Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

Advice needed please. After 10 years could this be the answer!?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Gecko, Nov 7, 2014.

  1. Gecko

    Gecko

    Messages:
    16
    Likes:
    6
    I've just returned from the doctors after asking for a b12 test. I had a level of 247 bit was told it is normal.

    I have had chronic and severe brain fog, tinnitus, chronic fatigue, strained head/headaches, along with 'fullness' of the ears, a vibrating sensation, ear aches with fluctuating deafness and a 'dead feeling' in my ear and slight dizziness for about 10 years now. My sleep is non-restorative and I get sore throats, colds and aches regularly too. It started around the time of a bad case of labyrinthitis which they have also said could be menieres but I am unsure if that was a cause or a symptom of something else. But my ear feels dead and I vibrate all through my head with strained headaches.

    I have been back and forth to the GP and have been told it is due to anxiety and depression and that I have CFS although in my opinion that is all due to my illness as anyone would feel depressed and anxious. I am getting very desperate in my search which has pushed me towards non-NHS related treatment as this is ruining my everyday life and is a 24/7 issues that I cannot escape from.

    Could b12 be the answer here?

    How do I get my doctor to listen if so and what protocol should I follow? I feel I will have to be the one to push this as my gp won't really know but I'm overwhelmed as to what to do?

    I don't know where to start. How much should I start on and how often?

    After 10 years will my symptoms be permanent due to damage?

    Thank you all for your time!
     
    rosie26 likes this.
  2. caledonia

    caledonia

    Messages:
    4,204
    Likes:
    3,225
    Cincinnati, OH, USA
    Hi Gecko,

    The serum B12 test is not that accurate, except for if it's low, you're low. 247 is low.

    B12 could be "the" answer, or it could be "an" answer and there might be other pieces to the puzzle too.

    I don't think anybody can say what damage could be reversed or what could be permanent, but I think you would be surprised at what could be reversed.

    You don't have to go through your doctor to get B12. There are some things you need to learn though before you try supplementation, because supplementation could either be ineffective or make you worse, depending on some variables.

    You may need to pair the B12 with methylfolate and some other co-factors to get healing. At that point, you're getting into methylation treatment and it gets a lot more complicated. For best results, treatment should be individualized for each person, although there is a general method you can follow.

    I have many useful links in my signature below regarding methylation and B12. The first link, the Methylation Made Easy videos, is a good place to start for methylation. There are also links to two articles by Chris Kresser which are good info about B12.
     
    Scarecrow and helen1 like this.
  3. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    I agree with caledonia, 247 is right at the bottom of the standard lab range. You may well find some improvement by increasing your level and the links caledonia provides are a great place to get started on that path.

    Did you have any sort of acute viral illness around the time that the labyrinthitis started? I have all of the ear symptoms that you described and they all came on suddenly a few weeks after a severe gastrointestinal illness which I've been able to most likely pin down to an enterovirus infection. Enterovirus infections have been shown to persist for years and it's possible that your symptoms are being caused by a persistent infection.

    It sounds like you're in the UK which makes it a little difficult to nail down a diagnosis like this, but there are treatments that you could try empirically to see if they help at all.
     
  4. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,337
    Likes:
    4,408
    London
    It could be the answer or it could be terrible disappointment or it could be the start of finding the right track to restore your health.

    As an example I tested with a low blood folate (this was done through a NHS Neurologist) and supplementation was supposed to be the answer to all my problems. After a year of supplementation my blood levels were normal, some minor problems had cleared up a little but my overall ME symptoms were no better.

    B12 injections have never helped me in the past. Some people thrive on them.

    We know from the work of Rich VKB and others that some PWCFS respond to a regime of supplements for their METHYLATION cycle and that includes B12

    Maybe have a look at some of the threads here such as

    http://forums.phoenixrising.me/inde...ethylation-protocol-revised-as-of-today.9447/
     
  5. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,179
    Ventura, CA

    Definitely also look into vitamin D deficiency. It can cause hearing loss that is reversible with restoring healthy levels again, among the other issues you mentioned. Though it may mean compounded things on top of vitamin D deficiency. A lot of the rest sounds like eustachian tube problems and stuffiness, along with sinusitis inflammation. Ever check for possible mold issues? Another thing is removing inflammatory foods from the diet, dairy, and soy especially can aggravate the sinuses. Cutting out wheat especially gluten can also be helpful, there could be issues like gluten intolerance/celiac that are also worth looking into. Not saying that these are your causes but things that COULD be going based with those symptoms. Brain fog and fatigue aren't usually things that are permenant, just symptoms of different underlying causes. The hearing loss if there was causes like low vitamin D then sure it could possibly be reversed too, at least treat what you can and see what happens. :)
     
    helen1 likes this.
  6. Victronix

    Victronix Senior Member

    Messages:
    362
    Likes:
    133
    California
    Make sure to add a B-multi to balance out the B-12. Good luck to you!
     
  7. Gecko

    Gecko

    Messages:
    16
    Likes:
    6
    Hi all,

    thank you for your replies!

    I am still yet to get B12 injections but I am verging on persuading the Doctor after an NHS chronic fatigue clinic recommended as such.

    Thank you for vit d insight Martial! It does bring a little hope if that could reverse damage, especially as it seems to be getting worse recently. Do you know of any tests or treatments to see if I do have a Eustachian issue?

    Halcyon, as for viral onset, I believe that the Labyrinthitis itself is viral and that's where it started, It also all started a number of months after lots of immunizations before traveling which I believe could have made things worse.

    So lost as to where to go and what to do even after 11 years.....

    I find all the posts and links very interesting but also incredibly overwhelming. To be honest I don't fully understand most of them and don't know where to start!
     
  8. Critterina

    Critterina Senior Member

    Messages:
    1,202
    Likes:
    700
    Arizona, USA
    This means you are on the right track. Just keep trying and eventually it will make some sense. It is a matter of first getting your mind around something, then
    • often finding out it's only 70% to 90% correct (bad read of the research, oversimplification, etc.),
    • reconciling new information to old information,
    • tolerating different opinions without necessarily buying into either
    • withholding judgement
    • remaining the skeptic
    • getting really confused
    • going back to something you thought you saw somewhere
    • re-reading it (maybe the 18th time) and having it finally sink in
    I'm trained as a scientist (microbiology, chemistry, physics) and it literally took me 2 months of reading (mostly the heartfixer website) before it sank in.

    Keep at it. You'll make it. There's lots of intelligent people here who are willing to help.
     
    PeterPositive likes this.

See more popular forum discussions.

Share This Page