Lymes disease double vision

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Hey guys, I'm having an ongoing battle with double vision and headaches. I went for an MRI yesterday, brain and orbits, waiting on results that should come in the next couple of weeks.

I had a lymes test done on the NHS but online I read that their accuracy is not very good. Lots of people have struggles trying to get an accurate/the proper testing here in the UK. My test came back negative, would it be worth asking my Gp for another kind of lymes test, or what can I push for?

My symptoms are binocular double vision, which means I can close one eye and see straight. I have minor swelling in my optical nerve, but the eye specialist says it's nothing to worry about. But it definitely is because I'm 25 and should not be having constant double vision and crippling headaches.

Last summer my legs were COVERED in what I thought were mosquito bites. They had red halos around them, and all of them turned into nasty bruises, some were almost the size of my palm. I have pictures of my legs at the time, but don't know how to upload them here. Next time I see the doctors for my mri results I will show her the pictures of the bites.

When I had the bites I felt fluey, my body ached like I had the flu, I felt very run down for a couple of days and my glands under my neck felt raise.

My headaches started intensely about a month ago, with three days very bad, then the onset of double vision which prompted me to go to the opticians, I have 20/20 vision, got referred to the eye unit emergency centre, had my pupils dilated and field tests, showed slight swelling of the optic nerve. My headaches only happen once in awhile, I maybe have 2-3 headache days a week as opposed to the bad 'flare' where I had them every day. The headaches come from my neck, or the back of my beck, which spreads over the top of my head to my eyes.

The nature of my headache prompts me to think of iih, which I hear lymes disease can cause. Because I hear whooshing sounds in my ears (not heart beat, whoosh whoosh, like liquid is being squeezed through my veins).

I'm 25, living in Norfolk, are there any special contacts for lymes disease in the area? What should I say to my gp to get her to really look into this.

It's very stressful, I literally cannot see, I can't go out, cross a road, watch TV, or function properly. Mostly I just stay in bed, feeling tired, rundown, plagued by headaches, and double vision.

I try and look at Google to find someone with similar symptoms and if things got resolved, but half the threads aren't finished with treatment the poster received, or contacts for further investigation, or advice for how to handle my symptoms with the NHS, so thank you very much if you can offer me any suggestions or share your stories!

Thanks you thank you thank you

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5 Replies

  • Posted

    Hi Sam,

    They wont let us post web addresses here

    you will find a Public Health England document about nhs referral pathways. Please note what it says about erythema migrans rash on page 1

    Re your double vision, I have vertical double vision and occasional blurring and am waiting to see a neurologist as the opthalmist said I have no eye problems. My headaches go off the scale but I don't have too many. I just go to bed and wait for them to pass (up to 3 days ) as painkillers don't seem to work for me.

    Eye problems seem to crop up with neuro Lyme and some of the co-infections... look bartonella and babesia on Lyme Disease Action web site.

    Make sure you show your photos to gp/specialist etc. Ask for another test to be sent to Porton Down (Wiltshire) and ask if they would also check for co-infections (Bartonella, Babesia etc) but especially Anaplasma Phago. Anaplasma is the one that is most likely to show up. 

    As for management, eat as healithly as you can, as natural as possible (some organic if you can afford it), no processed food, alcohol or sugar and try to boost your immune system with your diet. You may try researching alkaline forming foods as they are reputed to discourage/kill the bacteria.

    Sorry I can't be of more help,



  • Posted

    Hi Sam ,

    Bless you , definitely show your GP your pictures lyme bugs gets everywhere and disrupt everything so if you do have lyme and or co-infections the sooner your treated the better !!

    The testing criteria for Lyme and its co infections is totally unreliable symptoms alone are enough in my opionion this is such an awful illness and the treatment in the uk is poor but hopefully if you have a good GP you will get the right treatment contact lymes action they will be able to offer you some good advice and definitely a good detox diet will help

    Good luck kelly

  • Posted

    Hey guys, here's a copy and paste from my other thread just letting you guys know about the mri and a few symptoms I've been having. At the end there is a follow on with the lymes section -

    Thanks so much for your replies!

    Had the mri scan done, and rang the doctors today and the lady confirmed that nothing abnormal came up on the mri scan, which is great news! No tumour!

    However I am under the impression that specialists will check the mri? For example in my case, an eye specialist and a neuro specialist? As mri's can be misread? Or is that not a thing?

    I'm being booked in to see an eye specialist again - I recently moved so need a new specialist and it's definitely worth getting a fresh set of eyes to check me over!

    As for tinnitus, I do have a constant high pitched ringing in my ears when my surroundings are quiet, but I've had that for as long as I can remember. I will mention it to my specialist?

    I'm definitely suspecting iih, just a little hunch in my gut. I will mention it to the specialist and hopefully get a referral.

    Though I am grateful and happy I don't have a tumour, I still do not have a diagnosis! And I'm still seeing double, and having several bouts of headaches a week. And I'm ever anxious of them misreading and missing something on the mri, like a tiny bleed or something.

    Also, upon waking, for the first half an hour of my day I can *almost* see straight...its a very nice feeling. But as the day progresses, it just goes back to normal double vision. It's mostly things that are far away and moving, like TV or a chimney in the distance, birds, stars, my dog running in the garden, or people (who have two heads) in a supermarket, things like that. And sometimes things closer get doubled, if I'm having a bad vision day. But I'm in my room at the moment and there's a plug on the wall, and I can see only one, and the doorknob, only one, phone screen with letters only one. I will mention this all to my specialist. It's a brand new specialist so I'm just gonna go to town with my descriptions.

    I've also been keeping a symptom diary, one thing that has started to happen is, you know when youre about to faint and your eyes go all spotty and black round the edges? That happens to be quite a bit, if I move over in bed, rub my eyes, or stand up too quickly. Sometimes I feel like I could faint, but the majority of the time it's just the visual sensation! Weird?

    Will keep you all updated, thanks again for you all taking the time to help me and reply!

    I haven't shown my doctor the pics of my legs when I perhaps got bitten by a tick, but I will be showing my eye specialist, and if my Gp calls me in for a mri discussion! I will push for another lymes test and this time test for co-infections!


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