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Beware: Tick time is here

May is Lyme Disease Awareness Month

It's that time of year again. Trees are blossoming, weather is warming, grasses are growing, and the Ixodes pacifica nymphs are questing for a blood meal. You won't even feel the bite as they most considerately inject an anesthetic first.

What's an Ixodes pacifica, you ask. It's a tiny deer tick. And ticks in our area carry Lyme and other tick-borne diseases.

I got Lyme disease hiking in Danville and you can, too. I also got Bartonella and a spotted fever rickettsia -- from the same tick.

Ticks can carry 20 or more diseases; some are protozoa and are treated differently, so one drug does not fit all. Would your doctor know this?

"But," you think, "that's so rare." Well, maybe. There are now 30-40 people who are connected to our newly formed Diablo Lyme support group. Those are the ones who have even heard of us and know they have Lyme. The number is probably 10 times higher or more, according to the Centers for Disease Control and Prevention.

"OK," you wonder, "but won't I see the tick if I get bitten? I'll pluck it off." Would you notice a sesame seed wedged behind your ear? Or in your arm pit or behind your knee on your back or in your hair? That's the size of an adult deer tick. The nymphs, even more voracious for your blood, are even smaller and burrow into creases of your body. I never noticed mine. It took me five years to figure it out.

The tick carries the bacteria and its nasty cohorts in its stomach. As soon as it starts exchanging blood back and forth, the danger exists. Could be right away.

"And anyway, we don't have Lyme in California." That's what the rheumatologist told me when I went in with joint pain, fatigue, brain fog, flu-like illness -- all that came and went. My eyes were going out of focus periodically, my neck was sore, I got nerve pain in my arms and legs, the soles of my feet hurt. I slept a lot yet never felt rested. Short attention span, trouble reading, tired by noon. And the symptoms come and go.

I was misdiagnosed more than once for several different things, which all turned out to be Lyme and its co-infections. I have friends who were eventually told they needed a psychiatrist. Lyme is the great imitator and can disguise itself as MS, Parkinson's, thyroid, lupus. Lyme is the most complex bacteria we know.

Dr. Neil Spector, a top Duke University School of Medicine oncologist, describes his experience with Lyme carditis that infected his heart. In his new book, "Gone in a Heartbeat," he writes that he had a heart transplant because no doctor recognized and, worse yet, no doctor would even consider Lyme disease until he found an ILADS (International Lyme and Associated Diseases Society) doctor on his own.

Why am I telling you this? Because I don't want you or your kids or your dogs or anybody else to get Lyme disease. It's here in this Valley, it's real, and it infects 10 times the number of AIDS patients, and two times the number of breast cancer patients.

Why don't we hear about it? First and foremost, it's not taught in medical school past a mention, if that. Your doctor, even if they recognize it, probably doesn't have a clue how to treat except for what the CDC recommends. The CDC is currently using old guidelines, based on the Infectious Disease Society of America's obsolete claims, which do not take into account the current research and studies that reveal its serious and chronic threat.

The National Guidelines Clearinghouse, part of the U.S. Department of Health and Human Services, has adopted newer guidelines on which physicians may rely for treatment. This is major progress, but the CDC is not on board yet for unknown reasons. There are a lot of politics involved, and money.

There is new evidence from a study published in March by Dr. Garth Ehrlich at Drexel University that some Alzheimer's disease is caused by "the body's inflammatory response to chronic infections."

Having just been diagnosed two weeks ago with Babesia (which finally showed up in my testing), and after conquering Bartonella, a spotted fever and Lyme, I urge you to educate yourselves and find a Lyme-literate physician if you have any suspicion you might have Lyme. Do not end up like many of us with recurring problems that come from misdiagnosis.

Be aware that ticks are picked up mostly from grasses so when you hike, stay on the path. Check your kids when you come home from the park. Shower after gardening. Deet repellent has not been effective, according to Lyme researcher Dr. Eva Sapi, University of New Haven, Connecticut. The repellents that do work on ticks, we cannot put on our bodies.

Dr. Bob Lane, who teaches and researches in the entomology department at UC Berkeley, tested public recreation areas in Alameda County. Incidence ranged from 0-24% in Ixodes pacificus (black-legged deer tick) nymphs. Some areas that he called hot spots were Sunol, the Oakland Hills and Sunol Regional Wilderness, which had an incidence of 15% in nymphs (most dangerous because they need a blood meal to survive) in spring and summer.

Use a very good tick repellent on your dog. If you have a tick, pull from the head, with tweezers if possible, directly out at a 90-degree angle from the skin. Watch for rashes -- any shaped rash can announce Lyme. Approximately 50% of people have no rash at all. Watch for flu-like illness, body aches and joint pain as initial signs.

If you see the tick feeding on you, freeze it and then, if you get symptoms, seek a lab to be tested for Lyme. IGeneX, a lab in Palo Alto, will test for more than one tick-borne disease.

Having Lyme disease in this country is expensive. Because of limited CDC guidelines, many insurance companies will not pay for Lyme doctors. If you suspect Lyme, insist on getting a Western Blot lab test from IGeneX. The ELISA test many doctors use is unreliable.

Many doctors also just don't know about Lyme, so you must be your own advocate. There is much information at ILADS.org, Lymedisease.org and lymediseaseassociation.org. Dr. Joseph Burrascano's "Advanced Topics in Lyme Disease" has a list of symptoms.

Every time I write about Lyme disease, I get many new people who recognize the symptoms who contact me.

Last month I found an adult deer tick that was walking on my sleeve when I was in my yard in Alamo. I froze it and sent it to a new program at Northern Arizona University that is testing from all over to get an idea of the range of tick-borne diseases. That tick did not have Lyme or the other diseases for which it was tested.

When I contracted Lyme disease and the other ailments, I'm pretty sure it was from a tick when I was hiking in Las Trampas on the west side of Danville.

Timely treatment can avoid years of suffering. As we hear more about Lyme disease, we realize it is the greatest, most virulent vector-borne disease in the U.S. -- and it's right in your own backyard.

Editor's note: Sue Savod, who lives in Alamo, is founder of the Diablo Lyme support group. Contact her at suesavod@gmail.com.

Comments

11 people like this
Posted by Gate
a resident of Danville
on May 16, 2016 at 8:39 am

Thank you for this informative article.


7 people like this
Posted by Tania Hanson-De Young
a resident of Alamo
on May 16, 2016 at 5:33 pm

Great article Sue, thank you. Our daughter has Lyme and Babesia, contracted when she was 7 here in Danville (probably in our backyard). She was misdiagnosed for years until she could barely get out of bed when she was 18.

For tick testing, go to Web Link Bay Area Lyme Foundation does the testing for free as part of their research. There are instructions online on how to preserve the tick and send it in, preferably within 72 hours. This can save you years of heartache and tens, if not hundreds, of thousands of dollars.

I still hike the hills but spray my dog and my legs with a white vinegar, water, and almond oil solution that repels ticks.


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