Physicians and health professionals play an important role in diagnosing and treating Lyme disease, but every patient is the true expert regarding their own health and well-being.
A Comprehensive Approach
Many physicians will prescribe antibiotics for a tick-borne infection, but the following areas that may need to be addressed in treatment:
Gastrointestinal Function, Liver Function, Detoxification, Chronic Inflammation, Endocrine/Hormonal Dysfunction, Anxiety/Depression, Neurological Problems, Fatigue, Pain, Immune System Dysfunction, Difficulty Sleeping/Insomnia, Diet/Lifestyle Choices, Relationships/Social Impact, Cognitive difficulties, Relationships, Environment
Tick-borne infections – More than Lyme Disease
If you do not feel better after treatment for Lyme disease, or if you symptoms are severe, ask your doctor if you may have another tick-borne infection. These include: Babesiosis, erlichiosis, anaplasmosis, Southern tick associated rash illness (STARI), tularemia, Q-fever, relapsing fever, and Rocky Mountain spotted fever. Other possible infections that may impact your health include: Mycoplasmas, brucellas, chlamydias, salmonellas, leptospirosis, chronic viral infections (including herpes) and Bartonella infections.
Caring for a family member with complex Lyme disease can be extremely challenging. Many families experience:
- Difficulty finding treatment (and/or long commutes to physicians)
- Financial problems – due to treatments not covered by health insurance, or job loss/reduced hours/disability
- Trouble making diet and lifestyle changes recommended by medical providers
- Difficulty planning ahead (due to the unpredictability of Lyme symptoms)
- Challenges explaining their diagnosis and illness to others
- Difficulty caring for children, or participating in community and social activities
Tick-borne diseases can affect mental health, and for some people behavioral or cognitive problems are the only symptoms present of a tick-borne illness. Lyme disease has been shown to contribute to suicidality, and symptoms in children can mimic ADHD or learning disabilities, affecting classroom performance.
A positive Lyme test does not necessarily mean someone has Lyme disease. It may mean that a person was infected in the past and the body produced antibodies that successfully eliminated the Bb bacteria. Also, some viral illnesses or other infections can trigger the body to make antibodies against Lyme – even in the absence of a current Lyme infection.
A negative test may not rule out Lyme disease, especially if you have symptoms. According to the CDC, testing for Lyme disease too early will result in a negative test, even if the person is infected. Taking prophylactic antibiotics can also result in a person with Lyme disease testing negative. There are more tick-borne diseases in Vermont that will not appear on a blood test for Lyme disease.
Treating Lyme and Tick-borne diseases
It is important to find a health professional willing to participate in a partnership with you in the treatment of Lyme and Tick-borne diseases. It is also important that you be proactive about your health. Medical professionals can be excellent resources, but much of your ability to heal depends on you. Educate yourself about how to prevent and treat Lyme and tick-borne diseases, and to the best of your ability, make lifestyle choices that support healing.
The Global Lyme alliance provides a list of resources for financial assistance.
Lyme-TAP (Lyme Test Access Program) is a FAP for diagnostic testing.
Lyme Light Foundation – offers grants for anyone diagnosed with Lyme disease through age 25 who can demonstrate a qualified financial need.
The Lyme Disease Association’s Lyme Aid 4 kids program provides grants to eligible kids under 21 years of age.
VTLyme.org is in the process of developing a policy for listing treatment resources specific to Vermont. If you know of a resource that would be beneficial to individuals and families affected by Lyme disease please let us know.
The Burlington Area Tick-borne Disease Support Group has compiled this list of web links their members found helpful (these links may not represent the viewpoint of VTLyme.org):
Global Lyme Alliance: www. globallymealliance.org
Lyme Disease Association: www.lymediseaseassociation.org
Tick Encounter: www.tickencounter.org
International Lyme and Associated Disease Society: www.ilads.org
Time for Lyme: www.timeforlyme.org
Surveys University-Lyme Disease Research Studies: www.columbia-lyme.org/index.html
Vermont Department of Health: www.healthvermont.gov/disease-control/tickborne-diseases
Lyme Info www.lymeinfo.net/index.html
Lyme Action Network: www.lymeactionnetwork.org
Bay Area Lyme Foundation: www.bayarealyme.org