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Short term relief from B12 shots - real relief or placebo?

Messages
27
Location
Cornwall, UK
Thanks again ahmo - I appreciate your input. I'm waiting for the supplements to arrive but in the meantime I have 10 x 1ml hydroxo injections. I'm going to use them to get back to where I was after the loading doses and see what happens if I switch over to the supps. I've been taking methyl sublinguals for weeks now and am seeing no effect whatsoever. Maybe the addition of the adnesylcobalamin or whatever it's called will make a difference but if not I may just stick with the hydroxo injections because I saw such a change with them.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Truth eh? Great, where can I buy that? :D
You're buying it every time you follow your symptoms and getting to know what your body needs/responds to. I strongly recommend learning muscle testing from one of the many youtube vids. It seems mystifying at first, but if you continue with it, you'll gain confidence and you'll have an excellent way of communicating with your body. I couldn't have managed without. cheers Hildergard. ahmo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thank you. What does this mean?

"frequent mb12 deficiency co-correlate"

And how does that list relate to what I should take??

It's all very confsing. I'm starting to wish I hadn't ordered various supplements and just bought hydroxo injections. It's great that there's all this information but does it all have to be so confusing? There must be a simpler way of writing it all down.

Hi Hidergard,

What does this mean? "frequent mb12 deficiency co-correlate"

That was written almost 4 years ago. At that time I would have called "congestive heart failure" as a "frequent mb12 deficiency co-correlate" also. Now that I have recovered and with nearly 4 more years of hindsight I will tell you what that means. Those symptoms or conditions are due to damage of multiple deficiencies of the deadlock quartet. So with the anxiety I see the symptoms as characteristic of the limbic system damaged by other deficienciencies of the deadlock quartet and it takes all 4 to be healed as much as possible. The pure b12 deficiencies are correctable with MeCbl starting methylation (assuming not deadlocked elsewhere) whereas the other items need ATP startup also. I would be inclined to think that a biological marker for the other co-correlates would be MMA and require carnitine of the correct type to correct. The AdoCbl deficiencies are separately marked. The co-correlates are frequently there but are not repaired by MeCbl, Methylfolate and AdoCbl. The LCF (or ALCAR for 10% or so) does something very specific, it causes neuroblast proliferation, osteoblast proliferation, mitochondria proliferation and muscle regrowth among other things. The damage, as opposed to functional items, needs the carnitine to heal if that is deficient.
 
Messages
27
Location
Cornwall, UK
See @Fredd, I don't understand a word of that. I still don't know what co-corelates are or what this dreaded deadlock quartet is. I think this is a great protocol for people who have scientific understanding but I don't so I only understand about one in five words. I've been taking a tonne of methylcobalamin and nothing's ahpopoened. Not one tiny thing.

Re the edema - yes. I have had horrific edema for years. It got a load better after the hydroxo shots and the initial weight gain went (to be replaced by massive christmas related weight gain but that's understandable). At some points pre- hydroxo shots my calves went in a straight line right down to my ankles and my feet were s swollen I couldn't move my toes. I could never get a doctor to take it seriously.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
See @Fredd, I don't understand a word of that. I still don't know what co-corelates are or what this dreaded deadlock quartet is. I think this is a great protocol for people who have scientific understanding but I don't so I only understand about one in five words. I've been taking a tonne of methylcobalamin and nothing's ahpopoened. Not one tiny thing.

Re the edema - yes. I have had horrific edema for years. It got a load better after the hydroxo shots and the initial weight gain went (to be replaced by massive christmas related weight gain but that's understandable). At some points pre- hydroxo shots my calves went in a straight line right down to my ankles and my feet were s swollen I couldn't move my toes. I could never get a doctor to take it seriously.


Hi Hidergard,

Ok, lets move back to basic definitions. Co-correlate - Basically all I am saying is that it happens a lot when a person is B12 deficient but that b12 alone doesn't cause it or fix it. So for instance, a burning "beef-red" tongue is a b12 deficiency symptom and MeCbl fixes it typically within a couple of weeks until a person becomes deficient again.

"correlation is not causation" - The things happen together. Several things that happen together but without causality are "co-correlates".

The "deadlock quartet" is a set of 4 nutrients, AdoCbl, MeCbl, L-methylfolate and L-carnitine fumarate. Basically it means that any one item of the four can stop the same set of hundreds of reactions in the body causing hundreds of symptoms including possibly your edema. It sure caused mine.

