Anyone here had/has lyme disease as well as lupus... - LUPUS UK

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Anyone here had/has lyme disease as well as lupus? And how did it affect you?

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trueman
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Barnclown profile image
Barnclown

Good question. I just read a big Feature article about the state of Lyme disease diagnosis & treatment in the USA. It also briefly referred to other tick born bacterial infections. And tried to be objective & comprehensive in its reporting, I couldn't help but notice a similarity of sorts between SLE symptoms & lyme symptoms

I have been tested for Lyme, by my dermy just after my SLE (re) diagnosis within the past 2 years. Results came back neg, but it appears lyme blood tests are extremely unreliable: almost as argued over as SLE blood tests.....I know I have had lupus nice infancy, but I grew up in the USA and had plenty of tick bites there. My lupus diagnosis was kept secret fom me, so symptoms & secondaries conditions were treated individually until 2 years ago. I've lived & worked in the uk all my duly life, and never had a tick bite here. My dermy decided to test me cause i told her i'd recently developed cellulitis & a huge bullseye rash to an insect bite (treated by my gp with antibiotics...and hey hey i took great pics of it)

Whatever, am glad you asked this ?, and am hoping you get replies. The article mentioned that Lyme is usually treated ith doxycycline for several months, but now antimalarials are being used too.

trueman profile image
trueman in reply to Barnclown

Hi Barnclown. Thanks for the reply. Yes, I noticed some of the symptoms were very similar and was interested in knowing if anyone had experience of lyme disease. And quite similar to what I am experiencing. I remember have some bites a couple of years ago that came out huge circular red marks on my leg but didnt think too much of it at the time.

If you dont mind me asking why was your lupus diagnosis kept secret from you?! Thanks again for your response.

Barnclown profile image
Barnclown

Glad some help. My sister in the states spent a year battling through to the diagnosis & treatment of a tick born infection vvvv similar to Lyme. Her symptoms made me scared: to me, seemed she had a rheumatoid arthritis-like condition. Anyway, finally she got 'better', but in the course of her 'journey' I learned a bit about Lyme and have tried to stay up to date.

While my sister was going though all that approx 2-3 yrs ago, my lifelong health probs were coming to a head - i was 57 and had been diagnosed and treated for all sorts of conditions all over my bod without any dr or alternative practitioner ever connecting the dots. My feet & hands probs got so bad that my pain consultant finally said: hey, get the NHS to check you for an autoimmune condition (I'd never even heard the term, although my husband of nearly 30 years had had crohns all his life: in serious crohns research many experts are still careful about convictions re what this disease really is about). anyway, when a rheumy gave me the blood test forms to submit to our surgery's bloods nurse, I bothered to look at the scrawl on the forms. The only ord I could make out was 'lupus', the rest was abbreviations.

So, when my 90-something mother phoned fom the states & asked what tests were being done, I said: who knows, but 1 is for lupus. She said: but dear, you've ALWAYS had lupus! Typical ma! So I said: what's that? (I'd never heard of it). And she explained I'd been diagnosed as an infant in 1953-4 and again at least twice as a teen (always during really bad flares so scary that even I remember them (but i don't recall the ghastly rash when I was a baby)). My mother hates drs & is macrobiotic & a health nut (I do love her). She just kept hoping the lupus had gone away and never told me about the diagnoses....even though I had continual symptoms between those big flares growing up. She is good at compartmentalising. So, haha: I move to the uk at 21 and the NHS gets to help me cope with a load of classic lupus stuff until finally a hotshot nhs lupus expert rheumatologist diagnosed me in 2011. And to top that, then my NHS GYN told me, unprovoked, that she thinks it likely the 9 months in utero exposure I had to DES was responsible for my SLE.

So, I feel like a text book example of weird health or whatever. Sorry for such a long answer. I still am amazed by & a bit conflicted about the whole thing,

Are your drs testing you for lymes? Have you been diagnosed with lupus already? If you're in that pre-diagnosis state: I wish you all the very best! It's tough!

Take care

trueman profile image
trueman

Wow - thats amazing. Thank you for letting me understand a little more about your experience. I appreciate that. I wanted to quickly respond to let you know I will pop back with a longer response as I have not much time right now. So will log back in soon :) Thanks Barnclown.

Barnclown profile image
Barnclown

stranger than fiction i guess

will be glad to learn about you too, but no rush (although i am intrigued)

if you feel like private messaging via to forum message area, that's fine with me too

trueman profile image
trueman in reply to Barnclown

I've got 10 mins free at last! Well that is quite amazing that your mum did not tell you about your Lupus diagnosis. I can understand though that she thought perhaps that at a young age 'labelling' you with a health problem was something she would rather not do and see how it could be managed in the meantime. How did you feel about finding this out? Was it a relief in the end - an explanation for all those times you had flares? Thanks for sharing that.

I do not have a diagnosis of Lupus. I have just recently had some auto immune bloods taken and waiting on those results. I do not know that much about it. However, since I found out about Lupus and this site I have had some great support regarding the symptoms and health issues I experience and like to think I can offer words of wisdom from time to time ;)

Over many years I have had issues with my balance and coordination, various aches and pains, tingling in hands, down legs and numbness sides of feet, sometimes whole arm or leg but that is mostly at night and headaches/fatigue. I have been told many a time I suffer from anxiety and panic attacks. Last year I started twitching insanely. Told I had PNH (Peripheral Nerve Hyperexcitability after nerve tests and could be linked to auto immune diseases - told to watch and wait) and low Vit D. Earlier this year I kept getting a flush across my cheeks and neck with either low grade temperatures or complete drops in temperature. So I looked up facial flushes/rashes and discovered Lupus. I know this is the route of self-diagnosis but I was feeling so awful. Reading about Lupus, I suddenly felt a sense of relief because a lot of the symptoms seemed to match - and thought - hang on maybe I am not going mad!

I am now suffering from terrible balance issues that are getting worse. GP has arranged for a brain MRI and mentioned MS. So that's pretty much it really. I have found this site so helpful and supportive. It's really hard when everyone around you thinks you are just a little 'mad' or a 'hypochondriac' when you know in yourself something is not quite right.

Onwards and upwards though hopefully. I might look into the Lyme Disease thing though - if I get nowhere else. It is interesting how similar the symptoms are.

Thanks for your help.

Barnclown profile image
Barnclown

Thanks! Will get back to you properly soon: gotta cook supper. But I can relate to much of what you're going through, and quickly wanted to say so! My gp referred me to neurology for MS tests too...take heart...things will become clearer before long. It sounds as if you've got the attention of your drs, which is a real positive. Take care

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