Harvey: Lyme disease is unrecognized but real

Posted by Andrea Harvey on Tuesday, Nov. 26 at 2:00 pm.

Too many Lyme disease patients are not receiving timely and affordable treatment due to the Infectious Diseases Society of America’s strict guidelines. “Everybody should have the right to be a healthy person, but I don’t get that right,” University of Oregon junior Sofia Webster said.

Sofia was 14 when she was bitten by a tick while camping with her Girl Scout troop in California. After it was removed, however, she forgot about it. Months later, she was experiencing chronic fatigue and pain in her feet, muscles, head and joints. She began using a wheelchair.

Four years, twelve doctors and several different misdiagnoses later, no one had any idea what was wrong.

Through an online search, Sofia’s mother discovered Lyme disease, a tick-born illness explaining Sofia’s symptoms almost perfectly. Remembering the tick bite, she made another appointment to get tested. But her doctor refused and said Lyme doesn’t exist in California.

Frustrated, Sofia went to a doctor outside her health insurance and paid out-of-pocket to get tested. It was positive.

She then began intensive antibiotic treatment from a Lyme Literate Medical Doctor, one of the few types of professionals who treat Lyme patients in the area.

In June of 2012, Sofia visited a specialist within her insurance company to seek affordable treatment. But the positive blood test wasn’t enough proof. She was told she didn’t have Lyme disease because she was bitten outside the East Coast, she never developed a rash and her test was not done according to the Centers for Disease Control and Prevention’s standards.

Yet in 2012, the CDC recorded 61 confirmed Lyme cases in California, and says 20-30 percent of patients won’t get the rash. They even mention evidence supportive of post-Lyme disease syndrome, a condition that Sofia is experiencing, but is unrecognized by the IDSA.

“Bullshit,” Sofia wrote in her personal blog. “I did not understand the injustice.”

The IDSA’s Clinical Practice Guidelines includes an overly meticulous definition of Lyme disease. For example, the tick must have been embedded in the skin for more than 36 hours and the bite must have occurred in an area with an infection rate exceeding 20 percent, which is the East Coast and parts of Minnesota and Wisconsin.

Many Lyme patients pay hundreds of thousands of dollars on treatment because their insurance providers won’t cover it. And often, their disease has left them unable to work. If they had been diagnosed sooner, one bottle of antibiotics might have cured them and allowed them to live a normal life.

Dr. J. Stone Doggett is a researcher and assistant professor of medicine at the Oregon Health and Science University’s Division of Infectious Diseases. Like most doctors, he believes the science behind Lyme is well established; however, the expansion of potential symptoms unverified by medical evidence leads to many misdiagnoses and unnecessary antibiotic treatment.

“When you perform any test in a population with a low prevalence of disease there is a risk for false positive results,” Doggett said. “There are significant risks from taking antibiotics. These risks increase when people take antibiotics for a long time or through an IV.”

Undoubtedly, the guidelines are meant to prevent these risks. But the presence of Lyme disease in the Northwest, as rare as it may be, has been confirmed. Clearly a misdiagnosis poses a risk, but does that risk deserve more attention than the risk of an undiagnosed case of Lyme disease? Are they forgetting that people can die because of this?

Or does the problem stem from the way doctors and health insurance providers approach these guidelines? Richard Whitley, the IDSA president, addressed this in an online video, “I want to emphasize one point. The guidelines are just as they say they are. They’re guidelines. They’re not rules. They’re not laws.”

Meanwhile, hundreds of Americans infected with Lyme disease continue to suffer. Something needs to be done.

Today, Sofia is receiving homeopathic treatment and feeling better. She recently became president of the UO AccessABILITY Student Union. Her struggle has inspired her to fight for social justice in any way she can.

Follow Andrea Harvey on Twitter @andrearharvey

  • jramslyme

    If you want definitive information about disseminated Lyme disease and the co-infections that are almost always present, go to The International Lyme and Associated Diseases Society at http://www.ilads.org. Lyme and other tick-borne illness are in many states, including CA and in the south eastern US.

  • Cecil Webb

    Thank you for such an informative article that reflects the current situation of Lyme suffers and the injustice that the IDSA and CDC are perpetuating.

  • cb

    Thank you for this article. Her story sounds like so many i know who have contracted this disease and all the co-infections that go with it. Funny (not so funny) thing is you can test for the co-infections and that will give you a good indicator if you have Lyme as well, but none of these doctors ever mention that! Why? Lyme almost never comes by itself. What is up with these doctors, why even become a doctor if you have no interest in helping people who come to you for help?

  • Lyme Mom

    This could be us, from the Girls Scout camp to the same line from the pediatrician, refusal to test, cognitive and physical degeneration … thank God that Sofia’s mom and I do not give up on our kids as easily as doctors do. After 5 years of treatment, my daughters are finally back in high school and finishing up and hoping to go to college. I condemn the IDSA and CDC and the doctors who blindly follow them. Four years ago, my older daughter could not even walk, she was so sick. She was diagnosed with “fibromyalgia” and released to “IBS” and released to degenerate. All of our savings have been used up on medical bills that the insurance company won’t pay thanks to the CDC and IDSA’s ridiculous stance, and while I understand that they believe long-term antibiotics are dangerous and ineffective, our own experience says that is not true.I resent the loss of my children’s childhoods more than I resent the loss of our entire life savings, house and career (I had to stay home to care for my extremely sick children). Thank you for this article. I hope the light continues to shine on this unconscionable situation.

