Joint and Muscle pain while on the Vitamin D Protocol

A forum to discuss the Coimbra Protocol which uses high-dose vitamin D3 to treat multiple sclerosis.

Joint and Muscle pain while on the Vitamin D Protocol

Postby dlynn » Thu Jul 12, 2018 10:00 am

Hi to all on the Vitamin D Protocol,

I started the protocol 3-8-18 just 4 months ago. But the second month in, I started having much joint and muscle pain in mostly my legs and lower back. I've read other patients comments about this but not how long this pain lasts. My pain is not lessening and it's been 2 months since it started. My Dr. did recommend a different formulation which I will try but in the meantime might this pain subside any time soon? Or does the body need more time to adjust? If it makes a difference, my DX came 25 yrs. ago. Your thoughts will be greatly appreciated, thanks

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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby NHE » Fri Jul 13, 2018 12:03 am

dlynn wrote:Hi to all on the Vitamin D Protocol,

I started the protocol 3-8-18 just 4 months ago. But the second month in, I started having much joint and muscle pain in mostly my legs and lower back. I've read other patients comments about this but not how long this pain lasts. My pain is not lessening and it's been 2 months since it started. My Dr. did recommend a different formulation which I will try but in the meantime might this pain subside any time soon? Or does the body need more time to adjust? If it makes a difference, my DX came 25 yrs. ago. Your thoughts will be greatly appreciated, thanks


Joint and muscle pain goes along with spasticity due to magnesium depletion from high dose vitamin D3.

You may need more magnesium.

It might be best to consult with your doctor.

Another thought is calcium. Have you had your serum calcium level checked recently?

Here's what the Mayo Clinic has to say about hypercalcemia.

https://www.mayoclinic.org/diseases-con ... c-20355523
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby ElliotB » Fri Jul 13, 2018 4:04 am

How has your health been during the course of your illness? What prompted you to start the protocol this year? What was you vitamin D level prior to starting the protocol? What is it now? Did anything change with regard to your MS after you started taking the D3? How much D3 were/are you taking? What type of D3 are you taking?

While it is possible the issues you are experiencing are from the D3, it is also possible they are not. There may not be a way of ever finding out for sure.

You may find these articles informative:

https://www.easy-immune-health.com/pain ... min-d.html

https://www.webmd.com/pain-management/f ... ain-link#1
Last edited by ElliotB on Fri Jul 13, 2018 5:16 am, edited 2 times in total.
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby jimmylegs » Fri Jul 13, 2018 4:16 am

your protocol - is it just high dose vitamin d3 or do you combine and balance appropriately with essential cofactors (such as magnesium, as NHE has mentioned?)

specific and detailed regimen info please. what do you take, what form, how much, and when?
even if you are balancing your intakes of essential cofactors, considering magnesium as an example, issues can arise from matters of a supplement's chemical form, the timing and combinations of intakes, the influence of any other antinutrients in diet or lifestyle (including factors as simple as stress, whether physical - from exercise to injury to surgery - or mental, or emotional)

when i high dose vit d3, which i have done intermittently on a short term basis over the past decade, it is for very specific reasons and with very specific and measured serum targets in mind. i have experience with an array of severe vitamin d3 side effects, none of which have ever included hypercalcemia. we'll look forward to the details of your current regimen :)

for any interested, 13 yrs' worth of related d3 discussion:
natural-approach-f27/topic18559.html
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby AntonioBR » Fri Jul 13, 2018 9:02 am



Hi dlynn,

All the comments and questions that NHE, Jimmy, and Elliot made are important to consider.


Patients that have a ''really low'' vitamin D [25(OH)D3] - when they start to take high doses following the Protocol are often the first to experience pain in joints, bones, and muscles.

Lack of vitamin D3 may also cause joint pain. https://www.webmd.com/diet/guide/vitamin-d-deficiency#1

It's important that you talk to your doctor first. And check your exams/tests.

But I can say that it's quite normal at the beginning of treatment.
For example, my brother takes huge doses of vitamin D3. He started with 130k/D3, increased to 180k and now he's taking 250k. He had ''a little' pain in bones and joints for almost a year. But this pain was very tolerable.

The Italian doctor Leonardo Rubini (he's trained on Coimbra Protocol) wrote some time ago a post about this subject and it's very well known on almost all CP Facebook Pages.

Probably you already read it. But, it's important to repeat it.

Leonardo Rubini - Pain in the Bones and Muscles

This is a side effect of vitamin D, which is not so easy to happen and it is actually a sign that it is really necessary to continue to take vitamin D. If you are experiencing pain from vitamin D most likely means that the bones are a little 'demineralized for the lack of vitamin D, for a very long time. When the bones are demineralized and you start the therapy of vitamin D, this involves a kickoff of a return in the bones. When calcium is in the bones, it brings fluids. These fluids can actually cause a small expansion of the "collagen matrix" within the bones and this expansion pushes against the outer cover of the bone, which is very flexible and has large nerve endings.

