Lyme Disease, a tick-borne chronic illness that can target every part of the body and lacks mainstream understanding, leaves hundreds of thousands of sufferers without answers and resources to provide relief. Ashley Shambaugh is a Lyme Disease advocate whose mission is to raise awareness of the illness, build community, and inspire change with her story.
In May 2020, a sudden onset of various debilitating symptoms, including brain twitching, chronic pain and panic attacks, left Oregon resident Ashley Shambaugh repeatedly hospitalized. However, she regarded them as isolated occurrences and did not consider any underlying issues. Then, her condition worsened, with Shambaugh struggling to walk and suffering from severe memory issues, disrupting her life and everyday routines. At that point, she knew something wasn’t right. Thus, she began her battle with chronic late-stage Lyme Disease.
Searching for Answers
By the middle of 2020, Shambaugh’s health continued to decline, with a myriad of symptoms coming and going every day, including burning pain in her hands and feet, numbness, tingling, muscle spasms, and joint pain. Her legs even began to give out. Initially, her doctor tested her for Multiple Sclerosis (MS), which came back negative. A later autoimmune panel came back positive for an autoimmune disease but did not specify what type of autoimmune disease she had. Shambaugh continued to live with her unexplained, unpredictable symptoms.
This ongoing frustration is all too common for tick-borne disease (TBD) sufferers, so many turn to internet forums such as Facebook groups to connect with others who share a similar story – and that’s what Shambaugh did. After gathering insight from members of an autoimmune disease support group and conducting her own research, Shambaugh considered the possibility that chronic Lyme Disease could be the culprit of her multiple ailments. She asked her doctor to get tested, and they moved forward with the process.
The Lyme Disease Testing Process
Shambaugh considers herself lucky to have a provider who listened to her concerns. Unfortunately, some doctors in the Pacific Northwest, as well as worldwide, tend to dismiss patients’ concerns about TBD, as they are not trained in tick-borne diseases or don’t believe ticks are an issue in their region. In fact, Lyme Disease’s name originates from Lyme, Connecticut, where ticks are more prevalent. However, TBD can strike anywhere at any time.
In addition, a TBD diagnosis may take years to a lifetime to obtain. Not only is it difficult for a Lyme patient to prove its severity as testing is often inaccurate, but a provider could instead misdiagnose the condition as Alzheimer’s, MS, Lupus, or Fibromyalgia. Advocating for yourself is crucial to receive the proper testing and treatment for a chronic illness like Lyme Disease.
Shambaugh tested positive for Lyme Disease with the standard Western Blot and Elisa test, with the labs returning CDC positive for chronic late-stage Lyme Disease in September 2020. Western Blot and Elisa tests are typically covered by insurance, while further testing, like Igenex, may be out-of-pocket. Later, she tested positive for co-infections Bartonella and Babesia, which could further complicate Lyme treatment and recovery. By that time, Shambaugh had begun her journey toward healing. Unfortunately, this was not without significant challenges.
Navigating Financial Hardship as a Chronic Lyme Patient
Following her Lyme Disease diagnosis, Shambaugh’s excruciating symptoms rendered her unable to work, and she quit that October. She then applied multiple times for Social Security Disability Insurance (SSDI), ultimately resulting in a denial. This devastated Shambaugh and her family; as her resources began to deplete, Shambaugh was at a loss for how she could support herself and her household. As a result, she suffered mentally, physically, and financially, as the costs to manage her illness climbed to tens of thousands.
Shambaugh later began a GoFundMe to help alleviate her illness’s financial burden on her life. This aided in covering various treatments, such as years of multiple antibiotics, herbal remedies, low-dose immunotherapy, doctor’s visits, IV therapy, diet changes, holistic treatments, and more. At one point, Shambaugh recalls taking as many as 93 pills daily. Unfortunately, while some treatments helped alleviate some symptoms, there is still no cure for her life-altering late-stage chronic Lyme Disease.
The Beginning of Ashley’s Lyme Disease Advocacy
According to Shambaugh, one of the biggest hurdles when seeking treatment for Lyme Disease is the controversy surrounding it, in addition to the costs. Since the illness is widely misunderstood and stigmatized by doctors and family and friends, sufferers often have their concerns dismissed and struggle to be taken seriously. So, when Shambaugh found a way to help herself through her Lyme recovery journey, she made it available to others who share her struggle – especially her son, who was subsequently diagnosed with Lyme Disease.
The stress of dealing with a Lyme diagnosis was compounded when her son began his own battle. Whether her son contracted Lyme from a tick bite or through birth (via congenital Lyme) is unknown and impossible to determine. Fortunately, applying for grants proved to help her mitigate her overwhelming expenses. This motivated her to help others with grant resources. Organizations such as LymeTap and the Alex Hudson Lyme Foundation provided some assistance towards the mounting medical costs. As for her son, the Lyme Light Foundation and Lyme Aid 4 Kids helped Shambaugh navigate her child’s Lyme while she continues to address her own.
In addition, Shambaugh works with the Center for Lyme Action every year, speaking to senators and legislators about funding for more research and education around TBD. She stresses the importance of lesser-known TBD education, such as what repellants to use, how to perform tick checks, and the warning signs of a tick bite to help prevent future Lyme cases. She also works with a group of women, unofficially called “The Lyme Ladies,” to spread advocacy and help create policy change at the state and federal levels. Finally, Shambaugh uses her Instagram platform, @AshleyTheLymeSlayer, to speak out about issues on the controversial, invisible illness.
Ashley Shambaugh Continues to Share Her Story, Saving Lives
Today, Ashley Shambaugh continues to battle chronic, late-stage Lyme Disease. Fortunately, she has built a community of people who understand her struggles and relate to her experiences. This is a profoundly personal cause to Shambaugh, as grappling with health complications can be an incredibly isolating experience, damaging relationships with friends and family and even increasing the risk of suicidal ideation. However, Shambaugh wants those experiencing the same hardships to know that they are not alone and that there is hope and strength in numbers.
Shambaugh wants to thank those who have helped support her so far and those who listen, advocate for, and believe in those with tick-borne illnesses. Furthermore, she stresses the importance of prevention. Tick repellant while spending time outdoors, regular tick checks, and awareness of ticks and the associated dangers all could help stop the devastating disease before it starts. As for Shambaugh, she is managing her illness and co-infections and helping heal her community, herself, and her son through her advocacy, one day at a time.