What do Lyme disease patients need now?

Important changes are taking place in 2018 for Lyme disease patients in the UK.

Treatment guidelines for Lyme disease

The UK now has formal clinical guidelines for Lyme disease for the first time. The NICE guideline has made a number of small but important steps forward in the diagnosis and care of Lyme disease patients on the NHS.

This guideline is only the beginning, however. It has not solved every problem in one step, partly because not all the problems faced by Lyme disease patients are issues of policy in clinical practice that could be addressed by NICE.

There is a lack of published research evidence on how to cure persistent Lyme disease, for example. There is a shortage of experts focused on Lyme disease, with supporting resources in place, among NHS consultants. Across the UK, Lyme disease patients can be referred to a variety of consultants but, without specialists who focus deeply on Lyme disease, clinical knowledge is spread too thinly among them. One aspect of the incremental progress made by the guideline has been to shine a light on these needs, even though it does not come under the remit of NICE to resolve them.

Should the guideline be thrown out entirely because of the shortage of evidence? That would mean rejecting the evidence that has already been published and usefully synthesised in the guideline, and can now be used to bring about some important improvements in diagnosis and care, because there isn’t more of it. Follow the link (above) to read about the improvements achieved so far.

Is the guideline unacceptable because some evidence that did not meet the criteria required by NICE was rejected? As with all other NICE guidelines, there are specified rules for the standards of evidence which can be used to make recommendations. The manual that details this NICE guideline process is reviewed regularly and is currently open to external stakeholder comment via its website. This provides the opportunity for these objections to be formally presented to NICE for their consideration.

Next steps

Caudwell LymeCo believes that the following issues now need attention:

1) Securing a budget for Lyme disease research from the Department of Health (DH)

This is required to fund the Lyme disease research which was recommended in the NICE guideline and supported in general terms by the DH’s own independent enquiry. Caudwell LymeCo’s estimate is that the research recommended in these guidelines could probably be done for around £10 million.

Caudwell LymeCo is raising money to donate towards this research. If you want to get involved and do something positive, you could join our growing group of fundraising supporters

2) The need to create “Centres of Excellence” for Lyme disease in NHS hospitals

Funding should be sought to create several Centres of Excellence in existing NHS hospitals, to serve as tertiary referral centres for Lyme disease patients. Currently, Lyme disease patients are either treated by their GP or referred to a local consultant (possibly a neurologist, infectious diseases consultant, rheumatologist or other specialist) and this doctor may only have treated a few or even no Lyme disease patients before. If a GP feels they cannot find a consultant with the necessary experience and knowledge of Lyme disease to help a particular patient, there is currently nothing they can do.

3) The need to design a public & professional information campaign

Cauwell LymeCo and our sponsor and spokesman, Mr. John Caudwell, have worked hard on awareness raising, but there are still too many people in the UK with little or no knowledge of Lyme disease. Overt government ratification of an official information campaign would help the public identify what to trust among the material about Lyme disease, both online and in the press, that spans a spectrum from reliable to misleading and even dangerous.

Caudwell LymeCo works hard to be a provider of proven information about Lyme disease to help patients. If you want to learn more, you can read our general information pages or our summary of the NICE guideline

4) The need to press for a social security and education system that is more supportive of Lyme disease patients

The welfare system needs to be studied in order to understand why patients with severe chronic symptoms ensuing from Lyme disease are sometimes refused financial benefits or other forms of state-funded help. This should result in recommendations being issued based on the findings, and where necessary alterations being made to the methods of assessment. Suitable experts should also formulate official recommendations for schools on how to support children with long-term Lyme disease symptoms.

The new Lyme disease NICE guideline makes a small step in the right direction, advising doctors to support people who have ongoing symptoms after Lyme disease by “encouraging and helping them to access additional services, including referring to adult social care for a care and support needs assessment” and also “communicating with children and families’ social care, schools and higher education, and employers about the person’s need for a gradual return to activities, if relevant.”

Caudwell LymeCo Charity has asked the All Party Parliamentary Group for Lyme disease to investigate the way Lyme disease patienta are handled under the current system.

How to get involved

The best way the public can press for these improvements is by joining the growing group of people who are taking positive and constructive steps to help.

Patient advocates

Patients can read the NICE guideline, of our summary of the guideline, ensuring they know and understand the new provisions it offers, and ask their GP to implement them as appropriate. Patients can only become advocates for better diagnosis and treatment, for themselves and for others, if they know what the guideline entitles them to expect.

Public education

Volunteers can educate family, friends and the general public on Lyme disease prevention and recognition.

We supply leaflets you can download and print, or you can contact us to order ready printed trifold leaflets and/or collection boxes for donations. We also have lessons (with teacher crib-sheets) for primary school children.


Fundraising volunteers can get involved by raising money towards the vital research that we need in order to find cures for Lyme disease patients. This will help to ensure that when the guideline is updated in the future, it provides the solutions that Lyme disease patients really need.

Follow the link for some fundraising ideas.

9 thoughts on “What do Lyme disease patients need now?

  1. Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease (Published Apr 14, 2018)

    Summary: All patients previously treated for Lyme disease (Some for years) were culture positive for Lyme.

    Current antimicrobials are ineffective for treating all stages of Lyme disease.

    The NICE guidelines are a continuation of the dishonest science originating from the United States.

