Please any help or advise greatly appreciated

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Hi, I became unwell whilst on holiday in Turkey in July 2013. Started with dizziness for about 20 secs on and off over a couple of days with nausea.

This progressed into awful pressure headache with numbness, fatigue and constant motion dizziness in head which has caused balance issues.

Also brain fog, difficulty thinking, remembering names and words. Also noise sensitivity, light sensitivity, tinnitus and stabbing pains in head, eyes and ears.

Approx three months later I started seeing zigzag lines and flashing lights.

I always have a constant motion in my head which has changed direction with vestibular exercises. It is constantly up and down feeling in my head which feels pulsating as if coming off my own pulse. This has caused inflamation in my mouth and bone where I have a filling left in my gum due to taking out a root canaled tooth.

I also now have inflamation around my knee joints, outside of throat neck where your thyroid is, above my eyelids, some in arm by elbow.

My pulse in neck and groin are pounding. Tingling in arms and legs. I also get stabbing pains in legs and now have constant pulsating tingling motion going into feet. Pins and needles in feet when walking.

Pressure headaches have gone and also the brain fog.

I have remembered recently whilst on holiday a couple of days before I fell ill, I had a tick in my arm. I thought nothing of this and pulled it out with my nails. I told my doctor about this and she did a lymes test done of NHS. This came back negative.

What I'd like to know is if these symptoms sound familiar with lymes disease. Also where I can go or send off to be tested privately for tick disease as I have read the NHS tests are not reliable.

My emotional wellbeing is very low and my doctor becoming very weary with me. Please can anyone help 

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  • Posted

    Hi Emma,

    So sorry that you're feeling so unwell. My advice to you would be to see another doctor, particularly if you feel your current doctor is not being supportive. If you are with a practice that has several doctors, you don't have to book in to see the one that you are registered with. 

    As the ELISA lyme disease test is notoriously unreliable, ask for another test. Before you see your doctor, familiarise yourself with the GPs suggested pathway to treatment so you know what you're talking about. Don't take it for granted that your GP knows much, if anything, about Lyme Disease.

    Take a look at this website. It is a recognised source of information by the NHS and also Public Health England.

    http://lymediseaseaction.org.uk/

    Make sure you tell the GP that you were bitten by a tick and, if you have experienced all these symptoms AFTER you were bitten, find information to show them that you should be clinically diagnosed, rather than relying on an unreliable testing method.

    Also, try to keep an open mind. You may not have Lyme Disease.

    Good luck!

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  • Posted

    You seem to have exactly the same symptoms as me. Do you get very breathless and faint as is your vision odd and do you have panic attacks.

    I have had this for 6 years causing hyperthyroidism.  I got tested a few months ago and the western blot was positive. The regular tests are only 30% reliable so get a western blot done

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  • Posted

    Hi Emma, you can pay for a western blot test (which is more detailed than the ELISA)

    at The Doctors Laboratory in London. The sample is tested at the Rare and Imported Pathogens Lab. If you don't live in London you can order sample kit and request form online and sample can be posted, costs £225.  

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  • Posted

    Hi,  Yes I do get breathless and don't think its because of my fitness level. I used to go to the gym twice a week before I fell poorly, which I've had to stop since being unwell. My anxiety is high due to all of this and take anti depresants now, which does help. I used to feel faint alot but think that was due to low iron and low sugar. I think my next step is to find out about the western blot test. I live in the West Midlands so would have to order online. Thankyou for your comments.
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