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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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My multivitamin, which I've been taking for over ten years, has 200 mcgs of selenium, but I can only afford to take 1/3 dose daily, so I am getting about 67 mcgs. I don't eat Brazil nuts and only use a little garlic in cooking once in awhile, so I'm not getting much in my diet. The soil where I live is low in selenium.
I once did the Zhang Protocol for my Lyme Disease for six months, which is loaded with garlic to the point where my husband would not come near me, and my hair did not fall out during that time.
I am glad you figured out what caused your problem and I hope it has stopped.
Freddd, if you are reading this, I did get a chance to examine a hair that fell out tonight under a magnifying glass. It was full length with a little knot-like white thing on one end, which I assume is the root.
I have two reservations:
The first is that the dosages are pretty high. In my experience, people with CFS (PWCs) frequently find that they can tolerate only much lower dosages at first, because of what seem to be die-off and detox symptoms.
The second is that methylcobalamin is one of very few substances in biological systems that is able to react with inorganic mercury to produce methylmercury. Methylmercury can readily cross the blood-brain barrier and enter the brain, where it acts as a neurotoxin and is very difficult to remove.
I am leery of high dosages of methylcobalamin in people PWCs who have been ill for several years, while they had amalgam fillings in their teeth, since they are likely to have accumulated a significant body burden of inorganic mercury while they were inhaling metallic mercury vapor from their fillings, and their glutathione levels were low, so that they could not detox it as well as normally.
I do not have documented proof that this is a problem, but I am aware of two cases in which PWCs who had significant mercury burdens received high-dose intravenous methylcobalamin, and experienced neurological symptoms shortly afterward, which persisted for some time. So I feel the need to express caution about this unless and until it is proven otherwise.
If you would like to compare, the most recent version of the treatment I have suggested for CFS is pasted below.
Note that the folate dosages are at the levels of hundreds of micrograms, and the B12 is at a dosage of 2 milligrams and is the hydroxocobalamin form, rather than methylcobalamin. Some people have had to start with much smaller dosages than those shown, because of the intensity of the symptoms that were provoked.
As I have noted in another post, Freddd's own case is different from those of people who have CFS as defined by the case definitions for it, which state that it is not a lifelong disorder, but is an acquired disorder. According to Freddd's descriptions of his illness, he has an inborn error of metabolism (IEM) that involves one or more mutations in the genes that code for the enzymes that process vitamin B12 within the cells. Based on Freddd's description of his experience, I suspect that he has a mutation in one or more genes that code for enzymes involved in the conversion of glutathionylcobalamin into methylcobalamin and adenosylcobalamin. He has found that he needs to take relatively high dosages of methylcobalamin and adenosylcobalamin to make up for this IEM, and that he cannot tolerate taking glutathione or its precursors. I think that makes sense in terms of the IEM that he seems to have. However, I suspect that very few PWCs have this same issue. While Freddd's treatment may work for them, I think it is sort of an overkill, and I do have the two reservations about it that I have described. I guess some of the people who have CFS are trying it, so we should have more information about how it works for them as time goes on. If I had CFS myself, though (which I don't), I would consider these reservations before deciding whether to try it.
April 18, 2009
SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME (Revised)
(Extracted from the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism )
1. FolaPro : tablet (200mcg) daily
2. Actifolate : tablet daily
3. General Vitamin Neurological Health Formula : start with tablet and work up dosage as tolerated to 2 tablets daily
4. Phosphatidyl Serine Complex : 1 softgel capsule daily
5. Activated B12 Guard : 1 sublingual lozenge daily
All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They 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. They can be taken at any time of day, with or without food.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released 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.
 Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
 FolaPro is a registered trademark of Metagenics, Inc.
 Actifolate is a registered trademark of Metagenics, Inc.
 General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
 Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
 Activated B12 Guard is a registered trademark of Perque LLC
I've done Rich's protocol for nearly two years, though have recently substituted methylcobalamin for hydoxy (the activated B guard). I've not improved, I'm afraid, in fact am currently in my worse relapse ever which has lasted 6 months so far (unlikely to be due to this protocol though).
I got the Folapro and Actifolate from www.nutricentre.com, the B12 Guard from naturalnutrionals.com (couldn't find it in UK), and the phos serine from iherb (much cheaper than in UK). It seems the only place to get the General Vitamin is Holistic Health - it's very expensive and postage to UK was over 20. I think Sarah Myhill may suggest an alternative.
Some people seem to be helped - it's probably worth trying.