If you are taking a "tonne of methylcobalamin" and nothing happened there are many possible reasons including the wrong brand, the wrong method, lacking AdoCbl, lacking l-methylfolate, lacking L-carnitine fumarate or lacking any of more than a dozen other things. Edema is suggestive of methylfolate deficiency but it could also be caused by other things.

When I got the right balance of all 4 of the deadlock quartet and some other items, I lost 85 pounds of water, 60 pounds of fat and put on 50 pounds of muscle; recovered from CFS, FMS and congestive heart failure.
 
Messages
27
Location
Cornwall, UK
Thanks for that, it makes more sense now. I've got some methylfolate on the way soI'll try that. I couldn't get L-carntine fumarate on the high street so I guess I'll have to order that online too. I'm still quite attached to the hydroxo because it gives me clear and measurable relief. I've just started self injecting - basically because the hydroxo and needles arrived before the supplements - and am seeing a real difference after only two injections. I had a horrible depression descend on me over christmas and the first thing I noticed (both times) with the hydroxo was a lifting of my mood.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks for that, it makes more sense now. I've got some methylfolate on the way soI'll try that. I couldn't get L-carntine fumarate on the high street so I guess I'll have to order that online too. I'm still quite attached to the hydroxo because it gives me clear and measurable relief. I've just started self injecting - basically because the hydroxo and needles arrived before the supplements - and am seeing a real difference after only two injections. I had a horrible depression descend on me over christmas and the first thing I noticed (both times) with the hydroxo was a lifting of my mood.

Hi Hildergard,

The good news on that is that it sounds like the hydroxyl is doing you some good. You will probably need potassium on hand for after you start the methylfolate as cell reproduction gets going at higher speed. That can cause a person to feel real sick if things get going well so the potassium is needed for an induced low potassium condition. Good luck.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I have a positive response to b12 too but PEM keeps me from enjoying the benefits for more than 1-3 days.

I'd look at Dr Wahls info on healing. She recognizes that our bodies need a variety of nutrients to heal and function and recommends getting these mostly from foods. Nutrients can't always be bottled.

My brain lesions, ataxia, etc vanished when my energy was low, still is, and my b12 was in the 200 range. I couldn't digest supplements at that time so I don't buy into the supplement hype.

I'm a celiac tho so my recovery post gf diet was expected to some degree. Elisabeth Hasselbeck's story explains this but other sources do too.

Basically the idea is to eliminate toxins and add nutrients so your body can heal itself.

good luck. x
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have a positive response to b12 too but PEM keeps me from enjoying the benefits for more than 1-3 days.

I'd look at Dr Wahls info on healing. She recognizes that our bodies need a variety of nutrients to heal and function and recommends getting these mostly from foods. Nutrients can't always be bottled.

My brain lesions, ataxia, etc vanished when my energy was low, still is, and my b12 was in the 200 range. I couldn't digest supplements at that time so I don't buy into the supplement hype.

I'm a celiac tho so my recovery post gf diet was expected to some degree. Elisabeth Hasselbeck's story explains this but other sources do too.

Basically the idea is to eliminate toxins and add nutrients so your body can heal itself.

good luck. x

Hi Xchocoholic,

It took me several years after adding all 4 of the deadlock quartet to get rid of PEM. It healed. I have had no trace for 5 years. AdoCbl and LCF are major factors in that as well as MeCbl and methylfolate. So how is PEM stopping you?

A b12 serum level of 200 would suggest hundreds of symptoms are possible and hundreds of things wrong with the body.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi @Freddd,

Imho, several years of anything doesn't conclude that it worked.

My ataxia didn't resolve until 1 year post gf diet which is what Dr Hadjivassilou tells his patients to expect. If I'd been taking something I might have concluded that was why.

Those of us who've improved via diet can see this clearly.

That was pretty much my point in my last post on this thread.

I made the mistake of taking sleep aids nightly for appr 6 years so my recovery as interrupted due to daytime drowsiness. Duh !

tc .. x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I took the supplements you're recommending for 1-2 years. My labs came back waaay above normal. That was enough to convince me that I didn't want to push nutrients via supplements. I'm currently using foods, including juicing, for nutrition.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I took the supplements you're recommending for 1-2 years. My labs came back waaay above normal. That was enough to convince me that I didn't want to push nutrients via supplements. I'm currently using foods, including juicing, for nutrition.


