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

Thanks but they're really "individual " !

Their pretty antisocial. I'm not sure I trust them with anyone else .

My big lad barks at anything that moves but he's an old man and doesn't need much in the way of exercise due to his age and health

My littlle man is just a typical terrier and thinks he's 10 men . He's an antisocial little git !

@Prescottdanni123 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.

No it does not. It says if you have a bite AND have symptoms. You do not need to bother the dr every time you have a tick bite. I live in an area where ticks are prevalent. All my Dc plus myself have at least one bite every few months, as do my neighbours.

advice from NHS

See a GP if:

• you've been bitten by a tick or visited an area in the past 3 months where infected ticks could be

and you have:

• flu-like symptoms – such as feeling hot and shivery, headaches, aching muscles or feeling sick, or
• a round or oval shape rash

Tell them if you have recently been in forests or grassy areas.

Eh I've heard of it but thankyou for sharing and now I know more about it. I hope you feel better soon once you get the treatment. Keep us updated on how you go and most of all take care to :)

@LizzieSiddal

And I said that you should contact doctor if you have a round, oval shaped rash. Like what the NHS information says to do.

Lyme disease isn't something to be messed around with. There is no harm in just asking for a phonecall chat with the doctor and asking what, if anything should be done about a tick bite. Better to be safe than sorry. Where I used to live, there had been a series of lyme disease cases diagnosed. We were encouraged to contact doctors if we were bitten.

@Prescottdanni123 There is no harm in just asking for a phonecall chat with the doctor and asking what, if anything should be done about a tick bite.

And this is why the NHS is on its knees. What do you expect a Dr would say to you if you have no marks or symptoms? You’d be wasting their very precious time because ALL the advice you need is on the NHS site.

Sotry about this derail @fabmaccawhackyrhumbsaloft. I just get very cross with NHS time wasting. I was on another thread recently where the advice was to go immediately to A&E with a tick bite.

Don't worry about derailing I agree, not every tick bite needs medical attention. A friends son was just bitten and his dad removed it , no biggie , it's only if you go on to develop symptoms that you'd need medical attention

In my case the little bugger must have been hiding because I had absolutely no knowledge of being bitten

My symptoms just didn't make any sense and I've progressively worse over a two year period .

I think it's something g more gps should consider if someone goes to the gp with a weird raft of symptoms that aren't explained.

I feel like I've lost two years of my life , from being a very fit , and active woman to hobbling around like a 90 year old.

@fabmaccawhackyrhumbsaloft I agree. If I come back positive then it would explain a lot and like you I don't remember getting a bite or a rash- but apart from that my symptoms do match a lot and the fact they came on out the blue a week after a walk in Windsor great park has made me think .

It's worth considering and speaking to the gp.

What is the treatment plan you will be starting OP?

I didn't say all tick bites need attention. All I said was that if you notice a bulls eye shaped rash you should go to doctor. Which is what it says on NHS website. And if you get a tick's head stuck, get it taken out by dr before infection sets in.

And sometimes doctors show more of an interest in tick bites if the cases of lyme disease are rising in their area. I'm not saying that I would ring up and demand treatment, just ring up and ask what the current situation was in our area. A random enquiry like that is hardly going to bring the NHS to its knees.

Also sorry for the derail OP. Clearly my original posts either weren't read properly or were misunderstood as I have said more than once, it is recommended to go to doctors for a rash or you try and are unable to remove the whole tick.

DH was diagnosed with Lyme disease at the bull's eye rash and aches and pains stage. Massive antibiotics that had rough side effects in themselves, a week or two recovering and getting has been completely fine ever since.

I read something recently about a vaccine. I think the plan was to vaccinate the ticks themselves but maybe I misunderstood. You would need a tiny needle, how would you tell them they had an appointment?

I'm now under the care of the infectious diseases consultant

The treatment he is recommending is a 28 day course of doxycycline, 100mg twice daily for the month

He did say they could give IV antibiotics but I'd need a 2 weeks stay as an in patient and he says the oral doxycycline yields the same results.

(I'm also on a 3 month course of antibiotics for the latent tb at the same time )

@fabmaccawhackyrhumbsaloft as the month goes on, if the doxycycline starts disagreeing with you, take it with milk. This was a game changer for me as half way through I started with a whole new level of nausea!

Thanks for the tip, I'm on day one and have heartburn from the bowels of hell which I was warned about and have necked gaviscon.

Consultant did say I might feel a bit rough

What do you mean advanced Lyme disease ? My sister has been diagnosed but has never been told if its advanced etc ?

There are different stages of Lyme disease

Because mine went undiagnosed for so long the bacteria has affected my brain, nervous system, heart, eyes, and caused inflammatory arthritis which has rendered me unable to get up or down stairs, get in the bath, drive, walk anywhere, exercise, work .

I lost sight in one eye due to it

There are 3 stages and I'm on stage 3 which is called late disseminated Lyme disease by which time it has many debilitating effects because the bacteria has spread to so many areas .

Im so sorry op. I truly wish you health and good wishes for your future.

Thank you , I'm optimistic!

I'm on the watch for rashes - 13 ticks found on me after one nights camping in Scotland (my partner had 8). Hopefully we found them soon enough.

Wishing you a full recovery OP. What a relief to know what it is

@fabmaccawhackyrhumbsaloft I'm wishing you tons of good will . Having had weird health shit for just under a year I know how debilitating it can be mentally as well as physically and at least with a diagnosis you know what you are dealing with and can focus on symptom management and treatments rather than randomly in your head googling everything and it's mother. I know someone who has had it 15 years and he's still working at 76. He often looks a bit pale but that's it

Just another FYI on doxycycline especially as you're already getting the heartburn symptoms, the instructions say not to lie down for at least 30 minutes after.
I learnt this after taking it before bed and waking up to vomit 3 nights in a row and thought to check the instructions leaflet😳
Best to take first thing in morning after breakfast then after eaten evening meal, ideally 12 hours apart.
Milk helped me too and also toast in keeping it down.
The other thing is increased sun sensitivity with doxycycline but the way the weather is atm you shouldn't have that issue!
Wishing you a speedy recovery after suffering for such a long time

Thanks , I've taken todays with food to see if that makes any difference

I’ve no experience with Lyme disease but As @Spareincoming said take the doxycycline with milk. I’m on 100mg twice a day long term and it definitely helps. Also always take it after food and make sure you stay upright for at least 30 mins after you take it.

also be careful in the sun and use sun cream. I burn very quickly if I don’t and get a horrible hot itchy rash.

I hope the antibiotics work for you.

Bkeugh day 3 and feeling pretty rough