Low vitamin D after one year of supplementing

So part of my lyme treatment, my LLMD prescribed me 2000IU D3. Nothing special so far, so been taking this for the last year and a half, religiously and daily. Plus a lot of sun during summer time. Fine.

My LLMD tells me after my last visit in November "check your D3 levels", you need to be in the "upper third range". Okay, so i did just that in January and my 25-OH-Vitamin D level was 30.3ng/mL. The range on my result paper says anything below 30 is deficiency and anything below 10 is severe deficiency...

Now i do know about ANOTHER type of test called 1,25-OH(2)-Vitamin-D3, i did this test in 2015 and my results were mid range. This one is much more expensive of a test and im not willing to repeat this unless absolutely necessary.

But there's a catch here, the 25-OH- tests the storage levels of vit D and 1,25-OH(2) tests the activated levels of vitamin D. U can have high activated vitamin D and pretty low on storage, meaning u will soon run out of it, or who knows...

Traditionally in chronic inflammatory diseases you end up having low vitamin D. There is a whole chicken-and-egg issue with this because nobody really knows if this is a cause of low vitamin D or effect of it...

Some recommended reading
lymemd.blogspot.com/2008/05/whats-deal-with-vitamin-d.html
then he realizes his blog is not very accurate and one year later , he retracts it
lymemd.blogspot.com/2009/12/vitamin-d-retraction-i-got-it-all-wrong.html
Even though some of the claims he makes in the first article were retracted, it is interesting read.

Very recent research about chronic EBV, HSV-1, CMV, low vitamin D and onset of MS symptoms:
/app.core-apps.com/actrims2017/abstract/88e69d168ea60781d8c16efbccc48f19
and another one
www.neurology.org/content/88/1/44.short

And then there's Marshall Protocol, which now is widely considered dangerous and hardly effective, but it has a lot to do with Vitamin D, too ... there is something funny going on with vitamin D and chronic intracellular infections...

For me it was a big surprise to see i have such low levels (borderline deficient) after supplementing for so long. Anyway, now i take 4-5000IU a day and will re-test in 3 months. Also taking some vitamin K now...

I was wondering how much Vit D are u guys taking, have u tested your vitamin levels, what type of tests have u done etc....

Thanks!!

Post Edited (mpost) : 3/24/2017 8:18:51 AM (GMT-6)

I think it's a symptom also.

I went from 23 to 48 by taking 15,000 D3 for 3 days and then 5000 per day after that in about 6 months. No change in symptoms after Vit D level went up.

This is from the Vitamin D council website:




"Be specific and ask for a 25(OH)D test. There is another type of blood test for vitamin D, called a 1,25(OH)₂D test, but the 25(OH)D test is the only one that will tell you whether you’re getting enough vitamin D."


/www.vitamindcouncil.org/about-vitamin-d/testing-for-vitamin-d/

Sick people and old people need more vitamin D than healthy people. Doubt if 2000 IU would be enough for someone who is sick but the test is telling you that. Being out in the sun is helpful for vitamin D if the sun is at the right angle for producing vitamin D. I use to spend time in the sun in the morning but the best time for vitamin D production would be at noon. One way to tell if the sun is producing vitamin D is to look at the length of your shadow. If your shadow is longer than you are tall you are not going to produce vitamin D because the sun is not at the right angle. Your shadow has to be smaller than you in order to produce vitamin D. Here is an article that explains vitamin D and the length of your shadow.

http://www.naturalnews.com/027345_Vitamin_D_exposure_sun.html

http://inameiskincare.com/pages/2012/04/30/get-out-and-look-at-your-shadow-vitamin-d-health-and-skincare/

Yep, just checked. It is the VDR genesand I am homozygous for both the mutations.

Don't know if this is something that may have a bearing on your levels or something that you may have already checked out.

Resurrecting this thread to let u guys know that after boosting vitamin D from 2000 IU to 5000IU daily + vitamin K, for the last 5 months, and my levels jumped from 30.3 to 50.7 ng/mL. Overall i feel much better and had fewer symptoms than ever. Time will tell, ill post again in 3-4 months time. Obviously my ionized calcium levels in plasma jumped up as well, they were very low, too.

If you are going to supplement with D3, then K2 should go with it.

In light of the new to me information obtained in the Norquist video listed in the parallel discussion of Oral Spirochetes, I am seriously considering discontinuing supplementation.

I am however increasing sunlight exposure but will have to again limit this when I go back on the tetracycline d' jour. I will not eliminate but rather minimize sunlight.

bmoberg337 said...
@MPOST

Not sure if you have seen this research but they hypothesize that low vit d is the consequence rather than cause of chronic inflammation due to infection.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160567/

Following this logic it doesn't matter how much you supplement with Vit D. because vit d metabolism is compromised. This theory is predicated on the observation that both healthy and sick populations (as 10Lymeb pointed out) have low vitamin d, but sick patients have low serum 25(OH)D with normal to high 25(OH)2D. The elevation of 25(OH)2D is the bodies attempt to improve vit d uptake.

