Twenty years ago this month, a tick bit my ankle. Five years later while in charge of a worldwide group at a Fortune 100 company, I became disabled with mysterious symptoms -- cognitive dysfunction, nausea, headaches, joint pain, and excessive sleepiness. Eighteen years after the bite and thirteen years after becoming disabled, I was finally diagnosed with late disseminated Lyme Disease.
Since my diagnosis, I've spent about $2,000 per month on treatment. Since 1996, I've spent upwards of a quarter million dollars trying to regain my health. Yet, I'm still unable to work full time due to central nervous system involvement.
The toll this disease has taken on my life is unfathomable. If I'd only known what to do when I saw my raised pink rash, I imagine I'd still be on my career trajectory, which I thought would include running a major high tech company in Silicon Valley. I mourn the loss of my career to this day.
A few times a year, a friend will call to report a tick embedded in his or her skin. I tell them to get to a Lyme literate doctor. Most go into denial. They recite the myths to me: "It was only attached for an hour," "It was brown," or "There is no Lyme in this state." Or, they make things worse: "I killed it then I took it off." In Lyme, denial is not your friend.
Though I still don't consider myself a Lyme expert, I wish I'd known what to do for a tick bite:
- Perform tick checks after hiking, gardening or doing other outdoor activities. When doing tick checks on the body, include places "the sun don't shine" like the crotch, armpits, and belly button. Hair is a great place for ticks to hide, and a difficult place to see them.
- Do not squeeze an embedded tick, as that injects the potentially infectious contents of the tick's stomach into you. Pull it out by the head with tweezers.
- Save the tick in a baggie. Have it tested by your local vector control ($25-50) and/or by IgeneX Lab ($65). Though not foolproof, this is the least expensive and best way to know if your tick carried diseases that could make you sick. A tick can be ground-up and tested, but once you are infected, the evidence leaves your bloodstream rapidly and we can't put you through a meat grinder to find conclusive evidence of Lyme Disease.
- Call a Lyme-literate medical doctor (LLMD) and make an appointment. Many have immediate openings for those with a potential new infection. Your LLMD will help you weigh the cost-benefit of prophylactic antibiotics. Geography, how long the tick was attached, the season, and the tick's life stage are factors in determining your protocol for testing, treatment, and re-testing.
- Do not rely on Urgent Care, your local doctor, or an infectious diseases specialist to treat you. In a third of cases, the current treatment guidelines lead to undertreatment - and chronic illness.
- Though Lyme is associated classically with a bull's eye rash, only half of those infected report one. Much of the time, it resembles the Target logo - a bull's eye - but any large pink welt can also be a Lyme rash. The rash does not occur immediately.
- At first, untreated Lyme can lead to a "summer flu," joint aches, or headache.
- A third of patients who get the standard treatment - a couple weeks of antibiotics - will relapse and become chronic. Lyme-literate physicians will prescribe 4 - 6 weeks of antibiotics for a new infection, greatly reducing the chances of treatment failure.
- If Lyme is not fully treated while it is still accessible to antibiotics (in the bloodstream), the Lyme spirochete - a spiral-shaped bacteria - will drill into your joints, organs, and central nervous system. It will begin to disable your immune system.
- When the spirochetes are no longer in your bloodstream, testing becomes unreliable, but you will become wildly symptomatic.
- Seemingly unrelated symptoms, from joint pain to digestive issues to headaches to exhaustion, will become your daily norm. That the symptoms seem to play tag team will make it maddening for you and easy for a physician to diagnose you with hypochondria.
- Longer term, you will have severe cognitive issues, neurological issues, and possibly suffer heart problems.
- You will be tested for every known disease, be declared perfectly healthy, and join the hundreds of thousands of new annual chronic Lyme Disease victims.
- As a rule, every year you go untreated, you need three months of treatment.
- If you are "lucky" to get a chronic Lyme diagnosis, insurance applies a double standard. They will pay for a month of antibiotics then deny you could still have Lyme after that. However, in the face of failed treatment, if you ever find yourself uninsured you will be denied insurance due to your pre-existing condition.
- After the first month, 100% of costs of treating Lyme - medication and supplements - are typically paid out of pocket.