hi all. i'd be grateful for any advice/comments. i have ME/CFS for some yrs. i commenced on a protocol called the Sinatra Protocol some 1/2 yrs ago(CoQ10/magnesium/b3/d-ribose/L-carnitine). my environmental Doc added b12 to the protocol about 12 months ago. i had a wonderful response from the hydroxycobalimine once i added folic acid. my folate levels were low. it took some time for the good results to happen.
however, the response from the hydroxyCo/B has diminished massively with the return of old symptoms i.e. swallowing difficulties/persistent chest pain/marked cheilitis/irritability etc) my Folate levels went from 'low' when measured about 8 months ago to 20 (4.6- 18) presently. i was taking 800 mcg daily. standard cardiology test were NAD. i have just completed a course of antibiotics. the b12 symptoms have exacerbated measurably post the infection/Antis.
i've been reading up on what maybe causing this diminished response from b12 & wondering if there is anything i can do to correct it.
1)if it's an auto immune response to TC11, would it help if i changed to Methyl b12? btw, i have lots of auto-immune stuff from IBS to multiple food sensitivities etc.. there's a family history of PA. my PA & tests were neg.
2) i have previously tried transdermal 'Adenosyl/Mthyl'. after an initial short lived marginally positive response, it made me very, very groggy/drowsy & sleepy without sleeping.
3)i've read in a post from the 'Phoenix Rising' - an ME/CFS forum, that taking more than one type of b12 @ any one time can interfere with the absorption of active b12 through the cell wall thus negating the b12 effects. as my fuzzy brain has returned, i have difficulty explaining the nitty gritty details/mechanisms as outlined in that particular Phoenix Rising post.
4)any comments/insights on the high Folate levels also welcome?
anyhow, i'd be most grateful for any input.
much thanks in advance
H.
Written by
Hidihi
To view profiles and participate in discussions please or .
Suggest you try investigating MTHFR - problems with methylating certain vitamins - including B12 and folate (B9) - problems vary depending on the gene variation. You may have a problem methylating folate - would leave levels in blood high but you wouldn't be able to use them
Switching form of B12 unlikely to help if you have an autoimmune response to high levels of B12 in blood - I suspect the answer depends on what level kicks in the autoimmune response - sometimes lower doses work but for others (include myself in that bracket) continuous high doses seem to be the thing that does the trick.
If you don't have an absorption problem then may be worth trying a different form of delivery (assuming that you are getting injections) - as these give a large initial spike which is more likely to trigger the autoimmune response. Won't be the same with tablets, sublinguals ... though there will be a spike with nasal, but not as pronounced.
Would be interested in seeing article about different forms of B12 interacting badly if you could find the link.
below is the info ( a response to why questions about tapering out/ diminishing response from b12. it's from the 'phoenix Rising' forum.
1. taking an inactive b12, either cyanob12 or hydroxyb12. The research validating their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesnt work, oh well, thats the accepted therapy. There is no dose proportionate healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzyme
2. They take active b12 as an oral tablet reducing absorbtion to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.
3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorbtion back to that same 1% and limited to binding capacity. With sublingual tablets absorbtion is proportionate to time in contact with tissues. I performed a series of absorbtion tests comparing sublingual absorbtion to injection via hypersensitive response and urine colorimetry.
4. Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
5. For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesnt work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.
6. They dont take BOTH active b12s.
7. They dont take enough active b12s for the purpose.
8. Lack of methylfolate
9. Folic acid is taken which can block at least 10 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
10. Folinic acid is taken which can block at least 10 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
11. Lack of other critical cofactors.
12. Lack of basic cofactors
13. Glutathione, glutathione direct precursors or NAC is taken causing what is often called "detox" while actually being induced folate and b12 deficiencies.
Have to say that 1. doesn't really accord with my personal experience but then I don't have ME. Hydroxo works very well for the majority of my symptoms - though left with some neuro symptoms. If I only take methyl then my neuropsychiatric symptoms come back (have come across a few people who seem to be in the same boat) - which on one level makes absolutely no sense as hydroxo can't cross the blood/brain barrier but methyl can ... so obviously a lot more to it than just the form.
I currently use a mix of hydroxo, methyl and adrenyl. The adrenyl has certainly given me a lot more range of motion in my foot and a bit more feeling - not really sure what is going on with the range of motion as that doesn't really seem to correspond to correcting nerve damage so quite possibly some other things going on.
Think the reality is that people respond very differently to different forms of B12 and the only way to know how you are going to respond is to try ... but medics aren't prepared to do that for the most part.
Hi Gambit. that's a very interesting response to the addition of the 'adrenyl' (AD) supplementation. perhaps it's the combination of all 3 that forces the b12 through the cell keyhole/lumen to activate the repair process. how long did it take to see the difference? you must be delighted with that progress? as a matter of interest are both ankles affected? and do u use equal measures of each of the b12's or do u follow a particular ratio?
i agree that experimentation is the only way to find out what approach works best. tbh, i have no intention of trying to get my GP to understand the vagaries of individual responses to b12. her comment to my suggestion, that perhaps the b12 in my blood stream wasn't actually getting into my cells was - ''oh i've never heard that before'' -. the energy expenditure would be massively depleting. whilst kind, my Doc's v. much of the ''Doc knows best'' school of medicine.
Hydroxo took 2-3 weeks to get me from problems with balance to being happy perching at the top of a ladder - but that is using a nasal spray 3-4mg a day. (pretty sure I have autoimmune issues so need to keep levels really, really high)
Took 3 months to notice that depression and anxiety had gone.
Started experimenting with methyl at some point last year - took just the methyl which gave me more feeling in the foot but after one week I was starting to notice all the neuro-psychiatric problems so started using both at that point.
Been using the adenosyl on top of the others now for about 3 weeks - improvement in mobility in foot was a couple of days.
hi lorrainec. thank u for response. i've been low in thyroxine x 20 yrs. 6 months ago my T3 was checked & was found to be low. my Levothyroxine 100 micros was increased by o.25 micros grams' however the T4 shot up out of range. Doc reduced back to 100 micros. a phone msg from the Doc (post recent test) says 'thyroid test' fine.
Just a thought, as SBunny has already said, antibiotics deplete B12 and maybe this has unbalanced the B12/folate?
You need ample B12 for the folate to work, otherwise it's trapped and can't be used.
PS My sister was misdiagnosed with ME for years and, (at one time in a wheelchair) It turned out to be severe B12 deficiency. She is now almost completely recovered but it has taken a year of fighting to get monthly B12 injections, plus supplementation with Jarrows 5000 mcg. SL.
Martyn Hooper spoke in the House if Lords this year about thousands of PA/B12 sufferers misdiagnosed as ME/CFS.
thank u Polaris. hope your sister has come to terms with the unnecessary lost years. i'm pleased to hear that she's won the battle to get the b12 on script. that must have taken some effort.
i am now convinced that i got the ME (infections etc) because of low b12. there's a moderately strong history of PA in my family. i simply didn't make the connection, until i made such progress on b12 injections suggested by an Environmental ME Doc. however, i think, a lot of damage has been done over the years & my body seems to reject almost everything i put into it these days - auto immune probs. as Gambit etc have suggested, i'll have to experiment to see what i respond best to. at the moment, all my symptoms have returned, so i'm really struggling & disheartened. the chelitis is so bad as it's embarrassing to be seen in public. que sera sera.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
advice please b12/folate 
Folate levels
Folate and B12 levels recent blood test results
High B12, High Folate, High MCH
