Chronic lyme disease — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Chronic lyme disease

Options
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  , Yet they are comming and I'm so nervous  as I'm hearing alot about people being withdrawn from it , all my money goes on things to help me , 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
    Options
    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.

Brightness

Complete our feedback form and tell us how we can make the community better.