Re: Lyme disease: summary of NICE guidance. Guidelines for Flat-Pack patients
All the parts are laid-out on the living room floor, timber, steel rods and brackets and little plastic bags of various sized screws. The instructions are in 10 languages and have orderly little pictures that make it easy to assemble your lovely new display cabinet.
Two hours later and the screwdriver has disappeared, along with two of the screws which Timmy was flicking for the cat to chase. Several of the parts are the ‘wrong’ size and must be from an entirely different kit. Three hours later and mum has gone to visit her mother, Timmy has been sent out to play having just been told that he was ‘adopted’ and dad is rehearsing his speech in court for when he sues the criminals that wasted his Sunday morning.
It is what can happen when the inexperienced attempt to follow supposedly simple instructions, even though all the parts are there and just need handling correctly. Now imagine that the kit really did arrive with some parts missing along with a few extra bits that have no function. The instructions are only in Chinese and were written for 7 different types of cabinet - none of which resemble the one waiting to be assembled.
Diagnosing the trickier medical conditions can be like this. With around 20% of initial diagnoses being plain wrong and up to two-thirds requiring some refinement, with bad instructions doctors can end up with a flat-pack patient that has only one working door and a rail that falls off when you try to hang up a shirt.
NICE have designed a guideline for flat-pack patients which will leave doctors who are working at the sharp-end, with some very ill and dissatisfied customers. We suggest checking the ILADS website for guides to diagnosis and treatment as well as symptom checklists. For now, we provide the VIRAS list of missing parts from the NICE guideline:
• Most infected patients will not report a recent tick bite
• Most infected patients will not present with or recall an EM rash
• Only around half of infected patients will get positive serology results
• There are no tests validated for UK strains of borreliosis or UK patients
• Serology only detects the presence of antibodies and cannot prove the presence or absence of the infective organism. A study in Poland found IgG antibodies in 29% of healthy blood donors. In Germany 5% of blood donors and 28% of people with other illnesses have borrelia antibodies
• Patients who have been infected for years may well have negative serology or their results may be confusing. E.g., they will get positive results for IgM antibodies instead of the expected IgG
• Patients who have negative serology might test positive by high quality diagnostic tests such as Culture, PCR, Elispot, FISH, etc. These tests can show the presence and persistence of the organism
The future health of a substantial proportion of infected patients will depend on getting a clinical diagnosis without supporting serology. This is in accordance with the instructions of the test manufacturers and contrary to the unjustifiable advice of NICE. E.g., the Viramed instructions for the Virastripe, the first-tier ELISA test used by PHE, state: “bands have to be considered as symptoms of the disease. A final clinical diagnosis should always be made considering anamnesis, clinical manifestations and laboratory data”. A similar codicil applies to their Immunoblot tests and can be found in every responsible test kit manufacturer’s instructions
Be aware of co-infections that can be caught from tick-bites. Co-infections can be serious diseases in their own right, e.g., ehrlichiosis, babesiosis. Lyme specific treatment is not effective for all co-infections. Tests are available for co-infections
Be aware of opportunistic infections which in late-stage Lyme disease take advantage of immune suppression. Opportunistic infections might include systemic candida, Chlamydia pneumoniae, mycoplasmas and recurring viruses such as HHV’s
Antibiotics can resolve an EM rash and improve other symptoms but that does not mean that the infection has been eradicated
Doxycycline in particular may bring relief of symptoms, but this could be due to spirochaetes converting to ‘adverse condition’ dormant forms which can revert to vegitative forms later
Warn patients that symptoms can become worse during treatment. If they become very severe, pause antimicrobial treatment. Some of the proteins released by killed borrelia spirochaetes are highly toxic
In late-stage Lyme disease, infection can be sustained within biofilms which are resistant to antibiotics and immune clearance. Consider researching ways to combat biofilms
In chronically ill patients with severe symptoms, improvement can be slow and require patience. Treatment should be tailored to an individual patient’s illness as well as what they can tolerate
In difficult to treat infection, some doctors find combination antibiotics more effective (as is standard when treating TB)
Lyme disease has long been a rich source of missed and misdiagnoses and there is good reason why it is sometimes described as the ‘New Great Imitator’ where Syphilis was the original. General ignorance about Lyme disease and misplaced trust in unreliable laboratory testing, has resulted in large numbers of misdiagnosed cases. M.E., Chronic Fatigue Syndrome, MS, Parkinson’s, Alzheimer’s, Fibromyalgia, etc., all have their share of undiagnosed Lyme patients. Lyme disease patients who have been misdiagnosed might be distinguishable by their symptoms. Symptom checklists are available as well as differential diagnosis charts from ILADS and others
Don’t panic. The NICE guideline provides a convenient route to get rid of difficult Lyme disease patients after a few weeks, although patients do not have such an option and for some - their only way out is death, sometimes by their own hand
NICE have washed their hands of many of unfortunate Lyme disease patients who are the wrong shape for their construction of Lyme disease. Their guideline is for flat-pack patients and doctors who blindly follow instructions. If only Lyme disease were really that simple…
Peter Kemp MA
and members of VIRAS
Competing interests: No competing interests