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

[Hildergard]

Hi - I managed to convince my GP to try giving me B12 shots. I had the six loading doses (last one 11 days ago) and was expecting her to follow the protocol for people with neurological involvement - i.e 1mg every other day till neurological symptoms stopped improving then once every two months. However, she started me on the protocol for NO neurological involvement i.e. six loading does then every three months. She is now saying she's stopping treatment altogether. I've had several phone calls with her and she's been talking to a neurologist who has said that if the neurological symptoms don't disappear within the first six doses then B12 isn't the issue.

My B12 serum was 257 so it's proving very difficult to get them to even accept that it's an issue. I've asked for MMA and Homocysteine tests and to be referred to a haematologist but am getting nowhere. I'm having my intrinsic factor tested this week as it seems that it was the one antibody test the neurologist I saw didn't bother doing.

Anyway - getting to the point I noticed real relief from symptoms during the loading dose phase - I had a burst of physical energy and mental clarity after the first one, then I started feeling fluey for a few days and by the third one I noticed my breathlessness had gone, I had a massive lift in mood and my stamina was much improved. The feeling that I had a lump in my throat disappeared and I felt like I had the prospect of a life again.

However, only 11 days later and the breathlessness is coming back, my muscles are weak, I feel much less motivation and I'm getting low in mood and paranoid. I'm also having difficulty swallowing properly again. Could it be that the B12 was working as a placebo? Should these symptoms be coming back only 11 days after the loading doses?

I'm taking a Potassium supplement as I noticed that my heartbeat was a bit fluttery and I had chest pains and muscle weakness while I was having the B12 shots.

I'm sorry if this post is all over the place. My brain fog is coming back

ETA - She keeps saying that it's all probably 'just' the M.E/CFS/Fibro and that makes me feel a range of emotions - none of them positive.

 

[Hildergard]

Alo, I've gained about 8lbs since I started the loading shots. Is that normal??

 

[PennyIA]

I had that same short-term benefit from B12 shots as well. My shots were cyanocobalamin, and my reaction was in part the reason I broke down and got tested for MTHFR. I'm fairly certain I'd have better luck with mehtylcobalamin shots, but can't get anyone to prescribe them to me - so I'm taking sublinguals. They don't work as well for me as the short-term benefits of the B12 shots... but once I had ramped up enough on methylfolate I had better luck.

 

[Freddd]

Hi - I managed to convince my GP to try giving me B12 shots. I had the six loading doses (last one 11 days ago) and was expecting her to follow the protocol for people with neurological involvement - i.e 1mg every other day till neurological symptoms stopped improving then once every two months. However, she started me on the protocol for NO neurological involvement i.e. six loading does then every three months. She is now saying she's stopping treatment altogether. I've had several phone calls with her and she's been talking to a neurologist who has said that if the neurological symptoms don't disappear within the first six doses then B12 isn't the issue.

My B12 serum was 257 so it's proving very difficult to get them to even accept that it's an issue. I've asked for MMA and Homocysteine tests and to be referred to a haematologist but am getting nowhere. I'm having my intrinsic factor tested this week as it seems that it was the one antibody test the neurologist I saw didn't bother doing.

Anyway - getting to the point I noticed real relief from symptoms during the loading dose phase - I had a burst of physical energy and mental clarity after the first one, then I started feeling fluey for a few days and by the third one I noticed my breathlessness had gone, I had a massive lift in mood and my stamina was much improved. The feeling that I had a lump in my throat disappeared and I felt like I had the prospect of a life again.

However, only 11 days later and the breathlessness is coming back, my muscles are weak, I feel much less motivation and I'm getting low in mood and paranoid. I'm also having difficulty swallowing properly again. Could it be that the B12 was working as a placebo? Should these symptoms be coming back only 11 days after the loading doses?

I'm taking a Potassium supplement as I noticed that my heartbeat was a bit fluttery and I had chest pains and muscle weakness while I was having the B12 shots.

I'm sorry if this post is all over the place. My brain fog is coming back

ETA - She keeps saying that it's all probably 'just' the M.E/CFS/Fibro and that makes me feel a range of emotions - none of them positive.

