ME Assoc. June survey - Vit. D testing

[Justin30]

1 25 Hydroxy is what is most tested in Canada now though it can only be ordered by a specialist....

 

[Art Vandelay]

I recently discovered that Dr De Meirleir (KDM) is finding the usual Vitamin D test (for 25-OH Vitamin D) not helpful, as, according to him, ME/CFS patients, while having low serum 25-OH Vitamin D, often have "near toxic" levels of 1,25 OH Vitamin D (the activated version). Standard clinical labs generally don't test for 1,25 OH Vitamin D, but KDM does.

The only reference I have at the moment is this video. The vitamin D discussion starts after 4:30.

It is well worth getting your 1,25 OH Vitamin D checked particularly if your 25-OH Vitamin D is low and especially if you react badly to vit D supplements. My 1,25 OH Vitamin D was near triple normal levels while my 25 vit D was low.

Modern medicine's traditional take on vit D seems to be way too simplistic in my view, See for example:

Ann N Y Acad Sci. 2009 Sep;1173:384-90. doi: 10.1111/j.1749-6632.2009.04875.x.
Vitamin D metabolites as clinical markers in autoimmune and chronic disease.
Blaney GP1, Albert PJ, Proal AD.
Author information

• 1Stillpoint Centre, Vancouver, British Columbia, Canada. gregblaney@shaw.ca

Abstract
Recent research has implicated vitamin D deficiency (serum levels of 25-hydroxyvitamin D <50 nmol/L) with a number of chronic conditions, including autoimmune conditions such as multiple sclerosis, lupus, and psoriasis, and chronic conditions such as osteoporosis, osteoarthritis, metabolic syndrome, fibromyalgia and chronic fatigue syndrome. It has been assumed that low levels of 25-hydroxyvitamin D (25-D) accurately indicate vitamin D storage and vitamin D receptor (VDR)-mediated control of calcium metabolism and innate immunity. To evaluate this assumption, 25-D and 1,25-dihydroxyvitamin D3 (1,25-D) levels were measured in 100 Canadian patients with these conditions. Additionally, other inflammatory markers (CK, CRP) were measured. Results showed a strong positive association between these autoimmune conditions and levels of 1,25-D >110 pmol/L. However, there was little association with vitamin D deficiency or the other inflammatory markers, meaning that the results challenge the assumption that serum levels of 25-D are a sensitive measure of the autoimmune disease state. Rather, these findings support the use of 1,25-D as a clinical marker in autoimmune conditions. High levels of 1,25-D may result when dysregulation of the VDR by bacterial ligands prevents the receptor from expressing enzymes necessary to keep 1,25-D in a normal range.

https://www.researchgate.net/public...cal_Markers_in_Autoimmune_and_Chronic_Disease

 

[Justin30]

It is well worth getting your 1,25 OH Vitamin D

Is this not the same as 1,25Hydroxy?

So than if its its a sign of inflamation and autoimmunity but if it is low what does this signify?

Art would you by chance know of any articles or have an insight?

 

[Art Vandelay]

Is this not the same as 1,25Hydroxy?

So than if its its a sign of inflamation and autoimmunity but if it is low what does this signify?

Art would you by chance know of any articles or have an insight?

Yes, 1,25 hydroxy vit D is 1,25 OH vit D

Typically (and I thought that this is the case in Canada as it is in Australia, UK and US judging from my conversations with Canadians on this issue), the standard vitamin D test only measures 25 OH vit D. Not 1,25.

But it looks like this wasn't the case for you? Weird.

[Post edited to remove my misinterpretation of your previous posts. Brain-fogged today.]

 

[Justin30]

Yes, 1,25 hydroxy vit D is 1,25 OH vit D

Typically (and I thought that this is the case in Canada as it is in Australia, UK and US judging from my conversations with Canadians on this issue), the standard vitamin D test only measures 25 OH vit D. Not 1,25.

But it looks like this wasn't the case for you? Weird.

[Post edited to remove my misinterpretation of your previous posts. Brain-fogged today.]

They do have 2 tests in Canada but know the 1,25 vit D is the one to use

 

[Mij]

I had both tests done, 25HYDR and 1-25DIHY. When I took more than 3000Iu's/day my 1-25DHIY levels went up to 153(40-150). My 25HYDR was up at 144

So I only take 2000ius.day to be safe.

Higher doses of vitamin D make me feel worse.

