b12, magnesium - any evidence I can show my doctor re deficiency in ME?

[Sasha]

I've been following Freddd's b12 protocol with initial success but had to put it on hold because I developed symptoms of electrolyte deficiency (or possibly surplus!). These symptoms have got worse since a virus (I now have occasional palpitations, left side slight chest pain, a feeling of slight breathlessness despite my breathing not speeding up, and facial twitching) and I need to go to my doctor to get them checked out.

I hope it might be an opportunity to get magnesium supplementation by injection that I might not otherwise be offered; and/or monitoring of my electrolytes that will be helpful when I go back on the b12 protocol.

I'd like to be able to show my doctor evidence that people with ME have b12 deficiency (so that he won't think I'm a nutter for supplementing with it) and magnesium deficiency. Several ME specialists seem to talk about both deficiencies and treat patients with supplementation for them but I'd like to be able to show my doctor a published research paper.

In the UK, the standard NHS test for magnesium deficiency is a blood serum test. According to Dr Myhill, although a deficiency shows up first in the serum, it's not the most relevant measure because the body will take magnesium out of the cells to maintain the serum level to keep the heart going so you can be very deficient at the intracellular level. I gather that a test exists (in which country I don't know) for an intracellular test. Is there a research paper showing that this is superior that I could show my GP? Has anyone in the UK managed to get this test through their GP? Or privately?

 

[richvank]

I've been following Freddd's b12 protocol with initial success but had to put it on hold because I developed symptoms of electrolyte deficiency (or possibly surplus!). These symptoms have got worse since a virus (I now have occasional palpitations, left side slight chest pain, a feeling of slight breathlessness despite my breathing not speeding up, and facial twitching) and I need to go to my doctor to get them checked out.

I hope it might be an opportunity to get magnesium supplementation by injection that I might not otherwise be offered; and/or monitoring of my electrolytes that will be helpful when I go back on the b12 protocol.

I'd like to be able to show my doctor evidence that people with ME have b12 deficiency (so that he won't think I'm a nutter for supplementing with it) and magnesium deficiency. Several ME specialists seem to talk about both deficiencies and treat patients with supplementation for them but I'd like to be able to show my doctor a published research paper.

In the UK, the standard NHS test for magnesium deficiency is a blood serum test. According to Dr Myhill, although a deficiency shows up first in the serum, it's not the most relevant measure because the body will take magnesium out of the cells to maintain the serum level to keep the heart going so you can be very deficient at the intracellular level. I gather that a test exists (in which country I don't know) for an intracellular test. Is there a research paper showing that this is superior that I could show my GP? Has anyone in the UK managed to get this test through their GP? Or privately?

Hi, Sasha.

Here's the abstract of a paper by Regland et al in Sweden about B12 deficiency in spinal fluid in PWCs:

Scand J Rheumatol. 1997;26(4):301-7.
Increased concentrations of homocysteine in the cerebrospinal fluid in patients with fibromyalgia and chronic fatigue syndrome.
Regland B, Andersson M, Abrahamsson L, Bagby J, Dyrehag LE, Gottfries CG.
Source

Institute of Clinical Neuroscience, Gteborg University, Sweden.
Abstract

Twelve outpatients, all women, who fulfilled the criteria for both fibromyalgia and chronic fatigue syndrome were rated on 15 items of the Comprehensive Psychopathological Rating Scale (CPRS-15). These items were chosen to constitute a proper neurasthenic subscale. Blood laboratory levels were generally normal. The most obvious finding was that, in all the patients, the homocysteine (HCY) levels were increased in the cerebrospinal fluid (CSF). There was a significant positive correlation between CSF-HCY levels and fatiguability, and the levels of CSF-B12 correlated significantly with the item of fatiguability and with CPRS-15. The correlations between vitamin B12 and clinical variables of the CPRS-scale in this study indicate that low CSF-B12 values are of clinical importance. Vitamin B12 deficiency causes a deficient remethylation of HCY and is therefore probably contributing to the increased homocysteine levels found in our patient group. We conclude that increased homocysteine levels in the central nervous system characterize patients fulfilling the criteria for both fibromyalgia and chronic fatigue syndrome.

PMID:
9310111


Here's an abstract of a paper by Cox et al. (from the UK and published in the Lancet) about magnesium deficiency in CFS:

Lancet. 1991 Mar 30;337(8744):757-60.
Red blood cell magnesium and chronic fatigue syndrome.
Cox IM, Campbell MJ, Dowson D.
Source

Medical School, University of Southampton, UK.
Abstract

The hypotheses that patients with chronic fatigue syndrome (CFS) have low red blood cell magnesium and that magnesium treatment would improve the wellbeing of such patients were tested in a case-control study and a randomised, double-blind, placebo-controlled trial, respectively. In the case-control study, 20 patients with CFS had lower red cell magnesium concentrations than did 20 healthy control subjects matched for age, sex, and social class (difference 0.1 mmol/l, 95% confidence interval [CI] 0.05 to 0.15). In the clinical trial, 32 patients with CFS were randomly allocated either to intramuscular magnesium sulphate every week for 6 weeks (15 patients) or to placebo (17). Patients treated with magnesium claimed to have improved energy levels, better emotional state, and less pain, as judged by changes in the Nottingham health profile. 12 of the 15 treated patients said that they had benefited from treatment, and in 7 patients energy score improved from the maximum to the minimum. By contrast, 3 of the 17 patients on placebo said that they felt better (difference 62%, 95% CI 35 to 90), and 1 patient had a better energy score. Red cell magnesium returned to normal in all patients on magnesium but in only 1 patient on placebo. The findings show that magnesium may have a role in CFS.
Comment in

* Lancet. 1991 Jul 6;338(8758):66.
* Lancet. 1991 Sep 7;338(8767):641.
* Lancet. 1991 May 4;337(8749):1094-5.
* Lancet. 1992 Jul 11;340(8811):124-5.