Hi Hildergard,

HyCbl is a pseudo vitamin. It is 1% as effective as MeCbl and AdoCbl. If you want neurological healing, these with L-methylfolate and L-carnitine fumarate plus other cofactors are the answer. I speak from massive experience.

http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/
Read my posts describing the levels near the beginning and the lists of symptoms by nutrients towards the end, 6 posts of those I think. Then lets talk about it and you ask what remaining questions you have.\


The Enzymatic Therapy MeCbl is more effective and reliable than most injections except for the very best MeCbl prepared under light free conditions. Light breaks it down to HyCbl which compared to MeCbl/AdoCbl is all but totally worthless for healing neurology.

 

[Sushi]

Hi Hildergard,

HyCbl is a pseudo vitamin. It is 1% as effective as MeCbl and AdoCbl. If you want neurological healing, these with L-methylfolate and L-carnitine fumarate plus other cofactors are the answer. I speak from massive experience.

http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/
Read my posts describing the levels near the beginning and the lists of symptoms by nutrients towards the end, 6 posts of those I think. Then lets talk about it and you ask what remaining questions you have.\


The Enzymatic Therapy MeCbl is more effective and reliable than most injections except for the very best MeCbl prepared under light free conditions. Light breaks it down to HyCbl which compared to MeCbl/AdoCbl is all but totally worthless for healing neurology.

@Hildergard

Did you say what form of B12 you are having injected?

Different doctors prefer different forms of B12. Cyanocobalamin is inactive (it has to go through many transformations to become active and many of us are unable to do this for genetic reasons) and it has cyanide as a break down product, so, even though many doctors use it for injections, those who have studied methylation are likely to choose another form.

Some doctors prefer hydrox B12 and some prefer methyl B12--each with their own good reasons. If you had your genetics, it would help determine which would suit you better. Many of us here use B12 in a sublingual or injected form long term--can you revisit this with your doctor?

Best wishes with this.

Sushi

 

[Hildergard]

Hi - thanks for the replies. Fredd, I have to admit that I read your protocol but no matter how many times I read it I just feel like there's bees in my head. I'm dyslexic so it takes me ages to work out written informaiton. I'll keep trying though.

Sushi - it's Hydroxo. I'm having an intrinsic factor test done today so I expect I'll have to wait till after the holidays for the results of that. I'm seeing the GP tomorrow to lay it all out in a straightforward way because I think she's been confused by the specialist who obviously doesn't like uppity patients interfering in their own care.

I could actually live with most of the neuro symptoms but I want my energy back. My disability benefit has just been cut so I need to be well enough to work.

 

[ahmo]

@Hildergard, this might help you w/ the protocol. A very nicely organized FAQ: http://howirecovered.com/active-b12-therapy-faq/

 

[Sushi]

@Hildergard

If you tag people like this, we'll get a notice that you replied to us. Other wise we might miss it.

Thanks,
Sushi

 

[Freddd]

Hi - thanks for the replies. Fredd, I have to admit that I read your protocol but no matter how many times I read it I just feel like there's bees in my head. I'm dyslexic so it takes me ages to work out written informaiton. I'll keep trying though.

Sushi - it's Hydroxo. I'm having an intrinsic factor test done today so I expect I'll have to wait till after the holidays for the results of that. I'm seeing the GP tomorrow to lay it all out in a straightforward way because I think she's been confused by the specialist who obviously doesn't like uppity patients interfering in their own care.

I could actually live with most of the neuro symptoms but I want my energy back. My disability benefit has just been cut so I need to be well enough to work.

Hi Hildegard,

I could actually live with most of the neuro symptoms but I want my energy back

You need to understand the stakes you are playing for here. Neurological damage is caused partly by lack of ATP production in the mitochondria of the brain. For your neurology to heal you have to first restore the energy production. L-carnitine and AdoCbl and MeCbl and l-methylfolate is needed for neuroblast formation for growing neurons.

Then it is AdoCbl and L-carnitine fumarate for the mitochondria. Of course you also will need to have MeCbl and l-methylfolate so the whole thing doesn't deadlock from lack of methylation. It is a 4 way deadlock. If you are paying for it, an IF test is really a waste of money in my opinion. No matter what the results it makes no difference to what will might heal all the deficiency symptoms. Often with neurological damage, the longer it's there the less of it heals and the rest is maintained in an equilibrium, in some degree of remission. The IF testt might tell you why you are having problems originally. The fix is the same. Replace it.

