“Approximately 476,000 people are diagnosed and treated for Lyme disease each year in the United States,” according to the Centers for Disease Control and Prevention (CDC). My Lyme Coach, a concierge-style chronic illness advisory service founded by Lyme survivor Samantha Sloves, has launched a structured First 30 Days Survival Guide to help newly diagnosed patients navigate the earliest and most destabilizing phase of illness with clarity, structure, and informed decision-making.
Did you know …
- “Lyme disease is an illness caused by the bacterium Borrelia burgdorferi. These bacteria are carried by the black-legged tick, also known as the deer tick.”
- “Surveillance data show that Lyme disease is reported most frequently among children ages five to nine and among older adults, with the adult peak shifting over time to approximately ages 55–60.”
- “In early Lyme disease, patients can present with a rash and/or flu-like symptoms. In later stages, symptoms can manifest in multiple body systems, including musculoskeletal, heart, brain, and nervous system.”
“When diagnosis is delayed, dismissed, or poorly coordinated, the infection can impact neurological, cardiac, and inflammatory systems,” says Samantha Sloves, founder of My Lyme Coach. “I live with permanent nerve damage because my early diagnosis was not taken seriously. The first 30 days are not about panic — they’re about reducing preventable long-term complications.”
Lyme disease is a marathon, not a sprint. Newly diagnosed patients don’t have to face it alone. My Lyme Coach recommends the following steps to help newly diagnosed patients navigate the first 30 days of illness.
Week 1 – Ground Your Emotions
My Lyme Coach advises newly diagnosed Lyme disease patients that it is normal to feel a myriad of emotions – anger, relief, grief, terror, numbness, often all at once. Give yourself permission to feel it, to fall apart.
It is completely normal after an appointment — especially when Lyme or another tick-borne illness is mentioned — to immediately begin searching for answers. Patients often dive into treatment options, symptom lists, timelines, doctors, specialty centers, and best- and worst-case scenarios.
One practical step is identifying a trusted person you can call when your thoughts begin to spiral. Grounded conversations can interrupt panic and help you shift from fear-driven decisions to calm, informed strategy.
Week 2 – Start Your Foundation
My Lyme Coach encourages newly diagnosed patients to seek a physician experienced in tick-borne illness — often referred to as a Lyme-literate medical doctor (LLMD) — or another provider familiar with ILADS-informed treatment approaches and the complexity of Lyme and potential co-infections.
Since there is no universal, one-size-fits-all treatment for Lyme disease, multiple therapeutic paths may be presented to patients. Options can include antibiotics, integrative approaches, herbal protocols, dietary changes, and lifestyle modifications.
Treatment plans are more likely to succeed when they match a patient’s values, lifestyle, energy capacity, and long-term goals. Medical appointments should have structure. Patients may consider:
- Identifying three disruptive or painful symptoms.
- Asking three pressing questions.
- Clarifying three areas of uncertainty (medications, side effects, timelines, or expectations).
Keeping a symptom log — whether in a notebook or on a smartphone — does not need to be complex. Tracking pain levels, fatigue, cognitive changes, sleep quality, new medications, supplements, environmental changes, and stressors can provide critical insight.
- If you have a tremor — film it.
- If you have a seizure — record it or ask someone present to document it.
- If you experience Bell’s palsy — take a photo.
Appointments are limited in time. Documentation allows patterns to emerge outside of the exam room.
- Patterns help identify MCAS flares.
- Patterns help detect POTS-related changes in heart rate or positional dizziness.
- Patterns reveal whether a treatment is helping, worsening symptoms, or triggering a Herxheimer reaction.
Recognizing patterns early allows for more informed, strategic conversations with providers.
Week 3 – Prepare Like The CEO Of Your Case
My Lyme Coach works with clients to create a concise, one-page medical summary outlining their most impactful symptoms in their own words. Before an appointment, patients are encouraged to clearly articulate their top five to ten symptoms and how they affect daily life.
Patients may consider asking the following:
- From your perspective, what are the most likely explanations for what I am experiencing?
- What tests would meaningfully change your assessment?
- What are my treatment options?
- What are the realistic expectations for each? How will we measure progress — and over what timeframe?
- How does this treatment plan align with my actual life?
Writing a one-page summary — even before an appointment is scheduled — can give newly diagnosed patients clarity and restore a sense of control during an otherwise destabilizing time.
Week 4 – Protect Your Energy
My Lyme Coach encourages her clients to protect their energy intentionally. In the early stages of illness, energy is not just physical — it is cognitive and emotional.
Use trusted, credible sources for research. Set boundaries around how much information you consume. Limiting research windows can prevent overwhelm and decision fatigue. It is okay to say no to one thing that will drain you physically and emotionally and to rest without feeling guilty.
- Energy depletion increases stress.
- Stress increases inflammation.
- Inflammation amplifies symptoms.
Energy is currency in chronic illness. Spend it with intention.
“My goal is simple,” says Sloves. “I don’t want another fourteen-year-old losing years of her life because Lyme wasn’t considered early enough. The first 30 days matter. Structure matters. Being believed matters.”
For more information about MyLymeCoach’s concierge services for newly diagnosed Lyme disease patients, visit the official website.
