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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The only problem with the studies is that they take soooo looong. This study is due to end in 2011. I don't think they ever thought it would take this long. I think its entirely due to the fact that they've had a lot of trouble getting healthy controls do the spinal tap. When I was there they told me that they'd had CFS patients flying across the country on their own dime to take part in the study but they were getting almost no healthy controls on board. They wanted to do 75 and I heard several months ago this was still a big big problem for them.
This may be more of a question for RichVank, but I'm sure others have a good handle on this discovery. This seems to make the case for getting the methylation blood test done so that you can get your strategy for treating a methylation block, if present.
My biggest question is - What would be the best supplements to try that may help reduce these affects from this process if in fact was taking place. Carnosine supplement? Looks like it makes the case for a good anti-oxidant, but which would be better? I already take Klonopin and it definitely makes a difference and in small doses too (I take .25 mg twice a day and .5 mg at bedtime).
Cort - Are you aware of the tremendous potential upset regarding the underlying cause of multiple sclerosis?
Researchers in Italy, with some recent support here in the US, believe that MS is triggered by the blood brain barrier being compromised, resulting in buildup of iron deposits on veins. That then triggers the inappropriate immune response which destroys the myelin sheath and damages the nerve. They believe that many or most MS patients have abnormalities in the major veins that drain the brain and spinal cord - internal jugulars and azygos.
Hi, August59.
I want to emphasize that I have offered the hypothesis that Dr. Baraniuk's observations of misfolded proteins can be explained by glutathione depletion, which is tied to a partial block in the methylation cycle. However, at this point, it's an unproven hypothesis. I just want to make that clear.
With regard to treatment of the partial methylation cycle block and glutathione depletion, I do recommend getting the Vitamin Diagnostics methylation pathways panel run first, to see if these features are indeed present, and to get baseline data for use later in the treatment. Contact info for getting this panel is pasted below.
With regard to treatment, the protocol for the Simplified Treatment Approach is also pasted below. As I wrote there, my position is that it is necessary to work with a licensed physician while on this treatment.
Best regards,
Rich
Methylation Pathways Panel
This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.
The panel requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinicians letterhead.
Available from:
Vitamin Diagnostics, Inc.
540 Bordentown Avenue, Suite 4930
South Amboy, NJ 08879
USA
Phone: (732) 721-1234
Fax: (732) 525-3288
Lab Director: Tapan Audhya, Ph.D.
Dr. Audhya is willing to help clinicians with interpretation of the panel by phone.
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])
SUPPLEMENTS
1. FolaPro [2]: tablet (200mcg) daily
2. Actifolate [3]: tablet daily
3. General Vitamin Neurological Health Formula [4]: start with tablet and work up dosage as tolerated to 2 tablets daily
4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
5. Activated B12 Guard [6]: 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.
[1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
[2] FolaPro is a registered trademark of Metagenics, Inc.
[3] Actifolate is a registered trademark of Metagenics, Inc.
[4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
[6] Activated B12 Guard is a registered trademark of Perque LLC.