When Lyme disease becomes a nightmare | May 2, 2012 | Almanac | Almanac Online |



News - May 2, 2012

When Lyme disease becomes a nightmare

Locals tell of years of elusive diagnoses and painful symptoms

by Kate Daly

Sherry Cagan of Portola Valley says she nearly died when she ended up in the emergency room with the systemic MRSA staph infection last year.

After seeing "maybe 50 doctors" for a long list of symptoms that included hip pain, arm pain, numbness in the foot, fatigue, sleeplessness, brain fog, and decreased lung capacity, she finally received a diagnosis that had eluded her for seven years: Lyme disease.

Kathleen O'Rourke of Woodside has her own story of living with Lyme disease for seven years. Her symptoms have ranged from vertigo to dizziness, irritability, blurry vision, apnea, heart palpitations, joint pain, neuropathy in her feet, and tinnitus.

Their friend, Bonnie Crater, doesn't have Lyme, but says she grew alarmed when yet another mother in their circle, Laure Kastanis of Portola Valley, "was pretty sick" with the disease.

Last fall Ms. Crater and a mutual friend, Gayle Collat, started meeting monthly with the three Lyme patients "to try to understand the disease better."

They have gone on to found the Bay Area Lyme Fund (BayAreaLyme.org) to help finance research and innovative therapies. They either serve on or advise the board along with Ms. Cagan's husband, Laird, Wendy Adams, Stephen Marra and Kate Misskelley.

Their new office is at 888 Portola Road, Suite A7, in Portola Valley.

This is the time of year when the risk of getting infected is higher because ticks are more active when it's cool and damp. Dr. Raphael Stricker, a Lyme expert in San Francisco who says he treats 2,000 patients from all over the Bay Area and beyond, predicts "it's going to be a bad year" here due to the late rain.

Dr. Stricker's patients come from as far away as Australia and Europe. He says he thinks the number of Lyme cases is steadily increasing worldwide because animals are spreading the disease where it wasn't before, and people are encroaching upon the animals' territory.

Lyme is caused by the bacteria Borrelia burgdorferi, which in California is transmitted by infected Western black-legged ticks that feed on gray squirrels, mice, dusky-footed woodrats, birds, lizards, deer, and sometimes humans.

In many cases, tick bites can go undetected, because in the nymph state, ticks are as small as a poppy seed and hard to see. One telltale sign of Lyme is a bull's-eye rash developing soon after a bite, but that only happens maybe 30 percent of the time, Dr. Stricker says.

Another early sign is flu-like symptoms. If caught within weeks of infection, the disease can be treated with antibiotics. A delay in treatment could lead to a more complicated form of chronic Lyme and even death, he says.

According to the San Mateo County Health System, 3 to 5 percent of black-legged tick nymphs and adults test positive for the bacteria in the county, yet no cases have been reported of humans' contracting Lyme in the county in 2010, 2011, or in 2012 to date.

Dr. Stricker says San Mateo County is "typical of most counties in the state" where the numbers reflect an "under representation." He estimates nine out of 10 cases of Lyme don't meet the criteria set by the Centers for Disease Control and Prevention, and are therefore "thrown out" rather than reported.

The CDC tracks Lyme in all 50 states and reported 126 confirmed cases and three probable cases in California in 2011. CDC's website describes Lyme as "the most commonly reported vector-borne illness in the United States."

Ms. Cagan said she thinks thousands of people may be suffering from Lyme in the Bay Area. Many may be like her and not know whether they have Lyme because the disease can take months to manifest and tends to mimic other illnesses such as Bells palsy, chronic fatigue syndrome and fibromyalgia.

Diagnosis can be tricky due to the nature of the disease. The bacteria enter the blood and burrow into tissue, attacking different parts of the body at different times, undermining the immune system, and inviting other opportunistic health issues to arise.

There are several Lyme tests available, but none is considered 100 percent reliable, Dr. Stricker says.

In Ms. Cagan's case, she remembers working outside on the family's property back in 2005 and a day or so later, finding a tiny tick embedded in her neck. Weeks later she landed in bed for 10 days with severe flu-like symptoms.

She then developed pains and other problems that led her to consult dozens of doctors. "Before I was diagnosed with Lyme, I was told I had everything from MS to cancer," and that she needed surgery, she says.

Initially, she took oral antibiotics. After a relapse, she ended up on an IV. Since October she has been hooked up to it for five to six hours a day.

She just recently started feeling better, she says, but still relies heavily on her husband to help care for their children. She calls him her "rock."

Now in her 50s, Ms. Cagan wants to put this "personal nightmare and family nightmare" behind her. "I pray to get my life back."

In Ms. O'Rourke's case, she doesn't recall being bitten by a tick in 2005, but remembers doing a lot of gardening at their home in the Woodside Glens, where the front yard was "a regular thoroughfare of deer."

She was in her 30s, yet felt sick, tired, achy, irritable, and tingly, "like my skin was going to explode."

