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Doctors miss Lyme disease diagnosis

by Kathleen O'Rourke

Ten years ago, I had what would become a critically important conversation with an older woman, also a former trail runner. She had previously been stricken with a mysterious illness that no doctor could define.

Two years later and a whole lot sicker, she finally got the diagnosis: Lyme disease. The kicker was that she knew it was Lyme disease way before she could get a doctor to agree with her. They were adamant that Lyme wasn't in California.

Ten years later, most of us know that Lyme disease is here, and 2008 will always be, for me, the year my family met Lyme.

It started with Ribbon. The kids were thrilled with the new puppy. But, every return to our kitchen from outside revealed she was a tick magnet. It wasn't long before I pulled a tick off my son, Louis. The tick seemed barely attached, and I was sure it had been on him less than an hour.

Within the next two days, he had a very red bar-shaped rash. It wasn't a ring or target rash, so I knew we didn't need to worry about Lyme disease.

Wrong — absolutely wrong! The target rash is rare; less than 10 percent of Lyme patients have had one. If you have one, you have Lyme. But, if you don't have one, the jury is still out.

By February 2008, Louis started complaining of exhaustion. Other symptoms followed — aching legs, and feet "heavy like lead." The pediatrician set about trying to figure out what could be wrong.

I asked about Lyme; after all, there was a known tick bite. He said confidently, "It can't be Lyme. The tick wasn't on for 24 hours and he didn't have the target rash." Again, this is wrong. Infection can take place after 15 minutes. But that night, I was relieved.

The next morning, I knew it was Lyme. Joint pain had been added to Louis' list of complaints. The doctor refused to pursue Lyme disease. He was adamant. I remembered the Lyme conversation 10 years ago and knew that it had been a gift. Similarly to the trail runner, here I was faced with a doctor who was sure of his facts.

The problem was that he ignored other facts, such as a known tick bite and Louis' clinical assessment. His symptoms were in alignment with Lyme, a neuropathic ailment. It turns out that feet "heavy like lead" is a beautiful description of a neuropathy.

There is more to this story. Louis became a very ill little boy. One year later, he is finally able to do well at school while still being treated. It has been a huge struggle.

But, there is another gift in this story. This fall, I was diagnosed with Lyme disease. Turns out the last four years of dizziness, vertigo, asthma, vision problems, fatigue, heart palpitations, sleeplessness, cognitive deficits, stabbing pains and even the plantar fasciitis really aren't normal parts of aging, at least not at 43. I am sick.

Without Louis' acute presentation, I would never have discovered my own Lyme disease. I would have just slipped away. A conversation with a trail runner essentially saved us.

To extend this Lyme conversation to as many people as possible in our community, there will be a "Lyme Disease Awareness Night" at 7 p.m. Wednesday, March 4, at Ladera Community Church. Three Lyme-literate and wonderful doctors are coming to talk about this emerging disease. They are: Dr. Christine Green, Dr. Deborah Metzger and Dr. Nick Harris (founder of Igenex).

Come and learn. You may save yourself or someone you love a great deal of suffering by simply learning basics of prevention, diagnosis and treatment.

INFORMATION

"Lyme Disease Awareness Night" begins at 7 p.m. Wednesday, March 4, at Ladera Community Church, 3300 Alpine Road in Portola Valley. For more information, e-mail kmorourke@earthlink.net.

About the author

Kathleen O'Rourke is a Woodside resident who has organized a Lyme disease awareness event, set for March 4.

Posted by C, a resident of the Woodside: other neighborhood, on Feb 26, 2009 at 9:43 am

Many Old La Honda Road resident's in Woodside have Lyme disease at various stages. Please attend the "Lyme Disease Awareness Night" 7 pm Wed March 4th at Ladera Community Church.

Posted by Ticked off, a resident of the Atherton: West of Alameda neighborhood, on Feb 26, 2009 at 5:44 pm

A couple of years ago, my 30-something cousin was diagnosed with MS. More than a year later, she was in a wheelchair, unable to work, struggling to care for her children, when she discovered that she had misdiagnosed Lyme disease, not MS.

She's out of the wheelchair and doing much better now, but she couldn't convince her insurance company to authorize treatment for Lyme disease -- she had to pay for it herself, and even after treatments proved successful, the insurance company still denied that she had Lyme disease!

Posted by Otis Woods Family, a resident of the Woodside: Woodside Glens neighborhood, on Feb 28, 2009 at 9:00 am

We appreciate the communication and the meeting -- a much needed event--and will be sure to share these details with all friends and loved ones as well as our dental patients.

Regarding the comment about the insurance co. not cooperating--- with the re-vamping of how insurances will be required to perform, our hopes will be to have science and the health of our citizens at the top of the order for our New Administration in Washington. From preventative medicine to treatments for such illnesses as this.

Posted by Kris Newby, a resident of another community, on Mar 23, 2009 at 4:14 pm

There is a Lyme great support group that meets once a month at El Camino Hospital in Mountain View.

Kris Newby

Posted by Robin1237, a resident of another community, on Mar 23, 2009 at 11:08 pm

I'd like to know how much signage is up anywhere warning folks about the outdoor tick problem and what to do for protection. Perhaps this is an project that communities could work on together.

Here are some starter ideas:

CAUTION: ticks have been found in this area! They can transmit Lyme disease and coinfections, which can cause disabling neurological and soft tissue symptoms.

The public is encouraged to wear light-colored clothes to more easily see any small dark ticks. You should also wear shoes and socks, long pants tucked into socks, long-sleeve shirt tucked into your pants, a hat, and tick repellent.

Please stay in the middle of the path and do not touch vegetation unless you have tick repellent on. Your indoor/outdoor pets will also need tick repellent on. Do frequent tick checks on yourself, each other and your pets.

If you find any ticks on you or your pets, do not touch them with your bare hands! Use tweezers or a tick remover tool or go to a medical facility for immediate removal. You can save a live tick in a vial with a moist tissue and send it to the Sonoma County Public Health Dept for testing.

If you see an expanding bull's eye rash on you, that means Lyme disease for sure and you will need antibiotic treatment immediately. Other initial symptoms can include flu-like symptoms, numbness, or none at all. If you have a known embedded tick bite, it is suggested to get 6-8 weeks of a sufficient level of antibiotic treatment to knock out a possible infection. Signs of coinfections (babesia, bartonella and ehrlichia) can include fevers, chils and night sweats. They will need treatment too.

For further info/medical referrals/supportgroups, see www.lymedisease.org, www.lymediseaseassociation.org, www.lymenet.org, www.ILADS.org(doctors), www.IGeneX.org(testing lab; IgM and IgG Western blots recommended for Lyme testing), (maybe a neighborhood contact)

PS A tick repellent I like is TKO Orange, a nontoxic, essential oil from oranges (TKOOrange.com). You can put a couple drops in a spray bottle, fill it up with water and spray on your clothing. It can also be lightly misted on dogs and cats, it can be sprayed in the home and in the yard. It is a bug deterrent/killer. It's biodegradable and so would need to be applied frequently, probably at least every 24 hours. Ok to use as long as not allergic to citrus.

My email is sf_seal@sbcglobal.net if anyone wishes to contact me to discuss ideas for public protection/notification.