MENDOCINO COUNTY (CBS 5) – A bite from a tick carrying Lyme disease can have life-altering consequences. For this week’s Jefferson Award winner, it pushed her to help others with the infection.

Phyllis Mervine has spent decades educating and supporting both doctors and patients about the dangers of tick-borne illnesses.

Mervine and her family moved to an 80-acre ranch in rural Mendocino County in the 1970s. It wasn’t long before she started feeling sick.

“I just started feeling run down and extremely tired and achy,” Mervine, a lover of the outdoors, said.

For ten years Mervine lived with debilitating symptoms before she took the advice of a neighbor to get tested for the newly discovered bacterial infection carried by ticks called Lyme disease.

“She saw me draggin’ in week after week and said ‘Phyllis, you ought to get tested.’” Mervine said.

Mervine tested positive and she quickly realized she was not alone.

“I called all the neighbors and said, ‘I’ve just been diagnosed with Lyme disease. Do you know anything about it?’” Mervine recalled. “’Do you have Lyme disease’ or ‘do you have any of these symptoms.’ Quite a few had Lyme up here.”

That was the start of a twenty year journey that made Mervine one of the pioneers in fighting Lyme disease in California. Her ranch soon became ground zero for a community study, collecting ticks and helping identify the diseases they carry.

Lyme-infected ticks have been documented in 42 California counties – and with numbers like those, Mervine saw a need. In 1989 she founded CALDA, the California Lyme Disease Association.

“It was desperately needed because it’s a chronic disease and nobody was treating it, except a couple of doctors,” Mervine said.

Thanks to Mervine, CALDA created support groups plus a website with information and resources. The group provides grants to doctors researching tick-borne illnesses, which can be crippling if not diagnosed early.

“This is not just somebody with a swollen knee or somebody who has a headache, this is draining our country,” author and friend Suzanne Fratus said.

Fratus is writing a book about Lyme disease and credited Mervine for improving patient care.

“She’s educated doctors. She’s gone to Congress, to the NIH. She put out the newsletter. She started patient support groups. She’s been involved in everything,” said Fratus.

And while Mervine’s own battle with the disease was helped by antibiotics, she said she’s not cured, and much work remains to be done to protect future generations.

(© 2011 CBS Broadcasting Inc. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed.)

Comments (33)
  1. Claire Werner says:

    Awesome to see this! My sister-in-law in Sonoma County was diagnosed with this last year after suffering 10 years and being diagnosed with “MS”, “parkinson’s”, “Fibro myalgia” etc. before they finally realized it was lyme and several other tick born organisms. She is now undergoing antibiotic therapy AS ARE HER CHILDREN (!) who obtained it either intrauterine or through her breast milk. Most MD’s won’t even do the extensive testing it takes to diagnose those who have had this a long time. I hope this problem gets a lot more notice as there are probably so many folks being misdiagnosed and hence not cured.

  2. Lyme-Aware says:

    Congratulations! A job well done Phyllis. Thank you for all that you do and have done.

  3. Donna says:

    Congratulations Phyllis!!! This is well deserved. You are a “lyme warrior” for all of us suffering with Lyme & its co-infections. Thank you.

  4. Linda Warner says:

    I picked up Lyme over 20 years ago when I was living in Mendocino California. It took me 16 years, and a move to New England before I finally got a diagnosis in New Hampshire. I so wish I had known or at least known about Phyllis Mervine back then. I consider her a real heroine and am very grateful for all she has done to improve and educate the lives of those of us with Lyme and the often ignorant medical communities. Thank you, Phyllis

  5. wIlliam says:

    You are the BEST BEST BEST !!!!!!!!!!!!! Peace

  6. Claire says:

    Congratulations! My access to treatment for tick-borne diseases is available here in California because of Phyllis’ hard work and the California Lyme Disease Association’s continued battle for patients with Lyme and other tick-borne diseases.

