Lyme Disease

[BijouxBibi]

Anyone have this? Anyone had it? I'm truly astonished at the lack of Lyme literate doctors in this country.

I believe my husband has it. He was bitten by a tick in late September but didn't realise that's what it was. As a consequence, he just ignored it. He plays high level golf at a club that's based on a Heath and full of deer and it's obviously where it happened.

He started experiencing symptoms in November - racing heart, ectopic beats, feeling off balance, brain fog, tingling sensations, pressure in his head and ears, feeling drained etc. It's worth mentioning that he's not been ill in two decades and is fit and healthy usually, he couldn't recall the last time he'd seen a doctor

Anyway, he had blood tests for everything and heart readings and all same back normal. The doctor refuses to treat him with antibiotics as he says its 'just one of those things' and ' all tests show you're not seriously ill so just see how you go.' It's been 9 weeks, I'm shocked that they'll dismiss someone who's got no history of illness bit is suddenly present in with all these symptoms

Anyway, I knew a little about Lyme and I know that time is of the essence when it comes to treating so I've bought him a two month supply of doxycycline from an online chemist - reputable I hasten to add! He's also takin oil of oregano and garlic along with 40mg of doxy a day. This is with advice from the Lyme disease association who are very good

Anyway, I wanted to know if we are alone in this? The LDA association believe that if you've been bitten by a tick and you have the symptoms then you must be treated. There is only one test available on the NHS for Lyme and it's wildly inaccurate.

Any experiences?

No we don't live anywhere near the New Forest.

When I was a small child in the 80s we lived in the States where there was a much greater level of awareness of Lyme disease. I remember having to be checked for ticks every night at bedtime.

Anyway, we moved back to the UK and when I was 14, on holiday in France, I was bitten by a tick. I knew what it was and showed my mum. She helped me to pick it off and 'kept an eye on me'.

Two weeks later, back home, I started complaining of some of the symptoms associated with Lyme disease. I can't remember what they were now, but because of my mum's familiarity with it from our time in the States, and as she knew I had had a tick bite, she took me to the GP who immediately referred me to the infectious disease clinic (at Heartlands hospital I think) where I received precautionary treatment.

I've had symptoms similar to your dh on and off for the past 20 years. They started about a year after I got back from Camp America (East coast, we were warned about ticks but I didn't pay much attention) I found a tick in my leg but never had the bullseye rash. When my symptoms started I was convinced I had MS but the Mri was clear and I had another Mri 15 years later that was also clear so Ms has been ruled out. I've never got to the bottom of it. I went for one appointment at Breakspear, when I started to look at the Lyme possibility about 3 years ago, but I wasn't sure about the place to be honest. My symptoms have come and gone over the years and I'm currently free of any neurological symptoms and have been for a whole, so I have no idea whether it is Lyme or not. It's a mystery to me. I wouldn't be surprised though if in the future we come to realise that many people with these kinds of symptoms or ME, do in fact have Lyme Disease. We definitely need more research into this.

Thanks Snuffle, I appreciate your response .. The doctors he's seen have been 'good' in that they've listened and done full bloods for diabetes, liver, kidneys, all the usual. Glandular fever. They've sent his heart ECG results off to a cardiologist who said they were normal - yes, he has suddenly developed ectopic bears and a fast pulse but this has been deemed normal.

Blood pressure normal, everything normal. So they've admitted that they're stumped. Categorically said that its not MS.

His main symptom at the moment is a pressure and tingly feeling in the base of his skull and round his ears. His face tingles and so do his hands and he finds the pressure really distracting. His voice is a little hoarse too although I've had to tell him that you can just lose your voice a bit for no obvious reason! His balance is a little better but he still feels a little off balance and then generally he just feels 'rubbish '

He's usually so upbeat and full of life so it's been very very upsetting for me to watch him like this. He's worse in the mornings usually.

But there's no pain, he doesn't feel sick, he's got no obvious lumps or bumps and his vision is fine. So what the hell is it if it isn't Lyme? It HAS to be an external factor of some sort doesn't it?

Thanks for the other messages, off to read them properly now

The doctor said to him ' if I was going to refer you Nywhere, I wouldn't k ow where to refer you to'

Given that his symptoms are now mainly neurological, would a referral to a neurologist be something we could ask for?

I'm very tenacious and I can't just accept that this is one of those things because it hasn't been for the past 43 years of his life.

He's nothing like me by the way and is most bemused by my err drive ..

Dont get me started on LD! Ive had it for 3 years now. I had 1 positive test and 4 false positives since. I still get symptoms but they dont want to know. If I paid to send my blood to Germany I would test positive.

A friend of mine has tested positive 3 times, she cant remember being bitten by a tick. She now tests false positive, the NHS now deny she ever had it.

Push for a test. The only light at the moment is poor John Caudwell and his family. He is putting a lot of money into research etc.