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

My vicar had optic neuritis. He’s now been legally blind for 8 years. He didn’t consult a GP until he had pain in both eyes, but before any sight had deteriorated significantly.
Have you been advised to eliminate aspartame?
He was told that aspartame was likely involved in the progression, due to 2 litre daily Diet Coke consumption.
I had no idea that it was harmful.

None of that in my diet luckily.

All the very best, OP. I spend a lot of time out in he countryside and am very aware of Lyme. Just sounds hideous, and seems to take an age to be diagnosed.

It's put me off my dog walks off the beaten track although I've not been able to walk them that way in 2 years.

I'll be sticking to paths from now on . When I can walk again .

Day 4 antibiotics. Felt really rough yesterday but been better today .

@fabmaccawhackyrhumbsaloft The roughness might come and go; did anyone mention staying upright after taking the doxy? That used to help me somewhat.
We’ve had crappy weather up here lately and the damp is wrecking my joints - the ones that swelled when I was pre-diagnosis - I try and think of it as a friendly reminder of how far I’ve come!

Thanks spare

I'm taking the meds about 8 and 6 so no laying down after ! I've found taking with food helps.

I just want my life back so I'm powering through !

A bottle of any nice spirit is always appreciated trust me it makes all the long hours and out of hours reading up and getting to the cause of a diagnosis a beautiful gesture.
When a patient presents complex symptoms, diagnosis is not straight forward “text book” treatment.
Your consultants sound fantastic, and yes I do believe that Dr Google can be so full of conspiracies and misinformation it can be terrifying to read!
Wishing you well for your future treatment, be kind to yourself (I think that is my key phrase!) but I really mean it. A good positive mental attitude is absolutely key, in long term treatment.
Chin up and keep that smile on your face.

Thank you so much

I've got a follow up with infectious disease but not my main man ! I might ask to see him specifically so I can say thanks .

I'm really so much more upbeat now I know I'm not dying !

I want to see my two amazing consultants again to say thank you and yes they have been amazing.

I won't have anyone knock our nhs ! When the chips are down , it's a free and amazing service with dedicated doctors who in my experience strive to find the answers

And they were both lovely too .

@fabmaccawhackythumbsaloft I can really tell how much more positive you feel! And I do know how you feel- not knowing what the bloody bell is wrong but knowing inside something really is wrong is very alarming !!!!

Ooof really rough day today with the meds , spent most of it in bed .

Hopefully tomorrow is better

I aren't quite sure that's right .

Please can you tell me who your consultant is (or which hospital even)? They sound great. I've been having some unusual symptoms and recall that last June I had a large circular rash on my knee. Gp at the time thought it was cellulitis but I'm wondering if it was lyme disease. I've seen lots of conflicting and confusing info online and would really like to speak to someone knowledgeable as I'm a bit lost now. Gp is going to do a blood test for Lyme but I understand it often gives false negatives. Thanks

Due to the very odd ball demographic here these days I'm afraid I can't but if you think you might have Lyme disease ask for a referral to infectious diseases specialist, they seem to know their onions

I'm on day 11 of the ABs and I honestly feel like I'm dying

I've lost a full stone
I'm living on iced water, probiotic drinks, and smoothies

I feel sick as a dog , I'm awake at stupid I clock (hence this post time ) and I've now got raging thrush

I feel like Ive spent a week now laid naked under a fan trying not to throw up

I’m sorry to hear you’re feeling worse hopefully things turn a corner soon! Check with your doctor but probiotics may be helpful - the antibiotics are probably disrupting things and causing thrush. Failing that coconut oil either frozen in an ice cube tray for pessaries or applied externally is great for thrush and shouldn’t have an impact on treatment I wouldn’t have thought. Hopefully these symptoms are all from your body finally having the tools to fight the infection and you will feel much better soon. Sending lots of healing your way!

Sorry to hear you're having such a rubbish time. Do you have someone to look after you?

Can you get anti nausea meds from the GP @fabmaccawhackyrhumbsaloft

I'm on my own unfortunately but I'm coping thanks

The specialist did mention anti nausea meds but said they were reluctant to to begin with ,

I'm back with them end of month so if it hasn't settled I'll ask as it's pretty miserable.

It’s definitely worth asking for nausea meds I had to have an antibiotic that makes me sick last year and I said I can’t take it without anti sickness tablets, so they gave me some and it made a huge difference.

If you're in a sailing family as I am the pessaries work really well if you think you can't keep pills down

I'm over halfway through the doxycycline and this weekend I tried to socialise ......
Now my feet,look like this ......

It's tight and painful and my left knee is the same

How the hell,do I reduce the swelling?

The sticky out bit is where my ankle bone should be

Back to the hospital

I've got a follow up with infectious diseases consultant end of this month so I'll show him the pics and tell him all I'd done was sit at a bbq for a few hours

I'm just disappointed because I thought the treatment should be working y now ? I'm halfway through.

Honestly I feel like my life is on hold because the moment I try and do anything normal this swelling happens

So sorry to hear you have Lyme.
One of my DC has it and was diagnosed somewhat early at 6 months.

They had the antibiotic treatment and it was rough. Mostly back to normal with flare ups once or twice per year