M.E. Lyme disease co-infection of Bartonella, so much more but no NHS help other than mental health — Scope | Disability forum
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M.E. Lyme disease co-infection of Bartonella, so much more but no NHS help other than mental health

jackie005 Member Posts: 25 Courageous
Hi to Everyone, I'm new to the site but not to SCOPE and the M.E. Association. I have an adult son with mild cerebral palsy and my foster son 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, I did put GP under pressure with help from a Private M.E and Infectious disease Specialist who asked for him to be referred to a Neurologist for NMDA testing the GP just arranged bloods tested for NMDA tests which came back clear and no further investigation at all. My only income is my state pension and cannot afford private treatment. Hoping for advice/direction. 


  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @jackie005 and a very warm welcome to the community! Thank you for taking the time to share this with us all. I can understand your frustration about not being able to see the appropriate doctor.

    Did you see the Q&A we did yesterday about M.E/ CFS and chronic fatigue?

    Unfortunately we are not medical professionals on the community and are only able to offer support and guidance. 

    Have you asked to see another GP? A second opinion may be really helpful.

  • jackie005
    jackie005 Member Posts: 25 Courageous
    Thank you Chloe, tried absolutely everything, we're a tiny village in Somerset and we only have the one practice, we've seen everyone of the GP's in the practice but always come up against a brick wall. I get regular updates etc from M.E. Association such a great help to me and many, many others and SCOPE were invaluable for supporting/helping with my son.

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    I'm glad we have been able to support your family @jackie005

    Have you ever contacted a Lyme's charity, like Lyme disease action. This may help to get a diagnosis. 


  • buzzer
    buzzer Member Posts: 106 Pioneering

    There are a few discussions about the NHS and the validity of the blood results from unaccredited labs outside of UK on a google search. 
    https://patient.info/forums/discuss/aonm-armin-labs-warning-530528 an example. 

    As to where you you go now, I would say is keep ask for a second opinion in each field, obviously you know your own foster son, and his symptoms. 
    If you feel you need to raise it further try your local CCG clinical commissioning group
    https://www.somersetccg.nhs.uk/about-us/governing-body/ if you have specific issues with your GP practise or local hospitals. 

    Or your local healthwatch https://healthwatchsomerset.co.uk/ for some support. 

    Another possible angle is to find more of his biological history using social services or whomever organised his foster placement.

    I understand it must be a very frustrating situation for you all.
    Wishing you a more positive way forward. 

    Try & be kind to one another even if we may have different views. 

  • jackie005
    jackie005 Member Posts: 25 Courageous
    Thanking everyone for their replies. @buzzer, PALS is something that I'm considering. I'm aware of all the lads biological history, he's been with me since he was 8 yrs old  he's now 23. We have a good relationship with his family. Social Services were of very, very little help and have been even less since he reached 18, he doesn't qualify or meet the criteria for an adult Social Worker, he did have a Support Worker but that has now stopped. I'm no longer with Social Services.


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