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(Off Topic) - Lyme Disease... Anybody familiar with this? :(
I know this is super off topic, but this forum is kinda my safe and fuzzy warm place! 
If anybody has experience or knows about Lyme Disease and wouldn't mind chatting about it, please feel free to send me a message to my inbox, cheers.
Brief context. I've had symptoms without diagnosis for 5 years. It's really tough to get the NHS to take it seriously here in the UK.
Anyway, thanks in advance.
Normal music stuff will now resume.
Comments
I had it, it sucked. But was living in the woods of PA and they knew what it was pretty much immediately. I was fixed up BUT have never been physically the same to be honest. Get treatment. Make a proper fuss. I know the dear old NHS is being fucked, but there's no reason they can't figure out the drugs to give you.
There's a couple of antibody tests used by doctors here in the states. It's usually the first thing a doc does when they suspect a patient may have lyme.
There is a whole lot of info about Lyme disease on the internet if you google it.
Hope you get answers and feel better.
Deer ticks
John Lurie
Reeve Gabrels
that's all I know
Take care of yourself and get better.
There’s a movie called “under our skin” that is really good, a lot of info about Lyme disease. I’m sorry you’re going through it, Lyme is no joke.
Hey man, just sent you a PM. Sorry it’s so long, (it would have been longer but I ran out of characters!)
I’m kind of in the same boat as you so happy to share what info I have found so far.
Make a big deal about it. A friend I went to school with is ruined from it.
Australias dominant discourse medicos dont wanna acknowledge that it exists at all...contrary to the views of the many who suffer from it here..
@SpookyZoo coincidentally I heard something on radio 4 the other day about Lymes. Think it was this https://www.bbc.co.uk/programmes/p07jzdzs
Horrible disease, my sympathies to anyone who has it. I’ve been more aware of it this year as there’s been a big increase in cases in the UK, due to a warmer climate, and I’ve started taking precautions when out and about in the hills.
Apparently the ticks can also be carried by pets, so our cats daytime place on our bed is being reviewed.
Our sprocker gets them regular but both our dogs are on medication every 3 months which, amongst other things, kills the ticks off pretty quick. Otherwise we extract them if seen.
Agree that this year is the worst we’ve known for them. Often see tourists hiking in shorts and there’s no way I would do that these days. Trousers tucked in socks also!
Hey, so sorry to hear it.
By day I’m a disability attorney in New Jersey, which is a hotbed (like the woods of pa!) for Lyme, so I’ve helped hundreds of folks with Lyme over the years. There’s a ton that can go wrong including false negatives on the tests and other conditions that can mimic the systems that will make health care professionals make you feel like you’re nuts. If you want to chat, pm me, I can give you some more thoughts (typing on my phone rn). Usually it’s not disabling (although it sometimes can be) so don’t be spooked by my day gig, just offering my knowledge seeing this a lot.
Hopefully you get a firm diagnosis and can get treatment. Many many people recover just fine, including my partners son, so it’s not necessarily a prescription for a lifetime of symptoms.
Thanks so much for all of your replies and messages. Sorry to hear how this is affecting others too.
The links and recommendations are appreciated and have been noted/bookmarked, cheers!
Here in the UK, you're more likely to be sent to a counsellor because it's "All in your head" rather than receive the needed treatment. It's pretty shocking and a future scandal once the arrogance and ambivalence of the NHS over Lyme is fully revealed. I can only see this disease become increasingly common with no UK plan to tackle it. Awful stuff.
My body has started to suffer quite obviously in the 5 years since it started. Currently my shoulders are giving me the worst arthritic-like pain. I'm 46, bit this is much more than the usual wear and tear. It's really affecting my music too. Tweaking synth knobs for just 20-30 seconds makes my arms feel deadweight.
Thanks again for taking the time to respond.
Cheers!
Wow! I knew this forum was a special place, and you all have proved it so.
