rash for 3 weeks, denied antibiotics from 2 GPs, any advice?

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Hello.

Just under 3 weeks ago I noticed a bump on my foot that I presumed to be some kind of insect bite. Over the next two weeks it developed into a red rash with a raised, darker edge. With the inside clearing as time went on.

This week I've been to see my GP and also been to a walk in clinic. As I live in south london which is an usual place to get ticks, both doctors have been hesitant to diagnose as Lyme Disease and have not prescribed antibiotics despite everything i've read online saying that the rash is enough for them to prescribe.I have been given a blood test but am worried as i have read they often give false negative results. 

Over the lat few days I have been feeling increasingly tired and also have worsening headache and aches at the bottom of my back and between my shoulder blades. 

I would very much appreciate some advice on what to do next especially regarding the fact my local doctors are so inexperienced with lyme disease.

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11 Replies

  • Posted

    Hi there,

    Good for you for taking photos of the rash. That looks very much like rash associated with Lyme Disease. A doctor should make a clinical diagnosis when you are showing physical symptoms like that, particularly as you are now feeling tired and are experiencing muscle pain.

    I suggest you go to this website. It's the one I went to last year when I caught Lyme Disease and wasn't getting anywhere with my local GP. 

    www.lymediseaseaction.org.uk

    Here is the link to the Pathway to Treatment, issued by Public Health England to GPs. Note the first part about making a clinical diagnosis if the patient has the classic bullseye rash.

    Print this off and show it to your GP. They can't argue againt Public Health England guidelines.

    http://www.lymediseaseaction.org.uk/wp-content/uploads/2014/09/Suggested-referral-pathway-symptoms-Lyme-disease.pdf

    Now this is very important. You must get treated as soon as possible. If you have Lyme Disease then the longer you leave it, the less likely you are to having it treated successfully.

    As you already know, the ELISA blood test is notoriously unreliable, but many GPs make a diagnosis formed on an imperfect test. Don't be fobbed off by a "wait and see" approach. Get treated now.

    Hope this is helpful.

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    • Posted

      Thank you for your reply and the links. I am wondering if there are any other services I can access as I am very relucant to go back to my GP. The doctor I saw there had to google Lyme disease when I suggested that is what I thought it may be, as he didnt know anything about it. And even after agreeing that the rash did match those he'd found on google still tried to prescribe me an antifungal (which I rejected) instead of antibiotics

      The walk in centre i went to is linked to the GP and as soon I said that I had already seen a GP and had researched online and was interested in a second opinion, the healthcare proffesional (I'm unsure whether she was a GP or a nurse) stopped listening, didnt even examine my rash and told me to 'put it out of my mind until I get the blood results' and to 'stay off the internet because it will make me crazy'. 

      I am concerned if they see I have come back to the same place again, they will take me less seriously than they have already but don't know where else I could go?

       

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  • Posted

    Yes, I understand how you feel. Many people have negative experiences with GPs when it comes to Lyme Disease. It's not their fault generally. You, as the patient, must perservere. Keep a diary making a note of all your symptoms, from the moment you had the bite, up until now. Log your pain levels from 0 - 10, with 10 being the highest level of pain.

    Here's what you can do right now. Send an email to Lyme Disease Action. This is what I did last year and I started to get a better response with my GP. They will advise you on the approach to take with your GP. It's important, in my opinion, to keep your GP onside so try to remain calm and factual when dealing with them (difficult I know, when you're feeling unwell and concerned). I suggest you attach the photos that you've posted on this website too.

    LDA take about 48 hours to get back to you, but they always do. They are a recognised source of information, but the Public Health England pathway to treatment is what got me treatment. I too took an Elisa test and was tested positive, which was fortunate for me as I didn't have a GP who was open to the idea of Lyme Disease either.

    Your GP is right in one way about the internet in that the more you look into Lyme Disease, the more frightened you become. Try to find factual based websites only, and avoid the horror stories. It's true, Lyme Disease can be a very debilitating and disabling disease, left untreated, but try to get informed using good, informative sites. 