In this case, you can experience this bone pain or even muscle pain. In case of onset or worsening of pain after intake of vitamin D, which is not part of the vitamin D contraindications, there is no reason to be scared or to stop taking the vitamin D. If you continue with vitamin D therapy, the pain should subside within a few weeks. This can be uncomfortable, but there was a big advantage in the long run, if you can manage pain for this period and go further. 
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby dlynn » Fri Jul 13, 2018 9:25 am

Thank you all for this information and questions. I will look at all the links you provided and gather my answers and get back to you.

Thank you again,
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby jimmylegs » Fri Jul 13, 2018 10:26 am

i will look forward to seeing your regimen info and any available test results, dlynn. i am uncomfortable with some of the advice you are receiving here. i have not yet found any peer reviewed academic literature to support some of the info given.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby dlynn » Sat Jul 14, 2018 7:00 am

Thanks everyone, I read all the articles,
jimmylegs I don't have the test results however, my protocol Dr. said my calcium level is good and everything is fine. I do phone consults with him.He did not mention magnesium or recommend it or any other supplement.
I take:
Vitamin D-3 15,000 IUs once daily (gelcaps)
LDN 3.5 mg once daily
Vitamin B-12 1,000 mcg once daily
CoQ10 200mg once daily
Turmeric 750 mg once daily
Lions Mane powder 2,500 mg once daily
Gingko-Biloba powder 1/8 tsp. once daily

My protocol Dr. wants me to continue at 15,000 IUs of D-3 and said that the high dose D doesn't cause pain. However, I spoke with my primary care DR., she said that the side effects are pain and fatigue. I'm out of options for treating this disease. I rarely eat meat including fish(prefer raw sushi) but when I do my diet is "clean", grass fed/free range, gluten and dairy free, no alcohol, no drugs including big pharma except LDN, don't smoke, weight is good. I've had 5 CCSVI procedures, my LIJV is stented now sadly there is scar tissue which decreased blood flow. I was dx with Osteoporosis approx. 20 yrs. ago but take nothing for it. I have no other health issues.

Hope I covered everything, thanks everyone!

dlynn
Last edited by dlynn on Sat Jul 14, 2018 7:28 am, edited 1 time in total.
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby NHE » Sat Jul 14, 2018 7:19 am

Here's my D3 & magnesium experience...

NHE wrote:
ElliotB wrote:2000 iu of D3 is not a very high dose

I became magnesium deficient after taking 2000 IU/day over a period of 2 or 3 years. My magnesium deficiency symptoms were painful charlie horse like cramps in my calf muscles and the soles of my feet. These would wake me up at night cringing in pain. The deficiency occurred even though I was taking magnesium citrate at the same time as my D3. The fix was to split things up and take magnesium at the start of my day and the D3 in the evening. After just 2-3 days the cramps were gone. What's funny is that a neurologist wanted to prescribe me baclofen and told me that D3 and magnesium had nothing to do with each other. That kind of "help" is useless.
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby AntonioBR » Sat Jul 14, 2018 8:25 am

dlynn wrote:I take:
Vitamin D-3 15,000 IUs once daily (gelcaps)
LDN 3.5 mg once daily
Vitamin B-12 1,000 mcg once daily
CoQ10 200mg once daily
Turmeric 750 mg once daily
Lions Mane powder 2,500 mg once daily
Gingko-Biloba powder 1/8 tsp. once daily

My protocol Dr. wants me to continue at 15,000 IUs of D-3 and said that the high dose D doesn't cause pain. However, I spoke with my primary care DR., she said that the side effects are pain and fatigue.



dlynn,

Your regime does not have Magnesium and Riboflavin.

Magnesium and Ribloflavin (vitamin B2) are Mandatory on Coimbra Protocol.

Maybe your doctor will include both of these supplements when he/she increase even more your D3 intake. But, it is odd that he/she has not included it yet.


Fatigue is a symptom related to low levels of vitamin D. Taking high doses you will experience fatigue as a symptom of hypercalcemia.

Moreover, remember that there are only a few studies where scientists used +10,000IU of vitamin D3 and most of them only for a short period of time. So, they do not know for sure how are the real symptoms. Remember that 5 years ago FDA was recommending only 400IU per day. Now they increased to 1,000IU per day.

The Institute of Medicine’s Food and Nutrition Board say 600 IU/day is enough for adults and the Endocrine Society says 2,000 IU/day is enough for most adults. They do not have a ''consensus'' about it.