Jesse Colin Young has this disease and has recorded a song about it:
Shit. Sorry to hear it @SpookyZoo. +10 to this:
Such utter UTTER bollocks. I'm afraid you or a movement of your making needs to chain themselves to the fences of their stupidity.
i have no real focus on lymes disease, other than one rather interesting origin story... (as a child, i always believed it was one of those 'old' illnesses)
i will recommend,soaking in a warm bath of epsom salts, sitting (and dancing) with a roaring fire, consciously-connected-breathing whilst observerving your thoughts --- question and challenge any of those that are negative --- and of course, sound and music
all of those seem no lose to me in our flat screen world
oh, and after reading that origin story again, maybe add some limes and plums to yr diet too
be well
Where in PA?
Poconos?
OP
Lyme disease is no joke.
I am guessing you didn't catch it after the initial tick bite and ring appeared?
You can front load Rx at that time to quell later onset of symptoms.
What do you want to know OP?
The UK is a complete mess at the moment, common sense no longer exists in parliament.
My son has a behavioural condition, that is recognised by health specialists, along with its treatment. Problem is, not all counties in the UK will accept it exists, despite the fact it obviously does, and so the unlucky ones (like us), have to battle health 'professionals' to ensure the appropriate treatment is provided.
To make matters worse, rather than accepting the condition he and others have, they treat it with methods used for a similar condition, but the methods used are the opposite of what is required - so it actually makes the condition much, much worse.
Fortunately his new school, unlike the last one, have totally dismissed the 'official' incorrect recommendations for the county, and use the correct treatment that's recommended by the specialists. Result - it makes everything better.
I think it's a similar story with Lyme disease. If you're 'lucky' and live in an area that accepts it exists you'll get treatment, other places they'll probably prescribe painkillers and tell you to go home.
A little DDT for the ticks ......
The whole 'doesn't exist' avenue truly sounds like the Dark Ages. Depressingly amazing. It's like saying dogs don't bite.
No
Malvern of all places. Madam became overwhelmed with the constant majesty of New York City so we escaped into the humble simplicity of organic country living and it all went to shit from there 
Postcode lottery healthcare. That's the UK for you.
Friend here I used to play in a band with developed a nasty condition - hadn't seen him for a few years, then when I came back was shocked at his appearance - shaking, barely able to walk, and his head/features almost reduced to a skull. 'What it is, what do you have?' I asked. 'They don't know', was the answer. Apparently he'd originally thought it was ME, which 'doesn't exist', and it then developed into this neurological disorder, which doesn't exist either. In the end he died after having a heart attack on the operating table (poor bugger developed testicular cancer as well) - his doctor had failed to tell the surgeons he had a heart condition.
Thanks again for all the replies and messages.
Yeah I got symptoms and Bullseye rash straight away. However blood tests during the following weeks showed my blood sugar was slightly raised at the time and their focus was on diagnosing me as diabetic.
I got asked where I lived, and the Dr laughed in my face saying "You don't get Ticks in Watford".
Disgusting attitudes.
The Garden cat was covered in Ticks those weeks I first fell ill. It was summer I would have been wearing shorts.
I had a 'Black humour moment the other day when I though of all the places I had been that have dangerous animals... Canada=Bears, Australia=Sharks,Snakes,Spiders, Thailand= Malaria Mosquitoes, etc...
...and it takes an insect bite in a Watford garden as I'm hanging out the washing that ends up doing me in!
Yeah! Exactly this.
@MonzoPro So sorry to hear about your struggles with the NHS over your son. Dealing with this situation for myself is one thing, dealing with it on behalf of a child must be on a whole other level. Fingers crossed for your situation going forward!
Thanks again for the links and messages. I've watched and read them all. Cheers!
its not just Lymes. there is also babeosis. my mother in law got that, almost killed her. looked like a tick bite. same tick
Yeah. It's the co-infections that go hand in hand with Lymes.
Next step for me is to go private and get tests done in German lab to identify exactly what I'm dealing with, regarding co-infections.
https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/
Thank you, and I really hope your symptoms become more bearable.
The NHS will have to take the disease more seriously, since it’s only going to become more prevalent, and they’ll have to step up their support for sufferers as a result.
Thanks. I'm quite fortunate that my symptoms atm are fairly tame compared to how other poor souls are struggling with this disease. It's definitely progressing though, and I'll need to find treatment soon before it gets too bad.