 

[charles shepherd]

This NHS info (updated in 2013) contains a quite useful Management Flowchart:

http://www.cumbria.nhs.uk/Professio...umbria-Vitamin-D-Clinical-Guideline-final.pdf

and fairly official NHS guidance on supplementation for people who are identified as being at risk of developing symptomatic vitamin d deficiency

 

[Mij]

@charles shepherd the link you posted states that fishy oils and cod liver oils increase vitamin D, this was not the case for me. You would have to take a lot of cod liver oil to get to normal levels, and cod liver oil increases vitamin A to a too high level in my case.

A vitamin D supplement worked best and of course sunlight when it finally arrives(!)

 

[Justin30]

@charles shepherd those are very high doses for deficient I didnt realize how serious this can be.

I am clearly insufficient and need to work on this. I have started to up my Vitamin D dose.

Do you know if vitamin D plays a big role in testosterone levels?

 

[dannybex]

Yes, 1,25 hydroxy vit D is 1,25 OH vit D

Typically (and I thought that this is the case in Canada as it is in Australia, UK and US judging from my conversations with Canadians on this issue), the standard vitamin D test only measures 25 OH vit D. Not 1,25.

But it looks like this wasn't the case for you? Weird.

[Post edited to remove my misinterpretation of your previous posts. Brain-fogged today.]

Personally I would not put much into any papers authored by Amy Proal. She's connected to the discredited theories and hypotheses of "Dr." Trevor Marshall, of the now (almost) defunct "Marshall Protocol" that made the rounds about 10 years ago, claiming to cure, yes cure, ME/CFS, fibromyalgia, and on and on, within 2 years. As time went on, and people weren't recovering, this stretched to 3, 4, 5 years, until it was discovered the Marshall himself was still taking abx daily -- so much for his cure.

They typically made a big deal about elevated 1,25-d levels, claiming that one should then avoid 'D' supplementation. But they went even further.

The most bizarre part of his protocol involved avoiding not only vitamin D, and sunlight, but almost all forms of light -- wearing hats and long coats and sunglasses not only outside, but inside as well. I've posted about this elsewhere, so won't blabber on and on about it here, but suffice to say that 3 people in our local support group almost went into kidney failure as a result of his protocol. And worse, while this was happening, they were told to continue...they were just "herxing".

Some horror stories (in the comments) here:

http://www.cureality.com/blog/post/2008/03/31/the-marshall-protocol-and-other-fairy-tales.html

http://forums.prohealth.com/forums/...shall-protocol-has-made-me-much-worse.206680/

Ken Lassesen, who has gone into remission 3 times over the past 45 years, was part of our local group and says the same on his blog:

https://cfsremission.wordpress.com/2014/08/07/memory-issues-vitamin-d-and-chronic-fatigue-syndrome/

He doesn't say so on that page, but I believe he was taking 10,000iu during his last recovery (in 2012) even though his 1,25 d levels were sky-high -- and he's been in remission, back at work in his mid-sixties, since mid 2013.

1,25-D is typically not measured because it can be influenced by many different factors. Yes, it can be high due to inflammation and immune dysfunction, so it's almost a guarantee that a majority of ME/CFS patient's tests will come back elevated.

But low calcium will also make 1,25-D skyrocket (become activated) in order to increase calcium levels (by pulling calcium from the bones, jaw).

Okay, I'll shut up.

 

[Hugo]

@Justin30 I was depleted in magnesium, so yes I took tons of magnesium and taurine injections for years, I felt so good on them- as though I had extra fuel in the tank. I now rub magnesium chloride gel on my skin to keep my levels up.

I didn't benefit from taking mg supplements because I wasn't absorbing it.

What testing are you having for mg levels? RBC? It's not an accurate test, but if you are lowish then you are already 1/3 depleted.

Did you have any pain? I find magnesium oil to help with my muscle and nerve pain but not enough and I would like an magnesium injection. Do you know of any good research that I can use in convincing my doc. Ive only found Cheneys and Myhills treatment protocoll. I found this one but its pretty old and rather small, but good result and serious study, placebo and double blind http://www.ncbi.nlm.nih.gov/pubmed/?term=magnesium injections cfs

 

[Justin30]

Did you have any pain? I find magnesium oil to help with my muscle and nerve pain but not enough and I would like an magnesium injection. Do you know of any good research that I can use in convincing my doc. Ive only found Cheneys and Myhills treatment protocoll. I found this one but its pretty old and rather small, but good result and serious study, placebo and double blind http://www.ncbi.nlm.nih.gov/pubmed/?term=magnesium injections cfs

I am doing meyers IV vit injections weekly and have added back in magnesium shots as the taurine seemed to agrevate POTS.

