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

Wishing you all the best for the treatment. It must be such a relief to finally have some answers.

I've never actually felt so happy to be told I've got a horrible infection 😂

Thank you x

A former neighbour (who is actually a GP) had this & was very unwell for over a year. She was unable to work & they had an au pair to help with the DCs. She made a full recovery & went on to lead our local GP surgeries' response to covid. Your symptoms sound terrifying, thank goodness you have the diagnosis & the support that you need

OK, good. Sorry but there are a lot of charlatans out there who will take your money and give you dodgy Lyme diagnoses.

It's a done thing but what doctors really like is nice words in a card! Gift is fine just don't go over £100 or we have to declare it on our appraisal which is a massive faff.

My dbro has this as well and it too started in his knee. He lives beside a forest. He didn't get as ill as you as had a quicker diagnosis but was very sick. He has now made a complete recovery.
Another young girl l heard of here went to Germany for a long course of treatment and eventually was well. I think, like Switzerland, they are more familiar with it. I really hope your treatment works.

Thank you mtcoffecup

Yeah the infectious disease consultant warned me of that and the conspiracy theories!

He made me laugh actually
I asked if people were going round telling ticks to bite people 😂

He was so lovely and so thorough and so was the Opthalmogy consultant

They'd had a meeting about me last week apparently

I think I'm going to get the, a card and just a decent bottle of whisky which they won't have to declare !

My mate has a whisky shop so I've roped him in

Our NHS is much maligned but honestly these two consultants really went all out to find out what was causing my symptoms and I'd love to say thanks

To put things in perspective I've been unable to work for months

Before that I could only work from home and that was a struggle

I've had to turn down social events because I'm either too knackered or two swollen

My poor dogs haven't had a walk for ages
(We play in the garden but not the same )

I've not been able to bend to put shoes on or clean , I've had to find drop kerbs to cross a road , no shoes fit , it's been awful and not knowing why was worse

I can't carry laundry upstairs or downstairs
I can't even get off the loo without something to hold onto

I have t had a good nights sleep in months because of the involuntary jerking

So it's either a bottle of whisky or a snog and I, guessing they'll prefer the whisky 😂

Oh OP, poor you. What a horrible time you have had, you must have been worried sick.

Fingers crossed that treatment will be swiftly effective.

I am completely neurotic about ticks. Horrible, horrible things.

They are so much more common now. Time to consider vaccinating deer? I know they are wild and there are thousands, but a tempting salt lick put out for them with one sort of Lymes eradicating medication.

Either that or a human vaccine.

That's an interesting thought

I didn't even realise I'd been bitten . I did used to romp through fields and long grasses with my pooches tho

(Oh way back when , when I could walk )

I definitely think awareness needs to improve , my gp kept helpfully telling me there was clearly something wrong they just didn't know what )

I had no idea Lyme disease could be so utterly debilitating

I wonder if there is a vaccine ? Or how easy it would be to make one ?

I know someone who grew up in New England (USA) and was diagnosed as a teenager as part of the big group that was first ever identified with this. She's about 60yo now. She says she still has legacy issues (she didn't go into detail, except that it took many years to be diagnosed then too) but she has lived and is living a full life as far as I can tell.

That's really encouraging thank you I'm so
Hoping the antibiotics will work and I get some peace !

Hullo, I'm sorry you've had such a rough ride with this - all my sympathies go out to you.

I had this in late teens and made a full recovery. My symptoms had got as far as terrifying rash and fatigue. A tugboat full of antibiotics sorted it, and symptoms resolved quickly.

Like you, I never saw the bite, but the rash emerging meant it likely went only a small number of months undiagnosed, so I was lucky. I tested positive for the antibodies.

Wishing you all the best,

Count Adhemar

Thanks count that's also really encouraging

I've thought all sorts of awful things, from cancer to MS so the fact is treatable with antibiotics is such a relief

I understand it can take time even after the treatment but at least I know what's happening to me

@fabmaccawhackyrhumbsaloft, knowledge is power. (BTW, your username is mahoosive on my phone!)

😂.

From the heady days of reading the NME !

An old school friend of mine had Lyme disease, his physical symptoms have all abated but he's lost his zest for life and is no longer interested in socialising (used to be a party animal) Akin to depression I think.

I Relate to that because I've become a total hermit but I am usually a very sociable person , I'm hoping I'll get my zest for life back when these symptoms bugger off

I wish you all the best OP. It is really sad though that you couldn't get this diagnosis from the NHS without having something serious happen to your sight.

I hope it all goes well.

I had a tick in my leg in the Lakes. It was the tiniest thing you've ever seen. Couldn't tell you how long it'd been there or how. I was so paranoid about it that I got a local gp to remove it and took antibiotics anyway.

I know of a few people with it who are active and work in professional jobs. From what I gather a large part is about mental strength but that could be bollocks- or just the same as dealing with any chronic illness.

@fabmaccawhackyrhumbsaloft I watched a doc several years ago chronicling people with severe lyme and then treated with massive antibiotics (off-script by a doctor willing to do it). The results were excellent and astounding. Wishing you same. 💖

Thank you so much

X

Yes there is a lab in Germany that does special tests for about £1,000. No idea if any of it is legitimate but it does seem to be a controversial area but when the NHS is so bad at picking lyme up and giving early antibiotics, it is no wonder that those with symptoms end up looking elsewhere.

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!

However I'm much much more upbeat now I know what it is , and that it is treatable even if the treatment is a bit of a rough ride

I'd always Sri k to the nhs for a diagnosis of anything tbh , this has cost nothing except a bit of discomfort from a lumbar puncture.