel.



By the way, I was recently communicating with someone who found human growth hormone stimulators like CJC-1295 are having a very positive effect on his depersonalization. CJC-1295 is a fairly inexpensive injectable product sold on many websites selling body-building hormones. He is not sure yet whether these positive effects will be sustained in the long run, because he has just started using CJC-1295.

I tried CJC-1295 myself a while ago, but found no benefits for my ME/CFS or my neuropsychiatric symptoms. However, when I injected actual human growth hormone (HGH), this I found did improve my anhedonia a bit. Unfortunately HGH is expensive.
 

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