The AMA went to war against doctors injecting patients who asked for it because of effectiveness with CyCbl in the 50s because they were sure that people who had noticeable reactions to CyCbl were having "placebo" effects and so should be denied treatment. They were sure of it because people who do succeed at noticing HyCbl or CyCbl effects usually wear them out quick enough as they exhaust their capacity of enzyme, ATP or methylation capacity. HyCbl is 100% dependent upon having enough available enzyme and ATP which are dependent upon having a working methylation capacity.

HyCbl typically will make 50%-90% of the active b12 deficiency symptoms worse over some months and makes startup worse when it happens when a person finally gives up on this pseudo vitamin. It never fulfills the full need for either AdoCbl or MeCbl. It is approximately 1% as effective as AdoCbl and MeCbl, if you are lucky. The neurological symptoms will keep worsening until they destroy your life. It is a horrid thing to continue to have neurological damage or even worsen it by taking HyCbl or CyCbl. One study of older people diagnosed with Alzheimer's found that 41% of the people so diagnosed, in the study actually had b12 deficiency dementia. B12 deficiency in the long run makes for irreparable damage to your brain and spinal cord.

Megaloblastic madness (psychosis caused by b12 deficiency damage) is the "most florid psychosis known to man". Of course nowadays, they stop the enlarged red cells with HyCbl or CyCbl while the brain continues to deteriorate. One doesn't even get the warning of high MCV. Anyway, with the alert changed form > 93 to > 100 or 102 over the past 15 years thereby enshrining one of the early warnings as "normal". This is in a population in the USA that has most of the population eating "fortified" foods with CyCbl and Folic acid. Instead of preventing FMS/ME/CFS the frequency is much increased. If these things could work, (and HyCbl is only marginally more effective than CyCbl) they would have already. Instead we see the opposite. Good luck.

 

[Hildergard]

@ahmo - thanks for that. I'll give it a read.

@Sushi - thanks for the tip.

@Fredd - I 'think' I'm starting to understand. I've finally got my blood test results back (no IF yet but like you say I think it won't be definitive) Reading these results with everything stated as 'normal' makes me question my own sanity - everything seems bang in the middle apart from the B12. It's all got incredibly combative with the GP and Neurologist and now even the surgery receptionists are being off with me. Ho hum.

I was just about to spend my Christmas money on a batch of Hydroxo injections from Goldpharma. I have to admit it just fits my poor addled little brain as a one size fits all solution but I really will try to get to the bottom of your protocol. I don't know why I can't grasp it

I've just read the descriptions of over/under methylators and I have almost exactly half of each.

 

[Freddd]

@ahmo - thanks for that. I'll give it a read.

@Sushi - thanks for the tip.

@Fredd - I 'think' I'm starting to understand. I've finally got my blood test results back (no IF yet but like you say I think it won't be definitive) Reading these results with everything stated as 'normal' makes me question my own sanity - everything seems bang in the middle apart from the B12. It's all got incredibly combative with the GP and Neurologist and now even the surgery receptionists are being off with me. Ho hum.

I was just about to spend my Christmas money on a batch of Hydroxo injections from Goldpharma. I have to admit it just fits my poor addled little brain as a one size fits all solution but I really will try to get to the bottom of your protocol. I don't know why I can't grasp it

I've just read the descriptions of over/under methylators and I have almost exactly half of each.

Hi Hidergard,


I've just read the descriptions of over/under methylators and I have almost exactly half of each.

Did you find the list where I match those lists up to AdoCbl, MeCbl and other deficiencies in color coding? So of course you have both since they are all the same group of deadlock quartet deficiencies. They are very specifically AdoCbl and/or MeCbl deficiencies. There is NO HyCbl deficiency. The body is able to salvage a little of it via the recycling process and 99% is excreted unchanged within a day or two, same as any other form. With folic acid or folinic acid instead of l-methylfolate the halflife is perhaps half as long. With glutathione/NAC the serum halflife is cut to 1/100 (estimated) of the serum halflife with L-methylfolate. HyCbl is a temporary breakdown product. Taking more of it just strains the body's b12 recycling system and makes most of the AdoCbl and MeCbl symptoms worse..

Save your Christmas money and try the Enzymatic Therapy MeCbl and Anabol Dibencoplex. They will typically provide 100x cost effectiveness or more. If you need to take only crumbs to keep the intensity under control do so. The intensity is typically healing startup.

 

[Hildergard]

I don't really understand any of that. I'm an artist- could you maybe draw me a picture?

