Epstein barr virus? -B12? whats going on?

Right after fighting with my doctors regarding my worsening symptoms (I'm diagnosed with coeliac disease and thyroid disease-hashimoto's- both managed without issue) I then paid for private blood testing found out was deficient in vitamin D and B12 when got tested with GP and my level was 180-B12 ('in range at my surgery) I then insisted on IFab and anti gastric tests both were negative so she left that there. I then found out today I have Epstein barr virus but need retesting in 6-8 weeks to see if new infection or old?. Anyway I was interested in any further information. My symptoms are extreme fatigue (sleep 8-10 hours, wake up exhausted, then nap 1-2 hours after work) pins and needles in legs, stabbing feeling in middle of foot, 'dead' sensation in arms, dizzy spells (lightheaded feeling),lower back pain on waking. Ive been tested for R.A and hepatitis both clear. I'm only 29, I'm exhausted at fighting for a diagnosis, any ideas? thanks for listening and sorry for rant guys

19 Replies

  • I had EBV when teenager and felt awful- really weak and sweaty when I tried to do anything for a few weeks after a horrendous sore throat but it failed in comparison to B12 deficiency and my level was the same as yours. I never had any neuro symptoms with EBV but plenty with low B12. Have you asked GP for a treatment trial based on BCSH guidelines that if symptomatic and level less than 200, then treat, even if antibodies negative as 50% will be in true cases anyway? Or have you requested referral to haematology or asked for MMA/homocysteine? These will help confirm B12 deficiency, if high. No point if you have started to supplement yourself though. Nothing can be done for EBV- just time to recover but B12 deficiency will respond if treated properly. If it was me, I'd be asking for a trial/referral. Good luck!

  • "I then insisted on IFab and anti gastric tests both were negative"

    Are you in UK?

    It is possible to have a negative result on the IFAb(Intrinsic Factor Antibody) test but still have PA (Pernicious Anaemia).

    The "BCSH Cobalamin and Folate Guidelines" mention Antibody Negative Pernicious Anaemia on page 29, a diagnosis flowchart.

    Some UK GPs may not be aware of the BCSH Cobalamin Guidelines, they may be using local NHS B12 deficiency guidelines that may not have been updated for several years.

    There are many causes of B12 deficiency besides PA. See next link.


    As well as B12, have you had ferritin, folate and full blood count tests? Have you ever been tested for H Pylori?







    UK B12 documents

    Recent UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if b12 levels are normal range.

    1) See BCSH Cobalamin and Folate Guidelines...page 8 and page 29

    2)http://www.bmj.com/content/349/bmj.g5226 See 5th summary point

    Symptoms lists

    pernicious-anaemia-society.... Click on Symptoms Checklist


    B12 books

    What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

    "Could It Be b12" by Sally Pacholok and JJ. Stuart

    Other links



    I am not a medic just a person who has struggled to get a diagnosis.

  • sleepingbunny and secondchance, I sent her all documentation from PA website/the bsch guidelines and the nequeks alert-which lead to doing other tests-which for her was enough to say defo not B12. I'm convinced it is especially given I suffer swollen tongue too. I haven't started taking b12 yet but I'm so exhausted and fed up that I feel I will have no choice but to start soon, ive been fighting with her for months. Its dreadful, ps I also read the could it be b12 as well. Yes I'm in uk

  • Get another GP? Or get a referral to a specialist? And/or try and get MMA/homocysteine tested.

  • You are in at least two high risk autoimmune groups Kate, with neurological symptoms of B12 deficiency and, personally, I wouldn't waste more precious energy battling the system but would start self injecting and supplementing as soon as possible to prevent further damage (more info and help on the site about this).

    EBV has also been linked to ME/CFS, which my relative had with EBV and she was misdiagnosed for many years and eventually dementia - it turned out to be severe B12 deficiency.

    You may be interested in reading 'Medical Medium' by Anthony William - EBV, B12 def. etc. is mentioned many times in relation to undiagnosed, long term debilitating fatigue, etc.

