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Rich,
Do you (or anyone here) have any suggestions for a stomach acid replacement other than Betaine HCl? I found this one liquid HCl by nutricology but it doesn't seem nearly strong enough, more than a third of a bottle and no burn and poor digestion noted. I typically require 6-7 Betaine HCl tablets per meal.
I'm concerned the high levels of TMG I am consuming may be hindering some of my recovery. I was making strides in Dec 09 with neurological healing - I have two numb toes on each foot and was regaining feeling in each. I started the Betaine HCl and the numbness reversal seemed to stop. I recently tried to switch to the liquid HCl for several days and noted an increase in tingling and feeling in areas that were previously numb - I was trying this due to something I'd read that you wrote about the TMG in the Betaine HCl, though I can't remember the concern, that made me think it would be a good idea to not be taking so much...
Any thoughts from anyone appreciated!
Velha
Hi, freddd.
I'm glad to hear that you are going to give folinic acid a try.
I haven't tested different brands of folinic acid. I extracted the protocol I suggested from Amy Yasko's full treatment program, and she was using Intrinsi/B12/folate from Metagenics, which contained some folinic acid. A little over a year ago, Metagenics changed their formulation, taking folinic acid out of this product, so I then revised the protocol and substituted Actifolate, also made by Metagenics, which includes folic acid, folinic acid, and 5-methyltetrahydrofolate. I did this to keep the protocol as close as possible to the one we ran the clinical study on, so that the results of this study would still be relevant, because I think they are valuable. A significant amount of money was invested to get them.
As I've written before, I can't say that this is the optimum protocol, and I know that you have a very firm view that it is not. But that is the history of it. I selected it to take advantage of the extensive experience Amy had already had, since I had little experience with treatment, having focused on developing a hypothesis for the pathogenesis and pathophyisiology of CFS. I needed a treatment to test this hypothesis, and that's what I selected at the time.
I hope you get some benefit from folinic acid.
Best regards,
Rich
hi Freddd and Rich, i missed the earlier posts regarding this. Can you please restate the context for Freddd's trying this product out. ? I see they do sell it at iherb.
thanks
Rich,
Do you (or anyone here) have any suggestions for a stomach acid replacement other than Betaine HCl? I found this one liquid HCl by nutricology but it doesn't seem nearly strong enough, more than a third of a bottle and no burn and poor digestion noted. I typically require 6-7 Betaine HCl tablets per meal.
I'm concerned the high levels of TMG I am consuming may be hindering some of my recovery. I was making strides in Dec 09 with neurological healing - I have two numb toes on each foot and was regaining feeling in each. I started the Betaine HCl and the numbness reversal seemed to stop. I recently tried to switch to the liquid HCl for several days and noted an increase in tingling and feeling in areas that were previously numb - I was trying this due to something I'd read that you wrote about the TMG in the Betaine HCl, though I can't remember the concern, that made me think it would be a good idea to not be taking so much...
Any thoughts from anyone appreciated!
Velha
Hi DrD,
Somewhere previously, I believe this thread, Rich explained how there is more than one form of active folate used for different purposes, perhaps 2 months ago, and that folinic acid leads to a different form from Metafolin. It sounded reasonable to me and like it was worth a try to see if it improved my folate response. I am putting together my first order since then.
Absolutely critical minimums for basic healing.
Essential, usually needs supplementing
- 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.
- 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.
- 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
I deleted a few of my last posts. I thought it would be wise to go through some of this thread before asking anymore questions.
After checking through the thread a bit more, I dont really see how anything can be fully concluded. There is such a long list of supplements that one would be taking, that improvement may not even be the result of supplemental B12. I mean its entirely possible that many people could feel improvement just taking the Essential + Cofactors (quoted below). My point isnt that the entire treatment plan wont help people, but rather that its hard to see just how much the supplemental B12 plays a role in the polls. I mean this in terms of the number of people who found benefit from this plan.
I could be wrong here, but this is just my viewpoint after reading through more of the thread, checking out the poll, etc. Also both the noticed improvements, and any increase in symptoms, both can be viewed as positive progress.
Again I could be wrong, but it's just my opinion so far.
Freddd, thanks for the link to that forum. I'll definitely check it out.
My skepticism prevents me from having the faith to follow through at this point in time.