NO LYMES DISEASE FROM TICS IN UK

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this is what I was told by my g.p. this morning.  I now feel totally at a loss what to do now.  He saw me at my worst when he was called in to see me at home early 2013 and  I did tell him that there are parts of UK where you can catch Lymes from tics, most of the areas we regularly used.

He said that there are people in USA who have Lymes and Rheumatoid arthritis together - what a load of bloody s***.  

He is a lovely g.p, and I was with him for over 1/2 hr but came out feeling very low.

The only time they will find out if I have Lymes or not is if I actually die and they do an autopsy - but Im not ready for that yet.

so if anybody can point me to a LLMD in Hull/East Riding area I would be more than greatful.

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  • Posted

    He is aware the NHS website itself lists several tick hotspots right? People like him should be sacked!
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    • Posted

      Hi, I agree there.  He even showed me pictures of rashes, when I said mine wasnt a bullseye one and I pointed to one similar to what I had, he just said well that one isnt a Lymes rash anyway I said Im not saying mine was the same just similar - god its so frustrating.  I am just glad I have a record of my health since 2012 when it all started. 

      I remembered that also in the beginning I had a deep red line about 12" as if someone had drawn on me going down my arm, he said 'ah yes you must have had sepsis', and he mentioned phlebitis and my veins were being attacked by something, but in the end I thought I was going round in circles with him. 

      I am going to look into a private test being done.    Did you yourself have problems like this?  I appreciate any help.

       

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  • Posted

    What a ridiculous thing for any GP to say. I'm being tested for lyme having spent time in the Highlands and abroad the past year as i have CFS 6 months, had to stop work, i am 34..  This was at my GP's INSISTENCE. Prior to was an athlete. Julie i suggest you go it alone and get a private Western Blot lyme disease test from County Pathology UK , it is £150 and an additional £25 to use their GP to interpret the results. Look them up on the web. You will just need your local nurse to take a vial of your blood, the test kit will be sent out to you free of charge. Also i have found the lyme disease association (LDA) are a superb charity who work in partnership with the Department of Health in spreading awareness about lyme disease in the UK and to educate more GP's about it. Their information is very accurate.
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    • Posted

      thanks David, the other thing he did say was that because the test was negative he is happy that I cant have Lymes, I thought that is stupid because even the manufacturer of the test says its not that reliable.   Today I feel totally wiped out but I have talked to my family and they all agree like you say go it alone.   I will look into it. Whatever the result whether I have or I havnt will be good to know.   My worst fear is that the medication I am on for rheumatoid arthritis (if I actually have that) is doing me more harm by keeping my immune system down.  I have noticed the last couple of nights that when it is dark, like when Im in bed my hands feel fine, not swollen or painful, but my right middle finger is really bending during the day, cant be medication as I dont take any after tea time. 

      You must find it awful being so young and athletic I suppose one thing is I am now retired and can sit all day if I want to, but I dont want to I want to do the things I used to do!!!!!

      thanks for info and when Im feeling a bit better I will look into the test.

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  • Posted

    DO NOT COUNT ON A UK GP TO GIVE YOU A DIAGNOSIS, they hate admitting it is Lymes happy to misdiagnose I think if they admit the amount of cases the cost of treatment will cripple the NHS (That's my opinion!) get yourself a private test with a diagnosis they have to treat you, money well spent, this is a nasty nasty disease.
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    • Posted

      yes I know, they dont want to listen.   I am being treated for rheumatoid arthritis, have been over the last year, but they are now deciding to put me onto Minocycline antibiotic daily instead of the immunosuppressants I have been on, not used much in UK but it is in USA.  Just dont know what is going to happen  but I had steroid injection yesterday also and to be honest I dont feel too bad at minute.  Trying to get through to NHS any opinion about any disease is just so frustrating.

       

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  • Posted

    I rang County Pathology UK today and they were really helpful, i'm trying to find a Lymes Specialist in the UK, there was a doctor in Hertfordshire I think but they were talking of cutting his funding and shutting down the unit typical!
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    • Posted

      I have been in contact with LymesDiseaseUK and they are absolutely fantastic they have given me so much info to use, contact them or look at their website it is really good. 

       

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  • Posted

    Hi new to all this but wondering if you are being treated as having rheumatoid arthiritis how did they make the diagnosis for that?  As I think I have lymes also and struggling to get diagnosis, but doc have said I have rheumatoid arthiritis based on 1 blood result of CCP being positive even though all my other bloods where normal, refused to test for lymes saying it was to soon after exposure even though it was 1 year down the line any advice would be greatly appreciated from you experience smile
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    • Posted

      Hi Melanie, i say go private for a lyme test like i did. About £150.

      I used County Pathology for my Western Blot. Very reliable service. Any results will be accepted by the NHS.

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    • Posted

      Hi Melanie, I had RA blood tests (every month now) and they said that I have rheumatoid factor and  ccp count was high,  my inflammation leve,l which is my crp, in beginning was 240 it should be about 1 or less, never has been since I started all these dangerous meds, I stopped the chemo one a few weeks ago and was off it for 4 weeks I felt great my crp actually dropped to 9.2, Went back onto it and within 3 days my symptoms are back, fluid on knees, painful shoulders etc., after 5 days it goes off, then starts all over again when I take next dose (I take once a week) one thing i noticed was that my crp had gone up from 9.2 right up to 95, so I dont know what is happening, all I know I have felt really poorly the last few weeks, can hardly walk and in pain daily, its giving me an ugly frowning face cos in constant pain, will try to smile more!!

      I am at clinic next week and I was told last time that they are going to start me on antibiotic therapy which will be minocycline daily.  So I have to just wait and see how it goes

      I was told that rheumatoid factor could show up if you have an infection.   Inflammation (CRP) can be high due to an infection but they wont listen to me about Lyme its like talking to a block of wood so good luck with your doctors.  Like David says it is easier to do the private test and more reliable.  Keep us informed of what happens

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    • Posted

      Thanks for your reply Julie, my RF was normal, CRP was normal, ESR was normal and my CCP was 83, all X-rays came back normal, at the point when the bloods where taken I could not walk or bend my fingers or hands, or move my shoulder or neck, could not dress myself or brush my teeth no anti inflanatories or pain medication worked and I was given them all, my doctor did give me the oral antibiotics for lymes while waiting for the test to come back, a 2 week course and things did improve but within a week of finishing them I was worse chest and rib pain, back pain, jaw pain, a cough really crippling, the lymes results did not come back as the lab decided the sample was taken to Close to exposure which I didn't get as it was 1 year down the line.  I will look at testing privatly and let you know what happens as I think I need the antibiotics intravenously or a course for a month x

      I will keep u up dated to how I get on smile

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    • Posted

      A classical reaction to anti-biotics for lyme is to get worse before you get better. Lyme is called the great imitator.
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