Well what do you think

[MandyPandy]

So had a B12 diagnosis in January of B12 114 had six B12 loading doses, felt great and then after 3 weeks started to feel poorly again with all the neurological symptoms that I had before diagnosis, after four weeks B12 level 465. Been to see Neurologist today who said I have ME and dismissed the B12 as insignificant - any thoughts.

[Steap]

You answered your own question when you said you felt great after the loading doses then bad after the levels dropped.

There's the proof in your pudding.

[Gambit62 Administrator]

465 is actually quite a low level to have four weeks after a B12 injection - so not surprised that your symptoms have returned after 3 weeks - basically you aren't retaining B12 in your blood so likelihood is that you are deficient again at the cell level even though the level in your blood may be in 'normal range'.

What tests did the neurologist do that lead to the diagnosis of ME?

A lot of ME patients actually respond well to treatment with B12 ... although that could be because there is a mis-diagnosis the implication seems to be that it isn't all down to mis-diagnosis.

No guarantee that the neurologist really understands what B12 deficiency really is and how it works ... and think the evidence is that their knowledge of B12 is probably quite limited.

[Polaris]

journals.plos.org/plosone/a...

ME/CFS is usually a lazy diagnosis. I've known at least six people diagnosed over the years with ME/CFS and they've all been vegan/vegetarian.....

You may already have seen what Martyn Hooper, Chairman of the PAS, talked about in the House of Lords last year:

"Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies.

The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12.

Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands..."

[Hidden in reply to Polaris]

Could you tell me where u can view the new guidelines. Thank you.

[deniseinmilden]

Exactly like me. I'm very sorry for you.

To stop yourself declining further and sustaining damage as a result, please consider self treatment.

I'm sorry but I have run out of time this morning but for more information, including sources of supplies you could look up my profile by double clicking on my name and see my post "My Experiences".

After 20 months of daily SI and loads of multivitamin and mineral supplements plus extra folate, potassium, magnesium and iron I can't believe how much better I am and I am still improving.

Good luck with getting your life back!

[Marz]

Am wondering if you have any other underlying conditions. Low B12 is so often accompanied by low thyroid and many of the symptoms overlap. The thyroid needs good levels of B12 - Ferritin - Folate and Vit D to work efficiently in the body.

Having been on the Thyroid forum for six years - it would seem that most suffer with deficiencies in the afore mentioned - as I once did. Sadly diagnosing and treating thyroid problems is as difficult as diagnosing B12D/PA.

Hope you soon have answers and feel well.

[KJP723]

Hi, I'm not going to be much help I'm afraid but I'm going through something similar. Dr absolutely convinced I have me/cfs but I don't agree. If you look through the questions I've posted, I've had some really helpful responses with some useful links to read. Best of luck

[Shattered-FedUp]

You sound almost identical to me re levels & experience after loading doses. I've only felt well after following advice here and SI every other day with B12 from Germany. What I think of 'medical experts' like the one you've seen is unprintable!!!