Lyme Disease Assistance
What is Lyme Disease?
Lyme disease is a bacterial infection spread to humans by infected ticks. Ticks are tiny arachnids found in woodland areas that feed on the blood of mammals, including humans. Tick bites often go unnoticed and the tick can remain feeding for several days before dropping off. The longer the tick is in place, the higher the risk of it passing on the infection. Lyme disease can affect your skin, joints, heart and nervous system.
Treatment of Lyme Disease
NHS treatment of Lyme Disease is limited. There is a suggested treatment pathway in place but this only applies to those diagnosed shortly after infection and only includes treatment through antibiotics which is often not provided for long enough.
The symptoms of Lyme disease
The symptoms and effects of Lyme disease can be divided into three stages:
Stage one - early reaction to the local skin infection
This can develop at any time between 3 and 36 days after being bitten by an infected tick.
Rash - the classical symptom of Lyme disease is a typical rash called erythema migrans. However, this does not always occur. It may depend on which species of borrelia is involved. In the UK, most people with Lyme disease have not had this rash.
The rash is usually a single circular red mark that spreads outwards slowly over several days. The circle gets bigger and bigger with the centre of the circle being where the tick bite occurred. As it spreads outwards, a paler area of skin emerges on the inner part of the circle. Therefore, the rash is often called a 'bulls eye' rash.
Erythema migrans rash
The rash usually spreads over at least 5 cm, but may be much bigger. The rash is not usually painful or particularly itchy. You may not even notice it if it is on your back. Without treatment, erythema migrans typically fades within 3-4 weeks. However, just because the rash fades does not necessarily mean the infection has cleared from the body.
Note: many insect bites cause a small red blotchy 'allergic' rash to appear soon after the skin is bitten. These soon go away. The rash of erythema migrans is different in that it usually develops several days after the bite, lasts for longer, and has a typical spreading circular appearance.
Flu-like symptoms - these occur in about a third of cases. Symptoms include tiredness, general aches and pains, headache, fever, chills and neck stiffness. These symptoms are often mild and go within a few days, even without treatment (but the infection may not have gone).
In some cases, the infection does not progress any further, even without treatment, as the immune system may clear the infection. However, in some cases that are not treated, the disease progresses to stage two.
Stage two - early disseminated disease This may develop in untreated people weeks or months after the bite. Disseminated means spread around the body away from the site of the original infection. Symptoms are variable but can include one or more of the following:
Joint problems - in one or more joints. They most commonly affect the knee joint. The severity of joint problems can range from episodes of mild joint pains, to severe joint inflammation (arthritis) causing a lot of pain. Episodes of joint inflammation last, on average, three months and are characterised by joint pains that migrate around the body from day to day.
Nerve and brain problems - some affected people develop inflammation to nerves, particularly the nerves around the face. This may cause the nerve to stop working and result in Bells Palsy. Inflammation of the tissues around the brain (meningitis) and inflammation of the brain (encephalitis) may occur.
Heart problems - some affected people develop inflammation of the heart (myocarditis) and other heart problems. This may cause symptoms such as dizziness, breathlessness, chest pain and a feeling that your heart is beating in a fast, irregular way (palpitations).
Rash - several areas of the skin (not where the tick bite occurred) may develop a rash similar to erythema migrans (described above). These 'secondary' rashes tend to be smaller than the original stage one rash. These tend to fade within 3-4 weeks. Occasionally, blue-red nodules called lymphocytomas may develop on the skin, particularly on ear lobes and nipples.
Less commonly, other organs such as the eyes, kidneys and liver are affected, causing a wide range of symptoms.
Stage three - persistent (chronic) Lyme disease This may develop months to years after infection. It may develop after a period of not having any symptoms. A whole range of symptoms have been described in joints, skin, nerves, brain and heart. The brain problems may include mild confusion, and problems with memory, concentration, mood, personality and balance. It occasionally may cause a schizophrenic-like illness. There may be tiredness and joint pains which have been called "post-Lyme syndrome" with symptoms similar to fibromyalgia, chronic fatigue syndrome, MS and arthritis.
Diagnosing Lyme Disease
Lyme disease can be a difficult condition to diagnose, particularly in its latter stages. This is because its symptoms are highly variable and also shared by other common conditions such as those listed above
GPs are generally able to diagnose and treat acute Lyme disease i.e. those patients that notice they have been bitten and present within 24-48 hours of their rash appearing. Antibiotics will be given for approximately 2-4 weeks and this usually clears up the infection and stops other symptoms developing when using antibiotics for a minimum of 4 weeks.
The diagnosis of persistent chronic Lyme disease is more difficult to determine and a particularly new and contentious area for the NHS. This means many GPs are not aware of the disease or how to treat it. Some may offer testing (see below) and if diagnosed the standard 2-4 weeks of antibiotics will be given but research has shown that this is often not long enough. Lyme Disease Action (LDA) state that:
‘The bacteria that cause Lyme disease have a very long life cycle, reside in human tissues with a poor blood supply (e.g. tendons) and have the ability to evade the immune system. These factors, among others, make it hard to eradicate. There is ample evidence in the scientific literature of viable bacteria isolated from treated patients and it is likely that in some cases continuing symptoms are due to still active infection’.
Tests on the NHS for Lyme disease need to be carried out at least 3 months after you were bitten by the tick because it can take this long for the antibodies to develop. You may need to be re-tested if Lyme disease is still suspected after a negative test result.