I'm taking quite a lot of methylcobalamin anyway. Yesterday I took 2 x Solgar 5000 mcg and 2 x Jarrow 1000 mcg because I was drinking quite a lot of alcohol. I seem to be able to tolerate loads of methyl now. Does that mean I still have to go back to square one and take crumbs of it when I start the other things?

I'm also taking 2 - 3 x 99 mg of chelated potassium - just because that's what I had in the cupboard and am using magnesium oil on my skin daily.

 

[Hildergard]

@Fredd "Did you find the list where I match those lists up to AdoCbl, MeCbl and other deficiencies in color coding?"

No, I keep looking but there's so much information I feel overwhelmed.

Do you mean the six levels of methylation blockage? If so I really don't understand it. I'm not stupid by any means but I really don't understand the way all this is written.

 

[ahmo]

@Hildergard, Here's the link to the color-coded list. Maybe the artist in you can make more sense of it. cheers, ahmo http://forums.phoenixrising.me/inde...on-and-precursers-laymans-version.1740/page-2

 

[Hildergard]

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.

 

[ahmo]

Hildegard, "Color red means mb12 deficiency symptom. Color pink means frequent mb12 deficiency co-correlate. Color red-brown means adb12 deficiency symptom. " There are only a few pink items. They all relate to anxiety, panic attacks. I think the statement means these come up frequently in the lists that Fredd compiled, probably (?) from both b12 and folate deficiency. In my reading of the color-coded post, anxiety type symptoms are not part of Freddd's problem. My understanding, and this is after re-reading Freddd's material countless times, is that he's trying to make the point that "over-methylators" and "undermethylators" is an incorrect assumption, and this is what is confusing us as we proceed. Symptoms overlap the categories. His earlier comment to you:

Did you find the list where I match those lists up to AdoCbl, MeCbl and other deficiencies in color coding? So of course you have both since they are all the same group of deadlock quartet deficiencies. They are very specifically AdoCbl and/or MeCbl deficiencies. There is NO HyCbl deficiency. The body is able to salvage a little of it via the recycling process and 99% is excreted unchanged within a day or two, same as any other form. With folic acid or folinic acid instead of l-methylfolate the halflife is perhaps half as long. With glutathione/NAC the serum halflife is cut to 1/100 (estimated) of the serum halflife with L-methylfolate. HyCbl is a temporary breakdown product. Taking more of it just strains the body’s b12 recycling system and makes most of the AdoCbl and MeCbl symptoms worse..

Freddd's understanding, personal and from research, is that hydroxyB12 is useless, and folic acid is worse than useless. My own experience of hydroxy and folinic acid was that they were useless. MethylB12, on the other hand, is what's needed and what works.

Here's something re how to work out dosage. Freddd has recently said he no longer thinks 30mg folate is a likely dose, it's likely closer to 10mg for a high dose. I know I've got the 30mg part right, not sure if 10 mg for a high dose is correct, but you're nowhere near needing that info.

http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/page-8
ratios, once again.....the ratios between MeCbl/AdCbl/MeFolate + cofactors are of course individual and must be determined by trial and error, right? However, what are the recommended ratios to start out with?

There are no fixed ratios.

With 1mg of AdoCbl and 1mg of MeCbl each held for 1-2 hours against oral mucosa, one could end up with 200-400 mcg or more absorbed. This is enough to turn on all layers of healing except CNS for many of us. A start of methylfolate of 800mcg or less will usually produce a burst of healing on a couple of layers that then demands more folate than the body has easily available and so shorts other layers to supply the ones that are healing causing paradoxical folate insufficiency. So one titrates methylfolate until the insufficiency symptoms go away. This is usually between 1600mcg and 20-30mg depending upon how one reacts to other folates and B1, b2, b3.

While this is happening there is also usually a need for potassium of which needs to be titrated to the level of no symptoms. This usually happens in the range of 1200-3000mg daily in 4-6 divided doses. Again, this is dependent upon how fast cells are being formed and if too much b1, b2, and/or b3 can also be insatiable.

It is via systematic titration, finding peak effectiveness and staying there, not trial and error.

