You wake up one morning and your eyesight has changed — you can’t read the paper as usual and colors fade in and out. Over several weeks this happens on and off but it’s always worse with each new occurrence. A couple of times you have short visions that are like an LSD trip. None of the ophthalmologists can find a cause or treatment. By now you have begun tossing the ball for your serve in tennis and it is going all over the place — you have no control. Over time your game deteriorates. After over 30 years playing your favorite game, tennis can no longer be a part of your life. You find yourself on a wonderful trip in a foreign country. While climbing up a steep hill you keep collapsing — total loss of control. Coming back down the same thing happens. Once on flat ground, walking through a potato patch, you are tired but walking without help, under control and with good balance. What changed?
Now you are unable to walk a straight line, unable to work in the woods or climb trees to cut limbs, your other favorite activity. Over time trying a new restaurant, taking in a movie, a museum, or just walking throughout Oakland doesn’t work due to the possibility of spasms of your extremities and falls. Oh the falls… Once down, people reach out to help but it only makes it worse. Why does your body react with more spasms when people only want to help? You can no longer take BART. You are becoming more isolated and inactive. You feel like something is gradually moving up one arm, across the chest, and down the other arm. What is it? When you wake up in the morning you never know how you’ll feel or what you’ll be able to do — butter your toast, pour your tea, tie your shoes, or walk your three miles. You now have feelings of anxiety all of the time, yet you have never been an anxious person. Most of all you have fear — fear this will progress until you are bedridden, unable to do anything but be aware of this horrible situation.
So far all of the various doctors have not found a diagnosis, but they try pills that have no affect. Finally after four years you have a positive test for Lyme Disease. Treatment begins. Two years later you are still in treatment but improved. You now know you have three tick borne diseases not just one to treat. How long is the tunnel of treatment to recovery? If you’re lucky, another year or two. Sometimes that tunnel looks so long the light at the end is very dim. You remind yourself that it only took four years for a diagnosis while some people take ten years or more. You remind yourself these diseases are treatable.
Welcome to the world of tick-borne diseases.
The Centers For Disease Control record 20-30,000 new cases of tick-borne diseases yearly. Yet they suspect the number is probably 100 times that — 200-300,000.
The majority of us living in the Anderson Valley are aware we have ticks everywhere in the Valley — lots of them. But how many of us know a single tick can carry Lyme Disease (Borrelia burgdorferi) plus co-infections — babsiosis, bartonellosis, and ehrlichiosis ? Most importantly how many of us know how many residents are infected — past, present, or recurring? The last question has no known answer. However, with more and more talk of Lyme and other tick-borne diseases, the number we are aware of grows.
Lyme and other tick-borne diseases can be either acute or chronic. The acute form is simple to treat if an individual finds the tick, has the bull’s-eye or flu-like symptoms, a few days following the bite. Then it is a simple matter of the individual immediately seeking treatment from a Lyme literate MD. Antibiotics are the only standard of treatment when it comes to acute Lyme.
Fifty percent of infected individuals never know they had a tick bite. Months or years later, other symptoms begin to manifest. The symptoms for tick-borne diseases vary greatly among individuals. Effective treatment differs. There is no one standard of treatment for chronic tick-borne diseases. Even doctors don’t agree on the existence of chronic tick-borne diseases. But infected individuals and physicians who successfully treat chronic tick-borne diseases, know they exist. Symptoms may be: joint pains, cardiac problems, fatigue, vision changes, sudden roving aches and pains, memory issues, tremors, loss of balance, loss of mobility, headaches, neurological disorders, and many more. Most individuals spend years going from doctor to doctor, clinic to clinic receiving many different diagnoses and ineffective treatments. In the meantime the disease continues to debilitate the individual leading to treatment that takes longer to be effective. Finding a Lyme literate MD is the first step in beginning effective treatment.
Many in this Valley have or are going through a horrible experience similar to the one at the beginning of this article. In this day and age this is unacceptable. To provide effective diagnosis and treatment in Anderson Valley in a timely manner, the Health Center and the AV Lyme Resource Advocates are taking the following actions:
1. Seeking a $25,000 grant to conduct a pilot project at the AV Health Center as a first step in our Health Center becoming a center for diagnosing and treating tick-borne diseases. The proposal includes the hiring of a registered nurse, case manager to educate the public, provide appropriate resources and referrals for individuals, follow tick-borne diseased individuals, and lead a support group. The proposal calls for a Tick-Borne Disease literate MD once a month at the clinic. All of this would be done with the assistance of volunteers as and if needed.
2. In the meantime the AV Resource Advocates Group will continue to: a. Provide education for Valley residents in English and Spanish, b. Be a resource center. Please feel free to call: Sue Davies at 895-2511, or Maureen Bowman at 621-2280; c. Survey valley residents to determine the number of individuals with tick-borne diseases — past, present, and recurring; d. Educate AV residents and keep them up to date on the group’s activities through: Articles in the Anderson Valley Advertiser (Next article: What do you do when you find a tick embedded in you?); d. continue and expand the group’s email list. Join by sending a request to: firstname.lastname@example.org. Please note the period and number one in the email address; e. Have regular monthly meetings open to everyone. Last Tuesday of every month in the conference room at the AV Health Center at 5:30pm.
Sometimes with all of this talk about individuals with tick-borne diseases we get discouraged and fearful of getting infected. This is true especially since individuals may have a negative Lyme test but still have Lyme Disease. However, one Valley resident was told by a MD he had Lyme. After a visit to the Lyme literate MD another diagnosis was made, and treated successfully. He did not have Lyme — a bright spot for all of us!