vitamin B12 and M.E

sleepymy

I can't believe your doctor, how horrible! I had a couple of courses of B12 shots though my gp surgery, think they gave me a little boost for a day or so but it was hard to tell really.

cyberbob wrote: »

The Perrin technique is just another way of getting money from M.E patients for totally unproven treatments. Its up there with all these therapies. Get your GP to refer you to a Neurologist that will be of far more use to you

Can I ask in what way are neurologists helpful for ME, I've never been sure whether to get referred or not. If they're just going to confirm my diagnosis and tell me to pace I wouldn't bother taking up their time (I'm already well versed in pacing).

vikki_louise

sleepymy wrote: »

I can't believe your doctor, how horrible! I had a couple of courses of B12 shots though my gp surgery, think they gave me a little boost for a day or so but it was hard to tell really.



Can I ask in what way are neurologists helpful for ME, I've never been sure whether to get referred or not. If they're just going to confirm my diagnosis and tell me to pace I wouldn't bother taking up their time (I'm already well versed in pacing).

I've seen neurologists but prefer ME specialists as i find them a lot more knowledgable, especially if your neuro obs seem fine!

picassopete

sleepymy wrote: »

I can't believe your doctor, how horrible! I had a couple of courses of B12 shots though my gp surgery, think they gave me a little boost for a day or so but it was hard to tell really.



Can I ask in what way are neurologists helpful for ME, I've never been sure whether to get referred or not. If they're just going to confirm my diagnosis and tell me to pace I wouldn't bother taking up their time (I'm already well versed in pacing).

i think thats my problem, my M.E and i move at different paces

Welshwoofs

mellc wrote: »

thanks for the advice, my doctor refers to M.E as yuppy flu so i tend to take him with a pinch of salt. Dr Sarah Myhill who specializes in M.E is very keen on B12 injections. guess its back to the drawing board

I was a patient of Sarah Myhill for a year with M.E after being shunted around numerous NHS 'specialists' who couldn 't find anything wrong with me.

Sarah Myhill advocated Magnesium injections which were cut with B12. My red-cell Magnesium levels were very low and there's a lot of studies which say this causes the Fibromyalgia element of M.E. (which I suffered from greatly). Luckily I had an understanding local GP who was willing to administer the injections which Myhill gave me. I used to have them weekly.

I was back to work in a year and I maintain to this day that it was the injections PLUS a lifestyle change which was responsible.

sleepymy

Welshwoofs wrote: »

I was a patient of Sarah Myhill for a year with M.E after being shunted around numerous NHS 'specialists' who couldn 't find anything wrong with me.

Sarah Myhill advocated Magnesium injections which were cut with B12. My red-cell Magnesium levels were very low and there's a lot of studies which say this causes the Fibromyalgia element of M.E. (which I suffered from greatly). Luckily I had an understanding local GP who was willing to administer the injections which Myhill gave me. I used to have them weekly.

I was back to work in a year and I maintain to this day that it was the injections PLUS a lifestyle change which was responsible.

Yes, I've heard ME people can't retain magnesium properly, although there was debate as to whether the injections helped or not. I know a few people who have good results from using Sarah Myhill's methods.

willa

sleepymy wrote: »

I can't believe your doctor, how horrible! I had a couple of courses of B12 shots though my gp surgery, think they gave me a little boost for a day or so but it was hard to tell really.



Can I ask in what way are neurologists helpful for ME, I've never been sure whether to get referred or not. If they're just going to confirm my diagnosis and tell me to pace I wouldn't bother taking up their time (I'm already well versed in pacing).

