Chronic lyme disease — Scope | Disability forum
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Chronic lyme disease

mega
mega Community member Posts: 1 Listener
Hi I've the umbrella diagnosis of fibromyalgia . But I know I have chronic Lyme  desise but the drs just want to say I'm mad  I have blood tests to prove it and have had two tick bites from Germany , my full body shut downs ( nuraligical atacts by the spirokeets in the Lyme . Which make me tempary blind and in agony ) are for ATENNTION !!!! AS I WAS ABUSED AS A CHILD ! 
this is so bad , as a.. I spend most of my life in bed ,,, so no one sees it , and b . I've had no childhood abuse . And my mentle  health issues are caused by the ongoing problem of being told my pain and deterioration is in my head , .. I'm at my wit's end , and I have a pip assessment tomorrow . Which I was told there was no way they would bother to check me as the form was not much difernt then last year , apart from I'm on more meds and I've gone down hill and my bowel no longer works properly so I have to have it evacuated manually which is not the best thing  .lol and also dew to the body shut downs I don't go anywhere without someone who knows what to do . Or I end up in an ambulance unable to see or speek !  , Yet they are comming and I'm so nervous  as I'm hearing alot about people being withdrawn from it , all my money goes on things to help me , 
Some one to ckeennthe house 
Some one to wash and do my hair 
All the vitamins and special food I have , and that it gone , I get nothing elce . My partner pays everything .  Any advise please please help 
Ps I carnt spell or type well at all now  sorry 

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @mega, and a warm welcome to the community!

    Thank you for sharing this with us, and I'm so sorry to hear about your circumstances- I have friends with chronic Lyme disease and know how easily it can be misunderstood, even by professionals. Have you considered seeing a different GP, to see if they can be any more accommodating?

    There's also a great charity called Lyme Disease Action who have lots of information and resources on their website which may be worth a look, and you can also contact them here.

    Do you claim any benefits at the moment? It may also be a good idea to try the online benefits calculator, to see if there's any more financial support you may be eligible for. Have a look, and do come back to us with any questions. I hope today is as kind as possible to you.

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