Of course they did. The "normal" range is based on a population with half or more having chronic deficiency symptoms, and usually a statistical abstraction rather than the peak of effectiveness or asymptomatic of deficiency symptoms or anything like that. My doctor once said "I have never before seen such a sick 'normal' person" in regard to my labs. None the less I was more than a decade (started about 4 years after methyltrap) into congestive heart failure, 16 years into CFS, 25 years into FMS and a lifetime of partial methylation block illnesses. There are millions and millions like me. And so are all the variations in tests accounted for these developing diseases so we can look "normal" while dying. MeCbl, AdoCbl, l-methylfolate and l-carnitine fumarate deficiency symptoms biochemistry are included in "normal" on most all tests. Of the hundreds and hundreds of changes, they don't generally tie them to the cause and are not in most tests.

Getting a serum cobalamin test can't predict sufficiency and is interpreted such in the USA that the house is already burned down. Same with uMMA and Hcy, there can be a lot of damage before these become alertable. The other hundreds and hundreds biochemical changes are not tested for. Then there are the methylation etc tests, specialized ones, and they might be better after they learn more about interpreting them. So you sure appear have a lot more faith in the test results than I do. It can take neurological things years to heal after the last needed item is present. The muscular and mitochondrial recovery can take years after the last needed item is present. That layer of healing can be the second or third most difficult to turn on, after CNS and sometimes peripheral neuropathies and cardiac. Good luck. I tried the food route for decades. I did a 3 year 100 tablet daily trial of desiccated liver. That is 35 grams, equivalent to about half a pound or more of wet liver. It took six months to make a very fragile difference that was wiped out for 6 more months each time I got sick which was multiple times per year. Tens times as much might really have helped. I hate liver and liver burps from desiccated liver. Then the supply at several resellers all became moldy. I gave up on it. Good health.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
@Freddd,

I heard how inaccurate this test was but that wasn't my experience.

My docs tracked my progress and my levels went from 200? to 500? to 700? to past whatever the highest possible was. That was over a period of 1-2 years of supplementing. I used Metagenics vessel care at first but switched to mb12 and adb12 towards the end.

My labs were enough to convince me that supplementing would bring my b12 levels up but that didn't translate into symptom reversal. I had elevated lab results to other supplements that I was taking too.

I've had quite a bit of testing and supplemented in the areas I was deficient in.

Most of my symptoms faded per dietary restrictions but I'm a celiac with neurological reactions to gluten. I believe we're better off reducing inflammation and providing proper nutrition to help our bodies heal. At this point, I just can't see supplements as a safe or effective alternative to all the nutrients found in healthy foods.

Good luck to you too. X
 
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Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd,

I heard how inaccurate this test was but that wasn't my experience.

My docs tracked my progress and my levels went from 200? to 500? to 700? to past whatever the highest possible was. That was over a period of 1-2 years of supplementing. I used Metagenics vessel care at first but switched to mb12 and adb12 towards the end.

My labs were enough to convince me that supplementing would bring my b12 levels up but that didn't translate into symptom reversal. I had elevated lab results to other supplements that I was taking too.

I've had quite a bit of testing and supplemented in the areas I was deficient in.

Most of my symptoms faded per dietary restrictions but I'm a celiac with neurological reactions to gluten. I believe we're better off reducing inflammation and providing proper nutrition to help our bodies heal. I just can't see supplements as a safe or effective alternative to all the nutrients found in healthy foods.

Good luck to you too. X


My docs tracked my progress and my levels went from 200? to 500? to 700? to past whatever the highest possible was. That was over a period of 1-2 years of supplementing. I used Metagenics vessel care at first but switched to mb12 and adb12 towards the end.
My labs were enough to convince me that supplementing would bring my b12 levels up but that didn't translate into symptom reversal. I had elevated lab results to other supplements that I was taking too


It takes LCF and L-methylfolate and even then the balance is tricky, no NAC, no glutathione, not too much b1, b2, b3 and who knows what else. It's about getting healing started and maintained, about titrating to peak performance, not about numbers on a test. It isn't some arbitrary amount. It's about doing the testing on ones self to determine where the sweet spot of healing is.

You can't possibly have "highest possible b12" CORRECTION - ""Past the highest level of b12".. They don't give results above about 1100pg/ml. It takes 100,000pg/ml for me to go into neurological healing.
 
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xchocoholic

Senior Member
Messages
2,947
Location
Florida
@Freddd,

I said "Past the highest level of b12". Off the chart. After showing steady increase.

Imho, so many nutrients that are found in foods can't be obtained via supplements
and we need these to work in unison. imho, Dr Wahls explains this very well.

I'm not interested in continuing this conversation because you sound like you're angry.

tc ... x