Lupus or Lyme?: I was diagnosed with Lupus in 201... - LUPUS UK

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Lupus or Lyme?

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I was diagnosed with Lupus in 2012 with strongly positive ANA results. I have the fatigue, joint pain, mouth ulcers etc. I am on Hydroxychloroquine.

The onset was quite sudden and followed menopause. However, I had also been working in long grass for some time-a place likely to contain ticks. My question is: Has anyone on this site been diagnosed with or suspected of having Lyme disease?

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I'm sure there are a few..similar symptoms.

Barnclown profile image
Barnclown

I agree with ferntree.!

my v lupus-experienced nhs rheumatologist diagnosed my sle 4 years ago when I was well into menopause in my late 50s after a lifetime of secondary multisystem conditions being diagnosed & treated by various nhs clinics. So then all my other consultants learned about this lupus diagnosis, and that it had turned out my version of lupus had been diagnosed in the states when I was an infant & teen but no one told me so I moved to the UK at 20 unaware of the lupus. Anyway, at that point, my dermatologist then insisted on testing me for Lyme disease, amongst other things....the Lyme results were neg....but she did spot low gammaglobulins (that's another story!)

since then, my little sister in the states came down with a version of Lyme disease (anaplasmosis) in her early 50s & went through the wildly crazy complications of being tested, diagnosed & treated...my impression is that this process can be even more complicated than for lupus. Anyway, she found the right Dr within a few months, somehow, and was on daily doxycycline for several difficult months...she is well now. But I watch her carefully for autoimmune symptoms....she & I are v similar physically....

Over the past 4 years, my impression is that drs can be encouraged in their diagnoses when we show clear positive response to whatever meds we're prescribed...I still wonder occasionally if maybe I do actually have lyme disease, but i' ve been responding so well to my lupus meds, and my drs seem so confident in their diagnosis (even though I'm currently seroneg) that I try to just stop the Lyme-thoughts when they surface....diagnosis is such a tricky process for so many of us...my feeling is that in, say, 50 years time, drs will understand a lot more about our sort of conditions and regret what patients like us had to go through....

in reply to Barnclown

Thank you for taking the time to reply. My nephew has been diagnosed with Lyme and my sister wants me to be tested as many of our symptoms are similar. I am, however, responding well to my Lupus meds so at the moment my attitude is 'If it ain't broke, don't fix it.' Good luck and thank you.

Barnclown profile image
Barnclown in reply to

Sounds good to me!

You may get more replies - I hope so cause this is an interesting subject. Thanks for asking your question

Take care

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