Urgent advice on suspected Lyme Disease

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Hi ! I'm Just after a few different opinions as I'm worried sick about this and symptoms are getting worse each day. I'm from Liverpool in the Uk and 7 weeks ago I started itching my leg a lot, it started out just looking like a mozzy bite & ended up growing over the next 10 days to about 5cm, it became red then looked like a bruise, then another one started itching on my bicep which was pink and circular shaped, but not a bullseye look, in the end I went to my GP and he mentioned Lyme disease but said it didn't look like the typical Lyme rashes and gave me cream, at this point I'd never heard of the disease. So I done a bit of research and spoke with friends and they told me to demand my GP send me for a blood test and put me on Doxycycline as precaution. I started it about 10 days after noticing the first itch (100mg x2 for 14 days) at this point I had no other symptoms, around about day 8/9 I started feeling really fatigued & as I drew closer to day 14 I noticed feeling dizzy and off balance and generally lethargic and weak, I went back to my GP and he said my symptoms were just from the medication but he was happy to prescribe another 2 weeks if it was worrying me, the symptoms continued and along and then came some brief and mild shooting pains in hands, feet, legs etc etc, but no flu symptoms. As i was getting closer to my day 28 on the Meds the symptoms remained, I stopped taking them 1 week ago and I'm worse now than when I was on the doxy, last night I noticed I was having some headaches too (mild) I'm currently waiting on the results from a 2nd blood test as the first one after two weeks was ok, I went to A&E at the Hospital for a 2nd opinion and the doctor done a urine sample and ECG. He told me to stop taking the Doxy "you don't have Lyme and the medication will be making you ill". I'd love some advice on what to do next or opinions, should I demand more Doxy at this point and how long for, fed up of being dizzy ???? Look forward to hearing some response as I'm worried sick.

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15 Replies

  • Posted

    Hi Dave sorry to hear youre not feeling well. You're gp sounds v good and especially for advising on possible lymes and giving you doxy. In my opinion you definitely did the right thing taking it. Did you finish the months course?

    Can I ask where you got bitten?

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    • Posted

      Thanks for the reply Sarah, yes I finished the first 14 days on a Friday, on the Monday morning I went back to my GP still feeling drunk/dizzy and he prescribed me another 14 days, I started them that Monday for another 14 days, symptoms never changed one bit, now I've been off for a whole week and the dizzyness, Fatigue and shooting pains are getting worse, it's 7 weeks tomorrow since I started scratching this bite and developed the two rashes, head's battered sad

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    • Posted

      You're welcome Dave. I definitely think as Emma said previously that contacting LD UK is a good idea. They were excellent with me and have up to date UK Lymes information/guidance on treatment, testing etc. It might be worth after that asking your GP to run a series of blood tests preferably via porton down for lymes and possible coinfections and go from there. Hope you get sorted.

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  • Posted

    Dave, I am not a doctor but if there's a chance you have Lyme Disease you need to be proactive quickly. But keep calm.  Look at Lyme Disease Action website and Lyme  Support UK to understand more. The rashes for Lyme are not just bullseye rashes. If Lyme is suspected then continuing with antibiotics is seen by many as a very good thing- you need to kill the borellia bacteria as soon as. I don't know why you would be told that the antibiotics would be making you ill so discuss with doctor. If doctor open minded then there is information to give them from Lyme Action etc. The key thing with Lyme is to tackle it quickly. Good Luck

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    • Posted

      Cheers for the reply, both my GP and the doctor I saw at the hospital said I'm feeling these funny effects because I had no infection and I've taken a months worth of strong antibiotics, at the time this was relieveing to know but as the week went by my symptoms have gotten worse and certainly don't seem to be shifting, the doctor thinks the Doxy could have made my anxiety worse which I normally have complete control over, and the dizziness drunk feeling is anxiety symptoms, but I've experienced nothing like this before in my life, if you were in my shoes would you ask for more Doxy or wait for my 2nd blood test results over the next 10 days ?

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    • Posted

      Personally I'd liaise to LDA UK and see what they say. Good that you're having bloods done too but bare in mind that the NHS standard antibody test is only 30ish % accurate hence why I mentioned more in depth Public Health England, Porton Down lab testing (NHS). Usually they won't do a PD test unless your initial/local antibody test is positive. Long story short mine was negative x3 but wasn't convinced so had private testing done which then led on to PD testing which gave a very different story. Keep pushing through and listening to your body you know it better than anyone and hows its changing/not its usual self. Good luck!

