Patients Demands for addressing the Lyme disease epidemic in the UK

Establish new UK based International Body with representative from other European countries (not a UK only issue)
Invite international Experts (I.E. Horrowitz, Kenny DeMelier, Alan Macdonald, Armin Schwartz and others as advisory board)
Ensure Independent from PHE, NHS, Military (Who does it report to ? – Prince Charles would be a good patron !!)
Develop new Guidance for treatment of Lyme Disease (Based upon ILADS)
Remove PHE role as advisors to Doctors – Focus on Testing only – Not Research
Oversee Independent Audit of Labs
Provide Guidance to GP’s

Treatment Centres

Establish four International Treatment Centres based upon geographic demand
Private & Public Partnership/Funding
Open to Foreign Countries Private & National re-imbursement schemes
Offers Multiple Treatment Regimes (ABX, Herbals, Hyperbaric, Diet, Detox etc)
Basic Treatment is Free to All – Advanced treatments and other services subsidised
Low Income patients costs covered in full
Introduce a monitoring programme to collect data on treatment success
Introduce and online Patient Portal that actively manages the recovery process and provides access to Doctors.
Introduce long term IV Antibiotics
GP’s treatment to be patient lead (ie that the treatment continues until THE PATIENT says that they are better)
GP to be willing to work hand in hand with alternative practitioners (eg pass over test results etc) and have dialogue with overseas clinics, backing up treatments in UK

Instigate a Nationwide press campaign informing the public of the dangers presented by this disease
Notify every person who received a serology blood test that they need to be retested if not well.
Ensure that every National Park and local council park displays warnings
Provide TV campaign warning people about Lyme Disease
Poster Campaign in Doctors Surgery stating tests are <50% accurate
leaflets in ALL gp’s surgeries, hospitals, libraries, tourist information boards and forestry centres
Boards warning of ticks, Lyme and what to do if you find one in ALL forestry and wooded areas.

Nominate 3 highly reliable Test Labs in Europe that are accredited to perform tests for Lyme Disease and co-infections
Introduce new tests to replace the IGG/IGM serology Tests (I.E. Culture, Elispot LTT and Dark Field Microscopy)
All tests results must contain their Accuracy (Sensitivity and Specificity) with a simple probability score of it being correct (50% Accurate)
All test results must include the details of the test (Western Blot Bands) including upper/lower bands
Porton Down Lab results to be subject to Independent Audit

Make a Notifiable Disease
Protection for Doctors treating Symptoms
Exemption from GMC Annual GP Appraisals Antibiotic over use monitoring for doctors treating Lyme Disease
Automatically allow anyone with Lyme to claim disability benefits
Establish Surveillance systems
Remove PHA connection with IDSA (Conflicted Financially and discredited)
Mandatory training for healthcare practitioners

Government Funding equal to HIV/CANCER relative to people with Disease based upon European prevalence rates.
Research into sexually transmitted Infection risks
Funding for Computer Based Differential Diagnosis (MSIDS ?) available online to Patients & Doctors
Funding for Research into GP Surgery based Testing (Collaboration with IanXen and others)
Research to find testing that is more reliable
Full Access to Porton Data for analysis
Establish a dedicated R&D facility at an existing teaching hospital
Carry out research into the areas identified by a recent patient survey (??? Details needed)
Research causes of Persistency

Initiate a judicial public Enquiry to review how many deaths were caused by Lyme Disease and to determine the root cause of the catastrophic failure by government ministers, PHE , GMC & NHS to manage this epidemic
A Public Enquiry may prevent an imminent class action lawsuit being instigated against the PHE & NHS for Human Rights abuse and/or criminal negligence.