Sometimes there are items on-line or in the press that you wonder about – could this be true? Might it help me? Here are some comments on a few of the questions we are asked. If you have other topics you would like to know about, please Contact Us.

Epidemiology – where and how might you catch Lyme disease?

European countries report a far higher incidence of Lyme disease than the UK; why is this?

Lyme disease is an emerging disease in the UK. The proportion of UK ticks infected is on average about 1 in ten, whereas in some European countries it is over 5 in ten – so half of them. [1] Although the disease has been known about in Europe for more than a century, the first confirmed case in the UK was reported in 1985. It seems likely that the pathogenic Borrelia bacteria (the ones which are known to cause disease) were present in UK wildlife well before that, but we don’t know. The bacteria are now spreading though wildlife and the proportion of ticks infected is probably gradually increasing.[2]

How important are co-infections in the UK?

Other tick-borne infections are sometimes referred to as co-infections. They are important, because having more than one tick-borne infection can make diagnosis and treatment more difficult. However, these other infections are nothing like as common in UK ticks as they are in other European countries or in N America. See our page on Tick-borne diseases.

Is person-to-person transmission possible?

Although the bacteria that cause Lyme disease have been found in some body fluids, there is no hard evidence of person-to-person transmission. There is a highly evolved relationship between the tick, the bacteria and the host – human or mouse etc. The bacteria have to be injected into the blood stream, in fairly large numbers, which is where the tick comes in. The tick also injects immunosuppressive chemicals which can prevent the immune system from recognising and dealing with the infection. So it would be very difficult to infect another person, although that doesn’t mean it could not happen.

Don’t forget that you breathe in, and have contact with, a whole host of viruses and bacteria every day, but you do not catch disease from all of them.

Can Lyme disease be transmitted sexually?

There is no scientific evidence that Lyme disease is transmitted during sexual activity. Experiments with animals have repeatedly failed to transmit disease in this way. Although the bacteria have been found in vaginal secretions and in semen, it is a big step from that to causing infection.

The most likely explanation of partners, or several members of the same family having Lyme disease is that they tend to be together, visit the same places, and therefore be exposed to the same risk of tick bites. [3]

Can mosquitoes or other insects transmit Lyme disease?

Living agents that pass diseases to another living being are called vectors. As far as we know the tick is the only vector for Lyme disease. The Borrelia bacteria has a complex relationship with both the tick, in which it spends part of its life, and the mammalian host (mouse, bird, human etc).

Although the Lyme disease bacteria have been found in the salivary glands of mosquitos, there is no evidence that mosquitos are capable of passing them on in a very short bite, in the number and state required to cause an infection. When a tick attaches to a host, it spends some time preparing a feeding pit first. As long as the tick is not squashed, Borrelia are normally not passed to the host for some hours.

It is possible there are other vectors but experiments so far have failed to achieve transmission.

Testing

How can one assess a private test or laboratory?

In the UK reputable private laboratories send their samples for Lyme disease testing to the UKHSA reference laboratories. When deciding to use a private laboratory abroad, always ensure they are accredited to their national standards and use reputable tests.

Some private laboratories do offer alternative tests that are used on other infections, but no research has been published to certify these tests to be more reliable than those used by the NHS and other European official laboratories.

see “Are other types of tests useful” below. Further information can be found on our “Tests” page or by contacting us.

Are German tests really better than NHS ones?

No. Lyme disease tests used by official German laboratories are of the same type that the NHS uses. Confusion arises because some private German laboratories use tests that have not been found to be helpful in diagnosis (eg ELISpot and LTT (Lymphocyte Transformation Test)) and some which are not specific for Lyme disease, but can be abnormal in a range of other conditions (CD57+ immunological marker). See “Are other types of tests useful”.

Are other types of tests useful in diagnosing Lyme borreliosis?
Antibody tests have limitations and there are other “cellular” tests looking at a different part of the immune system. T cell tests for example are known to be helpful in some diseases, such as TB, but so far, their use in Lyme disease has not been proved. A recent study in the Netherlands has concluded “these cellular tests are unfit for clinical use at this stage”. [4]

How are testing laboratories accredited?

A laboratory must be accredited to carry out testing so that it is reliable, and results can be reproduced. They must show that they meet high levels of cleanliness, keep good records, that staff are appropriately trained and that they continuously strive to improve their processes. Laboratories are accredited by the International Organisation of Standardisation to meet the international standards “ISO 15189 Medical Laboratories – Requirements for quality and competence”. ISO 15189 also requires that the laboratories can show the performance of diagnostic tests chosen are able to meet the claims made by the manufacturer.

In the UK, Lyme disease NHS testing can be conducted by national reference laboratories: the Rare and Imported Pathogens Laboratory (RIPL) at UKHSA Porton in England or Raigmore Hospital in Scotland. As well as being ISO 15189 accredited, RIPL participates in a range of international External Quality Assurance (EQA) schemes, which ensures the Lyme disease tests being used are comparable, safe and useful to the patient.[5]

When searching for diagnostic testing in private laboratories, the National Institute of Clinical Excellence (NICE) recommends using a UKAS accredited service.[6] UKAS is the government appointed national accreditation service for laboratories in the UK[7] but other well-recognised international EQA schemes are used within and outside of the UK, such as CSCQ or Instand.