The best study that examined the vitamin D levels of people who get plenty of sun exposure was published in 2012. Researchers discovered that free-living hunter gatherers living around the African equator (where humans evolved) have average vitamin D levels of 46 ng/ml (115 nmol/L). https://www.ncbi.nlm.nih.gov/pubmed/22264449

Professor Robert Heaney of Creighton University details in the study below just how high vitamin D supplementation/input needs to be to reach the vitamin D level goals above. Together with his coauthors, Professor Heaney stated that for a normal weight adult, 5,000 IU/day of total input was needed to obtain a vitamin D level of 40 ng/ml. Of course the final vitamin D level obtained by any dose depends on baseline level, sun exposure and genetics. But he was speaking of the average adult. https://www.ncbi.nlm.nih.gov/pubmed/22262154


Low Levels of Vitamin D and Fatigue

- Case studies have shown that very low blood levels can cause fatigue that has a severe negative effect on quality of life:
-- https://www.ncbi.nlm.nih.gov/pubmed/26543719
-- https://www.ncbi.nlm.nih.gov/pubmed/21206551

- In one case, a woman who complained of chronic daytime fatigue and headaches was found to have a blood level of only 5.9 ng/ml. This is extremely low, as anything under 20 ng/ml is considered to be deficient. Then, when the woman took a vitamin D supplement, her level increased to 39 ng/ml and her symptoms resolved
-- https://www.ncbi.nlm.nih.gov/pubmed/21206551

- A large observational study looked at the relationship between vitamin D and fatigue in young women. The study found that women with blood levels under 20 ng/ml or 21–29 ng/ml were more likely to complain of fatigue than those with blood levels over 30 ng/ml
-- https://www.ncbi.nlm.nih.gov/pubmed/23511484


Low Levels of Vitamin D and Bone and Back Pain

- Large observational studies have found a relationship between a deficiency and chronic lower back pain
-- https://www.ncbi.nlm.nih.gov/pubmed/26431139
-- https://www.ncbi.nlm.nih.gov/pubmed/16718398
-- https://www.ncbi.nlm.nih.gov/pubmed/23758943

- In one controlled study, people with vitamin D deficiency were nearly twice as likely to experience bone pain in their legs, ribs or joints compared to those with blood levels in the normal range
-- https://www.ncbi.nlm.nih.gov/pubmed/21199469


Low Vitamin D Levels and Muscle Pain

- In one study, 71% of people with chronic pain were found to be vitamin D deficient
-- https://www.ncbi.nlm.nih.gov/pubmed/24730754

- A few studies have found that taking high-dose vitamin D supplements may reduce various types of pain in people who are deficient
-- https://www.ncbi.nlm.nih.gov/pubmed/23149532
-- https://www.ncbi.nlm.nih.gov/pubmed/26022378

- One study in 120 children with vitamin D deficiency who had growing pains found that a single dose of the vitamin reduced pain scores by an average of 57%
-- https://www.ncbi.nlm.nih.gov/pubmed/26022378
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby Zyklon » Sat Jul 14, 2018 9:28 am

15000 IU D3 without magnesium? Really? Are you sure you are on the protocol with a certified professional?

What you do can be life-threatening. Consult a professional asap.

To all: Please stop using D3 supplements without monitoring magnesium and calcium levels. It can be very dangerous. There is a reason that suggested daily intakes are low. Take care of yourself.

Coimbra Protocol is not a joke. You can NOT follow it on yourself. It is not as simple as taking lots of D3.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby AntonioBR » Sat Jul 14, 2018 11:31 am

Zyklon wrote:15000 IU D3 without magnesium? Really? Are you sure you are on the protocol with a certified professional?


Yes, I agree.

It's odd.

All the doctors recommend patients to take Vitamin D + Magnesium + Riboflavin.

Magnesium and Riboflavin are mandatory. You must take it.

- Vitamin D cannot be metabolized without sufficient magnesium: http://www.thisisms.com/forum/coimbra-high-dose-vitamin-d-protocol-f57/topic30036.html


- Vitamin D Council Vitamin D and Magnesium: https://www.youtube.com/watch?v=v1T7tWDPrqY

They also prescribe more supplements... And Psychological and Emotional treatment as Cognitive Behavioral Therapy or Hypnosis or some other treatment that works.
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby ElliotB » Sat Jul 14, 2018 11:48 am

15,000 iu daily is not an overly high/dangerous dosage and probably does not need doctor supervision other than perhaps regular general blood work.

I believe Coimbra recommends calcium intake reduction and supervision only at about 3 times this dosage level.
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby AntonioBR » Sat Jul 14, 2018 12:10 pm

ElliotB wrote:15,000 iu daily is not an overly high/dangerous dosage and probably does not need doctor supervision other than perhaps regular general blood work.