She tested positive for Lyme as well as two other tick-borne diseases, babesiosis and ehrlichiosis. After three years of treatment she says, "things are so much better than they were."

Her son, Louis Sheridan, developed his own symptoms at age 9, soon after the family moved near Skyline Boulevard several years ago.

"He had a tick on his tummy that the dog brought in," Ms. O'Rourke says.

He was complaining that his feet felt like lead bricks. Doctors checked him for apnea and adenoid problems, and eventually diagnosed him with Lyme. After one and a half years of taking antibiotics, "he is completely great," she says.

After the family's move, his little sister, Hannah, complained of ocular migraines, and she missed six weeks of school. She has shown sensitivity to black mold, but tested negative for Lyme.

Based on her family and friends' experiences, Ms. O'Rourke is concerned about the prevalence of Lyme in the area. "I worry about all the gardeners and stable hands who have no idea they're coming in contact with it."

Steve Gray lives down the hill in Woodside, but traces his Lyme infection to Half Moon Bay. Seven years ago his dogs came back from a walk there and must have picked up some "hitchhikers" because several days later he found a tick hiding in his belly button. Two days later he was hospitalized with anaphylactic shock for a suspected food allergy that hasn't troubled him since.

Months went by and he started feeling tired and developed a limp. He had three blood tests done, but it wasn't until IGeneX Inc., a medical laboratory in Palo Alto, tested him that he was diagnosed with Lyme in 2008. He also tested positive for the co-infection, babesiois.

"I've been feeling like I have MS, ALS, muscle spasms, and jerks," Mr. Gray says.

He has turned to several infectious disease specialists including Dr. Steven Harris in Redwood City, who, he says, favors antibiotics and alternative approaches such as dietary changes.

In his 60s, Mr. Gray keeps physically fit, drinks quinine and filtered water, and now follows a diet free of gluten, sugar, dairy and red meat. Despite all the clean living, he says, his health care costs have gone up to over $800 a month since his diagnosis.

Funding research

The Bay Area Lyme Fund is hoping to provide people like Mr. Gray with help down the line. The group is funding research at Stanford to design a transdermal patch that could potentially kill off the bacteria.

Another resource for Lyme patients is the Mid Peninsula Lyme Disease Support Group. Facilitator Scott Forsgren says 15 to 20 people usually attend on the second Tuesday of every month from 6:30 to 8:30 p.m. in Room E at El Camino Hospital in Mountain View.

Ms. Cagan went to one meeting and says after seeing people shaking in wheel chairs, and hearing stories about losing homes to pay for treatments, "I got in my car and I bawled."

She says some drugs can cost $10,000 a month, and aren't approved by insurance companies because the generally accepted protocol for treating Lyme is a short course of antibiotics. Her personal saga makes her determined to help spread the word about Lyme prevention.

Lymedisease.org encourages people to avoid going where ticks like to hang out, in leaf-littered places, tall grasses, stumps and trunks. To prevent tick bites, the advice is to wear light-colored long sleeved shirts and pants that are tucked in and treated with pesticides.

As an alternative, Theresa Brown of Woodside swears by the lightweight finely meshed insect protection clothing she bought online: a hooded sweatshirt and pants made by Bug Out.

Frequent body checks are suggested in tick country. If a tick is attached the best way to remove it is to pull straight back with tweezers. Disinfect the bite area, and keep the tick in a moist plastic bag to send to a tick-testing lab as soon as possible. The county offers that service.


• The Bay Area Lyme Fund is funding a Stanford study of ticks found in Woodside and Portola Valley. Volunteers are needed to collect ticks on May 5 so they can be tested for infections. To sign up contact bonnie@bayarealyme.org or call (650) 530-2439.

• The group is sponsoring a fundraiser featuring polo, kids' games and pony rides at a luncheon and auction on May 27 at Menlo Circus Club in Atherton.


Posted by sarah, a resident of another community
on Jun 5, 2012 at 8:51 am

this lyme disease story (when lyme disease becomes a nightmare)is so touching!

i suffer from lyme as well, i am 20 and got disabled by lyme.
i hope that one day lyme disease will be acknowledged as disease and properly treated.

thanks and blessings.

Posted by Carol Crane, a resident of another community
on Aug 30, 2013 at 10:13 pm

I hve almost same story, saw doctors in Los Angelo, Holtorf medical Group.Thought it was mold and sold my home in Tahoe thinking I had mold . I was always sick there, came down with numbess, fever and could not move legs. Ended drinking to move and so far have 18 years of sobriety. Went into to study ortho for spine since my back was mess up. Doctors assume it was my back,Been threw ten surgerys, sold my home and finiance died unexplained in Tahoe. When I went to Physical Therapy Assistant School the teacher saw me on my baack to et threw class and they postpone surgery till after school. She said I could never do it. I did and so grateful. This disease as made me more compassionate and helpful

I hd so many spinal shots the third one cause so much pain and my back was on fire . Went to school and miss sking I did acpunture. My teacher said should drop out. I finish. If diagnose with lyme, I believe I would have never had back surery the third shot threw my spine into hypermobile and discs were mosing. Dodtor made mistake and had to fix surgery..If propery diagnose I would have never had this awful things happen in medical field.
Cme off antibiotic and predisone for sinus infection and felt like screw driver was going threw brain and head titled back. Went in to ask for DNR , doctor put me on muscles relaxers and klopin and I put myself on weeks of Zithromax, I got threw it. The doctors said brain tumor, MS or tape worm. MRI show nothing. I knew that nasty lyme was still there. Palo alto group threw me out.
I took cipro and knee froze up and took doctors 6 weeks for MRI saving in my head. Show torn meniscus with bad tear where joint locking, recently had surgery and left reactive arthritits . I use to dance and try I miss it so much. On antitbotics still and that has help.

