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What on earth is wrong with me?

Discussion in 'General Symptoms' started by debsicle, Nov 10, 2014.

  1. debsicle

    debsicle

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    Dublin, Ireland
    Hi, I have been a member for some time but apart from quizzing Freddd on his B12 protocol a couple of times I have never really posted much on here. The reason for this is that I am not sure whether I belong here. I see people with severe problems all the time on Phoenix Rising and I am thankful that mine aren't as severe. But, there is definitely something very wrong with me and my doctor has no answers (I'm in Ireland, so anyone from here could probably empathise about how hard it is to get a doctor to take you at all seriously)

    A few years ago, I had all the symptoms of CFS and it turned out to be a severe Vitamin B12 deficiency. I went on injections for years but it only served to make me functional, not well. I went online to find out could i do anything at all to fix it and descovered this amazing fourum and the Active B12 Protocol.

    Long story short and over a year later, I was very well for a while on it, made the rookie mistake of cutting way back on the supplements and had a terrible health crash. Depression, fatigue and general feeling awful. Then i started getting colds - colds bad enough to keep me in bed, every couple of weeks.

    I am back on the protocol now for a month, and i am sleeping through the night for the first time in about 6 months but i still keep getting this 'cold' for the want of a better word. it involves a sore throat (blisters on my uvula), sore ears, morning fatigue, muscle weakness and wobbly legs, night sweats, feeling like my throat is a bit swollen (its not!) headaches and aching teeth and just a general feeling of malaise. its happening every 2-3 weeks and i'm sick for a week or so.

    I am sorry that I am taking up space here when there are people way sicker than me, but I am worried at this happening continuously and a bit frightened that I will end up even sicker than i am. Does anyone have any ideas? I had thought maybe it could have been something to do with my adrenals or possibly glandular fever (i have been spending time with a friend who has gf and didn't know for a month or so, sharing cups etc)
     
    rosie26 and zzz like this.
  2. Helen

    Helen Senior Member

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    Hi debsicle,
    So sorry that your health problems arenĀ“t taken seriously. Have you got some labtest results? I think you have good reasons to work more on getting an appoinment with a more knowledgeable doctor to rule out what is possible to find from testing. If I am not mistaken Dr. Derek Enlander (@denlander) from New York, Mt Sinai Hospital visits Ireland now and then also seeing patients. Your story seems to support methylation issues and maybe an ongoing infection. You are definitely not taking up space here :).
     
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  3. debsicle

    debsicle

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    Dublin, Ireland
    Thanks Helen, I appreciate the reply. I will definitely look up Dr Enlander and see what i can do about seeing him. I find in Ireland there is a very big emphasis on treating your symptoms but when you ask about a more holistic view they are stumped! My blood tests last winter were apparently all ok, but I am concious that the levels tested here may be very much on the low side - for example B12 is only considered low if you are below 190 and when last tested my serum levels were 850 (a jump of 500 in just 3 months from supplemetation) my doctor actually said i should stop taking the methyl b12! I didn't, but eased off on a lot of other supplements.(allof which and more i have started again) A
    Another doctor a couple of weeks ago said i should stop taking supplements altogether because if i was eating a good diet already I might as well just throw them down the toilet. this is what you are up against here and its almost impossible to be referred to a hospital if they don't believe you!
    its frustrating to say the least. Maybe i need to get a 23 and me done so if there is some sort of genetic reason for this i will have evidence.
    thanks again :)
     
  4. debsicle

    debsicle

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    Dublin, Ireland
    I meant to say, I sort of don't feel that I really fit into any category - I am ill and it is horrible, but I am still able to mostly function in the normal world. I still work full time (i'm off sick a good bit though) I still go out with friends (but less than i used to). But, I always feel, well, 'wrong' i suppose, even when at my best and its getting me down.
    Its just that I know something is wrong but i also know that something is missing in how i am treating myself. I have no medical support for me trying to sort out my methylation so am completely flying blind apart from Phoenix Rising which I am so grateful for.
     
  5. JAM

    JAM Jill

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    The blisters on your throat make me think there is probably something viral happening too. Have you been tested?
     
  6. debsicle

    debsicle

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    Dublin, Ireland
    That is the problem - Its really hard to get tested for anything here. I have been to the doctor which exactly the same thing 4 times since July and missed nearly the whole month of September from work and now I have the same thing again including blisters. But my doctor, even when asked directly, cant tell me what it is. And she has never suggested any kind of testing for viral infections. She keeps saying that the only symptom she can see is these little blisters on my uvula, i don't have a temperature, my lungs are clear even though i have a cough and i appear to be in good health. trouble is that i feel awful. If this bout gets worse I will be asking to be tested for glandular fever at least.
     
