What are you not doing anything on lyme disease

The request was refused by Department of Health and Social Care.

Dear Department of Health,

I

Why are you not testing for the European strain of Lyme?
What progress is being made on better testing of this disease as Porton Down Labs.?
What if any Is the recent feedback on progress made at Porton Down on Lyme disease
Is there proof of any funding channelled into this testing?
Why do you not accept German Lyme testing?
Is your none acceptance of German Lyme testing unreasonable when if you retest looking for the same result you are not looking for the European strain of Lyme but the American strain of Lyme.
Is testing for the American strain of Lyme in the UK to the exclusion of Lyme strains in Europe reasonable and why?
How are you collating your information on Lyme disease?
What department irresponsible for collating these figures?
What are the figures for people suffering from Fibromyalgia, chronic fatigue and ME.?
How many of these people are having to be supported by the state, exact up to date figures please.?
How may deaths have occurred from these diseases that you are aware of?
Why are you doctors so reluctant to even contemplate the possibility this disease exists.?
Have you told or advised your doctors to respond to patients in this way.?
What training in Lyme disease Is available to your General practitioners?
If there is a training module what Is the uptake on its use?
Is there any type of Government instruction on non action towards this infection in existence and could you reveal them to me?
Lyme Borreliosis has three stages , on what evidence was this finding based upon?
In the UK it would appear that if one test for Lyme is seronegative then that's it, however your Lyme blood testing is documented as poor on picking up this disease. Why is there not further testing for Lyme when symptoms increase and heath visibly deteriorates?
Can third stage Lyme be treated?
What is the cost to the NHS on the hospitalization on third stage Lyme, what figures do you have? What breakdowns on mortality figures do you do?
What are the figures on deaths for complications caused by Lyme disease?

Now on Bartonella which is supposed to be self limiting what are the circumstances when its not?
What studies have you taken of Bartonella which You base your conclusions on?
You have taken away the blood testing for Bartonella why?
What have you replaced this with and exactly detail the testing method do you now use?
How do people access this testing?
What exactly is the treatment for Bartonella? The actual antibiotics recommended and length of time for treatment and successful follow ups?

On Babesia what is the testing exactly?
How accurate is the testing?
How do patients access this testing?
How many people presenting with Lyme symptoms have you tested for Babesia?
What is the treatment for Babesia? The antibiotics used, the strength of these, the length of time used and successful follow ups?
Have you recent figures on human infection with Babesia?
If the canine infection with Babesia is increasing within the UK what stops the UK from having a similar increase in humans?

What are your most recent figures for Babesia infection in the UK and when were these done?

On organ donation, what tests are done to ensure patients are not given a transplant infected by the Lyme, Bartonella, Babesia bacteria?
What tests are given on bloods from donation for these bacteria?

Yours faithfully, vjlwilliamsiu

Do Not Reply,

Our ref: DE-1089458

 

Dear Mr/Ms Williams,
 
Thank you for your correspondence of 2 July about Lyme disease.  I have
been asked to reply.

The Freedom of Information Act only applies to recorded information such
as paper or electronic archive material.  As your correspondence asked for
general information, rather than requesting recorded information or
documentation, it did not fall under the provisions of the Act.

 

Public Health England (PHE) has produced several leaflets with information
for the public on tick awareness, including how to remove ticks and what
to do after a tick bite, and the symptoms to look out for if a person has
possibly been exposed to ticks or had a bite.  These are available on the
Government’s website, www.gov.uk, and can be used by local authorities in
their own advice.  PHE has also helped revise the patient advice on NHS
Choices and the Government website contains links to Lyme disease
information.

 

PHE recognises that patients and patient groups question the sensitivity
of the diagnostic tests it and the NHS use to identify Lyme disease.  This
is in part because results from these national laboratories do not always
agree with the results issued by private diagnostic laboratories. 
However, the European External Quality Assessment scheme results for PHE
and NHS laboratories are comparable with accredited national laboratories
across Europe and are a mandatory requirement for all laboratory testing
in the NHS as part of best practice.

 

PHE is also participating in a side-by-side evaluation of all relevant
commercial Lyme serology essays that is being led by the Australian
government.  PHE has two PhD students at the University of Liverpool, who
are investigating the diagnostic potential of new tests and novel testing
approaches.  It has also offered to work with scientists and patient
groups to carry out robust side-by-side evaluation of its Lyme tests and
those promoted by others.

 

The issues with diagnostic tests are not unique to Lyme disease and relate
to biology rather than technology.  The Lyme bacteria can be detected in
the skin in the rash by a biopsy in around 50 per cent of cases, the
sensitivity depending on hitting the right spot for the biopsy.  The
organism is present only transiently in human blood, and at very low
levels, so blood tests are of little value to detect acute infection. 
Current tests therefore rely on detecting the antibody response to the
infection, which in Lyme disease, as in most other infectious diseases,
appears a few days after the symptoms.  For this reason, GPs are advised
to treat patients who have the characteristic rash, or who have symptoms
and a credible history of possible exposure to ticks, without waiting for
diagnostic tests, which are therefore not usually requested.  The antibody
response varies between individuals, but the most common antibody, which
is consistent across virtually all cases, is covered by the C6 antibody
screen.  The blot adds additional information, and may be useful in early
and late cases, so is used by PHE.  PHE uses a C6 screen, with additional
confirmatory testing with a blot, for this reason.

 

The challenge is to find tests that are both sensitive and specific to
Lyme disease.  The main issue with many of the methods put forward by
different groups is that they lack data on what other diseases or
conditions would give a positive answer, or how many unaffected people
would test positive.  PHE continuously evaluates new Lyme serology tests
and will validate and implement new tests if appropriate.  A study of
several screening tests used by different NHS laboratories showed no
significant difference between the different commercial products used in
the UK. In order to improve diagnostics, PHE is investigating the use of
improved scientific techniques to find the organism in blood and other
samples. 

 

PHE holds a series of GP training days, which are run several a times a
year in various locations across the country.  The patient charity Lyme
Disease Action has an e-learning module for GPs, which is recommended by
the Royal College of General Practitioners, and PHE also has a clinical
helpline for doctors.

 

The training and knowledge base of GPs is assessed by a national mandatory
programme of five-yearly reviews and revalidation, and by a programme of
continuous professional development, which is reviewed annually.

 

Both the Department and PHE are aware of an increase in concern about Lyme
disease, which is reflected in an increasing number of media articles
about the disease, celebrity campaigns, and enquiries to PHE and the
Department.  PHE and Lyme Disease Action are increasingly concerned about
the increase in misinformation that has accompanied some parts of this
activity.  As a result, the Department has commissioned the National
Institute for Health and Care Excellence to develop evidence-based
clinical guidance for the diagnosis and management of Lyme disease, which
will be available in 2018.  It has also asked the Evidence for Policy and
Practice Information and Co-ordinating Centre to review the available data
on other aspects of Lyme disease and its epidemiology.

 

I hope this reply is helpful.

Yours sincerely,
 
Julian Braun
Ministerial Correspondence and Public Enquiries
Department of Health

 

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