Advice or opinions?

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Hi. Am new here & have just been to see a GP and had an experience on a par with others...Im looking for opinions, maybe advice..currently absorbing literally everything and my mind is a whirl.

The bite in the pic was taken end of July this year, whilst camping in Cambs - I didnt make a connection between this and Lyme till yesterday. Suffice to say to the last 36 hours have been spent researching what to do about it. The 'target' mark was no bigger the 3cm, painless, lasted a week and a half. Its small yes, but looks typical. I think I have conviced myself that it must be LD.

However, I dont think I have had any unusual symptons in the last 11 weeks. I recall a 24hr virus/fever over the summer, but cant even be sure if it was before or after the bite. In any case it was gone extremely quickly. From what I can make out however this isnt necessarily relevant?

So my GP had little knowledge but after googling agreed it was probably a LD infected bite. I've been given what seems the standard 100mg Doxycycline for 2 weeks (2 a day). She didnt see the point of having a blood test done?! I kind of wanted to just get past that stage and seek an expert, though it seems they are few and far between.

I feel like I am at a comparatively early stage and maybe have an opportunity to treat to this. Am I on the right track with the Antibiotics? Should I follow the course and then get a blood test? I have read that the dose is weak and too short.....Its been 11 weeks so the tests would be more accurate then straight after the bite?

Am so amzed about peoples experiences in the UK, really feel for you.

 

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6 Replies

  • Posted

    Hi Benj,

    From what i understand taking anti-biotics BEFORE any test will make the test more likely to be false. And you want to get the Western Blot test rather than Elisa. I did mine privately for about £150. If you can get it on the NHS, great. I'm currently seeking a proper diagnosis rather than having to accept the CFS label. Still think lyme is apossibility for me. Best of luck.

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  • Posted

    Hello benj, 

    Sorry to hear you are feeling like everything is a whirl, it is so much written on the net about Lyme, mostly bad, butvi feeel it is necessary to say that most active bloggers on the subject have long standing disease, much more complicated as other conditions can be triggered by Lyme. Like you, I was bitten this summer in May, and got treated with the same dose as you, started 12 weeks after the rash first appeared.  I had a range of symptoms both before and after the treatment, many that still longer now, 3 months on. I added 3 weeks antibiotics by buying doxicicline at Lloyd pharmacy online, as an antimalarial.  I absolutely panicked when I got diagnosed. 

    Symptoms that now linger (mild) are tinnitus and occasional feeling of ants in the hands, but I am confident these will work themselves out of the body with time. Every week is milder. 

    So long story short, I actually felt nhs treatment was sufficient and very good. I got referred to hospital of infectious diseases and follow up was good enough. So, just to say...when I first got diagnosed and was feeling unvelievably sh*tty in the early stages, people online were quick to share their doom and gloom stories, so just be weary. I feel great now, live same active life as before. 

    If I were you, I would add another couple of weeks antibx to safeguard, for peace of mind.  No need to test, as they're so unreliable.  I wish you all the best xx 

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    • Posted

      Just interested, did you buy Doxycycline online without a prescription? My GP tells me that 28 days on Doxy will cure me, end of story, which I'm dubious about. I'd like to know how you got hold of Doxycycline without a prescription, if you did so, just in case I relapse.

      Thanks.

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  • Posted

    Only 30% of patients have the EM rash, so in that case the rash is enough to diagnose Lyme disease and so a test isn't needed.  I wasn't symptomatic for the first five years - so it's not unusual that you are feeling well at the moment. Now you've been infected you'll want to do everything to keep your immune system strong because it's your best defence to keep it in check. (Immune support vitamins and minerals, a clean gluten dairy sugar free diet, no stress, lots of sleep etc) the minute you burn the candle at both ends, or subject your body to a "stress" (a virus, a car accident, a flu injection, surgery etc) then Lyme will take the opportunity to rise above and make you life an utter living hell.  I've seen dozens of extremely sick and disabled patients who were once fit and active until Lyme took over. You are where I was 27 years ago - but I didn't get help because it wasn't available. I've lost 21 years to illness ND now treatment can't be gayranyeed to work.  If I could go back in time knowing what I know I would go to a specialist - a LLMD - even without full symptoms. They know exactly which combination of abx to give (doxy is not enough) doxy will push the bacteria to cyst form, so you need another drug to address the cyst. Lyme is serious and early treatment by somebody who knows what they are doing is imperative. And sadly the corner GP or IDS does NOT know how to treat Lyme. You'll probably need to check for co-infections too (different seperate diseases that came from the same bite) and treat them.  Good luck.  Don't lose your life to this, you have the chance a lot of other people missed out on.  Early treatment is most often very successful.  
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  • Posted

    Thank you so much for taking the time to reply. So much variation in everything, and uncertainty in the testing side of things.

    I think weighing it all up the very least I should do is see a specialist and get the first consultation done & speak with someone more in the know. I have booked this for January so just shows how busy they must be.

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  • Posted

    Hi Benj,

    Your pic looks like a tick bite rash. I was diagnosed nearly 3 months after I'd presented with a similar rash behind the knee (practice nurse and my own GP misdiagnosed it several times). I was put on Doxycycline, like you and twice a day, but for 28 days. Here's a great website that I found, they are really supportive to both patients and the medical profession and are an NHS recognised source of information. You might want to email them for advice.

    http://www.lymediseaseaction.org.uk/

    Good luck, I hope you feel better soon.

    Caroline

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