Injections not working and supplements in the UK

[FTY]

Hi, I am just wondering if anyone here can give me any advice, I’d really appreciate any help! I am 30, female, had ME for 6/7 years and live in the UK.

I read about B12 deficiency about a year ago and asked my Dr about this protocol: http://b12d.org/b12-deficiency-protocol-treatment. He agreed and I had 3 B12 shots a week for a couple of months and I’m now on one injection every fortnight. I’ve not noticed any real difference. I also take cod liver oil for Vit D and A and a folic acid supplement (supermarket brand).

I read Fred’s approach with interest however I’m unsure if its worth me trying. My main question is: does the fact that injections haven’t worked mean that my symptoms are probably not to do with B12 deficiency?

The brands that are mentioned above are all VERY expensive to get in the UK and so if this is something I’m going to give a go I want to do it properly but I have to admit I’m a bit overwhelmed by the depth of information here. Is there any kind of time frame in which to start introducing different supplements? And does anyone know how to get it cheaper in the UK? As I said, I’d really appreciate any advice. Thanks in advance.

 

[ukxmrv]

Which B12 did your GP give you injections of?

 

[FTY]

To be honest I don't know, he just said B12, whatever the standard B12 injection given on NHS is I suppose and I don't know what that is. I will ask next time I go to get it done.

 

[Phred]

@FTY if you're in the UK the standard b12 shots are usually hydroxocobalamin. Fred's protocol stays away from this type of b12. He uses methylcobalamin.

Also if you're taking folic acid STOP! Most (if not all) those with CFS/ME have problems converting folic acid. Fred's protocol uses methyl folate (metafolin). Rich's protocol uses folinic acid.

If you need help with your methylation cycle then you should definitely take the methyl forms of b12 and folate. For my personal experience hydroxocobalamin did not help me.

If one of your chief complaints is fatigue you may need to support your Kreb's cycle too. That would include taking adenosylcobalmin (ADb12) and eventually adding in L Carnitine Fumrarate (LCF). There is another kind of carnitine called ALCAR but most people (Fred says up to 90%) find LCF much more effective.

Really you should take both types of b12 and folate. B12 and folate need to work together. I can tell you after I added in Adb12 I developed muscles in my legs again. I did not alter my exercise regimen (walking my dog a few kms a day) but suddenly I had muscle again. That's how I knew this wasn't all hooey and placebo effect. There really was "magic" happening.

There is a lot of information on this board. It can be overwhelming. Keep asking questions when ever you get stuck. There are a lot of knowledgeable people here who are willing to help.

 

[FTY]

Thanks so much for taking the time to reply. I can't take this all on board right now so I'm sure I'll have more questions soon but just wanted to say thank you

 

[maryb]

@FTY
on my 23 and me results it seems I don't metabolize methyl groups so hydroxycobalamin is the best form of B12 for me. So its not as simple.

It takes months to build up levels of vitamins - the ME docs have you injecting every day or every other day. Also all the b vits in general need supplementing.

Off the top of my head - you need to take b complex vits, start low with everything, (I still can't tolerate them orally and am trying patches at the present), adb12, hydrob12, coq 10, CF as mentioned, try,d-ribose, NO folic acid,
Try looking at some of @caledonia's links.

 

[caledonia]

Just posting so you can see the links in my signature.

 

[Linda]

FTY

I live in the UK and have been doing the protocol for some time. Yes. The supplements are expensive here but I buy mine from -- www.iherb.com in the USA. They are much cheaper, postage is only £3 and its a good service, they usually take about 10 days.

Just remember to only order £15 or less, otherwise you will be charged customs!

Hope this helps. Best of luck.
Linda

 

[RosieBee]

I live in the UK too and like Linda I get most of my supplements from iHerb. I find even if I have to pay the customs (I think it is VAT plus £8 handling charge) it is still very much cheaper than most places in the UK.

Best of luck
Rosie

 

[FTY]

Hello. I'm wondering if anyone can tell me - is L Carnitine Fumrarate the same as N-Acetyl-Carnitine? If not, do people tend to take both?

 

[Hip]

Also if you're taking folic acid STOP! Most (if not all) those with CFS/ME have problems converting folic acid. Fred's protocol uses methyl folate (metafolin). Rich's protocol uses folinic acid.

I think it's only ME/CFS patients with MTHFR gene mutations who may have problems in converting folic acid. See:
The Folic Acid Controversy, MTHFR and Chronic Fatigue Syndrome
Possible symptoms of not converting correctly folic acid to active folate

Though if in doubt, or if you have not had your genes tested, it's safer to take either methylfolate or folinic acid, rather than folic acid.

 

[Hip]

If B12 did not work for you, then you might want to move on to trying the methylation protocol. Search this forum for more info.

If that does not work, then move an again, and try something like low dose naltrexone.

It's very common to find that ME/CFS that treatments which work for one patient have no effect on the next. So if you cannot get treatment to work, try another one.