Hi...confused here

I've had lyme disease since 2003, wasn't diagnosed until 09...if anyone knows about lyme they know if not caught and treated right away it can lead to lots of problems. The NHS haven't a clue a believe its cured in 2 weeks of antibiotics, quite possible in 6 weeks of if caught straight away. Moving on...today my neurologist said she thinks I've FND , possibly fibromyalgia. I wasn't surprised as know they follow the wrong corrupt guidelines. I've avoided doctors , hospitals as much as I can knowing all this. I've been to Germany and London to lyme clinics who specialise in lyme and co infections.

I'm totally gutted to be told fnd today as I know its lyme, lots of test to prove..all private which I can no longer afford...PLEASE can someone answer...do they think fnd is psychological and all in our heads, put on etc????

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  • But...what if lyme literate drs that KNOW and have tested for lyme n co Know you have Lyme. ..there's lots of controversy over the disease and many get told " it's functional, in your head" etc.

    In Poland for example their health care workers visit you at wherever you staying to give support, as they get it there.

    My carer who's just left to go working full time in a lab where she's seen hundreds of lyme serology in animals, lyme is as much a clinical diagnosis as serology and notorious for coming back negative. Yet at This lab (near me) they've told her its rife, in one lab! Animals can't say their unwell hence it has to be a clinical diagnosis.

    Yet I have many positive blood test and unless lyme literate they wont accept them...

    I feel their fobbing me off with fnd as the guidelines don't allow otherwise.

    Of course I wish it was something that they recognised but not "just in my head"

    I'm sounding functional lol. Just watched a YouTube thing with Dr Stone.

    I've always been scared of hospitals and GPS and rarely bothered., i just got on wirh it quietly. Only now I'm fighting pip and they need more evidence besides all the bucket loads they have and a care plan from social workers I've had to....and this is exactly what I knew they would say...sigh..gutted.

  • I have also thought about Lyme disease or something similar as I lived in a hot country with lots of biting bugs. But in uk would probably never be tested for anything like that. Sounds sad but I don't watch tv at all just certain 'real housewives' shows as it requires little brain concentration 😊 and Yolanda Hadid was battling Lyme disease and some of the comments she made were exactly how I feel with my FND 'diagnosis'. The fatigue, the brain dying off, or not being able to get words out or have conversations and then just having to leave social gatherings and go to bed. She also talked about how people don't believe you when you look healthy or have a good day. They believe you should be sick all the time. Of course her cast mates didn't get it. It's sad when people can't support. If you don't understand then research it. I mean supporters not us.

  • Hello yes it's horrendous and no help in the UK. I've spent thousands abroad. Family and friends fundraised.

    It's was hard enough before this daft diagnosis. Don't know where to turn now but certainly won't be toward the NHS.

    Can't get my head round it all . Well I can because I've been fighting years. This is the worst thing they could of said as they already think Lyme is cured in 2 weeks of doxycycline. LOL!

    Feeling alone

  • I think the NHS is struggling financially and therefore less tests. That's my belief so don't sue me.

    But, I left here many years ago to come back to a whole different NHS that won't test. After the recession.

    E.g. Iv never had an MRI - multiple reasons as to why it keeps getting cancelled.

    I had pneumonia and flu and had an AP X-ray when it should be AP/lateral is the standard X-ray for a chest.

    AP means front and back so it's one view, lateral is side on.

    So I guess if I can get half an X-ray and be told I'm totally healthy when I can't breathe then that's the best they can do.

    I'm also looking at borrowing and having private investigations if no one can get it right.

    I spent 4 months really unwell from flu etc because first few professionals would not test blood, do X-rays etc when I got so sick I was really unwell at the point of being completely septic and it spreading to my blood and other organs which can equal serious consequences. I thank the staff at the last emergency hospital I went to that they were clued up and just looked at me and diagnosed me in minutes before doing many many blood and other tests. They got it right and started the right medication when the actual results took a few days to come back but thankfully I was on the right medication already.

    It was the difference between listening to the patient and observing.

    I think that seems to be a dying art.

  • Sorry brain drain day.

    I always say if I'm telling you something is wrong then it is. I'm big attention seeking and I'm not here for fun.

  • Argh bad brain day. Should have said not attention seeking. Honest 😳

  • Whether the NHS are struggling or not nothing would change in the Lyme world. We follow corrupt guidelines that a very flawed. Idsa are responsible for this.

    If you have the mind to understand more watch under our skin on YouTube and Dr Joe Jemsek speaks the truth speech. Very informative.

    Our test are sent to Southampton where the head of teaches up and coming Drs that anyone with Lyme if (and you have to fight for this too) having had 2 weeks of doxycycline. Their cured! Rosy if not caught early

    7 facts that could of saved me is another to watch.

  • Would it help now to have the doxycycline ? It's a very cheap drug and is now generic so could a gp just prescribe it for you just to see if it helps??

  • I've had it..cant handle it though.

  • 😱

  • I've had IV too but got septicemia.. had to have mine removed.

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