Just been diagnosed with Lyme- what is my next step?

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Hi all, 

first of all, thanks to all the contributors on the Lyme subject. I have learnt a lot from your comments and queries. I'm new to this complex infection. 

I was bitten while in Mallorca 8 weeks ago. My gp missed the rash and misdiagnosed it(of course) but finally I'm on 2weeks Co-Aminoclav (Amoxicillin), and am one week in. 

Im a mum to a 1 year old boy and am very concerned about this disease. I'm worried it may come back from blood testing as a false negative and that my treatment will end there. My gp surgery has been pretty useless and I have had to push for testing and treatment while they have seemed reluctant. I'm pretty sure the infection has migrated further and that my oral penicillin tablets are not doing much. 

My question is- what should I look at as an option? Private? any views on this? I'm so keen to nip this now while I'm in early phase. I can not bear to have this crop up again when my little boy is still young. The headache and tinnitus is terrible, and I want to get rid of this once and for all. 

I would welcome any views with great appreciation. 

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8 Replies

  • Posted

    Forgot to say I live in london, but am happy to travel anywhere for treatment. 
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  • Posted

    You are very lucky to have an early diagnosis. What you do now is critical.  You have a very good chance to 1) nip this in the bud and be cured OR 2) get all the wrong help and end up with chronic Lyme which is disabling and difficult to treat and is basically a long slow death sentence.   I would not be mucking around with the garden variety doctors at your local medical centre when the cost to your life is potentially so great.  I would go to those that have experience and knowledge. I am an Australian Lyme patient who 27 years after being infected would give anything for the chance you now have.  Brakeshere is the only clinic I've heard of in England and I've heard good things - they are experienced, and if I was you I wouldn't care about the cost - I'd be there in a heartbeat - in fact whilst most Australians travel to Germany for treatment, there are a few Aussies who went to Brakesphere and that's why I've heard about it.  You have every chance of licking this disease in the early days - don't let it simmer under the surface of your skin causing damage because your garden variety doctor didn't give you enough or the right antibiotic. I'd try for at least 3 months abx followed by 6 months of natural antimicrobials to make sure you've stopped this in it's tracks. The alternative is too horrific - end up brain damaged in a wheel chair with no energy for any kind of life? Go to the experts don't even waste time fighting with those other doctors that know nothing. Get tested for co-infections and treat them too.  Watch yourself carefully for the rest of your life as a future flu or stressful event could reignite the illness if you haven't managed to kill it all.  Seek out your local support group - there is one in England that can steer you towards the right treatment, testing and doctors. Practice safe sex so you do not infect your husband. If you have given it to him, he might reinfect you in which case what's the use in treating just you?  Do not leave any stone unturned - those of us chronically I'll for decades and years would do everything we could in the early days to avoid what we now have, but there was nobody there to tell us this, so you are lucky - the right treatment in new cases has the greatest outcomes - you can fix this, but you must go to a doctor that knows what to do rather than guessing.
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    • Posted

      Can I just say the above is extremely sensationalist - 'a long, slow death sentence'? That's hardly likely to inspire hope. The NHS official line is that 95% of lyme sufferers make a full recovery within 6-12 months of diagnosis with antibiotic treatment. Unfortunately I'm in the 5% and am still struggling with acute lyme a year on from being bitten and nine months on from a positive blood test, but I'm definitely a lot better than I was six months ago.

      mana2012, time is on your side and I agree that I wouldn't bother too much with the NHS apart from getting your antibx. For a start, ask for doxycycline, not amoxicillin. DEMAND it from your GP if you test positive for lyme. Try six weeks at 400mg a day, not the recommended four weeks at 200mg a day. But first things first - get your blood test results back and ask your GP to discuss them in detail with you. Good luck. 

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    • Posted

      Perhaps you would feel differently if you'd been infected for 30 years about the "sensational extreme" I see on a daily basis amongst many patients who did not get the right help in the early days. They have seizures, they can't walk and they have no life in their darkened rooms with crippling pain.  There is  extremes in this disease that people need to be made aware of so that they seek treatment that will prevent them becoming one of the sensational extreme cases.   I wish you luck for your recovery Princematt. 
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  • Posted

    Can I just say the below is extremely sensationalist - 'a long, slow death sentence'? That's hardly likely to inspire hope. The NHS official line is that 95% of lyme sufferers make a full recovery within 6-12 months of diagnosis with antibiotic treatment. Unfortunately I'm in the 5% and am still struggling with acute lyme a year on from being bitten and nine months on from a positive blood test, but I'm definitely a lot better than I was six months ago.

    mana2012, time is on your side and I agree that I wouldn't bother too much with the NHS apart from getting your antibx. For a start, ask for doxycycline, not amoxicillin. DEMAND it from your GP if you test positive for lyme. Try six weeks at 400mg a day, not the recommended four weeks at 200mg a day. But first things first - get your blood test results back and ask your GP to discuss them in detail with you. Good luck. 

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  • Posted

    Brilliant thanks guys. I also get the feeling nhs is a waste of time. Only a week into treatment and I already know more than the docs. Luckily have been referred, after threatening to report the gp to the medical counci...so yes, have been referred to the london hospital of tropical diseases, where they have a Lyme specialist. Have you heard of any good news regarding this institute? 

    In your valued opinion, is it necessary with IV penicillin in the early phase? I just want to get rid if all nasty infection. I feel ok'wish..fatigued and some headache and joint pain that come and go. 

    Thank you both for your valued points. Much appreciated.

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    • Posted

      Check with the support group for the credentials of the Lyme specialist - is he of CDC thinking or ILADS thinking? The support group May have experience in this. 
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  • Posted

    If not already done so, I'd strongly recommend joining the UK Lyme DIscussion group on Facebook. Full of people suffering with Lyme and a lot of knowledge and experience
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