Advice on how to approach doctor please?

[Kellyd1979]

Hi, please forgive my lack of knowledge, I literally stumbled across an article on lupus last night and am almost certain it is the answer to my problems of nearly 20 years, and I have just looked into it on the NHS site which also makes me think this but makes no mention of tick bites which is how I initially came across it.

Sorry I'm rambling, but I have a doctor's appointment this afternoon and am wondering how to approach it.

Basically in 1997, whilst in Luxembourg, I got bitten by something on my leg, I though it was a fly and brushed it off, however I soon had an enormous raised circle rash that went over my whole thigh.

A few months later, when back in the UK I had a ringworm like rash appear on my leg, and over time they appeared on my torso and arms as well. I asked several GPs what it could be on and off over several appointments and finally a locum asked if I had been tested for thyroid (I hadn't but this came back positive for hypothyroidism which I have taken medication for ever since-175mg per day ). This seemed to help clear the fogginess from my brain at first although it still returns often, and my tiredness is almost constant. The marks on my body went whilst pregnant but came back again and have now been diagnosed as granuloma annular. I have other skin issues which are unknown what they could be. My hands and feet swell massively, sometimes for months at a time, and I often get head pain so severe I lose vision and looking down even to eat makes me feel dizzy for ages. I have constant pain in my back, as well as pretty much everywhere most days and feel like I am 90 years old. If I push myself to have an active day with my children, afterwards I feel so tired I literally could fall asleep anywhere.

I was told I probably have fibromyalgia which I felt was just something they said to 'answer' my concerns, but what got me looking into it again was when I recently got bitten by something on my arm and I reacted so badly to it, even 2 weeks later it still itches like mad, which reminded me how where I got bitten in 1997 sometimes still flares up, with a visible bite mark and small red ring around that itches.

The article i found linked a bite to lupus but there is nothing in the NHS website about it. I have a doctor's appointment today but don't know what to say so I don't sound like a hypochondriac idiot. Any advice you can give would be greatly appreciated. Sorry for the essay!

[Paul_Howard Partner LUPUS UK]

Hi Kellyd1979 ,

Have you ever been investigated for Lyme Disease? Lyme has a lot of similar symptoms to lupus, is difficult to diagnose and it caused by tick bites.

I'm not aware of any evidence of insect bites triggering the onset of lupus, though certain infections can be potential triggers. I imagine the article you found was about Kirsty Keep? You may want to read our recent discussion about that story here - healthunlocked.com/lupusuk/...

We have a booklet called, 'A Short Guide to Lupus and Visiting your Doctor' which has some advice for getting the most out of doctors appointments. You can read and download it at lupusuk.org.uk/wp-content/u...

[Purpletop]

, I agree with Paul, that's probably a tick bite, you need to insist on getting tested. Testing isn't very reliable if there has been a while since you've been bitten (1997) but as you've had a recent one, it's worth checking. I'm surprised that the bite is on your arm, though, tick bites are usually around areas less exposed, like scalp, or navel, that kind of thing. Do you live in an area with deer around?

[Purpletop in reply to Purpletop]

P.s. I meant get tested for Lyme.

[Kellyd1979]

Thank you for your replies, I saw the first one before I went to the doctor and it seems she thinks it could be possible so I just need to try to get an appointment for a blood test so thank you again.

[Hidden in reply to Kellyd1979]

My cousin has Lyme disease and it was only diagnosed years after the tick bite so it crossed her placenta and has affected her two young sons. Consequently they are all on a low dose antibiotic permanently now - plus supplements. The treatment is given to boost the immune system which is exactly the opposite to treatments for connective tissue diseases, but symptoms are very similar indeed.

Good luck with tests and don't get fobbed off - your experience and symptoms certainly sound very Lyme like. It may also be worth looking into Mast Cell disorders too as a severe reaction to insect bites is a key feature of these too.