How are specific tests accredited?

When a new type of test is developed, the manufacturer effectively accredits it themselves. Reputable companies will then run trials to show how good the test is compared with other tests – how sensitive and how specific – and will publish the details of the test and the detail of the trials so that laboratories can decide whether they want to use the test.

The published conclusions are only as good (or as bad!) as the trials. If you have queries about a specific test, then Contact Us.

How does Laboratory quality assurance work?

Quality assurance is a process that laboratories use to ensure the accuracy and proficiency in their testing methods. It involves continuous cycles of control, testing and improvement. This is achieved through written processes (Standard Operating Procedures), rigorous documentation, monitoring and evaluating where errors may be mitigated. When a laboratory has all this in place it can then be reviewed by an independent auditor, who may identify areas for improvement.

Laboratories that have demonstrated they adhere to good quality assurance can be accredited with ISO 15189 (Medical Laboratories – Requirements for quality and competence) and ISO 9001 (Quality Management System).

Treatment

What is a Rife machine, and is it helpful?

Rife machines were invented in 1920’s by Royal Raymond Rife. They deliver low electromagnetic waves, like radio waves, through the hands or feet. The suggestion is that all medical conditions have an electromagnetic frequency, and that this machine will deliver pulses at the same frequency, to disable diseased cells.

Rife machines have not been scientifically proven to treat Lyme disease or any other disease. These days, when new treatments are available for use by doctors, they have been rigorously tested to show they work, and they cause minimal harm. Rife machines have not been tested in this way. Reports that these machines are effective for Lyme disease are anecdotal and are not backed up by scientific studies.[8]

Is disulfiram a useful treatment?

We don’t know. Disulfiram is a drug that is currently prescribed for chronic alcoholism. It has some very unpleasant side-effects, such as making you extremely sensitive to alcohol and causing mental health deterioration.[9.10] However, it is known to have properties that can kill microbes, such as bacteria, in a laboratory setting. But a laboratory is not a human body.

Some people take disulfiram to treat persistent symptoms of Lyme disease although it is not currently licensed for this use. This means that clinical trials have not yet shown that the benefit of disulfiram for this purpose out-weighs the risks.[11]

Are any herbal treatments useful?

There is no evidence that herbal remedies are effective against the Lyme disease bacteria, though it is possible that some of them may help relieve symptoms. For example Cat’s Claw has some anti-inflammatory properties although it is not without risk. It has an effect on the immune system and the importance of this in Lyme disease is not known.[12]

Are food supplements useful?

On the whole, as long as you have a balanced diet, you should not need any supplements. They are cleverly marketed, but usually best avoided, particularly if you are taking any prescription medicines, as things like magnesium might interact with doxycycline or other antibiotics.

Vitamin D through September to March, or throughout the year for those with a dark skin, is probably the only supplement that UK adults should consider unless they have a definite deficiency. See the British Dietetic Association.

References

  1. Estrada-Peña A  et al. An updated meta-analysis of the distribution and prevalence of Borrelia burgdorferi s.l. in ticks in Europe. Int J Health Geogr. 2018;17(1):1–16.
  2. Lindgren E, Jaenson T. Lyme borreliosis in Europe : influences of climate and climate change, epidemiology, ecology and adaption measures. World Health Organisation. 2006;EUR/04/504.
  3. National Institute for Health and Care Excellence Lyme Disease: Diagnosis and Management [M] Evidence Review for Person-to-Person Transmission NICE Guideline 95 April 2018
  4. Baarsma, M E, et al. 2022. “Diagnostic Parameters of Cellular Tests for Lyme Borreliosis in Europe (VICTORY Study): A Case-Control Study.” The Lancet. Infectious Diseases, June.
  5. Lyme disease: sample testing advice – GOV.UK. https://www.gov.uk/guidance/lyme-disease-sample-testing-advice. Accessed March 4, 2021.
  6. National Institute for Health and Clinical Excellence. Accreditation Process Manual.; 2014.
  7. Certification body accreditation – UKAS.  Accessed April 8, 2021.
  8. Cancer Research UK – Rife Machines.  Accessed March 4, 2021.
  9. British National Formulary. Accessed 17 March 2021
  10. Gao J et al. “Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis: Retrospective Review of First 3 Years’ Experience in One Medical Practice. Antibiotics 2020 Dec 4;9(12):868.
  11. ClinicalTrials.gov. Disulfiram: A Test of Symptom Reduction Among Patients With Previously Treated Lyme Disease -https://clinicaltrials.gov/ct2/show/NCT03891667.
  12. Versus Arthritis Complementary and Alternative Medicines for the Treatment of Rheumatoid Arthritis, Osteoarthritis and Fibromyalgia.; 2012.