I believe Coimbra recommends calcium intake reduction and supervision only at about 3 times this dosage level.



ElliotB,

Dr Coimbra recommends a diet with Calcium intake Reduction when the dose is higher than 10,000 IU D3/day.

And he recommends that everybody that takes vitamin D also supplement with Magnesium.

Even if you do not take a vitamin D supplement he recommends a supplementation with magnesium.
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Re: Joint and Muscle pain while on the Vitamin D Protocol

Postby jimmylegs » Sat Jul 14, 2018 12:39 pm

dlynn, from the sounds of things i'm afraid you are almost certainly overdosing D3 in relation to magnesium.
you would be an unusual person if your diet was actually providing a sufficient daily amount of mag - *without* adding high dose D3 to the equation.

i do not ascribe to the coimbra protocol and any time i have high dosed D3 it has been done based on my own investigations into the academic literature, protocols provided via my local hospital. beyond that it's been personal experience and lessons learned - primarily related to magnesium.

if your protocol doctor is only looking at serum calcium for fear of hypercalcemia and fails to assess serum magnesium for depletion, i feel he is doing you a major disservice.

TiMS member zyklon has published various of his blood test results periodically over the past year and a half. they clearly document the difficulty involved in achieving high normal serum magnesium status, while taking even modestly high dose D3.

echoing NHE's xp, I will add that over a decade ago i managed to deplete my magnesium status while taking just 4000 IU per day of D3.
in another TiMS member's case, 10K IU D3 daily with insufficient mag accompanied crippling full body spasticity and ultimately suicide.
in my far less severe case, main symptoms were shortness of breath and crippling dysphagia (both still spasticity issues).

based on the above i imagine it's clear that i strongly disagree with Elliot re 15000 IU / day being no big deal. must be done appropriately and with attention to cofactor levels and *not just calcium*.

I also took daily magnesium with D3 but like NHE, my timing was off. the pharmacist who brought this issue to my attention advised an approach that is not consistent with NHE's. specifically he said *always* take magnesium with D3 but then also always take *more* away from your daily D3 intake. when i made that change, i felt the improvements within 48 hours. then i went back to my old regimen and my symptoms returned. i was convinced. for months if not years i could feel supplemental magnesium 'kick in'. i wondered if i would ever be able to go a day without taking a magnesium supplement.

after that it would take ages for me to find the correct *form* of magnesium. once i moved away from the highly laxative magnesium oxide and similar forms, i thought i was in the clear. but magnesium bisglycinate gave me a severe GERD cough - it took me a stupidly long period of suffering to realize that the magnesium was over-relaxing my lower oesophageal sphincter. since then, properly dosed and timed magnesium glycinate has remained in the regimen long term.

ultimately, maximizing healthy magnesium in diet and adding magnesium glycinate as needed to reach daily needs has done the trick. i no longer feel it if i skip magnesium supplementation for a day. i don't feel it 'kick in' when i take a mag pill. it's comforting to know that the worst of the tissue depletion is now in the past.

i hope you are able to take advantage of the combined experiences of the membership here to find something that works for you too!

there is a certain amount posted here at TiMS about magnesium in the context of CCSVI specifically, and also magnesium's role in preventing restenosis after a stenting procedure. it's worth knowing your own serum magnesium status and making sure your diet meets requirements to match your lifestyle.

it's also worth noting that the Daily Value (DV) often seen on food labels, is a blanket daily number that applies to anyone age 4 and up. some authors have proposed daily intakes of 7-10 mg of elemental mag per kg of body weight. for some, this can mean that a 400 mg DV amount is insufficient.

these are the D3 cofactors with which i'm most familiar.
https://www.vitamindcouncil.org/about-v ... -minerals/
i am not on board with every assertion made at that site^, and it could be improved with the addition of proper research citations.

i am highly skeptical about the introduction of riboflavin to this conversation, and would be interested in seeing any well designed, peer reviewed academic literature supporting its interactions with D3.

since doing work on cofactor status, i have noted a major improvement to dose response when i take D3. the first time i followed the hospital's regimen to boost by 50 nmol/l, my levels actually went up by 70. later, after more cofactor work (notably magnesium and zinc) a shorter version of the local hospital's protocol saw my levels jump over 160 nmol/l rather than the expected 50, ie my dose response to D3 more than tripled.

dlynn if you can get your own copies of the serum levels for d3, calcium, plus magnesium and zinc, you'll be in a better position to assess your best bet for next steps. those four numbers are a decent place to start, in order to make sure your levels are closest to those of healthy controls as opposed to those of a typical ms patient :) (this is 'step 1' stuff over in the CCSVI forum!)
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pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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