Lyme In Depth

Awareness helps prevent an acute case of Lyme disease developing into a disseminated infection which is much harder to treat and can cause many disabling years of illness.  Many people don't learn about Lyme until they already have it, and they face a long and difficult recovery period.  

Raising awareness in the general public might just help prevent this pattern continuing.

May is Lyme disease awareness month - summer is approaching and ticks become more prevalent so it is important to know what to do if you find a tick attached to you and what symptoms to look out for if you have been bitten.

Lyme disease is being recognised as a major issue in many countries around the world.  It can cause severe health problems, especially if it is not diagnosed in its early stages.  Increasing awareness means people can get treatment faster, in the acute stage of the infection, and prevent the debilitating symptoms caused by disseminated Lyme disease.

Lyme disease is caused by Borrelia bacteria - multiple strains have been associated with Lyme, hence it is also known as Lyme Borreliosis.  Lyme is spread by ticks, which are blood sucking arachnids (read more about ticks from Lyme Disease Action's page on ticks).  Ticks can be as tiny as a poppy seed and very hard to spot, they numb the skin as they attach themselves, so you do not feel a tick bite, then they drop off after their blood meal (staying attached for up to 72 hours).  It is possible for tick bites to go entirely unnoticed.  As they 'feed' they can also transmit infections.  Lyme disease is generally the most commonly known, but there are many other tick-borne diseases, generally referred to as co-infections.

 

Tiny ticks
Image from BADA-UK

If you find a tick attached, remove it [how to remove a tick safely - from BADA-UK].  It may be helpful to keep the tick in a sealed bag or box so it can be tested.  Alternatively, safely kill the tick.  Suggested methods include: squashing the tick in a tissue inside a sealed bag (to prevent the possibility of contamination by the tick rupturing and contents getting on your skin/ fingers/ into your eyes etc.), or by freezing or boiling the tick, if possible.

Unfortunately, testing for Lyme disease is complex and current testing methods are not reliable, producing many false negatives.  This means that even if you do have Lyme, your tests may come back negative if your body does not show signs of fighting the infection (e.g. produce antibodies).  Some research has shown that Borrelia bacteria can 'hide' from the immune system (see here for an overview - a search on Google or scholar.google.com will produce more scientific articles).   
 

Borrelia is a spirochete - imagine a microscopic tadpole with a spiral-shaped tail.  This enables it to burrow through tissue meaning it can infect any part of the body.  In the 19th century, syphilis - also a spirochete - was called the 'great imitator' because it caused disparate symptoms which mimicked many other diseases.

Similarly, because borrelia can infect any cells in the body, many people exhibit many different symptoms [over 100 symptoms have been recorded in relation to Lyme disease: see list from LDA-UK].  The disparity in symptoms combined with the difficulty in testing means that a Lyme diagnosis can be difficult to confirm with blood tests alone.  In Lyme-endemic areas where doctors see many cases and have years of experience, a clinical diagnosis is often used to diagnose Lyme disease, and treatment can begin more quickly.

In cases where the tick has been found, or where a very specific erythema migrans (see photo below) appears, Lyme can be diagnosed more easily.  It is unclear what percentage of infections exhibit this rash.  Estimations vary from 4% to 70% - almost every article, website and study gives a different estimation of those who remember/ had an EM rash. 

Classic EM or 'bullseye' rash
Photo from Lymepedia

 Further images showing various presentations of the rash can be seen on Google images.



In the early stages, it is thought that most, cases can be treated effectively with a course of antibiotics.  However, for reasons not yet understood, this is not always the case.  
 

The longer the infection goes untreated and the bacteria spread throughout the body, treatment becomes more complex.   In cases where a tick bite has not been noticed, people may suffer with symptoms for years before  they are accurately diagnosed and begin treatment.  There is also evidence that Borrelia may remain in a dormant form, and become active when conditions are 'good' - for example when the body is weak (in times of stress, or if the person catches a virus).    
 

Lyme disease has overlapping symptoms with many other illnesses and may be misdiagnosed as Multiple Sclerosis; Chronic Fatigue Syndrome (CFS) / Chronic Fatigue Immune Deficiency Syndrome (CFIDS); Rheumatoid Arthritis/ Lupus and many others (for a more detailed list of illnesses which have similar symptoms, see here.  While not all cases of these diseases are attributed to Lyme disease, Lyme disease may be misdiagnosed as many of these, depending on the symptoms exhibited.
 

Lyme disease which is untreated for a long period of time may cause severe neurological symptoms (Lyme neuroborreliosis), paralysis, organ failure, and even death.

Many people are unaware of the severity and complexity of Lyme disease.  Please help spread awareness of Lyme disease to prevent further lives being destroyed by this devastating illness.

For an insight into Lyme disease, check out the award-winning documentary Under Our Skin.

Image from documentary Official Website

At times, Under Our Skin may be viewed for free on certain websites.  This may be country-specific.  Many clips are also on YouTube.