    If you would like to, keep us updated as to how you get on.

     

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    • Posted

      Ok. Thanks again for your advice. I have emailed Lyme Disease Action and will try again with the GP. 
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  • Posted

    Hi

    its times like this some doctors need a good shake. Lyme disease will turn your world upside down if left untreated. You are already nearly a month untreated (far too long already) insist your gp speaks with somebody in the know about it. That looks like a clear Lyme rash to me. Others are right speak with Lyme disease awareness send pics if you can, then bombard your GPs with relevant info. Insist he speaks to someone in the know. There's a nhs Lyme specialist based in Hampshire he can speak to. If not go private ASAP! I had rash ignored it, 15 months later I'm still paying the price! Good luck.

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  • Posted

    Gold14

    I would strongly advise you contact the lymeaction group via the web address Caroline passed in her reply.

    I was bit in October last year, I got tick from a dog whilst I was stroking it inside a building. So arguments that you need to be in a high risk, rural area is incorrect.

    I had a rash which developed just like your pictures. My Dr also tried to give me anti fungal cream. As my symtons got worse, nerve problem in arm down to fingers, he said was trapped nerve. This was December, by January I had lost use of arm had problems with legs and was admitted to hospital. After three week in hosp I'm still left with extensive nerve damage and reduced movement of arm.

    I believe main problem is GP don't understand Lyme, I must say the hospital has been great so far.

    Please contact the lymeactiongroup, I believe they will even speak to your GP on your behalf. Also ask your GP to record on your notes you believe you have Lyme and request ABX but they refuse, it will be useful to keep a diary of symtons etc as well.

    Please seek further medical treatment as it can be horrible if left untreated. I would also suggest you join UK Lyme discussion group on FB there is a lot of knowledge on there.

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  • Posted

    it does look like lyme ...my rash/bite was very similar to that....my dermatologist said yes .."lyme disease"...gave me doxycycline antibiotic 100mg...30 days...I felt way better in 1 1/2 days...I am 2nd week of taking them and feel great...rash is going away fast....
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  • Posted

    Hi there, I agree with everyone else who has replied to you, but I would also urge you to be really firm with your GP and insist on a blood test for lyme. I too am in South London, I was bitten and got the classic rash but was, at the time, completely ignorant of lyme disease, and about three weeks later my GP just gave me a very low dose of amoxicyllin antibx for the rash.  To cut a long story short, the rash slowly went down but my symptoms very quickly worsened, I got a lyme diagnosis four months later after endless visits to the GP and I'm still ill two years later. So my point is, you don't want the GP to give you the WRONG antibx at this crucial stage - you want a lyme diagnosis and then the correct treatment right from the off (usually a hefty, extended dose of doxycycline). Good luck with it all. 
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  • Posted

    Quick update!

    Called my GP today and was again told to wait for blood results but after much persisting and insisting he reffered me to A&E. Seen by a great doctor who got in touch with a Lyme Disease specialist and have been given 3 weeks Doxycycline. Hopefully that will be that.

    Thanks all for the advice and support! 

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  • Posted

    This is great news, well done! I hope you feel better soon.

    Just so you're aware, you may have what's known as a herx reaction. Here's a link to explain it. Don't be alarmed if it happens, it's quite normal as the bacteria start to die off and will pass. I had a herx reaction and it lasted just several hours and then I began to start feeling better. It's important you don't come off the Doxycycline.

    https://patient.info/doctor/jarisch-herxheimer-reaction

    Here are things I learnt to do when on a course of Doxycycline:

    1. You can experience severe sensitivity to light so stay out of the sun. 

    2. Eat a meal before you take your Doxycycline to prevent stomach pains.

    3. Drink plenty of water

    4. Avoid sugary food and drinks. Eat healthily and up your protein intake eg scrambled eggs or omlette for breakfast. You can google diet for Lyme Disease patients, it will help.

    5. Get plenty of rest to allow your body a chance to recover.

    Keep a diary of how you feel on a daily basis, just in case you need to go back to your GP for a further week of antibiotics.

    Good luck! Hope you feel better soon.

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