I was just wondering if any of you still in Limbo had been tested for Lyme Disease, or if this has ever been mentioned? I keep coming across it connected to my selection of symptoms, and remember having a weird rash on my leg in my late teens, which is around the time I started getting random health problems. I have an appointment with my GP on Thursday and am going to mention it to him…wish me luck!!
Yes, was automatically tested for it - along with over 100 other things, according to my neuro.
I never knew all of them, but syphilis and AIDS were in there too, as was complete rheumatology screening, for things like lupus or rheumatoid arthritis.
Having said all that, I was diagnosed on BUPA, but I’m not led to believe the NHS would go about it any differently. Indeed, I now have the same neuro on the NHS that I first saw privately, so I can’t think he has a different approach in each - it’s the same person!
The only differences about going privately were quicker appointments, longer consultations (if wanted/needed), and a nicer waiting room, with decent - and free - coffee! All the diagnostic steps were the same, and the things they had to rule out were the same.
Tina
Hi purpledot,
Another one that can cause a rash called Livedo reticularis is Hughes Syndrome, see
http://www.hughes-syndrome.org/about-hughes-syndrome/skin.php#.U4mhZHJdVdw
Worth getting it checked as strangely enough there does not seem a set number of other
possible complaints to check for.
G
ggood - thank you for the link, but I’m pretty sure I’ve been tested for Hughes already. I’ve had look, though, and the rash I had doesn’t really fit with that, but fits exactly with a Lyme rash.
Well, saw my GP this morning and I have a test for Lyme Disease booked for tomorrow morning! Trying desperately not to get my hopes up, but at least he agreed it was worth testing for.
It’s so annoying waiting for diagnosis, but I didn’t realise there are so many Neuro conditions! All I know about mine is that (quote)‘it’s either MS or one of two other things that aren’t so nice’. I’m having another MRI next week which will show whether there’s any progression. It’s a long road I tell you. I hope that you get answers soon. I’ve often thought about whether going private would be quicker, but I don’t think it would. Keep us posted on how you get on xxx
Good luck, Beverley f…it is so frustrating and exhausting trying to get a firm diagnosis. I am determined to take control of my own destiny at last, as I have had enough “working” and “possible” diagnoses to last me a lifetime!
If it does turn out that I have Lyme Disease, then I will be sorely tempted to ask why not one medical professional in the past 30 years since I started to become inexplicably ill has thought to test me for it!
I’m not surprised Hun, after all, it’s not them going through it, it’s us! Quite excited for you, I mean, this could be the test to explain it all, then you can kick some bottom! If you need backup, I’m your gal 
x
Ha ha ha Beverley f…I might just take you up on that!!!
I was tested for it when the docs were trying to figure out what was wrong, was told since the symptoms are so similar they test for it. I was bit by many ticks when living in Canada, but no rash. a rash is actually pretty uncommon so people that do get bit by a tick and are worried should get tested but you do get a lot of false positive/negatives when testing for it depending on how long you might have had lyme disease.
and if it is lyme disease, some of the damage that was done might be permanent 
I was tested for so many different things, they took so much blood I almost fainted getting out of the chair. Was even tested for cat scratch fever 
llyme disease is not that common, so that is probably why you were not tested for it, sometimes it takes us bringing something up to get tested for it