Could I actually have Lyme Diease?

OK so the media is covering a few stories on this diease and their was one that really caught my eye today. A girl with lupus who was bitten by a tick could have Lyme. Now I have done my research on this and strongly all my symptoms point to Lyme, I too have been diagnosed with Lupus but can't remember any tick bites but again, these symptoms just cropped up. Again I am on usual medication for lupus and still have good or bad days. However lupus and lyme both can have the butterfly rash and organ involvement...now I'm starting to wonder. On the other hand to me it wouldn't see like the end of the world but all though I can test for it if it comes back negative it doesn't mean I haven't got it, so how can I ever know I'm really worried and would rather know the right diease so I can look for a consultant. Can anyone help me if they know something that Lupus does that lyme doesn't any help would be well and truly appreciated on this one.

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  • Hi Danielle

    I know exactly what you mean. I have self diagnosed three possible conditions, but getting the medics to hear us is a pain.

    Have you tried talking to your GP or Rheumy? Thats your first port of call I think. Relay your symptoms and how you feel and see if your doc will do tests. If he seems reluctant, say a friend has Lymes and you feel similar.

    We on here are finding docs reluctant to do a lot of speculative tests unless you have an attentive GP or consultant. I hope you are a lucky one.

    If you are not being heard perhaps try another GP.

    It takes so much patience having these complex condiions like Lupus, and remember Lupus mimics other diseases which hardly helps. Also remember stress is the worst thing for Lupus sufferers so try to stay as calm as you can. We on here know all about the frustrations of a being diagnosed and being diagnosed correctly. It is a long uphill slog usually.

    I was diagnosed with Lupus 12 years ago in a flash, but it has been agony ever since trying to get a diagnosis for the rest of my Autoimmune diseases.

    Have a try with your docs and see how you get on. I would give you a piece of advice that may sound condescending, which it isnt. Practice what you want to say, write it down if you think you may go off point, but be calm and reasonable when you speak to docs. A lot of them love to label us, most unfairly, as doc botherers and you do not want to come over to them like that.

    At the beginning of a Lupus journey, everything seems scary. There are so many possibilities. I think it possible that you may have some related diseases on your journey but it takes some time to get the disease and the diagnosis sorted out.

    Good luck Danielle, I hope this helps. Remember you are not alone. All of us on here share your feelings, worries and symptoms. Hang in there

    Lots of love and support

    ⚽️

  • Hi, I have thought that too. There is a good documentary called "under our skin" and it's all about Lymes disease and misdiagnosis from doctors. There is also a good Facebook page you can join and chat with people.

    I would say find out about it as much as you can first. Lymes disease is hard to cure also and like you say the tests can be negative especially if you've had it for a long time.

    I've wanted to ask my Rheumatoligist for a long time but worry about what he thinks. I don't remember getting a tick bite either but I've always had pets and I have a really bad reaction to bites, and wondered if it's because my immune system remembers and is trying to protect me.

    I just don't know but there is a famous guy on Facebook and I don't remember his name. He owns a phone company. All his family has Lymes disease and he is trying to get the knowledge and help out there.

    I don't like lying but it might help to say you remember being bitten. They might take it more seriously. I wish you all the best on this journey.

  • Danielle, look at the following:

    belmarrahealth.com

    "Lyme disease vs Lupus, difference in symptoms, causes and treatment options.

    Interesting.

    Take care Nx

  • Here is the direct link to the article, in case anybody can't find it - belmarrahealth.com/lyme-dis...

  • Thank you Paul for putting that right, appreciate you picking that up.

    Regards,

    Nx

  • Hi Daniellelupuschick,

    How were you initially diagnosed with lupus? Was your blood tested for various lupus autoantibodies? If these tests came back positive and you experience the symptoms and triggers of lupus, then it would be very convincing evidence for a lupus diagnosis.

    I can understand why you might bring your diagnosis into question if you feel that your current treatment is not very effective in controlling it. It may be worth having a discussion with your doctor about this in case you have some symptoms which might be explained by an overlapping diagnosis or whether a change in your treatment regimen may help?

  • Hi Paul I had tell tale signs of lupus butterfly rash, rash on wrists, pain in joints shoulders knees and hips, swollen hands and hair loss was hospitalised I got diagnosed by Dr khamastha and Dr David cruz at St Thomas I was diagnosed with Hughes syndrome alongside the lupus. To be honest i haven't wondered until now. I had positive Ana antibodies and still do even though im quite mellow with lupus right now, I still show positive lupus anticoagulant and positive rheumatoid factor so am still unsure if this can still link with lyme also as my research has suggested it can. I would feel quite disheartened if it was the case as I have had it for over 4 years now and do my best in raising money and awareness for lupus it would be like I cheated if it was lyme

  • Hi Daniellelupuschick,

    Prof. David D'Cruz is one of the leading experts on lupus in the UK. With a combination of the symptoms and blood test results that you had, I would imagine they provide very strong evidence to support a diagnosis of lupus.

    I am not medically trained and I do not have very in-depth knowledge about lyme disease, so I could not say whether your diagnosis could have been incorrect or not. If you are really concerned about this, it is best to discuss it with your consultant and they can either explain the evidence confirming your current diagnosis, or perform tests for lyme disease to rule it out.

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