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

Oh my gosh. I have no experience, but didn’t want to read and not respond. Hopefully someone with knowledge or experience comes along soon. Good luck with treatment tomorrow.

Thanks, Its also been picked up I have another latent condition which requires 3 months of antibiotics but the Lyme is causing me massive issues and has reduced me to a virtual hermit

I'll be on strong antibiotics and the consultant said I'll feel pretty rough

I'm back to see him in 6 weeks , I'll need bloods to monitor liver function while on the meds

I'm elated that after 2 years of nonsensical symptoms I have an answer but it's been untreated for some time and from the limited reading I have done it can cause long lasting issues but tbh anything has to be better than how I am right now

It’s a double-edged sword, isn’t it? Great to know what it actually is but then also scary to know what it actually is.

Im sure you’ve already done looked at this, but I wondered if A Lyme disease charity might at least have someone you can talk to.

Hopefully diagnosis and treatment will be a turning point, though it sounds like the next few months will be tough.

Not a sufferer myself, but here’s a link to celebrity sufferers. https://www.everydayhealth.com/lyme-disease/celebrities-with-lyme-disease/

I’m just posting it as you might find solace in their stores. Sorry if inappropriate

Just wanted to pass on my best wishes OP.

Thanks all that's really helpful, it's so strange to think something the size of a poppy seed could have reduced me to this !

If I hadn't lost sight in one eye I don't think it would have been found , my ophthalmology consultant referred me to the infectious diseases specialist because something else was picked up on a blood test and that prompted further testing

I have all the advanced symptoms.

Can I ask what your eye issues are, please, op?

Hope you feel better soon x

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

The swelling of my optic nerve and disc was so bad it was immeasurable on the hospital equipment.

I saw the consultant same day and was started on IV steroids to try reduce the swelling

The ophthalmology consultant was great and had a feeling it was infection rather than anything else and tested me for everything and referred me to the infectious disease specialist as something else was picked up before the Lyme was

He organised a lumbar puncture and viola ~

I'm rethinking my Buddhist credentials, if I ever see a tick it's had it ! Little bastards ! I've been housebound for 2 years with this shit !

I almost asked if he'd marry me when he came in off duty wearing a yellow t shirt - how many men can pull off a yellow t shirt ! 😂

And he came in even though he wasn't working

And the infectious diseases consultant was absolutely fantastic too

I've been struggling for so long it's a relief to know what's wrong and get treatment!

Hmmm. Having antibodies doesn't mean your symptoms are due to Lyme. Is this a recognised consultant, on the infectious diseases specialist register who also has an NHS post?

Or someone at a place like the Breakspear?

No it's an NHS infectious disease consultant who did a lumbar puncture and the diagnosis is Lyme disease

He is an experienced NHS consultant.

I also have latent tuberculosis. But the Lyme is active and the lumbar puncture confirmed this as the diagnosis.

I wish you all the best for the outcome of your treatment OP. You sound amazingly upbeat, I guess at least knowing what's caused your symptoms is good after two years of not knowing.

He warned me that there are conspiracy theorists and organisations that claim to diagnose but this is the uk nhs infectious diseases consultant who is now managing both the Lyme disease and the latent tb. The latent tb is latent and not active but I will be treated so I can have surgery on my arthritic knee .

I hope the treatment gets rid of the Lyme. It’s a horrible thing.
i live in Switzerland. There is much more awareness of it here because the ticks are so common. The more people know about the symptoms the better

Thanks
It not something I'd even considered. I can't thank the hospital enough for their speedy diagnosis after 2 years of pestering my gp to no avail

I'm thinking of getting a bottle of nice whisky for both the amazing consultants who took a mere 4 weeks to diagnose me after 2 years of absolute hell , is that a done thing ?

I would too. Even if it's not a thing. And a card. I'm so pleased you got answers and wish you well

I don't have Lyme disease, but was diagnosed with Fibromyalgia just under two years ago. By that point, I was in agony every day, and subsequent to my diagnosis, started to experience neurological symptoms as well as increasing and debilitating fatigue (that word doesn't even cover what is basically exhaustion after doing something that I would have previously taken for granted)..
I can identify with what you're going through - huge relief that you finally understand what's going on (and possibly that it's not all in your head, as how could you have all of those problems but seemingly there is nothing wrong with you), and then the devastation that this is your life now.
It's crap. I really hope you get some relief from your treatment now, @fabmaccawhackyrhumbsaloft, and that you find a way forward that gives you some quality of life. (I was very lucky - MH services round here were previously appalling, but my local Wellness service were brilliant. I had counselling, pain relief counselling and also support from an employment support worker as I had been off work for eight months in the end and was worried I'd never work again.)
My very best wishes to you.

Oh, I x-posted with you - my diagnosis was also out of the blue (I thought it would be to do with my hyper mobility or arthritis). Like you I'm very grateful that I now know what it is that I've got.

I know two people who have had this. The treatment was long and gruelling - the disease was undetected in years in both of them, and very advanced.

It took some time but both have made a full recovery now and have absolutely normal active lives. Just wanted to leave you with that happy thought!

Thanks
Honestly it's been a living nightmare, I've been reduced to climbing the stairs on my arse , can't walk anywhere, can't drive , had to hire home help

It started with a swollen excruciatingly painful knee
Then both ankles did the same
Then elbows , wrists and hands

I can't walk up or downstairs and I can't walk far or drive

I was sleeping up to 18 hours a day and couldn't get out of bed

Then my eye went
Then my limbs began to inexplicably jerk

I thought I had MS . Had brain scans which showed nothing, but after the optic neuritis the hospital were involved and within 4 weeks I've got the answer after a lumbar puncture and a gazillion blood tests (must have taken an armful!😂)

I honestly thought I was going mad

That's brilliant thank you so much

Honestly I'm so happy tonight because finally I know what's happening!

@fabmaccawhackyrhumbsaloft, if I could like your last post I would! Good luck.

😂👍