That is why I want to use dance, it saved me and wanting to go on with this nasty disease. I beautiful dancer but too fatigue now. Hoping to raise awareness and have medical license, and medical professionals willing to help volunteer

I fight to work, sometimes throwing up and headaches. My work was close, now praying for something close by.
So went down to be treated for mold and found out it was lyme, all the co-infections. Ran out of money to do oral. Ended up emergency so many times from thyroid storm to unbelievable pain and fatigue. I know it affects our system, thyroid, adrenals, thick blood requiring heparin and we feel better.
Want to do awareness at Cheryl Burke Studio for education and awareness. I have some medical therapists and nurses wiling to help promote this. I am in fifth month of Zithromax and having hard time. Had knee surery that never got better. Mri show reactive arthrititis and western doctors refuse to treat with antibotics. Dr. Metzger started me on it and swelling went down. Everything in body auto-immune, Epstein barr to babesia, bartnella enrichal etc.

I want to try to promote dance awareness welling tickets where when you buy ticket you have to educated and pass brochure on. Want to bring lyme patients, some in wheel chairs so everyone gets to dance no mateer what . We are going to shine for one night and educate people and praying medical community listens. See patients going misdiagnose.
I can barely get out of bed, my thyroid is very hyper so crashing and trying to work. Some days I am in tears and going to AA meetings. 18 years off alchol use to help with back pain and numbess, could not move legs
Tired and will clean this up, thankyou. There is a group and I have beenreally educating people and therpists. doctors do not want to listen but therapist and nurses. do
Thankyou so much for being out there finally
Please call I want to help and maybe I can get help with this dance awareness thankyou

Posted by Carol, a resident of Menlo Park: other
on Sep 1, 2013 at 8:29 am

Hi, wrote the other ay but never realize do to fatigue it was going on line. Wanted to clean up spelling, pretty fatigue but glad to see Association, first step for help
What I wanted to say , is why is the medical system allowing this. We all same story at least thirty doctors. Only wealthy population can get treatment which requires IV antibotics.
This disease is affecting a large portion of people and see it, MS populations where patient lived back east, where families are affected. See patients suffering from this and doctors are looking the other way. Why, Insurance is not helping us unless it is expensive insurance. By the time wwe get diagnose forty thousand dollars later we can not afford treatment. It is sad. Our country would rather treat HIV or hep c but why are we ignore.
This disease affects joints, blood coguation defect, arthritits of all kinds, cognitive abilities, auto-immune. Lets get help to treat problem and make treatment available to all. It would cost system less in long run.
All lyme patients do not know what is happening at first, fatigue and pain starts not to mention headaches.The doctor sys it is in your head and take something which makes us worse. It is on the raise and medical community is looking the other way. Unless you have money to see lyme doctors, or have good insurance, most of us are not cover What is up with that?
Been thrown out of doctors offices asking for iv antibotics. A doctor takes an oath to help not hurt. So hoping to educated and teach at a dance studio where my dancing has been affected.
Lets get help to everyone and glad you started this
People with diagnose MS, ALS and parkinson's should get ignex test run. Why doctors ignoring this? We are on our own and some of us ordering antibotic's threw internet. Why do doctors throw us out or say disease to complicated to treat.

Posted by anne, a resident of another community
on Sep 1, 2013 at 2:47 pm

My friend has been affected and she went from this happy go lucky person and a skier, too we do not see each other anymore. She never feels good. I do not understand this disease but it seems to ruin people. One hears about it but never figure it hits close to home. Believe we have problem here in the Bay Area. Please lets get help for this and funding for people that are affected.

Posted by Cindy, a resident of Menlo Park: Allied Arts/Stanford Park
on Sep 1, 2013 at 2:54 pm

HI everyone; FEW of us are getting together to write. We want answers to why people have to see thirty doctors. This disease did not hit me, but affected a family member and same story. Why is government not helping, why are they not checking blood banks, My friend got sick after blood transfusion. Weird cycts in glands to bleeding disorder. Right after that blood transfusion, she was never the same. Healthy before. It is our responsibility to help and not by pass people like we did with aids. This thing is bigger then aids.
Prayers and Blessing

Posted by mayra, a resident of Atherton: West of Alameda
on Apr 1, 2014 at 12:34 am

i know who she is! very kind person.