Patient Support
Patient Support
Those impacted by the effects of Lyme and other tick-borne diseases are often faced with a lack of understanding and support. This may come from friends, family, co-workers, or physicians that don’t understand the complexities or the impacts that many of these illnesses may have on an individual or family. This lack of understanding makes an already difficult illness even harder to cope with.
Some Coloradans are quickly diagnosed and effectively treated, experiencing no further complications from Lyme disease. Others are among the estimated 10-30% who experience ongoing complications from a Lyme infection – even after antibiotic treatment.
Living with Lyme disease is not easy. Some people experience chronic fatigue, headaches, and joint or muscle pain. Others have cognitive difficulties leaving them unable to continue working or safely drive a vehicle.
Dr. Neil Spector has called Lyme disease “the infectious disease equivalent of cancer” due to its potential complexity and potential need for an individualized treatment approach, yet access to physicians who specialize in tick-borne diseases is extremely limited in Colorado.
People with complex, ongoing health problems related to Lyme disease may not look ill, but their experience may be extremely difficult
- A study by Klempner, et al., showed “There is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease”.
- A study by Steere, et al., concluded that “Months to years after the initial infection with B. burgdorferi, patients with Lyme disease may have chronic encephalopathy [abnormal brain function], polyneuropathy [degeneration of peripheral nerves], or less commonly, leukoencephalitis [severe brain inflammation].”
- A more recent study showed the quality of life for post-treatment Lyme patients was lower than patients with other chronic diseases, “including congestive heart failure, diabetes, multiple sclerosis and arthritis”. In addition, the Lyme patients had, “significantly lower health quality status, more bad mental and physical health days, a significant symptom disease burden, and greater activity limitations” when compared to the general population. They also reported “impairment in their ability to work, increased utilization of healthcare services, and greater out of pocket medical costs”.
Complex Lyme disease is an isolating disease
Coloradans with ongoing health problems due to Lyme disease have experienced relationship difficulties, loss of social support, financial problems, or unemployment. These circumstances can lead to depression, so it is important to seek help from mental health professionals and from fellow Coloradans who understand the ways Lyme disease may impact your life and family.
Disagreements within the medical community about the correct treatment for Lyme disease has left Colorado patients feeling stigmatized. Many Coloradans have difficulty accessing effective medical care, or find that treatments that work well for them are met with skepticism by physicians who are not familiar with the potential benefits of complementary or alternative medical treatments. Some feel “stuck” between different views of medicine, or unsure if they will ever regain their health or resume their normal activities.
Despite the high incidence of Lyme disease in the nation, there are not many resources dedicated to treatment or support for patients adversely affected by their experience of a tick-borne disease
Complex tick-borne infections have been shown to cause psychiatric issues including depression, impulsivity, violent outbursts, OCD, and suicidal thoughts. If you are experiencing any of these symptoms please seek help from a medical or mental health professional. Contact Suicide.org, text the crisis text line, or call the National Suicide Prevention Hotline.
Coloradans with Lyme disease need understanding, support, and access to care. Below we provide avenues for patients or caregivers throughout Colorado to reach out to others regarding questions or concerns as well as providing places for social and emotional support. Though the understanding regarding Lyme and tick-borne diseases in Colorado may be limited…you are not alone here!
Support Groups
Please keep in mind that it is the individual’s responsibility to check out the support groups policies, philosophy and affiliations. COTBDAA provides the group links as a source of resource, but all information shared within these groups is that of the individual participating, not that of COTBDAA. COTBDAA does not provide medical advice. Medical decisions should always be made between you and your physician.
Lymedisease.org
lymedisease.org
LDO offers links to support groups for patients in Colorado and nationwide. Join with others in your own state to bring change through education, advocacy and activism. The Lyme disease state sites are moderated by volunteers. They can help you find resources, answer questions, and tell you about local events. LymeDisease.org sends the state groups action alerts and updates on national issues. Lymedisease.org also hosts the MyLymeData database which was created by patients, for patients.
Colorado Lyme & Tick-Borne Disease Support Group
The Colorado Lyme & TBD Support Group provides a private space to interact and find support with other people faced with the challenges of Lyme and other tick-borne diseases. The Facebook group is a closed group for private communications among members. To join FB group, please request membership here.
Military Lyme Support®
facebook.com/MilitaryLymeSupport
This site is a source for information and emotional support for ALL Members of the Armed Forces: Veterans, Active Duty, Reserve, Family and Caregivers. Military Lyme Support empowers our members to get the cutting-edge treatment they need to overcome their illnesses via the ILADS Treatment Guidelines. Doctor referrals, VA, MTF and Tricare advice is also provided. Confidential assistance available.
Parents of children with PANDAS/PANS/LYME/TICK-BORNE DISEASES
facebook.com/groups/189241844607935/
This a closed group for parents who are looking for support and information while they care for their dependent children.
Families for Joy
familiesforjoy.com
This site is a source for support for Lyme patient caretakers. Free weekly virtual support group meetings are guided by Lyme mom and advocate, Gloria Kim. Individual consultations are also offered.
Lyme Disease Stories
www.lymediseasestories.com
A collection of experiences from people with Lyme and Tick-Borne Disease created by Taylor Skye Schwabe. An opportunity to share your story and view others. A beautiful and heart wrenching compilation of those whose lives have been impacted by Lyme.