  7. Dayle Ann Stratton says:

    Much deserved award for Phyllis. And not only does it recognize her work, it brings to the public eye the work that so many across the nation have been doing trying to raise awareness of Lyme disease– not only for people suffering from it now, but for all those who are still at risk.

  8. Virginia T. Sherr, MD says:


    The author of the article about Phyllis Mervine deserves a commendation. (Jefferson Award Winner Leads Battle Against Lyme Disease
    February 16, 2011 7:53 PM) as does CBS CA for publishing it. It was just right. Phyllis has been the voice of California Lyme disease for years, unselfishly giving of her time and energy to educate and otherwise help Lyme victims become fully functional again.
    Associated articles on the subject of tick-bourne diseases were also informative. They will prove to be quite useful for those Californians whose doctors have the expected old-fashioned notion that there is not much Lyme in California..

  9. T. Luttrell says:

    Phyllis, this is well-deserved recognition for all you have done and continue to do.

  10. Thora Graves says:

    Phyllis I kinow you helped save my life 22 years ago when I first met you. You encouraged me to fight for more treatment when I was told I was cured. I did as you advised and I did get better but it has taken a long time. I thank you so much for all you do. God Bless you and your family.

  11. Tia says:

    It’s so nice to see something like this. I live in Oregon where doctors are not allowed to learn about tick-borne infections or properly treat them. Years ago, when I thought I might be able to travel to California to get treatment unavailable in Oregon, Phyllis was wonderful during many – many – phone conversations. I learned a lot from her. She even connected me with a possible lodging option, no charge, in someone’s home.

    Still, I was unable to pull it altogether, but I will never forget her generous nature for sharing information. That was over 12 years ago and I’m still very ill and home-bound. I do the best I can with what I have, but on a shoestring, it’s a steep incline. I wonder how my life might have been different had there been medical treatment available (and affordable) in my own state with doctors who actually KNEW what they were doing.

    1. yvonne zahir says:


      I am a nurse who has had 4 new tick bites in last 4 yrs. I am being treated
      but find natural products from young living oils to be actually truly life saving.
      If you wish to phone me at 518-526-2297..and or write your mail address
      (snail mail) I can mail a product catalog to you….as well as share information
      that is helpful. Your story alerted me to reply to you. Yvonne Zahir

  12. Tia says:

    I forgot to first say: CONGRATULATIONS, Phyllis. But also to the station: THANK YOU for recognizing the truth about lyme. I doubt such an article or such an award would occur in most other states (especially to the north of you). Although there are no doctors in Oregon educated enough about lyme and other TBD (tick-borne disease), there is a very good state advocacy site. But, each time they attempt to share information with the news media, the media is as closed to truth as are the doctors in Oregon.

    It’s good to see some light shining on the truth about lyme – at least right there in Mendocino County. It’s good to see a reporter who can grasp the nature of it.

  13. Kathleen O says:

    I’m a Lyme patient. Took medical science 30+ years to diagnose me. Treatment is not helping yet. hopefully someday soon it will..Lyme has made me very ill and I too have been diagnosed and offered medication for CFIDS, Fibromyalgia, MS, I have chronis and active infections that render me bed ridden. I’m still fighting ..

  14. Trish says:

    Phyllis should be an example to all of us. Take action! I am proud to know Phyllis and thankful for her years of hard work and genuine concern for people.

  15. Karen says:

    Congratulations Phyllis; we all love you and are so thankful for all your help. SO exciting to see you getting recognized for your contributions!!

  16. ChelseaC says:

    Congrats Ms. Mervine!

  17. Darlene Dumas says:

    Phyllis, congratulations and thank you for your tireless efforts to educate and promote public awareness about this terrible disease. CALDA has been such a great support tool for me and I am sure many others that suffer from Lyme. We need thousands more like you!

  18. Alan Stone says:

    CALDA provides a wonderful service to many of us across the country. Thank you Phyllis!

