Hi does anyone know if I can get tested for lymes disease? I’m 43 now but when I was 10 I was very poorly with suspected meningitis, happily it wasn’t and it was put down to a bad kidney infection and a high dose of antibiotics was given. However 30years later you begin to wonder. Just before becoming poorly I had just enjoyed a lovely holiday in the highlands of Scotland (lots of deer around). I have read often lymes disease is getting missed and later miss diagnosed as MS. Then again would it make any differerance?
Hi you should be able to get a blood test checked have a nord with your gp and explain your concerns I was checked before my ms diagnosis but I worked in farming all my life
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Thankyou hillybilly x
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I was tested as part of my diagnostic blood works, and negative. It can be done from a normal blood test.
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You have to find a doctor who is an expert on Lyme disease. I’ve heard so many stories of people having ‘routine’ blood tests and them coming back negative. Only when they visited a Lyme literate doctor and got specialist testing did they really get a proper diagnosis. You would probably have to go private to get this treatment x
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similar views are held in Canada; they do not even register Lymes disease on the radar as a potential alternative, despite the similarities.
My neuro offered the notion of having the bog standard blood test, but admitted that its accuracy was lamentable and therefore not worth the effort.
Perhaps reflective of the Canadian apathy towards the disease, they did acknowledge that a reliable test was available in the USA, but warned it would take both time and money to secure. Given their confidence in my MS diagnosis, they recommended that i didn’t bother.
And so i didn’t bother… but i do still wonder… so perhaps i will?
Conspiracists are quick to point out that with MS, you have a life long need for expensive drugs; for lymes disease, you have one dose of something and get fixed up straight away. I recall hearing that renewed efforts were being made to promote awareness of tick bourne diseases.
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Agree with Lisa. I’ve been told a Lyme literate doctor and specific blood tests are necessary and I seem to remember bloods are sent to London for analysis.
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Yes its not a bog standard test takes around six weeks did you ever have an insect bite go bad
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I believe the test is routinely carried out as part of the MS investigations here in the UK.
I tested negative for Lyme Disease some years ago, but here’s the story of someone who tested positive…
Ben
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I came across this in Oct last year about a new strain of lyme disease in the UK. On another site it said only around a third of people get the bulls eye rash.
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Testing for lymes is pointless if its chronic. IF you are recently infected by spirochete Borrelia burgdorferi then it might show. However if you have had it long time the Spirochete hide in cysts usually behind joints (thats why people with lymes have a lot of joint pains). I know all about lymes. I finally went to Breakspeare Clinic saw Dr Munro who is one of the leading experts on it in the UK.
I had bloods sent to USA. Although it didnt show every titer you would expect for lymes, it showed 3 which meant i had met lymes, also alongside it a co infection showed which is Erichilosis. I know now what are my lymes symptoms versus my MS.
taking antibiotics like doxycline sure stirs mine up so i try to avoid them. luckily trimoperin for my uti doesnt bother my disease.
Yet my GP has tested me twice, my neuro once NEGATIVE.
Lymes is so under diagnosed in this country as they are not using the latest tests for it. Its epidemic proportions believe me in this country.
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Thank you all. - well after reading the clip Ben added I was all set to chase this up. But reading crazy chicks post I’m still hesitant - like she says if it’s chronic it’s pointless. Has it made any real differerance to your life Crazy Chick?
Hi again sar01b,
Lyme disease has been discussed on this forum several times now. A forum search finds the following threads over the last three years (including yours) … https://community.mssociety.org.uk/forums/everyday-living?title=lyme
You may find something of interest.
Ben
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No Sar01b, i have learnt to live with its weird issues. If its chronic you rarely get rid of it regardless of what people try and tell us.
My friend in the states has it too, and she has tried every thing to get rid of it, but its still there.
I have monthly issues where i get weird painful lesions on my back, then burning urine, and it goes again. I get a lot of black cobwebs in my eyes when i am tired, i put it down to my lymes, and knee pain but i dont have arthritis.
I decided not to challenge it, as when you chucked Doxycllin at it, you can get what they call herxing (google), and boy it worked with me, i thought i was going to die, i couldn’t finish the treatment, so i leave it alone now.
My MS has much worse issues to be honest. xx
I really want to chase this up as well but Breakspears tests are quite pricey. Travelling there from Glasgow will be a hassle in itself.
It will take me a while to get the money together but it might be worth it. I regularly photographed deer in a field nearby me since 2012 up until last year I hadn’t put that together until now.
I was given strong antibiotics in December for a viral infection and after that is when I noticed all of these MS symptoms. I get the cobwebs in the eyes aa well. My thinking has been really fuzzy although I’ve been put on diazepam and amitriptyline which masks the problems.
If this is something that will get progressively worse I’m really not sure I’m capable of handling it down the line.
I was convinced it was a stroke because my left side keeps going completely numb but the few doctors who I’ve spoken to in waiting for a neurologist have laughed that off due to me being 27.