I think I have lyme disease. Anyone awake?

Posted , 8 users are following.

Hi. I'm currently at a loss for what to do and am pretty terrified right now. My name is Beth, I'm 19 years old and have been ill for the past 7 weeks. Doctors have been unable to explain it and started off by giving me antibiotics for a kidney infection I thought I had. Something strange happened whilst on these antibiotics. I reacted to every single one of them. Bar one. Amoxicillin. I initially felt miraculously better after taking this... of course this only lasted a day, and I started herxing (I believe that's the term?) which brought on a whole mess of neurological symptoms, all of which were attributed to an allergic reaction to the things. I was asked to come off them because they could see no signs of a kidney infection, I was in disbelief. Why did I still feel wrong? Was diagnosed with hyperventilation syndrome as an explanation for the neuro symptoms and was sent away.

Two days later, I was hit with several fatigue, a pain in my right hand, lower abdomen and head. I thought I'd contracted the flu because I was so run down. Hypervigilant as ever, I galloped to the doctors. I looked fine, glands were swollen though so they suspected perhaps glandular fever. Blood's were taken. Came back fine, slight inflammation, so was told to, effectively, get over it. That I'd been to the doctors so many times it was likely anxiety.

Tried to deal with that diagnosis, was experiencing stabbing pains in joints and muscles randomly. Was then woken by extreme vertigo in the middle of the night. Continued to experience weird seizurey type episodes, usually at nighttime, with tremors, muscle spasms and strange sensations. Parents were completely discarded at the night I'd take off work, unable to see what was going on.

I've since been referred to a general specialist (contradiction I know) who happens to officially specialise in infectious diseases. That won't be til next Tuesday. After wondering for a while now if I had lupus (sun sensitivity, rash on face) I happened across lyme disease. Kinda saw the similarities and have spent the last few hours cross referencing the events of the last few weeks with the progression of lyme disease.

Currently I'm sitting on the floor of my room, experiencing heart palpations, chest discomfort, tingly extremities, burning face etc. Looking to book an emergency appointment with a gp tomorrow in light of my recent discovery. Considering also whether it'd be helpful to cut out the middle man and go to a and e tomorrow morning, as I'm not sure what stage of the disease I'm at and I know a and e are often able to deal with these things in a more timely fashion.

My questions to you: is it normal for lyme disease sufferers to have a facial rash aggravated by sunlight?

I'm terrified of the prospect of herxing again, particularly when my symptoms are already terrible. Do I wait to see the specialist or book a Gp appointment for tomorrow?

I'm not sure whether this has been lying dormant or not, so as I say, I'm unsure what stage I'm in. Terrified. What's going to happen?

0 likes, 41 replies

41 Replies

  • Posted

    Parents were horrified at the amount of time taken off work*

    Sorry, there's so many mistakes in what I've written. Feeling panicked.

  • Posted

    Were you tested for lupus and a general autoimmune panel? Is it possible the rash is an allergic reaction to a med you're on?
    • Posted

      Hey, thanks for replying.

      Haven't been tested officially for autoimmune as other blood tests have indicated normal WBC count, apparently making lupus unlikely.

  • Posted

    WBC count would be connected to infection (or in some cases an allergy). The sed rate and ANA would be the lupus markers.
    • Posted

      According to my GP WBC count would be lowered in lupus. I do need to investigate the ANA.

      I have basically all the symptoms of lyme, even reacting to a penicillin based antibiotic which is used to treat early stages of lyme. I'm pretty terrified right now, especially with this rash on my face which confuses matters.

    • Posted

      Apparently lyme can cause facial rashes. Well, so I've read anyway. Along with loads of skin problems.
  • Posted

    I'm really sorry you're feeling terrible. Your best bet would be to find a Lyme literate doctor, LLMD. They know what to look for and understand the combinations of symptoms with blood tests better than your average doctor.

    The problem with Lyme is that it can manifest differently in different people. But just because you look okay and your blood tests come out normal, doesn't necessarily mean you don't have Lyme. I think it's possible. But one of the ways to diagnose Lyme is to rule out everything else. So you'll probably still get tested for multiple things like Lupus and rheumatoid arthritis.

    There are specific labs that test for Lyme. You just have to have a medical professional draw your blood and you can send it to them. But they can be pricey.