I think the only way they're helpful for M.E. sleepymy is in the exclusion of other illnesses.
I mean, I personally know one person who was first diagnosed with M.E. but then diagnosed with MS a few years later.
I don't think the above scenario is uncommon due to the similarity of M.E. and MS symptoms.
I know someone else who was first diagnosed with M.E. and then with Lyme disease.
Yet another person I know was diagnosed with CFS (after being labelled as a hypochondriac). Due to their own research and persistence, coeliac disease was finally confirmed. :rolleyes:
The possibility of MS or another neurological disease is the main reason it's good to get neuro testing though. I had an MRI but they only did my brain, not the spinal cord which I understand is often the site of lesions that may not show up in the brain.
Have given up with doctors for now.

sleepymy

willa wrote: »

I think the only way they're helpful for M.E. sleepymy is in the exclusion of other illnesses.
I mean, I personally know one person who was first diagnosed with M.E. but then diagnosed with MS a few years later.
I don't think the above scenario is uncommon due to the similarity of M.E. and MS symptoms.
I know someone else who was first diagnosed with M.E. and then with Lyme disease.
Yet another person I know was diagnosed with CFS (after being labelled as a hypochondriac). Due to their own research and persistence, coeliac disease was finally confirmed. :rolleyes:
The possibility of MS or another neurological disease is the main reason it's good to get neuro testing though. I had an MRI but they only did my brain, not the spinal cord which I understand is often the site of lesions that may not show up in the brain.
Have given up with doctors for now.

I've been offered a neuro referral because of my migraines (I take several short migraines day and night, most with aura so I'm either in aura stage or suffering the after fatigue at most stages of the day). Needless to say, on top of having ME, I'm knackered . I can't decide whether to invest all the energy that goes into attending appointments.

In theory, you would expect them to be able to help, but in practice I don't think they know any more about migraine than they do about ME.

Mojisola

McKneff wrote: »

No, no, no, a thousand times no.
take your doctors advice every time.
B12 is usually given for pernicious aneamia where the body cannot take vitamin b12 into it through the stomach wall and so has to be injected for the rest of (my life) It can kill in some cases.

Do you have any references for this? Dr Myhill says that there is no known toxicity for B12. This is from her website - https://www.drmyhill.co.uk/article.cfm?id=341

I self-inject with B12 a couple of times a week. I'm sure it helps me keep going.

I'll be very surprised if your GP will give you a prescription. GPs are restricted by the NHS and NICE and few are willing to risk their jobs by stepping outside the standard advice.

soolin

I think we need to be careful of straying into medical advice here, but yes there are some admittedly low risks, but risks nonetheless associated with B12. Frankly anyone that said there was no risk would make me suspicious immediately and I would probably be doubting everything else they told me as well.

http://www.buzzle.com/articles/toxicity-of-vitamin-b12.html

Toxicity of Vitamin B12

A heavy dosage of vitamin B12 is mostly considered harmless because it is soluble in water . Therefore, the part of unabsorbed vitamin B12 can be thrown out of the body through the colon. However, if there is substantial increase in the amount of vitamin B12 present in the body, it could increase the possibility of different types of cancers and other ailments.

There is a link between cancer and vitamin B12. This is because, intake of Vitamin B12 as a supplement activates cell division. However, it fails to identify healthy and unhealthy cells. Thus, it adversely facilitates the growth of cancerous cells. Patients using vitamin B12 to treat pernicious anemia may develop leukemia. Rise in level of vitamin B12 in our body can increase the risk of developing prostrate cancer. If intake of vitamin B12 is accompanied by high cholesterol diet and animal protein, then stomach and esophagus cancer may occur.

It can also lead to excessive growth red blood cells as well as overall volume of blood, which is known as polycythemia vera. Vitamin B12 can lead to some diseases related to blood and blood vessels. Vitamin B12 can cause clotting of blood inside the blood vessels. When vitamin B12 is administered for the treatment of megaloblastic anemia, it has led to fatal conditions like hypokalemia and gout in some patients.

The chances of intake of vitamin B12 in excess quantity often occur due to the fact that there is no definite upper limit of vitamin B12 consumption. Therefore, it is advisable to take this vitamin in moderate amounts only, and importantly in consultation with your doctor.

I have highlighted the bit that I think most relevant.

soolin

There are also some reports in the BMJ but I can't link to them as you need a log in to access the full articles. So whilst the risks are low, and there is some doubt about them, to say there is no risk at all is I fear rather naive.