lymes or RA

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Hi, 2012 was the last year when I went walking.  We always walked amongst the North Yorkshire Moors, Lake District, keeping grand children amused we always were looking for deer, we  live backing onto open countryside,  even in the field backway to our house we have deer that roam.

One day I saw something on our carpet (which is deep red) I got it up and  I thought it was a tic, a bloated on yeuk.  Thought it might have been from the dog (which lives with us sometimes as it my daughters) so we took it to vets in a jar and he confirmed it was a tic.  Dog was given flea and tic treatment.   A week or so later I saw I had a red angry rash over the front of my right leg,not a bullseye it was spreading over and u to my knee,  and there were one or two bite marks - again I blamed the dog said it was fleas, nobody else was bittten and it was only on the one leg.  This lasted for months, all through summer I hid it under trousers.  

October 2012 I went to g.p. with the rash,  I also had an inflamed second toe and I had very dry nasal passages.  He wasnt concerned and didnt really look, gave me cortisone cream.  It didnt work, went back again a month later he gave me more cream, this didnt work so I didnt go back.

January time I went back again because I had horrendous pain in my left groin, it lasted 24 hours, then had pain in left knee, 24 hours later it had gone and then appeared in my left ankle.  g.p. prescribed me anti inflammatories.

February I could hardly walk, both my knees were swollen and had lumps at the back of both knees, I couldnt get out of bed I was just so weak, my husband had to lift me to edge of bed and stand me up and guide me to the loo.   Couple of days later g.p. was called in, I was in bed almost unable to move, freezing cold, I had two duvets on plus electric blanket.   g.p. was shocked, he didnt know what it was but gave me some co fluampicil for two weeks,  he did ask if I had been abroad, but I hadnt.

things got a litttle easier and I was sent in April (still not walking properly) to see a rheumatologist, I went private.  rash was still on legs, knees still swollen, he took one look at me and said I had rheumatoid arthritis, no blood tests at this stage, but he did give me a steroid injection.

From then until now I am being treated for RA and on three immune suppressants, plus daily steroids which I have managed to wean myself off.

I went to my g.p. last month and asked if he would do a lymes test, luckily he did, but it came back negative.

my rheumatologist listened to me saying about lymes but they dont think it is she says its definately RA allthough she did say something else is going on in my body keeping my inflamation levels high, crp is sometimes over 220 and there is a lot of pain but it is only in my wrists now and middle fingers which are kind of arching and stiff.  No swelling now in knuckles or fingers which she was puzzled by

I have been fighting for nearly 1.1/2 years now with feeling so poorly.  Does anyone after reading this ridiculously long post think I should persue the lymes path?  One thing I didnt mention was that I do suffer sometimes from very thick mucous in my throat which they give me amoxycillin for and when they do I am totally pain free and am like my old self.    

Please can anybody advise me, I dont know whether to push for more tests in case they think it is me in denial about RA, but I have never thought that this is what I have.   Last week my rheumy asked for another blood test ANCA to be done, dont know why.

sorry once again for rambling.

 

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  • Posted

    Hi Juile,

    I would not rule out lyme. Please contact LYME DISEASE ACTION charity, they have excellent resources and information. The test you had on the NHS may have been the ELISA which is highly unrelaible. You need to get the Western Blot test as well. I have been unwell for 6 months, diagnosed with chronic fatigue syndrome having been an endurance athlete prior. Outdoors alot. I have only recently been investigating lyme and got my GP to prescribe me some doxicycline just to see if it helps, and guess what it has. Although i am not cured i have felt better having been taking the doxixyxline for just 5 days. I myself have only had the ELISA test so i have to push for the Western Blot. I've found out you can do this privately with county pathology labs Surrey for about £150. It is the exact same test used by the NHS.

    You seem to have improved when you had an anti-biotics yes ?

    It sounds clear to me your problems all started on the on-set of this tick bite and the rash ?

    All the best

    David from Glasgow

     

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    • Posted

      thankyou David,  yes I did improve on the antibiotics, during 2013 I actually had a staphlycocous infection 3 times, each time for that I was given clarithromycin and again on those I felt brilliant, I could even run to the car!!  but once again I am moving around like a really old lady.  I am at g.p. this Friday so will ask him what test they did.  problem is this g.p. who is not my usual one, is not very interested in hearing what a patient thinks, once time I went to see him when I was so desperate to feel better, I asked him if I could maybe have some steroids just to give me a boost, he told me 'they are not sweeties to give out when asked for'  whereupon I immediately burst into tears and told him to shove them and make me a private appointment with a endo, so I am a bit anxious about saying things to him.

      You probably feel the same as if your fighting a losing battle. I feel worse because of my immune system being supressed with the horrendous medication I am being given, I take 20 tablets daily on a friday I take 30, its never ending.

      thankyou for replying and taking the time to give me some hope.  take care and I hope you continue feeling better.

       

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    • Posted

      Hi Julie, i've been visiting this site for the 6 months i have been unwell. Thankfully i have a very good GP that is open minded and actually listens to me. Really push for the Western Blot lyme test. And contact lyme disease action. I'm 34, as i said was a triathlete 6+years and 4 weeks ago i could barely climb the stairs in the house. It's been up and down for me. You want to get doxicycline anti-biotics for lyme. These are not expensive. You can order them online if necessary. There is pubmed documents clearly showing the inaccuracy of the ELISA test with lyme diagnosis, that is a percentage of patients test negative with ELISA but positive with Western blot. I've felt zombified since early January, had no real strength and energy, felt like 150 years old. Actually called an ambulance as i thought i was about to die. I am naturopathically trained so have used some of this knowlegde to keep my head afloat but things are still relatively mysterious. Lyme disease is becoming more common in the UK and it is called the great mimicker because it mimicks so many others conditions, in many cases it takes people years with an M.E/CFS/MS/arthritis diagnosis to then find out they have lyme.

      The best of luck, try and remain calm with the GP and explain your desperation to rule out lyme, i mean you actually were bitten, had the rash and everything but never got treatment for lyme. So it could have manifest to what you have at present ?

      Take care

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    • Posted

      thanks again, I will update after my visit on Friday.  I do need to sort this because I was recently asked if I wanted to go on a drugs trial for RA, on reading all the stuff they sent me I read that you must not have any infections, if you have then - well its goodbye world.  NHS want to give me a really expensive drug costing over £9000.00 to treat rheumatoid but they wont spend on Lymes testing or trying me on cheap antibiotics, its as if we dont count as people I cant understand them.

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