  • King Salami

    Do you think that people would listen or read your obnoxious and ridiculously ignorant/middle school feminist logic if you were not a pretty hot chick?

    • Get a Life

      “King Salami,” do you think you’d be writing ignorant, sexist insults if you had anything better to do with your life than troll on an article that’s trying to increase awareness and help people?
      Apparently not.

  • kay

    Thanks so much for your article. Any awareness is great in helping put the word out there. Myself and two young daughters (also in California) have lyme disease from right in our front yard. This is epidemic and so crazy that we have to suffer so much. We are fighting everyday to have a somewhat normal life and it gets tough :(

  • Beth Schultz

    This is a problem in Oregon I had 9 CDC positive Lyme Disease tests and no DR in Oregon would treat me. I was told at OHSU that I had Lyme dot com, get off the internet and stop reading about it and it will go away. That was from The best Infectious Disease Dr in this State. Lyme Disease knows no borders it is in every State!

  • Diane J Marie

    I’m glad Sofia got help.

    Thank you for this article. It will help to alert more ill people: Could it be Lyme?

    Chronic Lyme is a brain infection, a neurological disorder. There are sooner or later a ridiculous number of signs and symptoms. I had a page-and-a-half and saw 31 doctors until I finally figured out on my own what I probably had. Most with Chronic Lyme have other tick borne illnesses which makes our condition complicated and we need an LLMD (Lyme-Literate MD) to accurately diagnose and to treat us. An LLMD has had a week or two of training with ILADS Physicians Training Program, plus they continue to practice the “ILADS WAY.” Essentially, each of us has a unique illness with many factors.

    Lyme at any stage is always a clinical diagnosis with testing being just one factor. Treatment is long term antibiotic combinations. All germs both tick borne and not tick borne need to be identified, sooner or later. We need supportive supplements and herbs because Lyme is hard on the body. We need to get all complications identified and cared for by what makes horse sense to the individual and their LLMD: What supplements and herbs can help? Treatment takes 1 – 3 years, often longer. It is sooner or later a deadly illness without great care.

    Most doctors who say they treat Lyme–are lieing. There are Lyme scams galore! Scam Lyme doctors and scam nurse practitioners diagnose everyone because it’s good for their products business.

    Have you been badly neglected by doctors? That’s one of the signs of chronic Lyme disease and other tick borne illnesses. Most never saw a tick. Most never get any Lyme rash. Most Lyme is carried by teenage ticks so tiny they are the size of a poppyseed, easy not to notice.

    Sooner or later Lyme can cause MS, lupus, ALS (Lou Gehrig disease,) Parkinson’s, Alzheimer’s, rheumatoid arthritis, fibromyalgia, Lyme carditis can cause a heart attack, Lyme arthritis can put you in a wheel chair, Lyme can cause seizures, Bell’s palsy, gastrointestinal problems, MCS and much more. Nearly all the time it causes cognitive problems: reading, word recall and speaking is hard; hearing loss; vision problems of many kinds; a feeling of pins and needles; muscle pain; commonly causes hormones of many types to get unbalanced (thyroid hormone, insulin hormone, cortisol hormone, sex hormones etc.) And a whole lot more.

    Insurance-taking doctors, including infectious disease doctors, will not help diagnose or treat with Lyme, not at any stage: That’s cast in concrete, though some may help identify complications with imaging and testing. That’s due to politics and profits of many kinds and in various ways. The IDSA, the CDC and the NIH do not–will not–believe chronic Lyme disease exists. It’s more profitable not to. Chronic Lyme is not controversial. What’s controversial is whether the IDSA, the CDC and the NIH should lie about it. There is little profit in antibiotics. Every time a Lyme patient is rightly diagnosed with chronic Lyme and other tick borne illnesses, much of Big Pharma looses profits in monthly sales of drugs not appropriate to our condition.

    When children get Lyme, they may not be able to attend school for months or years. Their development is altered in every way. But there is Hope for kids!

    Many of us need SSDI.

    I had progressive MS (aggressive MS; malignant MS) but I also had Lyme, babesia and bartonella. After two-and-a-half years of great treatment is was 90% better overall and we had stopped the MS process. Holistic care has gotten me 94% better. We tend to get better in bits and chunks, with bits making up a chunk!

    Chronic Lyme makes many of us poor, even before we know it’s chronic Lyme. Search, search, search for benefits/low income help. For poor folks, it’s harder to get miles better and it takes longer, but we can get remarkably better! Where there is a will there is a way and you will find it. You will find your way! Hope is real!

    Important links:


    Advanced Topics in Lyme Disease:

    LymeDisease.org — and also see the blogs on the right side

    Lyme Documentary Under Our Skin can be purchased at Amazon or from the maker: http://www.underourskin.com or from Netflix or viewed free, now at HULU (though there may be an expensive fee from your ISP): http://www.hulu.com/#!watch/268761

    You’ll need a great support group. To find support groups in your state where you can ask about genuine LLMD’s, holistic care for complications, find benefits/low income help and find friends who understand click-on your state at Lyme-Aware.org

    Move forward!

  • kathy pease

    IMHO I swear they are trying to kill us all! I believe with all my heart that this all started when they brought that german freak Erich Traub over to infest ticks for bio weapons at plum island..It all started in lyme,conn not far from plum island and I don’t think anything was released on accident I believe it was on purpose..why all the fuss with being able to get diagnosed and treated for God sake..There must be a hidden agenda.Call me crazy or whatever but I have it too and my only nearby llmd is shutting his doors in January.