The Marshal protocol is based on this theory (I believe) and one of the things the Marshal protocol and this research study suggest is the use of olmesartan (a.k.a. Benicar) to improve vit d. metabolism. There are quite a few studies showing olmesartan's effectiveness at stimulating vitamin D receptor (VDR) activity which is evident by reductions in 25(OH)2D in affected patients.

I personally tried Benicar for two weeks but did not notice any benefit. From my understanding you need to stick with it much longer than that. I abandoned this because I already have low blood pressure (Benicar is blood pressure medication) and I was getting weird sensations when exercising. I kind of felt like it decreased my capacity to clear serum lactate as well which resulted in reduced endurance capacity, so it wasn't worth it. Unfortunately I not doing as well now and it might be worth sacrificing exercising for a while to give it another shot. The research on it seems pretty strong.

I am glad you posted this! And @ Girlie it's funny what you post about the Vit D council. Because my LLMD says the opposite or at the very least you need a proper ratio between the two. In 2015 I went to a Lyme conference with Dr. H as the keynote speaker. Several of the speakers discussed this very subject. The consensus was that Lyme literally disables Vit D receptors. So we can keep throwing D down our throats, but nothing will change, except our 1,25 will increase which can cause calcification in places we don't want. I know this first hand, because about 5 years ago(before Lyme DX) a well meaning ND, gave me HIGH dose(don't recall the exact amount, maybe 75,000) weekly injections of Vit D and the benign fibrotic cysts in my breasts started to calcify. That was SO painful!! Then, we didn't know what was happening, but now I know better. My LLMD discovered my 1,25 was in the toxic range and immediately pulled me off all sunlight, Vit d supps or food with added D. Not as radical as the Marshall protocol. It's better now and my ratio is almost normal. Someone out there told me about transdermal Vit D with K lotion and I have been using that now since I don't think I tolerate ingestion of it.

I have to stay on 10,000 IUs daily, year round, to maintain my levels. I have my LLMD run the Vit D test whenever I'm getting other bloodwork, and any time I've dropped below 10,000 IUs, my levels tank.

TrialbyLyme said...
@MPOST
So we can keep throwing D down our throats, but nothing will change, except our 1,25 will increase which can cause calcification in places we don't want.

1,25-dihydroxyvitamin D is the non activated form of vitamin D. Unless your kidneys activate this and transform it into 25-hydroxyvitamin D, there is no way you can get calcified blood vessels or kindey stones out of it. But your vitamin D injections had an insanely high amount of vitamin, 75k IU per week means 11k IU per day and INJECTABLE means 100% absorbed which is not the same as the oral dose which never gets 100% in blood stream for multiple reasons, so u basically got yourself a huge amount of vitamin D. I hope you are ok now and no major side effects

Vitamin D cycle is very complicated and if it breaks, the active form never gets produced and you are in trouble. This MD explains it very very nicely (also bonus explains how vit D affects some IL markers)
/www.youtube.com/watch?v=yhUuf2QZd_E

So to treat autoimmune reactions from chromic lyme/MS, besides herbs and many other detox things, i would:
- sleep 7+ hours a day even if that means taking strong sleeping pills, what ever it takes (i dont need to paste studies here because the link between lack of sleep stress and autoimmune is so obvious you can experience it daily yourself, when u had a bad night sleep).

- completely cut gluten from your diet, NO CHEATING ("once every two weeks i cheat and eat some muffins " - no ...that's as if u never went gluten free since gluten is a sticky molecule and lingers for days in your intestines after one single meal)
www.neurology.org/content/62/12/2326.short
onlinelibrary.wiley.com/doi/10.1111/j.1749-6632.2009.04620.x/full
onlinelibrary.wiley.com/doi/10.1111/j.1600-0404.2004.00303.x/full


- completely cut dairy from your diet, yes that means yogurt too (so you will end up with lower calcium intake than normal)
www.jimmunol.org/content/172/1/661.short
www.karger.com/Article/Abstract/110946 --> NO BUTTER EITHER!


- get 5000+ IU Vitamin D3 daily , supplement with K if it does not work
journals.sagepub.com/doi/abs/10.1177/1352458516654310
www.neurology.org/content/86/4/382


- test your 25-hydroxyvitamin D, Ionized calcium and serum calcium levels every 4 months or so, to ensure you are not intoxicating yourself.
- decide if u need extra calcium pills or not (since you are not eating dairy AT ALL) based on your blood results. Or supplement with a lot of peanuts and especially almonds, which contain more calcium. Then test again in 4 months.

