I had some pretty bad POTS for about a month, and it recently went away when I went back to the B12 I'd been taking before it started. Before and after the bad POTS I was on sublingual 10mg hydroxyB12 tablet usually 3 times per day (every 4-5 hours starting when I wake up). During my bad POTS period, I was on 1mg hydroxyb12 sublingual drops twice a day.
Can the amount of B12 I took (2mg versus 30mg) affect POTS symptoms? Or could the 30mg daily create a withdrawal affect when I went down to 2mg? Or is it just complete coincidence?
Hi, Valentijn.
I think it's very possible that the higher dosage of B12 corrected your POTS. As I've posted in the past, I think the causes of POTS in ME/CFS can be traced back to the vicious circle involving a partial block in the methylation cycle. B12 helps to lift this block. If you were to follow a more complete methylation protocol, including active folate in addition to high-dose sublingual B12, you might experience more complete improvement.
I favor running the methylation pathways panel, which is offered in the Netherlands by the European Laboratory of Nutrients, to see if there is a partial methylation cycle block, and following a methylation treatment protocol if there is.
Below is something I have posted in the past about POTS, and also the protocol I have suggested.
Best regards,
Rich
In my view, there are three things that occur in CFS that are likely contributors to POTS:
1. The total volume of blood in the body is often lower than normal. This likely results from a "mild" diabetes insipidus (not the same as diabetes mellitus) which is often present in CFS. This in turn is caused by lower than normal secretion of antidiuretic hormone (ADH) by the hypothalamus/pituitary. In my hypothesis, this is caused by glutathione depletion in these organs. The low ADH secretion causes the kidneys to dump too much water from the blood into the urine, and that lowers the total blood volume. People with diabetes insipidus have high 24-hour urine volumes (sometimes much higher than the normal average of 1.5 liters per day), and they have constant thirst. They drink a lot of fluids, but can't keep up with the loss of water into the urine, so they run at lower than normal total blood volume all the time. The osmolality (depends on concentrations of solutes, including the electrolytes) of the blood is higher than normal, and the osmolality (and specific gravity) of the urine is lower than normal.
The low total blood volume causes the venous return of blood to the heart to be lower than normal, and that lowers the stroke volume, since the heart can pump out only what it receives. The cardiac output (the product of the stroke volume and the heart rate) is particularly lowered when standing, because of the additional effect of gravity. Low cardiac output prompts the autonomic nervous system to speed up the heart rate in an effort to raise the cardiac output and deliver more blood when standing, and that constitutes POTS.
2. Most people who have CFS have dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis. This causes the cortisol output to be abnormal, usually too high in the early part of the illness, and then dropping down to be too low later in the illness. This interacts with the secretion of adrenaline (epinephrine), and noradrenaline (norepinephrine). Among other things, these hormones control the operation of the heart and the circulatory system. This dysfunction may also contribute to POTS. In my hypothesis, this dysfunction is also due to glutathione depletion in the hypothalamus and pituitary.
3. Many people with CFS have diastolic dysfunction of the heart. This means that the main pumping chamber of the heart (the left ventricle) does not fill with enough blood during the diastolic phase of the heart's cycle, and that also limits how much blood is pumped out (stroke volume). A low stroke volume again prompts the autonomic nervous system to speed up the heart rate in order to raise the cardiac output. Diastolic dysfunction is caused by too low a rate of supply of ATP to the heart muscle cells by their mitochondria. In my hypothesis, this is caused by glutathione depletion in the heart.
The bottom line is that glutathione depletion can explain all of these aspects as well as many more aspects of CFS. In recent years, we have found that the glutathione depletion in CFS is linked to a dysfunction in the methylation cycle, and that lifting the partial block in the methylation cycle will restore glutathione and correct many of the aspects of CFS. If you want to read more about this, you can find information at
http://aboutmecfs.org.violet.arvixe.com/Trt/TrtGSHIntro.aspx
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.
