In some ways (particularly for acute cases of Lyme disease) the new NICE Lyme disease guideline represents a small step in the right direction and as stakeholders in the process, LDUK has commented extensively on both the draft and final version. In our Online Community and via our survey, we have heard a lot about what patients think of the guideline but we were also keen to find out how doctors feel about the NICE guideline, particularly those who are familiar with treating complex cases of Lyme disease and seeing patients who never received a timely diagnosis or who went misdiagnosed for many years. Dr. Sarah Myhill and Dr. Jack Lambert kindly shared their views with us, commenting on the content of the guideline and essential pieces of information but also what they feel is missing.
Please note that the opinions shared are those of the doctors and not LDUK. LDUK does not officially endorse any particular practitioner, laboratory test or treatment.
Dr. Sarah Myhill
NICE Guidelines on the treatment of Lyme disease
Conclusion: these guidelines do little to help patients with chronic Lyme Disease (which manifests with a clinical picture of ME).
It is vital to recognise that CFS and ME are not diagnoses but rather collections of awful symptoms that have many and varied causes. Many of the ME sufferers I treat have Lyme disease as a major causative factor. I use the term PWME to indicate ‘people with ME’.
The working definitions that I use for Chronic Fatigue Syndrome and ME are defined by symptoms.
The clinical picture of CFS is characterised by poor energy delivery mechanism.
The clinical picture of ME is CFS PLUS inflammation. Only too often this inflammation is due to chronic infection which may be driven by Lyme, chronic Epstein Barr infection, mycoplasma and/or other such.
The desperate need for appropriate NICE Guidelines to address the burgeoning issue of Lyme disease has arisen from pressure brought to bear by patients with ME [with a Lyme disease causative component], and as spearheaded by Caudwell LymeCo Charity. However, this group of PWME, subgroup chronic Lyme disease, is the least well served by these NICE Guidelines.
The key points of these Guidelines appear to be that to get any NHS treatment for Lyme you need to have either a clear history, clear physical signs or abnormal blood tests vis:
- A characteristic history: an acute illness, accompanied by joint pain following a tick bite, with or without a Bull’s eye rash (also called erythema migrans).
- A Bull’s eye rash alone is considered pathognomonic of Lyme.
- Physical symptom such as: arthritis (acute inflammatory), neurological symptoms (meningitis, encephalitis, facial palsy) skin (acrodermatitis chronica atrophicans), heart symptoms (carditis), eye symptoms (such as uveitis) or lymphocytoma suggesting Lyme.
- Tests: ie positive Lyme blood tests with IgG, IgM, ELISA, and/or immunoblot tests. If these tests are negative but you do have the above symptoms, then you should be referred to a neurologist (for lumbar puncture) or a rheumatologist (for synovial tap).
What I suspect this means in practice is that the majority of chronic Lyme disease sufferers are likely to go undiagnosed.
What patients need to know
- There are no guidelines for people who suspect they have a chronic Lyme disease component as part of their ME, but with none of the above signs or symptoms.
- NHS (and private) blood tests often give false negatives. This is particularly so if there is immunosuppression (which may be a feature of chronic Lyme patients).
- Blood tests alone (ie IgG IgM, ELISA, immuoblot tests) do not exclude a Lyme diagnosis. False negative tests are common if bloods are taken too soon or if the person has immunosuppression (which may be a feature of PWME). At the very least bloods should be repeated 4-6 weeks later.
- If symptoms persist despite negative bloods, then referral to specialists (rheumatologist or neurologist) should be done. These specialists should consider synovial fluid aspirate or lumbar puncture, but they are likely to do nothing unless there are classical symptoms and signs. Again, the chronic Lyme patient is stuck.
- The NICE Guidelines fail to give any idea of prevalence of Lyme stating “this information is currently not available “ …..but then goes on to say “The available data suggests there are areas of higher and lower prevalence”. Stop patronising us – we are all grown-ups – let us have the figures!
- NICE Guidelines fail to address the usefulness of ArminLab tests which look at many possible parameters to diagnose Lyme including Elispot, Seraspot tests in addition to antibody tests and tests for immune suppression. Ecomed doctors and clinicians working in this field with chronic Lyme patients find these tests of most practical value.
- The NICE Committee seem not to consider the biologically plausible possibility that Lyme may be transmitted by biting insects other than ticks.
Antibiotic regimes are given in detail but there is no attention given to the long-term complications of such. These would include photosensitivity (doxycycline) and damage to the gut microbiome. There is no indication as to the success rates of pure antibiotic treatments, simply a general expectation that these will be successful. This is important – ecomed doctors regularly see patients who have undergone such regimes with no apparent benefit.
There is no attention paid to other interventions which either are of proven benefit OR have a biologically plausible basis such as herbal treatments, ketogenic diets, vitamin C, iodine, heating regimes, and so on. Sufferers are disempowered by these Guidelines.
Perhaps the most important recommendation which should be made immediately available to all GPs is that if there is a history suggestive of acute Lyme then it should be treated immediately without waiting for the results of any blood test. It really is a case of the quicker the treatment is applied; the less likely chronicity is.
These NICE guidelines leave the majority of chronic Lyme disease sufferers to fend for themselves, are not fit for purpose and need revision before they are even applied. A sorry state of affairs.
Find out more about Dr. Myhill here.
Dr. John Lambert
Due to the fact that there isn’t sufficient Lyme disease knowledge and experience in the UK, Dr. Lambert is concerned that doctors won’t treat patients who do not experience an EM rash following a tick bite but who do experience a ‘flu like’ illness. He also shared that in his experience, those with untreated Lyme can sometimes become sick 6-12 months later and no alternative diagnosis is found. He is concerned that the guideline makes no recommendation for those with ‘missed Lyme’ as it only focuses on acute cases who experience an EM rash, have a positive antibody test or who receive a clinical diagnosis immediately. Although testing is problematic, Dr. Lambert states that if someone ‘had a tick bite, the tests were negative in England, but positive in Germany, I would believe the German tests. Why ignore them?’
When talking about those who sees who are chronically ill, he states ‘these patients had been sick for years, so why are we treating them for acute Lyme when they have chronic Lyme? 70% of them got better with treatment, combination antibiotics for longer than the recommended 3 weeks. As the infection responded to longer courses of combination antibiotics, it is a chronic infection and not ‘post infectious’. He feels that the guideline ignores the studies which show persistent infection and the failure of short term antibiotics to return patients to full health.
He is also concerned that the subject of co-infections is not addressed by the NICE guideline. In his own review of patients with chronic fatigue syndrome who were negative on Lyme antibody tests, 25% were positive for anaplasma, another tick-borne infection.
Find out more about Dr. Lambert here.
A doctor who does not wish to be named also shared that the time period of the initial course of antibiotics recommended in the guideline is too short and that based on experience, 4-5 week courses would have been more favourable to cover one life cycle of the bacteria. This doctor felt that a week of prophylactic treatment such as intramuscular penicillin would be worth administering to those who are aware of a tick bite. This could help the government financially due to the fact that the cost of misdiagnosis and unneccessary investigations is high and the suffering that can result from an undiagnosed infected tick bite is horrendous. Furthermore, focusing solely on antibiotics is not always best for patients and other supportive measures such as dietary advice from a nutritionist could be valuable to those who are already chronically ill. Specialist Lyme clinics are needed as Infectious Diseases doctors are unable to provide the required level of care.