Cannot get GP to investigate further. — Scope | Disability forum
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Cannot get GP to investigate further.

jackie005 Member Posts: 25 Courageous
My lad now 23 yrs old was eventually diagnosed with M.E. and chronic pain syndrome 2010, He spent the majority of 4 years in bed chronically ill, lots of symptoms that did not seem associated with M.E. but all symptoms put down to M.E., Very little help/support and nothing at all when he reached 18 yrs old... 2016 mental health issues started, hearing terrifying voices and seeing horrendous images, severe depression, suicidal, rages, memory loss, totally unable to control his impulses, disappearing for weeks sleeping rough in his car eventually coming home in floods of tears not knowing where he'd been or what he;'d been doing etc. Last year I had his bloods privately tested in Germany showing him positive for Lyme disease and Bartonella, NHS test for Lyme came back clear so NHS will not treat or investigate and put all his health issues own to anger. We have had to go along the mental health route but Mental Health Team are now saying they don't think it's mental health issues instead 'anger management issues' He's desperate, new symptoms recently is a massive vein that occasionally appears from the top of his forehead down to his right eye. He needs help and proper investigation, GP refuses to send him to Neurologist, but putting GP under pressure he  agreed to have his bloods tested for NMDA tests came back clear.


  • jaja
    jaja Member Posts: 76 Pioneering

    I'm sorry you and your son are going through this. I'm not sure how helpful I can be but wanted to say hello and that I'm sure someone will come along and have lots of ideas. 

    I wondered if it might help talking to PALS. I'm not sure but it might give you further information to move forward.

    Am I right in remembering that the NHS test for Lyme is different than the private one? I'm sure I read something to that affect and that is why the NHS test is negative.


  • April2018mom
    April2018mom Posts: 2,872 Connected
    The only thing I can think of is to contact PALs. Also consider changing specialists. Go private. Your son deserves better. So do you. Can you change family doctors or not? I feel your pain. I’ve been in appointments with doctors who told me “We cannot help”. It is not good. 
    Don’t hesitate to seek second opinions. This is part of advocacy. 
  • Adrian_Scope
    Adrian_Scope Posts: 8,578 Scope online community team
    Hi @jackie005, to echo what's been said here — please seek a second opinion. 

    Have you had a look at Lyme Disease Action to see if they can advise?
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  • jackie005
    jackie005 Member Posts: 25 Courageous
    Thanking everyone for their replies @Adrian_Scope and @April2018mommy. I belong to several of the Lyme disease action and M.E. awareness groups which are great for advice/support. PALS is something I have been considering. We cannot change surgeries as ours in the only one covering the area we live. We have seen every GP in our surgery but each time come up against a brick wall.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @jackie005, how are you doing today? :)

  • jackie005
    jackie005 Member Posts: 25 Courageous
    Hi @Chloe_Scope, I'm good but not happy with all this rain we're having in Somerset but have to be thankful for small mercies as other areas are having dreadful down-pours. Found some really interesting info on the site this morning re the 10 year PIP award which I wasn't aware of so I shared on other sites I belong to crediting SCOPE Community website and it is being shared by many. I was thrilled to see it shared by some M.E./CFS sites especially Missing Millions Voice and Missing Millions Voice Global. It's so important that such vital info gets to the people who need it. Hope all is good with you, keep up the good and extremely important work. Huge pat on the back to all Team members.

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @jackie005, it certainly isn't feeling like summer at the moment! I'm so glad you have been able to find some valuable information and thank you for your kind words :)


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