...Serum halflife might be a problem. If I don’t take b-complex twice a day I get a 24 hour pain cycle and at the 16-24 hour mark, heart arrhythmias. AdoCbl and LCF usually make for a much more even energy as they restore the mitochondria and are essential for that. Many have found that a second smaller LCF dose in midafternoon makes a difference. Also, l-methylfolate has a short halflife, about 3 hours so I find it best in at least 3 doses a day

As far as simple protocol, I, too, wish there was a simpler lay-out. That's what howirecovered's FAQ has done. As for a simple list, I'm pasting in another post by someone who summarized the protocol. There are, however, some corrections to be made to this list, which I've indicated by striking through the original, and added a bracket to the potassium info. You may need to start the folate at less than 800 mcg. I don't have in mind what you're already taking. If you need less, or are just starting up, you can cut those tablets into quarters.

http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/page-141#post-390845
Freddd’s Protocol – Getting Started... as I understand it and in my own words. 9/27/13

Assuming you already have the basics like Vitamin B Complex, C, D, calcium, magnesium, zinc and omega 3s in your supplements routine, start by testing:


1. 1 capsule of L-carnitine fumarate on an empty stomach (available in about 400 – 800 mg capsules)
If there are no new negative start up symptoms (like feeling super hyped & wired) keep
taking it every day.
If there are new negative start up symptoms (like feeling super hyped & wired), you’ll need to titrate up gradually until you’re comfortable with 1 capsule/day. That may mean taking 1/10 of a capsule. As your body gets use to having this long missing nutrient, you’ll gradually increase (titrate up) your daily amount to 1/5 capsule, then 1/2 a capsule etc. until you’re doing 1 capsule daily. You can take days or weeks to do this titrating. Don’t rush your body. When your body is use to 1 capsule of L-carnitine fumerate per day, continue that and start:

2. 1 Enzymatic Therapy B12 Infusion (1,000 mcg MeB12) after breakfast, placing the tablet
between upper lip and gum, for as long as it takes to dissolve. When your body is settled with
this, start:

3. 1 Solgar Folate (800 mcg Metafolin) with breakfast
If there are no new start up symptoms (new headaches, rashes, irritabilities, anxieties,
depressions, joint pains, muscle pains, insomnia, continue with this amount daily.
If there are new negative start up symptoms (new headaches, rashes, irritabilities,
anxieties, depressions, joint pains, muscle pains, insomnia) you’ll need to titrate up gradually until you’re comfortable with 1 capsule/day. Then continue the Folate and start:

4. [Country Life Active B-12 Dibencozide] [no longer preferred brand; instead, Anabol....] (3,000 mcg AdB12), after breakfast, 3 X week, placing the tablet between upper lip and gum, for as long as it takes to dissolve.

5. Potassium (99 mg tablets) [You may need more K+; Potassium Gluconate powder or Potassium citrate allow you to easily take higher doses. Tablets are only allowed to be 99mg to avoid stomach problems] taken with a glass of water, as needed, anytime during the introduction of the previous 4 supplements, if new nausea, itching, heart palpitations, weakness, muscle spasms or cramps start happening. For some, several potassium tablets may be needed, several times a day.

Hildegard, If my brain was better, I, too, would try to make this info into a simpler form. I'm not up to it. I haven't spent enough time with howirecovered's FAQ to see if there's a simpler list there. I hope this helps. cheers, ahmo

 

[Hildergard]

Thanks ahmo. I wish I'd known about the country life dibencozide before I ordered it.if I add in all the supplements at the beginning that I didn't know about then this 'experiment' is going to cost me well over a hundred pounds. I guess I'll just try the ones I've got coming and see what happens. I'm deeply regretting ordering the supplements now though and really wish I'd just gone for the injections. I appreciate you trying to break down the info for me though ahmo, so thanks for that.

 

[ahmo]

Hi Hildegard, Maybe the CountryLife will be fine for you. I don't know whether Freddd has specifically rated it down, or just settled on Anabol dibencozide. I have many partial and unopened supps. It seems to be unavoidable. I try to make sure I won't run out, then get some clarifying info and decide to eliminate the thing that's just arrived. Sorry, for us all, it's not an easier, more straightforward path. Best, ahmo

 

[Hildergard]

Is it that hydroxo is useless for long term relief? Because I felt amazing with the six shots of hydroxo that I had.

 

[ahmo]

I know that hydroxy hasn't worked at all for me, and for some (many?) others. Freddd describes why this is so in many of his posts. On the other hand, Amy Yasko routinely recommends hydroxy. She likes it because it has a gentler effect, I think. If this is what you have, keep using it. The reality is, each of us responds uniquely to all these things. Sorry I can't break it down more than this. cheers, ahmo