    Basically there is going to be more testing in your future regardless. If you suspect Lyme, then find someone familiar and well versed with it. Until then, just keep track of your symptoms. Whether you have Lyme or not, it'll help to see if there's a pattern or if your reacting to anything. Good luck and I hope this helps.

    • Posted

      Thanks for your in depth response.

      Luckily I live in England so I'll go through the NHS. I hear there's debate over the chronicity of lyme disease, whether it exists or not. That doesn't sound too promising if doctors can't even accurately acknowledge the exist of the disease! Perhaps there have been changes in recent times but the articles I've read haven't been too hopeful.

      Anyway, thanks again.

    • Posted

      I live in the US and even though they're are tons of people here with Lyme, it is also still debated. Some doctors don't believe in chronic Lyme, others think you need only three weeks worth of antibiotics, others think it only exists in the northeastern part of the country. It's ridiculous especially when you hear stories from patients who had to suffer for years because doctors didn't believe them and refused to treat them. Plus there are a bunch of politics involved with the insurance companies not wanting to pay for treatment and doctors losing their licenses because they actually did treat their patients with Lyme. It's sad and frustrating all around.

      I'm not familiar with the UK ones, but it might be good for you to find some support groups for Lyme. They could probably recommend some doctors for you. They're is a online forum at Healing Well that has a bunch of information that could help. I know some members are from Europe, so maybe they could have some suggestions for you. Just type in healing well and Lyme and you should be able to find it.

    • Posted

      I have been experiencing the same symptoms as you for 7 years. First they said I had anxiety then after 3 years said I was hyperthyroid. Now been on anti thyroid meds for 4 years and still feel awful but meds help slightly. I got tested for lyme in USA which was cdc positive on 7 bands IGM, but negative on IGG as only 4 bands positive. Regardless UK refused to accept result and the UK test was negative.

      They need to test you to rule out a few things. Do you get bad stomach pain? If you run a nail along your skin does it mark? Are you getting flushing of the face? Do you feel ok sometimes and then get intermittant bouts of worse symptoms?

      I have had most tests going with some pretty weird results but no diagnosis apart from thyroid.

    • Posted

      Hiya. Yeah my my face is pretty flushed. I have a rash too. I do get stomach pains buy they are very rarely extreme. And yes I definitely do experience bouts of almost-normalness. I'm really frightening this isn't going to be treated properly.
    • Posted

      You need to rule out hyperthyroidism first and perhaps check there isn't an adrenal problem by checking metenephrines. Another thing that can cause allergies and flushing are methylhistamine problems. Of course it's difficult to say but if you have the typical red across nose and cheeks then lupus would be more likely. Antibodies seem to go nuts once you have had an allergic reaction.

      My illness started with allergist reactions to antibiotics and then anaphylactoid from a steroid injection. 7 years later and docs still don't understand what's wrong. This illness scares the hell out if me most days it'slike my body has gone nuts. I am now so allergic to perfumes and pesticides that i can't leave the house without a mask. I can't go to malls and life is difficult.

      i tries eating garlic as it'smeant to kill lyme but within a wweek I was covered in boils and got really bad symptoms so istopped

    • Posted

      That's terrible. I'm sorry life is so hard for you.

      Someone I've been speaking to has just suggested hyperthyroidism. You say this happens after an allergic reaction? Have you ever been to a naturopath? If so, any luck?

  • Posted


    Sorry to hear that you're suffering and yes, it's very scary not to know what's happening to you. If you suspect Lyme Disease, I suggest that you try and find a doctor who has had experience in dealing with it. There doesn't seem to be a unified response to Lyme Disease in the UK. Last summer, I was bitten by a tick in the garden and had a bullseye type rash on my knee. Despite the fact I was presenting with all the classic symptoms of Lyme Disease, my local surgery didn't diagnose it for 3 months and gave me a 28 day course of Doxycycline antibiotics. My mother in law, who was staying with us at the time also got bitten and her GP in Manchester was much more open minded. He immediately put her on antibiotics and told her he would continue antibiotic treatment until she was well again. He'd recently been on a tropical diseases course, so was more educated about Lyme Disease.

    In the meantime, I suggest you find out as much as you can about LD. You can also try looking at the Lyme Disease Action website, which is a recognised source of information and who I found absolutely invaluable when I was ill. http://www.lymediseaseaction.org.uk

    Good luck!

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