I've been diagnosed with advanced Lyme disease

[fabmaccawhackyrhumbsaloft]

For two years I've been absolutely struggling with a raft of unexplained problems that have severely hampered my quality of life

Today I had an appointment with a consultant who took an hour and a half with me , was brilliant, and told me I have Lyme disease

I tested positive for the antibodies associated with the condition

It explains all my debilitating symptoms

He told me not to google as he said there are conspiracy theorists and it's a political hot potato

I've been getting progressively worse and it appears the bacteria is in my brain, and nervous system,

Has anyone else had untreated Lyme disease and made a good recovery?

I do not recall being bitten by a tick but I have dogs and I'm guessing I was bitten on a walk

I thought ticks were big but apparently they can be minute and not something I'd necessarily notice and I've never had a rash but the bloods and lumbar puncture have confirmed the diagnosis

I've had debilitating inflammatory arthritis, heart issues , brain issues and problems with an eye resulting in the loss of fields

I'm looking for success stories please !

Its advanced and I've read that some damage can be permanent.
Im starting treatment tomorrow

I hope your recovery goes well, OP. Don't know anyone who has had it but agree there does need to be more awareness raised on this issue.

Ticks are tricky. You don't always know you have been bitten by one because the little blighters drink their fill and then bugger off. A tell tale sign is a red mark on your skin that looks like a bulls eye. If you ever see anything like that or you find a tick attached to yourself you should contact GP for advice. And don't try to pull the tick off yourself because the head will remain inside and cause an infection. Ticks also tend to like moist places like armpits and groins - not places where you are likely to either notice them or bullseye marks.

It's a bacterial infection so I don't think there's any staving it off with a positive mental attitude tbh , and by the time it's affecting the brain, spinal cord and the whole body I think it's really down to the antibiotics

Yes, it's more in relation to what the pp said about depression. It's about choosing how much it affects your life once you come out of this acute phase of being very physically poorly.

I agree more awareness is needed

I didn't even know I'd been bitten , no rash , no tick seen , but I did walk my dogs across grassy fields and footpaths in farmers fields

I'm guessing I was bitten and then the little sod dropped off without me ever being aware

(My friend did point out the episode of house where the tick is somewhere unimaginable 😂) but I suspect he bit me and dropped off without me knowing

Probably true

I've become quite the hermit which isn't like me at all . I think the pain of going anywhere isn't worth the gain presently but im really hoping that changes

Sorry to hear this, OP. Glad you have a diagnosis. Friend of my brother's in similar circumstances - years of terrible symptoms, even had heart surgery at one stage - has made an excellent excellent recovery after treatment. Good luck to you.

Honestly thank you the tales of peoples recovery is really encouraging

I ended up having two ecg for heart issues (forgot that bit ! ) but luckily it's not affected my heart yet other than palpitations

Glad they have found out what is wrong with you OP and good luck with the treatment.

Thanks hells

Dsd had it, took months of antibiotics but is fine now

My eye issues , I had an optic neuritis which caused loss of vision in one eye.
I had put up with it for 5 days then went to opticians who sent me straight to a&e

Why put up with loss of vision for five days?

The nymph tick most likely to pass on Lyme is the size of this full stop.
They can be tiny and impossible to spot if they are in your hair or on your back etc. i live rurally and I worry about Lyme, cases have been rising for years but it is also hugely under diagnosed. The bulls eye rash only happens in about a third of infections, so even that isn’t a reliable marker.

If you ever see anything like that or you find a tick attached to yourself you should contact GP for advice. And don't try to pull the tick off yourself because the head will remain inside and cause an infection.

Sorry but this information is incorrect. You can get correct info from NHS here about getting the tick out and when you need medical help. https://www.nhs.uk/conditions/lyme-disease/

i hope you’re treatment works quickly @fabmaccawhackyrhumbsaloft and you begin to feel better soon.

No experience but good luck with treatment OP x

@LizzieSiddal

You don't need a GP to get the tick out for you but you shouldn't just yank it out, which is what some people's gut instinct is. That is when the head gets left in.

If there is a possibility you have been exposed to lyme disease, you are better off speaking to an actual doctor than relying on Dr Internet. There was a doctor on the news not so long ago saying that if you think you might be at risk of lyme disease you should contact your GP so I'm choosing to go with that advice.

@LizzieSiddal

Actually, that link says the same advice I have. If you've had a tick bite or start developing symptoms after going to a place where there is ticks, call your GP.

Bloody hell OP - sounds like you've had a terrible time . Glad you have finally got a diagnosis and wish you all the best.

I'm booking myself in to medichecks for a blood test @fabmaccawhackyrhumbsaloft - thanks for the post.

Like you I had loads of weird symptoms come on out the blue last September- not quite the same as yours but dizziness, a weak leg that felt like it was encased in concrete, pins and needles, then bad headaches, then very very sore eyes -(but no problem with actual sight) then neck ache- they seem to come in spasms too- like flares. Blood tests showed a few oddities and deficiencies but corrected and I'm still getting nasty neuro stuff coming and going. I've put it down to long covid - but I think it's worth testing because literally the week before it started we were living in Windsor and I did an hours walk up the long walk - and stupidly I think I was wearing sandals as was very hot. They have deer too. I don't remember a noticeable bite but then if I'm honest I am a magnet for mozzies, so always have bites and might not have noticed it.

I’m 13 years down the line from diagnosis; 99% recovered now; I was diagnosed overseas where Lymes awareness is much greater - I’d not considered it at all and had treatment there and finished here under the supervision of an infectious and tropical diseases consultant.
Good Luck OP, I hope your recovery is both swift and easy.

There is a good few support groups on Facebook, I’m off social media completely now so can’t look up the proper group name, but they are there.

It wasn't a full loss to begin with

To start with it felt like had the wrong glasses on

Then it was like I'd stared at a. Right light too long and had that after vision wherever I looked and finally I lost sight and had pain when I moved my eye and that's the day I went to the opticians

I do live alone tho so had to get a friend to take me who is actually an optician, and it was his advice that made me go and he came and picked me up
It's easy to say but when you're alone and you're just hoping it will go away , stupid maybe but when I talked to my optician mate I realised it was serious. And went the same day .

I’ve had it but I knew I had it and I fought to get antibiotics quite early on. They weren’t quite the right ones but they were good enough to deal with a lot of it. I had a degree of liver damage for a while, numerous other minor bits and one scary collapse. As time went on I had fewer flare ups and they became less severe. I’m fine now. Hopefully you’ll recover well too.

I have several tick hooks. They're very cheap and effective at getting the whole tick out with a twisting action.

I keep one at home in the medicine cabinet, another in my rucksack and another in the wash bag I take traveling. Ticks seem to go for some people more than others and I'm one of them. I get them every year and always check myself over after a walk or sitting on the grass if I think there's any chance of one. My DH has had one in about 10 years. I've had a least a dozen in that time. And yes, they like warm, damp places like backs of knees and groins!

Sorry to hear about your diagnosis OP, hope you will be on the mend very soon.

Thank you

I honestly never considered ticks to be such a problem and since I wasn't even aware of a bite 🤷‍♀️

Friend lives in a part of New York state that's well known for ticks. The doctors there are on the ball so she wàs treated quickly. Ticks in the UK have increased a lot they're well known in our area due to so many sheep, local FB pages report anyone who's been bitten.

There's a good mapping system you can Google to see where they are prevalent.

@fabmaccawhackyrhumbsaloft re your dogs Google cinnamon trust. They're a charity of volunteer dog walkers who can take your dogs out until your health improves.