Good presentation about reversing MS with diet:
/www.youtube.com/watch?v=CqjzXuupAas

sorry, i know we are a lyme forum, but ive pasted lots of MS diet studies, chronic lyme disease studies on nutrition are nonexistent because, you know, chronic lyme does not exist... The diseases are very similar anyway in both presentation and more recently in some treatment options ..

Post Edited (mpost) : 6/13/2017 5:07:12 PM (GMT-6)

mpost said...

TrialbyLyme said...
@MPOST
So we can keep throwing D down our throats, but nothing will change, except our 1,25 will increase which can cause calcification in places we don't want.

1,25-dihydroxyvitamin D is the non activated form of vitamin D. Unless your kidneys activate this and transform it into 25-hydroxyvitamin D, there is no way you can get calcified blood vessels or kindey stones out of it. But your vitamin D injections had an insanely high amount of vitamin, 75k IU per week means 11k IU per day and INJECTABLE means 100% absorbed which is not the same as the oral dose which never gets 100% in blood stream for multiple reasons, so u basically got yourself a huge amount of vitamin D. I hope you are ok now and no major side effects

Vitamin D cycle is very complicated and if it breaks, the active form never gets produced and you are in trouble. This MD explains it very very nicely (also bonus explains how vit D affects some IL markers)
/www.youtube.com/watch?v=yhUuf2QZd_E

So to treat autoimmune reactions from chromic lyme/MS, besides herbs and many other detox things, i would:
- sleep 7+ hours a day even if that means taking strong sleeping pills, what ever it takes (i dont need to paste studies here because the link between lack of sleep stress and autoimmune is so obvious you can experience it daily yourself, when u had a bad night sleep).

- completely cut gluten from your diet, NO CHEATING ("once every two weeks i cheat and eat some muffins " - no ...that's as if u never went gluten free since gluten is a sticky molecule and lingers for days in your intestines after one single meal)
www.neurology.org/content/62/12/2326.short
onlinelibrary.wiley.com/doi/10.1111/j.1749-6632.2009.04620.x/full
onlinelibrary.wiley.com/doi/10.1111/j.1600-0404.2004.00303.x/full


- completely cut dairy from your diet, yes that means yogurt too (so you will end up with lower calcium intake than normal)
www.jimmunol.org/content/172/1/661.short
www.karger.com/Article/Abstract/110946 --> NO BUTTER EITHER!


- get 5000+ IU Vitamin D3 daily , supplement with K if it does not work
journals.sagepub.com/doi/abs/10.1177/1352458516654310
www.neurology.org/content/86/4/382


- test your 25-hydroxyvitamin D, Ionized calcium and serum calcium levels every 4 months or so, to ensure you are not intoxicating yourself.
- decide if u need extra calcium pills or not (since you are not eating dairy AT ALL) based on your blood results. Or supplement with a lot of peanuts and especially almonds, which contain more calcium. Then test again in 4 months.

Good presentation about reversing MS with diet:
/www.youtube.com/watch?v=CqjzXuupAas

sorry, i know we are a lyme forum, but ive pasted lots of MS diet studies, chronic lyme disease studies on nutrition are nonexistent because, you know, chronic lyme does not exist... The diseases are very similar anyway in both presentation and more recently in some treatment options ..

Thanks for all the links. I will look at them. Yeah, I worked for the ND at the time and remember thinking, "this is a ton of Vit D. " but felt like I couldn't say anything. Sorry if TMI but I could not wear a bra for 6 months because my chest hurt so bad. And I would say it took a year before things felt "normal" again. I still have twinges and then I increase K2. I'm not sure what you mean by you can't get kidney stones/blood vessels out of it. My doc here said high 1,25 is the quickest way to hypercalcification, or is it hypo? lol. I'm not the expert.

I've read a lot of interesting things about Vitamin D. I'm not sure how deep ya'll want to go. I do disagree with the council on their testing. I've helped quite a few people with their 23andme results and every one of them had VDR mutations. I've come to the conclusion that it is an epigenetic shift that ultimately lowers oxidative stress and it happens when our GI flora can no longer make adequate levels of Vitamin K.

sp2000 said...
Hi Georgia Hunter

I used Saw palmetto about 5-6 years ago and it destroyed my health and life. Since then I am crippled. Without going into detail of my complaints my one of many issues is I have got severe vitamin D deficiency after the use of Saw palmetto. I take almost 8000 IU daily, without VitD I will die. Yes if I stop vit D my muscles degenerate, my appetite die, my depression kicks in etc etc. I don't know what SP did it to me. What do you think is it my liver issue or gut issue?
thanks
sp

If I had to guess, I'd guess gut issue.