Does anyone else who has Inflammatory Arthritis but n... - NRAS
Does anyone else who has Inflammatory Arthritis but not sure which kind ever wonder whether they might have Lyme Disease Arthritis?
My cousin has Lyme disease arthritis Feather. She was diagnosed in France where she lives by her GP who sounds brilliant. Sadly she also discovered from a blood test that both her young sons have it too so by that she knows that she must have had it for a long time for it to have been passed via the womb. She is okay most of the time I think - although I imagine it does impact on her life as a clown/performer/ acrobat. She takes done sort of homeopathic remedies for it and rests when it flares and keeps herself very fit so it doesn't get on top of her. I think it's hard to diagnose and a fairly controversial area with the medical profession - much more known about and understood in parts of the States where the deer population proliferate. She told me about it because her dad told her about my RA and she says they are easily confused - but I've never had a tick bite and my rheumatoid factor is positive.
I think from what she has told me they are treated in the opposite ways and with Lymes the immune system is boosted rather than suppressed. Worth researching further if you feel you might have it as the earlier it's caught the more chance of complete recovery. Tilda xxx
Really interesting, thanks Tilda.
I've heard that the UK might be missing a few tricks (no pun on 'ticks' intended!) with regard to LDA, especially compared to the US. I live in Shropshire & walk in woods every day and before that Southampton - often went to the New Forest, loads of deer there and I have had ticks. I actually do not think it quite fits with my symptoms but I agree that I might as well delve a little, especially as treatment differs. x
Yes I think it's a good idea to delve if only to rule things out for yourself while some uncertainty hangs over your diagnosis of what type of inflammatory arthritis you actually have Feather. Tilda xx
I did wonder about Lyme way back when in the early days, as I knew about it from working in countryside and do hang around in bracken quite a lot! But after a while my symptoms looked more and more like classic RA so never followed it up.... I'd have thought that GPs in the New Forest and other tick areas would all know about it, but obviously not. Isn't there was a relatively reliable blood test? So maybe easiest would be ask GP is this could be done? anyway, at least you don't have to worry about tick borne encephalitis here.... pollyx
i wondered about that one too because my joint pains came on fairly quickly but i thought that lyme disease was caused by a tick bite? i googled 'lyme disease images' and pictures of a rash (nothing like any of my rashes) came up so i crossed that one off the list.. maybe if you'd been bitten in place where you couldn't see the rash then that would make lyme disease a possibility but it's probably very unlikey. wouldn't lyme disease also show up in a blood test? i think the doctors also find raised protien levels in a urine test too if there's an infection we're fighting, so i think that lyme's would probably have been spotted by now.
ask your doctor for a blood test just to be certain, that'll help put your mind at rest 
Thanks rattusrattus, I've checked out quite a few sources online about it & the majority say that the rash doesn't always appear. Also the arthritis can come years after a tick bite & I believe that by that stage blood tests are often inconclusive.
In fact the overall impression I get is that early Lyme disease isn't easy to diagnose but the arthritis is a real pig to diagnose & often confused with other forms. I don't think doctors routinely check for it in the UK. I seem to remember reading that a lumbar puncture might do the trick ... hmmm!
It's just something that's been puzzling me, not worrying me ... I will ask my GP but as Tilda says I think I will have to do some more careful research myself, too. I might contact Southampton General Hospital, Polly's right, they should know. Thanks all, for your thoughts. xx
I don't think they look for Lymes routinely in the UK although the lyme borne ticks are hugely on the increase over here in parts of Scotland and elsewhere I know. Best not to assume they will be sensible and be sensible for yourself I feel these days. Tilda xx
Sorry for the late reply, have also wondered about this myself. When all my joints started playing up and my GP first investigated, I asked her to test for Lymes as I have spent quite a few hols at relatives in the Eastern States (they actually have to spray their garden against the deer ticks, as it is so prevalent). She ordered a test (i think it is called the ELISA) which came back negative, but from research I have discovered the test may not always show up positive, and as for the rash, it's also quite possible never to notice one. Interestingly, was speaking recently to work colleague whose relative was diagnosed many years ago with MS (after an initial suspicion of RA). It now turns out she has tested positive for Lymes and believes may have picked this up whilst in Switzerland.
I'd be interested to know what you find out.
Caroline.
Hi, my daughter who has Chronic Pain and ASD, now has POTs, Chronic Infection (possibly Lyme), Hypermobility Syndrome and Epstien Barr, all this from going private, or we would just have had the chronic pain diagnosis for ever. The Elisa test usually comes back negative, especially with Chronic Lyme. The HPA have just changed the way they do the testing it's not at Southampton anymore it's at Porton Down. There are many co-infections with Lyme including Bartonella and I understand that most people get their bloods sent to Germany and go private to Breakspear Hospital in Hemel Hemstead, but it's very expensive. I think the lab is called Infectolab and you could get your GP to draw your blood and sent it via Fedex to them which may cost less. However, if you get tested positive by the lab in Germany the NHS do not have to take it as red and it's discretionary as to if you'll get treatment on the NHS. I think things are slowly changing, the NHS choices website has recently changed their text to admit to Chronic Infection of Lyme Disease which they didn't before. Also, 50% of people with Lyme have never had the bullseye rash and it could take years after being bitten (unless your born with it) to get arthritis symptoms. There are many good forums about Lyme on the internet. Lyme disease mimics many other illnesses including ME, MS, Fibro, CFS and it's epidemic across the south of England especially the New Forest but you could also catch it in Richmond Park. If you get bitten by a tick, remove it carefully so as not to stress it out with proper tick removers. Some of the ticks are so small they are the size of a pin head. Best wishes, I hope this helps, Sarah x
Loads of food for thought! What is it with the UK and Lyme disease? It's not as if it has just been discovered - my Mum had MS and her doctor did discuss the possibility of Lyme with her, not sure if she was ever tested, but that was in the '80s! The process of getting a blood test seems quite daunting so I don't think I'll try the Germany route just yet, but I'm going to save your post for future reference, thanks! I hope your daughter's diagnoses have improved her treatment options.
Christina xxx
Thanks Feather, It's always worth getting tested on the NHS it might have improved. If you ever have to take any antibiotics for anything, do you find your symptoms are not so bad. My daughter has recurrent UTIs and when she has the antibiotics for that her pain is much reduced in her knees / hips, but they will not extend the course, against guidelines, so her pain comes back when she stops taking them.... bada-uk.org/ lymediseaseaction.org.uk/ I've found these two links very helpful
