Treating Chronic Fatigue Syndrome (ME/CFS): B12 Treatment – A New Approach by Fred
I have divided up the vitamins and supplements in several categories. When brands are mentioned, they are essential as we have performed effectiveness tests and some brands don’t work at all, a few work very well and most are mediocre. Some products are unique. These are for trying to maximize the probability of healing.
Critical for Basic Healing.
- Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
- Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
- Solgar Metafolin 800mcg
- Jarrow B-Right b-complex, 1 capsule twice a day
- Potassium, your choice of brand and form – this is insurance against hypokalemia triggered by sudden healing and potentially fatal – if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of “normal” range, 3.5-4.0 as I do.
- Omega3 fishoils – essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.
Essential Co-Factors
- Zinc – 50 mg
- Calcium/magnesium supplement
- D – 3000-5000 IU total
- A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
- Vitamin E, NOW Foods Gamma E complex
- Vitamin C – 4000+mg/day
Possibly Critical Showstopper Cofactors – Add after initial stages, any number of these in any combination may be required for maximum effectiveness or in some cases to work at all effectiveness or in some cases to work at all
- SAM-e – 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood
- TMG – enhances SAM-e, methylb12, l-carnitine
- L-carnitine fumarate (acetyl might work better for some), works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood
- Alpha Lipoic Acid – enhances l-carnitine and adenosylb12
- D-Ribose – enhances adenosylb12, l-carnitine, alpha lipoic acid, improves exercise recovery and energy
Additional possibly helpful cofactors
- Selenium
- Lecithin
- Chromium GTF
- many other supplements
Things to avoid
Glutathione and glutathione precursors such as NAC and glutamine, undenatured whey. The glutathione induces immediate active b12 deficiencies, apparently by converting active methylb12 to inactive glutathionylb12 and rapidly excreting it.
The Case For Sublinguals
I consider the injection of large doses of methylb12 to be at the end of a gradual phasing in process and only when certain type of symptoms remain. To start with the large doses injected right off you lose much necessary information and are unable to see if the person does in fact react as if they have the separate CSF cobalamin deficiencies. It can provoke the most extreme combined startup reactions.
With a sublingual, the increasing effect levels off within minutes of spitting it out or chewing and swallowing. The startup reactions to adenosylb12 and methylb12 can be separated. The increased methylation capacity startup can be handled separately. And finally, the body deficiency startup can be handled separately, to some extent, depending upon the person, from the CNS startup reactions.
As we have indentified very effective brands of methylcobalamin and adenosylcobalamin sublinguals and have calibrated them by absorption percentage by time in contact with tissues compared to injectable methylb12, there is no need for injections of any size to have a reasonably controlled dose. A definite titration schedule can be designed to minimize startup effects but also not to stretch them out indefinitely.
Sublinguals are a tiny fraction of the price, don’t need refrigeration, have no infection risk and are not fragile like injectable methylb12. And, like many people, I don’t really like poking needles into myself or having others do it either. Photolytic breakdown of methylb12 produces hydroxyb12 which is completely ineffective for 20-40% of people. In the rest it doesn’t provoke neurological healing in the same way as methylb12.
(Fred , a former and ME/CFS patient has developed a theory which suggests that a significant subset of ME/CFS patients have a hidden Vitamin B12 deficiency not treatable by standard B12 injections. This is presented for informational purposes only. Fred is not a medical professional and his proposal has not been evaluated by a medical professional; please confer with your medical professional before starting any treatment regime based on his ideas)