A brief, flu-like illness in the summer of 2010 did not alarm or concern the patient with whom I spoke. She did not think much of it, and after seeming to recover, she continued on with her life. However, by the following year, it was clear that something was not right. The overwhelming fatigue, brain fog, issues with sleep and mental health spurred her to discover an answer.
The Road to a Diagnosis
Her symptoms had taken over her life. She would get in the car and forget where she was going. Remembering the name of a coworker of five years was impossible. She had to cut back to working just three days a week, spending the rest of her time sprawled on the couch, unable to shop for groceries or perform daily tasks. She needed to find healing.
Unfortunately, that search would take about two years and consultations with more than 10 different doctors. She dealt with doctors who dismissed her symptoms and others who could only treat her symptoms without understanding the cause. Finally, an integrative practitioner, suspecting she had Lyme disease, suggested she get tested. Her test came back positive.
Chronic Lyme: Recovery and Healing
Finding the diagnosis was just the beginning, she would discover. The practitioner who tested her for Lyme did not know how to treat it. So, after getting another test for Lyme from a different doctor, she began treatment. Neither this doctor nor the treatment was leading to recovery, so she changed providers.
Although she had to drive over 100 miles to see the new provider, she could feel the treatment take effect and after about 3 weeks of treatment, she felt she was back to 50 percent. For the first time in two years, “my life was headed upward.” Her treatment involved 4 different antibiotics, a range of herbs, probiotics, anti-fungals, a careful exercise plan, and a specialized diet. It took two years on this plan to progress to feeling 70 percent better.
Healthcare and Chronic Lyme Disease
As she reflected on her journey, she commented that her story is not uncommon. Finding “Lyme-literate” doctors challenges many patients with Lyme disease. “Almost nobody who takes insurance is Lyme-literate.” They don’t know how to diagnose or treat the disease. “You have to find someone who has devoted their practice to Lyme.”
Most, like her, end up paying thousands of dollars just to get diagnosed. She had to pay over a thousand dollars just to get tested. Now, she says she pays more on treatment plan than on her mortgage. Between supplements, doctor appointments, physical therapy, and missed work, the costs can be overwhelming.
She did not know she had Lyme disease until it had progressed to Chronic/Persistent Lyme disease. At least 40 percent of patients find themselves in a similar situation. They do not know they have Lyme until they are really sick. Fighting back to health from Chronic/Persistent Lyme disease is a long journey. “It’s really hard to get past 70 percent or 80 percent, to get all of your symptoms taken care of.” For this patient, she still lives with symptoms and repercussions of the infection. She compares it to other chronic diseases, like heart disease or diabetes. It affects her life, and it is “the major challenge” in her life, but she has a regular life again.
Advice for and Reflections on Chronic Lyme Disease
“I wish I had known a lot more about prevention and how serious a tick bite can be if you don’t catch it right away,” she said when asked to give advice and perspective on Lyme. She also stressed how difficult it is to find treatment. “You have to be really, really persistent in advocating for yourself and trusting yourself.” She looked until she found answers, she researched and educated herself on Lyme, and she switched practitioners when one was not working. She is hopeful that it is becoming easier to find care for Lyme disease and that others will not face the long path to treatment that she underwent.
References
Access to Care in Lyme Disease: Clinician Barriers to Providing Care
Recent Progress in Lyme Disease and Remaining Challenges
Controversies in Persistent (Chronic) Lyme Disease
Superior Efficacy of Combination Antibiotic Therapy Versus Monotherapy in a Mouse Model of Lyme Disease
Related
Credit : Source Post
