Vitamin B12 Injections

[palmk002]

I was diagnosed with CFS in early 2009 and then my symptoms cleared up and I was discharged from Suttons NHS hospital. I've just been re-diagnosed with CFS and have been recommended to start B12 Vitamin injections once a week for 10 weeks followed by once fortnightly for a further 12 months.

Tomorrow will be my fourth injection, and ive asked the nurses what it is supposed to do or help and the response I got was "you get given it if your struggling with feeling tired". The only noticeable thing since starting these is I am waking up earlier.

Has anyone had these, know what they are for and how successful these are?

[Dr Charles Shepherd]

There is no evidence from clinical trials to indicate that vitamin B12 injections are an effective form of treatment for ME/CFS

The use of vitamin B12, including one (very small) clinical trail (Kaslov et al) that failed to demonstrate any benefit, is summarised in the Treatment section of the MEA booklet: ME/CFS/PVFS - An Exploration of the Key Clinical Issues

Kaslov et al: http://www.ncbi.nlm.nih.gov/pubmed/2684076

NB: The NICE guideline on ME/CFS does not recommend the prescribing of vitamins

[maccarac]

I receive three monthly B12 injections as I'm regularly deficient for some reason. I'think' but am not 100% sure that B12 is the vitamin that is used by the nerves, so ti would make some sense. At the start I had them a little more regularly, I think it was every week for a couple of weeks and then on to the boosters I receive now. The injections had no effect on my symptoms, although it is a very important vitamin for the body. I don't have pernicious anaemia. Maybe your Dr found some deficiency and perhaps forgot to mention it? I think it is fairly common for patients with ME to be B12 deficient and if it is the case then it's certainly better to have them than not, whether they help your ME symptoms or not. My nurse also seems to think that they will help my 'get up and go.' It's more a misunderstanding of the severity of ME symptoms on her behalf, not her fault sad reality at primary care in general. And if it weren't for the nurse, I wouldn't be having them regularly at all so I know it all comes from a good place.

[Dr Charles Shepherd]

I think it's worth repeating that there is no research evidence to support the view that vitamin B12 deficiency forms part of the underlying disease process in ME/CFS

If someone is found to have a deficiency of vitamin B12 they must be properly assessed to see if they have a potentially very serious condition called pernicious anaemia - which has symptoms, including fatigue, that overlap with ME/CFS

If pernicious anaemia is not recognised and treated properly it can cause permanent and serious degenerative damage to the big nerve running down the spine - the spinal cord

[palmk002]

Thank you for your responses. I have really been struggling with my sleep this week, either can't sleep at all or waking up really early. I've now got constant feeling of pins and needles mainly in my hands. I expressed my concerns and the opinions to my nurse this morning before my injection and she said that all her patients referred from Sutton Hospitals CFS clinic are on various courses for vitamin b12 and that she wasn't sure if it benefited any of them. I've booked a doctors appointment for next week to discuss this further with my GP as I'm assuming that recent blood tests would have been looked at to come to the conclusion I'm deficient. I've felt fine on these injections up until this week where I have felt more tired where I've been unable to have restful sleep.

[Neuroimmune Alliance]

Ah now many people find that B12 injections alone are not beneficial, B12 alone isn't enough if your body is not methylating, i.e converting methione into homocystine.

I found hydroxy injections pretty pointless so I started supplementing with subligual methylcobalamin then I added in hydroxy at a later stage - now I can't live without it. The difference between on and off is phenomenal.

I'd recommend reading some of Rich van Konynenberg's work on methylation and CFS to understand why our bodies need methyltetrahydrafolate and B12 in conjunction.

Hope this helps a bit.

[Jessica Bavinton]

This might be helpful:

"There is insufficient evidence for the use of supplements – such as vitamin B12, vitamin C, co enzyme Q10, magnesium, NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals – for people with CFS/ME, and therefore they should not be prescribed for treating the symptoms of the condition." (NICE Guidelines for CFS/ME p45)

[young jenny]

The vitamin B12 injection regime ( 1weekly for 10 weeks followed by monthly one) has been part of Dr Bansal's / Sutton CFS Service protocol he recommends to local GP's ( Surrey / SW London) for quite a while. My GP has said from her experience that it seems to help about 50% of her ME/CFS patients. Personally ,whilst not helping fatigue, it has most definitely helped brain fog type symptoms. I am now much more alert and can process information more easily. I will be staying on the injections indefinitely.

[palmk002]

I've been in contact with Dr Bansal and asked him to take a look at this thread. His response was that it has helped 50% of his patients and that most have found benefit between weeks 5-8. However as I seem to have concern, and sensory problems to abandon this form of treatment.

Its a 50/50 thing as to whether to stop having them as I'm almost at week 5, so I think I will discuss this further with my GP this week.