    Carl Tuttle

    1. The risk of treatment failure is addressed in the the NICE Lyme disease guideline. In section 1.3.9, the guideline advises doctors to consider whether treatment may have failed, if “symptoms that may be related to Lyme disease persist, do not continue to improve or worsen after antibiotic treatment”.
      Doctors are advised (in section 1.3.11) to prescribe a second 3-week course of antibiotics “if treatment may have failed.”
      If this second treatment also fails to resolve symptoms, doctors are advised (section 1.2.20) to discuss the patient with a specialist (primarily those at the testing labs) to evaluate testing for co-infections and/or other tests looking for persistent Lyme disease, including synovial fluid biopsy or lumbar puncture amongst other tests.
      Since the guideline concurs with the conclusions of the research paper you have cited, it seems surprising that you describe it as “dishonest science”.

  2. Persistent Lyme disease is not new and has been intentionally/deceitfully suppressed for decades as described in the Vicki Logan case identified in the following letter to past CDC Director Barbara Fitzgerald: https://www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0

    In 1991 B. burgdorferi had been isolated in culture from Vicki Logan’s CSF (CDC’s laboratory in Fort Collins CO.) despite prior treatment with 21 days of IV cefotaxime and 4 months of oral minocycline.

    The “dishonest science” that I am referring to here in the U.S. has denied chronic Lyme which stifled research to find a curative approach. Now the rest of the world is suffering.

    If you read the recently published Middelveen paper which I listed in my previous comment you will see that the majority of Lyme patients were culture positive for infection even after multiple years on antibiotics so there was no relief from current antimicrobials. Some patients had taken as many ass eleven different types of antibiotics.

    We need an immediate “Manhattan Project” similar to the attack mounted against the HIV/AIDS epidemic to stop the ongoing devastation as reported by Lyme patients all across the globe.

    Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
    Raphael B. Stricker, Lorraine Johnson

    Published: January 02, 2014DOI: 10.1371/journal.ppat.100379


    We have lost nearly four decades to this 21st century plague due to the racketeering scheme identified in the RICO lawsuit filed by SHRADER & ASSOCIATES, LLP against the Infectious Disease Society of America, seven IDSA Panelists and eight insurance companies:

    The court document can be found at the following link:

    Carl Tuttle
    Independent Researcher
    Lyme Endemic Hudson, NH USA

    1. Dear Carl,
      We are aware of this adversarial situation in the USA and have heard many reports of how it has had a very negative impact upon patients.

      Patients in the UK don’t have a cure for persistent Lyme disease yet – nobody does – but we also don’t have the same system of healthcare, or the same level of entrenched positions or refusal to listen. It is the hope of Caudwell LymeCo, and I believe many patients in the UK, that we never become the same Lyme disease battleground as the USA. It is impossible for reputable scientists to produce research that everyone trusts in a politically charged climate: the good researchers who value their reputations for integrity have no reason to risk accusations of bias in their results due to external factors, when there are so many other fields in which they could use their knowledge instead.

      The Department of Health here in the UK held an enquiry recently, and the report shows that they really did listen to patients. The problems patients said are recorded in a formal government enquiry report now.

      We also have a programme of research – something like the project you may be envisaging with your phrase “Manhattan Project” – researched and drawn up by the guidelines committee, of which I was a member.
      The charity is fundraising towards implementing this research. We need the UK to remain a less politically charged environment, where scientists are not put off doing Lyme disease research by receiving hate mail from people who have already decided what they think the conclusion is going to be and that they don’t like it, which is unfortunately what has happened to rather a lot of researchers in this field.

  3. On Apr 24 2018 Veronica Hughes wrote:

    “Patients in the UK don’t have a cure for persistent Lyme disease yet – nobody does”

    So why aren’t governments and the NICE guidelines admitting this?

    A Manhattan project would acknowledge incurable Lyme disease which is destroying lives worldwide. It is the do-it-yourself 21st century plague and no one is held accountable.

    Absolutely deplorable.

    This is a crime against humanity on a global scale not seen since the holocaust but in this case every public health agency is responsible and in denial following what has been deceitfully established here in the United States.

    Carl Tuttle
    Lyme Endemic Hudson, NH USA

    1. In response to your question about there being no cure for chronic Lyme symptoms – “why aren’t governments and the NICE guidelines admitting this?”
      The guideline states in section 1.3.13 “some symptoms may be a consequence of permanent damage from infection” which is a clear statement that there is no cure for some people.
      This comes in the section that discusses assessment of patients with ongoing symptoms to evaluate whether it could help the patient to prescribe further antibiotic treatment or not.

      Desribing this problem as a “crime against humanity” and accusing public health agencies of deceit and denial is something Caudwell LymeCo strongly discourages. This adversarial approach has got the American Lyme patients nothing, only deadlock and a situation where it is hard to even imagine how progress could happen.
      Meanwhile a more collaborative approach here in the UK is already leading to progress, that this charity is supporting.

  4. Living in a southern hemisphere country where Lyme disease is denied to exist whilst many suffer, is it possible as some world experts suggest that this tick-borne or insect-borne disease is man-made out of Plum Island, Conn., USA, and it has spread by bird migration globally. Would those technicians who worked on this please come forward, albeit anonymously …

  5. NICE need to get updated, and realise Ticks are not the only insects to pass these diseases, I have tried for 10 years to convince uneducated GPs,, and still they dont listen, NICE needs to work for people not drug companies, or health officials. Also as Lyme disease and all the variants, can be passed sexually too,seeing as the bacteria can get into every part of the body. The health service in the UK is a long way behind, and in my area, illnesses and symptoms are left untreated due to poor surgeries. It is not just the NHS who can treat people, we should be allowed to access any means to improve health. For over 40 years I have had a wide range of problems, ignored, and me made to feel like a fool.
    NICE need to consult us, the public, and disease sufferers, and we get the final say, as we the people are in charge, just as we vote in or our a government. So dont keep looking down on us.

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