I do have pain.

They worked in the begining better than they do now as I have gotten worse.

Last mag test was the lowest on the scale. 3 months ago.

 

[Hugo]

I am doing meyers IV vit injections weekly and have added back in magnesium shots as the taurine seemed to agrevate POTS.

I do have pain.

They worked in the begining better than they do now as I have gotten worse.

Last mag test was the lowest on the scale. 3 months ago.

Oh thats bad news. Hope you will find something else. Do you think the agrevation of POTS symptom played any role in your pain returning? Did you take any mag injections without taurin? How is your pain comparise to when you begin?.. probably hard to tell since you gone down and up in symptoms since you started the treatment.

 

[Justin30]

Yesh i did mag and taurine.

Its been really tough and frustrating.

The pain is just constant sometimes it just gets really bad.

Especially recently the headaches.

I would like to do things naturally but this illness just seems to be really overbearing.

 

[Hugo]

Yeah I can relate, I have ME and lyme and the pain from lyme is hard. I had a really bad period once but I got better from that (but far from good, still a lot of pain but not constant atleast) so I hope you will to, and Im sure you will either because of meds or your body gets a little better of itself.

Do you think your magnesium shot had any part in making your ill? That discussion is always on magnesium if it can worsen the illness (biofilms). Most lyme doctors I know dont think so mostly cause the benefits outweight the possible cons.

 

[Justin30]

Do you think your magnesium shot had any part in making your ill?

No,

I just think we need real ME drs and research teams and centers to monitor us and work with us to help dig us out of this state of disability.

Centers of excellence and precision medicine everywhere based on the prevalence of the illness. Not just a couple handfulls of Drs scattered across the globe where travel and treatment takes place from a far.

Bottom line is all that is required is large surges of money and rectification of medical literature so that the next gen of Drs start aknowledging the ingorance of the past.

By the stats ME is more prevalent than MS and Aids.....pretty hard to dismiss those stats if true... there are centers for those in all major cities..

 

[Hugo]

No,

I just think we need real ME drs and research teams and centers to monitor us and work with us to help dig us out of this state of disability.

Centers of excellence and precision medicine everywhere based on the prevalence of the illness. Not just a couple handfulls of Drs scattered across the globe where travel and treatment takes place from a far.

Bottom line is all that is required is large surges of money and rectification of medical literature so that the next gen of Drs start aknowledging the ingorance of the past.

By the stats ME is more prevalent than MS and Aids.....pretty hard to dismiss those stats if true... there are centers for those in all major cities..

Yes its frustrating. Especially the extreme cost a society put in HIV and the resources they get are enourmos, its also so much studies on that illness that it dwarfes nearly every other infection in the developed world.

Our hope has to go to other medicines for other illnesses that they overlap like it seems to be the case with rituximab for example and that the understanding of ME and also lyme in my case gets better.

 

[Mij]

Did you have any pain? I find magnesium oil to help with my muscle and nerve pain but not enough and I would like an magnesium injection. Do you know of any good research that I can use in convincing my doc. Ive only found Cheneys and Myhills treatment protocoll. I found this one but its pretty old and rather small, but good result and serious study, placebo and double blind http://www.ncbi.nlm.nih.gov/pubmed/?term=magnesium injections cfs

No pain. My integrative doctor was giving me mg shots on their own once a week for a while but they didn't help, it took several months of convincing him to add taurine and to give me more. He wasn't comfortable giving me more until I showed him Dr.Cheney's protocol so he decided to give me a 6 week trial, the difference on how I felt and appeared convinced him I needed this. He had attended one of Dr.Cheney's talks so he was familiar with him and trusted his treatments.

Sorry, but I don't have any serious study to help you with.

 

[Hugo]

No pain. My integrative doctor was giving me mg shots on their own once a week for a while but they didn't help, it took several months of convincing him to add taurine and to give me more. He wasn't comfortable giving me more until I showed him Dr.Cheney's protocol so he decided to give me a 6 week trial, the difference on how I felt and appeared convinced him I needed this. He had attended one of Dr.Cheney's talks so he was familiar with him and trusted his treatments.

Sorry, but I don't have any serious study to help you with.

Thanks, I guess its very tough to get this from my doctor if even possible. Does anyone know somewhere in europe where you can get this many magnesium shots and the doctor is not extremly expensive I would like to know. I live in Sweden.

 

[Mij]

@johmil have you had your magnesium levels tested? there are better tests than RBC which is not that accurate. My levels were below normal. If you are low or below normal perhaps your doctor will consider it.