Unlike most diseases, getting a proper diagnosis for Lyme disease is what is often problematic. It can take a very long time, with some sufferers receiving a series of diagnoses over several years yet still have no relief from symptoms. Among these diagnoses can be Lupus, rheumatoid arthritis, Parkinson’s disease, multiple sclerosis, Chronic Fatigue Syndrome, psychosomatic illness or malingering. Symptoms can be ‘weird’ and inexplicable. People who have undiagnosed Lyme disease have usually had a huge number of tests of every description and still have no definitive diagnosis. In Australia, medical opinion claims that Lyme disease does not exist in this country, yet hundreds of people have received positive diagnoses after having their blood tested by specialty labs in the USA.
The International Lyme and Associated Diseases Society (ILADS) says: Like syphilis in the 19th Century, Lyme disease has been called the ‘Great Imitator’ and should be considered in the differential diagnosis of rheumatologic and neurologic conditions as well as Chronic Fatigue Syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness.
A clue as to whether you need to be tested for Lyme disease, is if you have been diagnosed with one of the above conditions, but the treatment is consistently ineffective or making you worse.
Here are a few things you can do to shorten this process so you can start getting the treatment you need:
- If your illness has taken a long, winding and unclear road, ask your doctor for you to be properly tested for Lyme disease – even if you don’t remember being bitten by a tick or having a rash as a result of a tick bite. This involves an ELISA test, followed by the Western Blot, which is best done at a specialty lab. It’s fairly involved, (which is why many doctors are reluctant to test for Lyme) so find out more about what’s needed from a website such as ILADS. If your doctor is dismissive, be firm and insist on having the blood test. It’s a bit like having your iron levels checked for low energy – it may not be the reason for this problem, but should be eliminated first, before looking at other causes.
- Find a ‘Lyme Literate’ doctor who has some knowledge and experience of testing for and treating Lyme disease.
- Seek out an Integrative Medicine doctor who can offer you a range of treatments according to your needs.
- Do not accept being dismissed, ineffective treatment, or being told to see a psychologist.
- Watch the 2008 Oscar-shortlisted documentary ‘Under Our Skin’ and its sequel, Under Our Skin: Emergence. This will give you the confidence to persuade practitioners to provide for you what you need.
- Connect with good patient online forums to find other people who have recovered from their mysterious illness. One of these is Patients Like Me.
- Keep digging until you receive a diagnosis that leads to treatment that improves your symptoms.
More from the International Lyme and Associated Diseases Society; a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases:
“Lyme disease, transmitted by the bite of a tick, is prevalent across the United States and throughout the world. Lyme disease is a clinical diagnosis and is caused by a spiral-shaped bacteria (spirochete) called Borrelia Burgdorferi, which can cause infection of multiple organs and produce a wide range of symptoms. Fewer than fifty per cent of patients with Lyme disease recall a tick bite or any rash. A “Bull’s Eye” rash is considered classic, but atypical forms of this rash are seen far more commonly.
The ELISA screening tests miss thirty-five per cent of culture-proven Lyme disease, with only sixty-five per cent sensitivity. By definition, a screening test should have at least ninety-five per cent sensitivity.
The Western blot test should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. There are five sub species of Borrelia burgdorferi, over 100 strains in the US and 300 strains worldwide. Testing of other tick-transmitted organisms such as Babesia, Anaplasma, Ehrlichia and Bartonella should also be performed.
Evidence indicates that active ongoing spirochetal infection, with or without other tick borne co-infections, is the cause of the persistent symptoms in chronic Lyme disease. Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. Many patients with chronic Lyme disease require prolonged treatment until they are symptom free. There are no tests currently available to prove that the organism is eradicated, or that the patient with chronic Lyme disease is cured”.
The sooner treatment is started for Lyme disease, the better the outcome, so get a Lyme test done as soon as you can.