PMID:
1672392

The intracellular magnesium test (Exatest), as far as I know, is performed only by Intracellular Diagnostics, Inc. in Oregon, USA:

http://www.exatest.com/

They give some references on their site about how their measurement correlates with levels in heart muscle cells.

In the U.S. many people use red blood cell tests for magnesium. They aren't as reliable as the Exatest, but better than serum magnesium testing, which is not a reliable indicator of the body's magnesium status.

Best regards,

Rich

 

[Sasha]

Thanks, rich - just shows the need for more research money, doesn't it?!

It's odd that quite a few ME specialists seem to be supplementing with b12 and Mg but that there aren't more research papers - even summary figures on patients if not case-control stuff. You'd think that with so many of them interested they might want to get together and do a study but I suppose they have plenty on their plate already.

I really look forward to the day when they get together and publish an agreed, basic treatment protocol. They've already produced the new International Consensus Criteria using a Delphi method - roll on the Delphi'ed treatment protocol! We patients need not to have to be our own doctors any more.

Sorry, bit of a rant there! As always, very kind of you to take the time to produce a prompt and helpful reply.

 

[jimells]

I first had my B12 tested four years ago. I think it was my partner's idea, it wasn't the doctors, that's for sure. It was quite low at 184. I asked the doctor why it was so low. He shrugged his shoulders and moved on. My research on the internet suggested it could be caused by H. Pylori, the bacteria that causes stomach ulcers, so I asked for the test, it was positive. I never stumbled over anything linking ME/CFS and B12.

Taking subligual B12 helped irritability, but not the rest of the illness. Maybe I'm still not taking the proper type of B12. I've tried to read through some of the B12 stuff on the forum, my mushy brain couldn't make much sense of it.

Now that I have had a diagnosis of B12 deficiency, the doctors keep wanting to point to that as my problem, testing it over and over. Of course now the lab tests show everything's fine. As usual, they keep looking for the keys under the lamplight. I wish they'd let me hand them a flashlight so they can look elsewhere...

 

[richvank]

I first had my B12 tested four years ago. I think it was my partner's idea, it wasn't the doctors, that's for sure. It was quite low at 184. I asked the doctor why it was so low. He shrugged his shoulders and moved on. My research on the internet suggested it could be caused by H. Pylori, the bacteria that causes stomach ulcers, so I asked for the test, it was positive. I never stumbled over anything linking ME/CFS and B12.

Taking subligual B12 helped irritability, but not the rest of the illness. Maybe I'm still not taking the proper type of B12. I've tried to read through some of the B12 stuff on the forum, my mushy brain couldn't make much sense of it.

Now that I have had a diagnosis of B12 deficiency, the doctors keep wanting to point to that as my problem, testing it over and over. Of course now the lab tests show everything's fine. As usual, they keep looking for the keys under the lamplight. I wish they'd let me hand them a flashlight so they can look elsewhere...

Hi, jimells.

I think it's possible that the H. pylori interfered with your ability to absorb B12 from your diet, and that caused an absolute B12 deficiency.

That in turn could have brought on a partial methylation cycle block, because your cells were unable to make enough methyl B12 to support the methionine synthase reaction, i.e. a functional B12 deficiency.

That in turn would have caused draining of methylfolate from your cells into the blood, and depletion of glutathione.

Then when you restored the B12 by sublingual supplementation, you corrected the absolute B12 deficiency, but the functional deficiency remained, because glutathione had become depleted, so the partial block in the methylation cycle also remained, together with the glutathione depletion and the drained folates, i.e. the vicious circle mechanism that keeps ME/CFS present as a chronic condition.

In order to correct this situation, you would need to do a methylation-type treatment, which involves supplementing B12 sublingually or by injection at fairly high dosage, while simultaneously taking active folates, at least methylfolate, but preferably folinic acid, also. The current version of the protocol I have suggested is pasted below.

Best regards,

Rich


March 30. 2011

SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROMEMarch 30, 2011 Revision
Rich Van Konynenburg. Ph.D.
(Based on the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

1. General Vitamin Neurological Health Formula [2]: Start with tablet and increase dosage as tolerated to 2 tablets daily
2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
3. MethylMate B [4]: 3 drops under the tongue daily
4. Folinic acid [5]: capsule daily
5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

All these supplements can be obtained from http://www.holisticheal.com.
The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
Phosphatidyl serine can lower cortisol levels. Patients who already have low evening cortisol levels may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
For those allergic to soy, lecithin from other sources is available.
GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

[1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.
[2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
[4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
[5] Folinic acid is 5-formyltetrahydrofolate. capsule is a dosage of 200 mcg.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
[7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.