Let's learn about Lyme Disease

Symptoms of Lyme disease

Symptoms can start with an erythema migrans (EM) rash, often described as a bulls-eye rash, but the rash can also be more irregular, which sometimes leads to a misdiagnosis of ringworm or cellulitis.

Not every Lyme disease patient will experience or remember a rash…

It’s important to note that not every Lyme disease patient will experience or remember a rash, as figures state that the rash appears in two out of every three Lyme patients. The rash may not appear straight away. We advise people to draw a ring around suspicious looking rashes to track any potential changes.

Symptoms of Lyme disease can include malaise, unexplained flu-like symptoms, soreness and achiness, light and noise sensitivity, cognitive problems, fatigue, a stiff neck, facial palsy, numbness and tingling. Left untreated, the infection can spread anywhere in the body leading to around 70 recognised symptoms. People can develop issues with their endocrine and neurological systems and experience musculoskeletal, cardiac, dermatological and neuropsychiatric problems.

Early symptoms

• Fatigue
• Muscle and joint pain
• Headaches
• Fever and chills
• Neck stiffness
• Nausea
• Digestive issues
• Bull’s-eye rash, known as erythema migrans (EM). This is diagnostic of Lyme disease but it isn’t always present.

• Pain and swelling in the joints (inflammatory arthritis)
• Problems affecting the nervous system – such as peripheral neuropathy, paralysis of facial muscles (Bell’s palsy)
• Cognitive problems such as memory issues, word finding difficulties and ‘brain fog’
• Headaches and migraines
• Heart problems – such as inflammation of the heart muscle (myocarditis) or peridcardial sac surrounding the heart (pericarditis), heart block and heart failure
• Inflammation of the membranes surrounding the brain and spinal cord (meningitis) – which can cause a severe headache, stiff neck and increased sensitivity to light
• Disturbed sleep – either too little or too much Fatigue and post exertional malaise
• Dysautonomia – dysfunction of the autonomic nervous system causing issues with heart rate, blood pressure etc
• Vision and hearing problems
• Vertigo and dizziness
• Anxiety and depression

Testing for Lyme disease

Testing for Lyme disease is highly problematic. We need better testing which is universally accepted. Current testing is flawed and and there is no test available to indicate when the infection has been eradicated.

The initial test offered by the NHS is called an ELISA test which is usually performed at your local hospital laboratory and takes a few days or possibly a week to come back. Although there have been no specific studies to find out the percentage of false negatives in the UK, the reliability of the ELISA test appears to be questionable and it’s important to be aware that a negative result cannot rule out Lyme disease.

If the ELISA test is positive or equivocal, the blood sample is usually sent to the National Reference Laboratory at Porton Down in England or the NHS Highland National Lyme Borreliosis Testing Laboratory at Raigmore Hospital in Scotland. The Western blot (sometimes called an Immunoblot) is then performed. This test may still miss cases. You can request printouts of both of these tests and it’s advisable to do so for your own records.

There is evidence to suggest that Lyme disease does not behave like many other infections in terms of antibody responses and many doctors are not aware of this when interpreting results. Current UK testing does not include all strains of Borrelia known to cause disease.

Treatment

Treatment of Lyme disease is perhaps one of the most controversial subjects in medicine. The best way to treat Lyme disease is embroiled in a highly political debate. Some medical professionals believe that Lyme disease is an easily treatable, self limiting infection whereas others believe it’s an insidious disease, capable of evading the immune system and persisting beyond a short course of antibiotics, therefore requiring long term treatment.

Some patients choose to use a mixture of treatments from both conventional and alternative medicine. As there is so little research into the most effective treatment for late stage, chronic Lyme disease and its associated conditions, people usually discover that different treatment options suit different people and that there is no standard protocol. Many of the Lyme literate practitioners look beyond simply a Borrelia infection and examine their patients for co-infections, opportunistic infections, hormonal imbalances, nutritional deficiencies, food intolerances, heavy metal or mould toxicity and many other pieces of the often complex puzzle.

Lyme, Lyme’s or Lymes Disease?

You may have heard many different variations of the name ‘Lyme disease’, including Lymes disease, Lyme’s disease, Borreliosis and Lyme Borreliosis. We hope this post helps to clear up any confusion surrounding the correct name.

The infectious agent that causes Lyme disease is technically a bacteria called Borrelia burgdorferi. Borrelia is the name of the group of bacteria and burgdoferi is the particular strain, however the term ‘Lyme disease’ is also often used to describe the disease caused by other strains of Borrelia such as B. afzelii, B. garinii and many more. Borreliosis is the medical term for disease resulting from a Borrelia infection. In mainland Europe, the common name for Lyme disease is Lyme Borreliosis.

This is best explained with a quick history lesson! Lyme disease was first described in the 1970s in a town called Lyme in the state of Connecticut in the USA. Children in the area suddenly started to suffer from what appeared to be juvenile rheumatoid arthritis. Doctors and researchers then referred to this disease as ‘Lyme disease’ after the town and despite the fact that the causal agent was then discovered to be the Borrelia bacteria, the name ‘Lyme disease’ stuck. Now arthritis is just one of the many symptoms associated with Lyme disease and in Europe it is often not even the main hallmark of the illness. It’s thought that this may be due to the differing strains of Borrelia found here. ‘Lyme’s disease’ would be correct if the disease was named after the person who discovered it -i.e. like Parkinson’s disease. However, it was actually Willy Burgdorfer who first discovered the bacterial cause of the disease and this is why one of of the strains of Lyme disease is called Borrelia burgdorferi.