  • Re. gastric tests - a link you may not have seen:


  • Where would I start in terms of buying to self inject. I have no clue but defo want to start

  • These are the links I copied from this site to order for my relative some time ago. Others here probably can advise you on this and self injecting :

    B12 from amazon.de - amazon.de/dp/B009M3TRQ4... - the site is very similar to amazon.uk, so if you're familiar with that navigation is fairly easy. Otherwise you can amazon.de open in one window and google translate in the other.

    syringes, needles and wipes from amazon.uk:

    Green needles to draw the solution up into the syringe -www.amazon.co.uk/gp/product...

    Blue needles for the actual injection - amazon.co.uk/gp/product...

    2ml syringes - amazon.co.uk/gp/product...

    Sterile wipes - amazon.co.uk/gp/product...

    I hope they work and all goes well for you.

  • Thanks much appreciated

  • I do understand your frustration and that you just want to feel better but please try and get a diagnosis before taking B12. Find another GP or go to a specialist. Try and get at least MMA/homocysteine tested before you take anything. I do not recommend starting self injecting without medical supervision, or having had at least injections already.

  • You say your B12 was 180 - do you know the units (ng/L, pg/mL ot nmol/L) and the 'normal' range for the test - it'll be in brackets after the number - something like (150-5999). If they didn't give you a copy of the actual lab results ask for them - they are your results after all.

    The B12 test is not very accurate, so a reading of 180 may lie anywhere between, say 150 and 210. That should be good enough to argue for another B12 test at least. Then, once that's agreed, you can say 'while they're making the hole in me they may as well take some out for an MMA test as well'.

  • Pg/ml and range is starts at 150 not sure how high it goes up too

  • The top of range numbers don't really mean much. I've seen some quote numbers as low as 700. My last test (and the one before) came back as 5999 - because that's all the test can measure.

    So your value could easily be at the bottom of the 'normal' range. And the 'normal' range is normal for the average person.

    I would go back, explain that you're not satisfied and want the B12 tested again. Then, as I said above, tell them they may as well do MMA at the same time.

    If they still refuse then ask for a referral to a neurologist. The doc may suggest a haematologist - my experience of them is that they're fixated on blood. If you don't have macrocytic anaemia then you don't have a B12 problem. A neurologist will be able to do tests on your feet for peripheral neuropathy.

    Talking of macrocytic anaemia - have you been tested for that (it's part of a FBC - Full Blood Count)?

  • Yeah full blood count was 'fine' again

  • Have you been in the coeliacs forum? My neurologist said that my symptoms (very similar to yours) may be due to coeliacs.

    I told him I'd been tested before and that I have no reaction to wheat (thankfully, I love wholewheat bread) but he still wanted me tested again.

  • My gluten free diet is really strict and my results are always negative I've been diagnosed two years

  • I'm afraid I know little about coeliacs. Somebody in here may be able to say if your symptoms could be explained by it.

  • If you want to read an eye opening book about Epstein Barr and how it is the root cause of many conditions we are tagged as, at the doctors , please read Medical Medium, secrets of chronic and mystery illness and how to finally heal, by Anthony Williams . This is a great read and if you have an open mind this is a miracle book. I have been healing my Shingles with the foods to eat and not eat, and it's like a miracle.


  • Hi,

    I also wondered if you had had tests for Immunoglobulin deficiencies.

    IgA deficiency can mean that a person produces negative results on Coeliac antibody tests.




    It is possible to get private tests for immunoglobulin deficiencies but not many places test for the whole range.

    "full blood count was 'fine' again"

    Did you get a copy? I learnt that what I was told was fine or normal was not always fine or normal when I got the copy of results.

    Have you ever got a complete set of your medical records? There was someone on this forum who found out they had been diagnosed with PA in the past but never told....

    I think its relatively easy to get medical records from GP, can be quite expensive though and needs a formal written request, much harder to get records from hospitals, needs form filling and maybe vist to hospital records office.

    The PA admin said "I do understand your frustration and that you just want to feel better but please try and get a diagnosis before taking B12"

    My personal experiences are that supplementing with B12 can make it virtually impossible to get a diagnosis, this happened to me.

    I felt forced to eventually self treat after several years of trying to get NHS B12 treatment as I was highly symptomatic and deteriorating. For me it was an absolutely last resort and I would have preferred to get treatment from NHS.




    I also wondered if you had looked at MTHFR gene mutations?



    Have you ever been bitten by a tick in the past? Has lyme disease been ruled out?


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