Getting an accurate diagnosis enables effective treatment….
Unlike many diseases, getting a diagnosis for Lyme disease is difficult and can take years. Typically, sufferers receive a series of diagnoses over a number of years, all the while getting no relief from their variable and perplexing range of symptoms. Among these diagnoses can be Lupus, Rheumatoid Arthritis, Parkinson’s Disease, Multiple Sclerosis, Chronic Fatigue Syndrome, psychosomatic illness and all too often, malingering.
People who have undiagnosed Lyme disease have usually had a huge number and variety of tests without resulting in a definitive diagnosis. Delays and misdiagnoses are often due to ‘weird’ and inexplicable symptoms which can come and go in erratic cycles. In Australia, medical opinion is that Lyme disease does not exist, despite hundreds of people receiving a positive diagnosis of Lyme disease after having blood tests by specialty labs in the USA.
An explanation for the confusion in diagnosis comes from The International Lyme and Associated Diseases Society (ILADS): 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.
Being diagnosed with one of the above conditions, along with consistently ineffective treatment and a worsening of your symptoms, is an indication for being tested for Lyme Disease.
Here are a few things you can do to hasten 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 and Western Blot tests, best done at a specialty lab, which is fairly involved. You can find out more about what’s needed from a the ILADS website. You may need to insist on having this blood test.
- Seek out an Integrative Medicine doctor who is willing to order the tests you need and can offer you a range of individualised treatments.
- Find a ‘Lyme Literate’ doctor who has some knowledge and experience of testing for and treating Lyme disease.
- Do not accept being dismissed, or being told to see a psychologist.
- Watch the 2008 Oscar-shortlisted documentary ‘Under Our Skin’ and its sequel, Under Our Skin: Emergence. These documentaries will help to give you the confidence to convince practitioners about what you need.
- Connect with 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.
The International Lyme and Associated Diseases Society, a non-profit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases, states: “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 Western blot test should be performed by a laboratory that reads and reports all of the bands related to the Borrelia burgdorferi spirochete bacteria. It is complex, because there are five sub-species of Borrelia burgdorferi. Over 100 of these strains exist in the US, and there are 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. While there are no tests currently available to prove that the organism is eradicated, becoming symptom free after a prolonged period of illness indicates you are on the right treatment path.