  19. Lauren C says:

    THANKS Phyllis – I hope some day to thank you for all of your great work w CALDA in person. I also was diagnosed with CFS and Fibromyalgia. Took 12 yrs to find out I had lyme and I started treatment last yr. Thanks for helping to spread the awareness~

  20. Donna Williams says:

    Dear Phyllis,

    Thank you for all that you do and have done for us lyme patients!!! You are AWESOME!!!! I got lyme after a trip to Mexico in 2001. I had MS type symptoms and none of the doctors knew what was wrong with me. I did a lot of reading and discovered CALDA. After reading about lyme, I diagnosed myself and asked my doctor if she would run the test? My doctor told me, “There is NO Lyme disease in California. I finally convinced the kind doctor who did my spinal tap to run the test. I was lucky, my test came out positive. Now I have a wonderful infectious disease doc who has allowed me to stay on the antibiotics which have almost made me well ever since.

    I salute you DEAR lady!!! You have helped SO many people with lyme find life and hope again!!!!

  21. Miki says:


    You deserve the Medal of Honor for your prioneering efforts with Lyme disease and other tiick-borne infections.

    I’m certain you have helped thousands or tens of thousands in this country and arouind the world with the information you have provided.

    And you have managed to do this while battling with your own illness. Amazing!

  22. Phyllis Mervine says:

    Thank you all for your kind comments.There were many people who helped me over the years. I wish I could have thanked them all publicly. The Lyme community really is a most wonderful and generous group of people who are still actively trying to help people largely abandoned by mainstream medicine.

  23. Nancy Van Natta says:

    My daughter and her family are battling Lyme and we are so disillusioned with our doctors at the Palo Alto Medical Foundation. They look at test numbers and IDSA guidelines and do not look at or listen to the patient. My daughter has lost 55 pounds and has debilitating symptoms and her PAMF doctors insist that nothing is wrong. Thanks to a few courageous doctors who treat this problem she is finally getting better. PAMF doctors insisted that she was the problem.

  24. Brenda Peltier says:

    Phyllis your prioneering efforts with Lyme disease and other tiick-borne infections has made a difference for patients all over the US. Thanks for all your heard work.

  25. Harriet Bishop says:

    Phyllis, thanks to your hard work CALDA shines like sunrays across the USA illuminating the hidden manifesttions of the epidemic of Lyme disease. The numbers of currently infected persons will continue to increase until naysayers can no longer deny the existence of chronic Lyme disease. The devastating effects of Lyme disease on our families, medically, socially, emotionally and financially, are contributing to the worsening national economy. Thank you, Phyllis, for all you have done to spread awareness not only in CA but all USA.

  26. JoAnn SkyWatcher says:

    Phyllis, I appreciate the vision you have had to create CALDA. Thank you for your persistence and follow through. Congratulations on being recognized for your wonderful contributions!

  27. Teri Corman says:

    Dear Phyllis – congratulations on your much deserved award! Your efforts to help everyone in the Lyme community for so many years, in-spite of so many roadblocks along the way, is appreciated beyond words! CALDA has been there for me, through the 8 years I’ve been diagnosed and appropriately treated (14 years of undiagnosed illness before that). The medical community must, and will become more cognizant of chronic, persistent Lyme Disease, because of your work and the efforts of all the people who have helped you over the years… Thank-you!

  28. Sally Smitz says:

    Thank you for sharing your story. I also appreciate the fact that you are a Lyme adtivist and educator…We DO need to educate our doctors and the publc as well. I have chronic Lyme..and so do my children…extended family members as well. We are not happy with how Western doctors treated us over the years…and misdiagnosed all of us. Lyme is not easy to identify..but now that I have educatd myself..and read alot…I find it quite easy to see Lyme symptoms of sooo many people, teenagers…etc. But I am not a doctor of course. Can I leave it to the doctors to diagnose them? Or will they have it for many yearse like we did? Thing MUST change…NOW. Thank you for this story.

  29. Myo says:

    Great article. Thank you.

    Here are some other links that might be helpful to readers suffering from Lyme disease. The family in the first link sounds just like mine.

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