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    • Posted

      this is just a personal opinion based on my experience- i would ask for more antibiotics.  is anxiety a side effect of doxy? check leaflet or info on line. i don't remember it as such. two rashes and the symptoms incl dizziness- try contacting Lyme Action (and/or another GP at your surgery maybe)- they might help give you a steer but you can wait a while for a reply. Do get more informed on Lyme yourself

       I don't see how your hospital doctor could definitely rule out Lyme.

      Try to be calm with surgery/health professionals. Don't let things drift.

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    • Posted

      Thanks Emmalee, yes allegedly Doxy is bad for anxiety especially if you already suffer from it, but like I say since I started this medication my levels have hit the roof, add that to these horrible dizzy and fatigue symptoms and you can probably tell how bad I've been feeling, what I'm worried about is if it's not Lyme and the antibiotics have really sent me west, both physically and mentally 😞

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    • Posted

      dave,

      Lyme Disease borellia nd co infections cannot be detected in the blood until the body has time to make antibodies/antigens - a couple of months after the bite.

      So bloods may well come back negative.

      You need another test and it will be sent to Porton Down.

      If you have Lyme then the "die offs" may show- that you have been infected/ that you are still currently infected or whatever!

      Doxy given in sufficient strength for a full month  asap after the tick/mite bite will cure in most cases.

      Other co infections found such as borellia babesia and others my need an extra boost.

      Help yourself too. void carbs and sugars as these bacteria thrive on sugar. Eat lemons( all parts) . Drink lots of water with squeezed lemon juice in it. have extra salt on your food(if blood pressure/heart allows.

      You are fortunate in your Dr.

      Porton down tests often come back negative.B

      Blood can be sent to Germany for testing of many types of Borellia bacteria successfully for greater clarity and to enable your GP see what needs doing.

      Many GP's won't accept foreign testing but it gives you a clearer idea.

      Hopefully the Doxy will work and the things will all die away.

      You will feel unwell. You are fighting bacterial infection that affects the whole body.

      Help yourself by plenyt vit  C I gramme upwards a day  and probiotics,

      good fresh vegetables and no junk food.

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    • Posted

      Thanks very much for the reply, if I'm feeling worse now than when I was on the Doxy do I ask to have more and for how long ?, as this dizziness drunk feeling is getting worse each day, I've had it since about day 9 on the Meds, I've now been off them exactly 1 week today ?

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    • Posted

      Talk to the Dr about it.

      You don't know how lucky you are to have a Dr who acknowledges Lyme Dsease.

      I don't see why a further dose can't be given but he will know.

      Some people take Doxy for much longer but there are also other antibiotics that have been used.

      On the other hand a month is suggested, by those who know, as beng sufficient.

      The "die off" of the bacteria(spirochetes) might be contributing to your dizzy feelings but I have never had Doxy and often felt the dizzness you.

      These bacteria reproduce so need to be killed at all the stages  so the last of the nymphs die.

      The whole thing is so complicated and remember we are all different so some will need more rigourous treatment than others.

      Meantiem boost your immune system with all that helps it get to max efficiency- the right foods and supplements , sun ? and exercise..

      Try Kefir for probiotics.

      Plenty of garlic and onions in your food. They say eat raw garlic but I can't Buy organic vegetables, meats etc if you can and fish(salmon is good). Almonds too.

      No sweet fruit.  but blueberries are good. 

      You would eb surprised at what a good diet does for you in this evil disease.

      The itches/ spots could be examined by a dermatologist who could(but won't) do a skin scrape. Few do. They would eb surprised by what they see.

      Also are you having sore feet or painful heels, nausea or change of appetite? Any car sickness? twichy , jerky lmbs, night sweats?

      Do you get a very dry throat 

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    • Posted

      No not many of them other symptoms, I've noticed some minimal shooting pains but they don't last long, I haven't had much or any pain, just this horrible fatigue/drunk/dizzy feeling, there's been periods today were it feels like it's gone, then all of a sudden it's back, last week one day I'd be ok then the next it would be back weak & dizzy, but for the 4 weeks of these symptoms they haven't changed, the same ones come and go.

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    • Posted

      If it;s Lyme it's probably your body reacting and fighting,

      If t gets no worse then good.

      If it's Lyme it's been treated in time and all will be well.

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