  7. South

    South Senior Member

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    Southeastern United States
    Just a small thought, if I had any suspicions of a virus, I'd try taking elderberry. I've seen actual studies done on it for specific viruses (link to one is below), and ancient lore from previous generations lists it as useful for many other viruses.

    Ancient lore might not be the most proven information source, but elderberry's use as a food in parts of the world (as jam) makes me feel that it is safe to try.

    If someone decides to try it, it may be good to look for dosages in the studies, as the bottles of elderberry capsules (or jam!) don't have clear or useful dosage recommendations.
    http://www.ncbi.nlm.nih.gov/pubmed/9395631
     
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  8. debsicle

    debsicle

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    Thanks South, I think that I would try anything at this stage. I will see if i can get it on iherb. I actually love elderberry!
     
  9. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Debsicle,
    Get yourself to synergy clinic in belfast ASAP. Google it for contacts.
    They will make you appointment with Finbar Magee, I am attending him with great progress.
    Hes a trained GP specialising in CFS/ME/Fibo etc.
    Its only a hours drive for you and you will get progress.

    Greg (derry)
     
  10. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    He will give you a multi-facet approach:
    1. Heal the gut, address leaky gut where applicable.
    2. Remove physical stressors (amalgrams, bacteria infection, etc)
    3. After (2) improve adrenal function, heal adrenals.
    4. Ensure no sensitivies or food intolerance exist.
    he offers total holistic approach
    This is only a sample of what issues you will expect to improve overall systematic improvement.
    Also, with medical background no flaffing around with hocus pocus herbs, straight to the hard drugs....
     
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  11. debsicle

    debsicle

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    Dublin, Ireland
    Greg,

    thanks so much for that! I will look into it now - I have been meaning to get food intolerencies checked too, I all of a sudden developed an allergy to prawns a couple of years ago to top it all (i love prawns :()

    I may have to wait til after christmas now that i've seen the price list though...
     
  12. CantThink

    CantThink Senior Member

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    England, UK
    I read on the thyroid UK forum that in Japan anything under 1000 is considered a low B12 level, and in other countries (than the UK and Ireland) under 500 is too low. So I'd definitely ignore the doctors telling you to stop taking it etc.
     
  13. CantThink

    CantThink Senior Member

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    You could probably sort food intolerances out yourself by doing an elimination diet (look up how to do it online - it works if you do it properly... Don't reintroduce more than 1 thing at a time). I have had to do this and it has made a big difference. It is cheaper if you do it.
     
    Last edited: Nov 10, 2014
  14. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
    I just had a viral reactivation. The symptoms were sore throat, swollen throat and scratchy throat and a few other things you mention. I had been taking Famvir but upped my dose to 1000 mgs (with the blessing of my doctor) and within 2 days 99% of my symptoms were gone. I do get a sore throat if I'm tired or talk too much.

    Why not try to get some antivirals? You can get them without an RX. Depending on which one will depend not the cost.

    Also, when I feel "off" my teeth ache. Just one of the things I have to tolerate.
     
  15. halcyon

    halcyon Senior Member

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    Sounds a lot worse than a cold. Are you getting fevers at all? It sounds a lot more like an enterovirus infection based on your symptoms. Take a look at this list of symptoms for persistent enterovirus infection.

    If you're sick and not getting any better you're in the right place, you're not taking up space at all. If you had exposure to someone with GF, try to get an IgG/IgM test for EBV and CMV, the sooner the better. Don't bother with a monospot test. Your symptoms are somewhat consistent with GF as well but I don't believe it causes blisters, that sounds a lot more like herpangina which can be caused by enterovirus.
     
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  16. JAM

    JAM Jill

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    If you try an anti-viral, herbal or pharmaceutical, know that it takes years to be effective. If you get better for a few days, then crash, it is working. I have been on olive leaf extract for a HHV-6/EBV infection since May and am seeing progress.
     
    debsicle likes this.
  17. debsicle

    debsicle

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    Dublin, Ireland
    Ive never even heard of an enterovirus, but upon reading the main page of that website it does seem to fit. I think that you do need a prescription for antivirals here in ireland though (you need a prescription for all sorts of things you would think would be fine) but i will find out.
    minkeygirl, my teeth ache when i am feeling off too. I also get weird stabbing pains in the skin on my face!

    Ok, thanks for all the advice, I knew that I would find more here than from my doctor! I have a few things to try now other than just methylation.
     
    JAM likes this.

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