Ukiah, CA – CALDA Lyme Disease Conference
Ukiah, CA – CALDA Lyme Disease Conference
Speaking in California about Lyme disease was really no different than speaking on the east coast about the disease. The cast of characters was the same: the concerned patients, the unknowledgeable public, the “cautious” officials, the skeptical medical profession and the nervous few who dare to admit the disease into their medical paradigm.
Although my trip got off to a bad start when I was informed in Newark that my suitcase was overweight and I needed to repack–into what I asked with dismay, as I was handed a cardboard box–my trip improved as I touched down in California. The warmth and appreciation of the patient community who opened their hearts and homes to me was touching. Due to their generosity, I was able to travel from Carlsbad in the south to Chico in the north. They housed me, chauffeured me and fed me throughout the trip. Their stories of personal tragedy inspired me to complete the 13 days often with two and three events scheduled each day.
The hospitality and acerbic wit of Myrna Vallejo, Lyme Disease Support Group of San Diego County, opened my “tour” where I spoke to a full house (hers) at a luncheon in southern California about what is happening nationwide with Lyme and what the LDA hopes to accomplish by aligning with other organizations nationwide. I spoke with Antoinette Grewal, a productive CA activist and her daughter, who are working on the education issue in CA, and I first met Barbara Barsochini, Vice President of our then newest affiliate, Lyme Disease Resource Center (LDRC), and Earis Korman, with whom the LDA had long communicated on Lyme issues, and who was instrumental in planning my next forum of the Orange County/LA Support meeting at St. Mary’s Medical Center in Jamaica Bay. In between talking (me), Myrna supplied me with a delicious variety of foods.
I navigated the fabled California freeways in my rental car and arrived in Marina Del Ray in time to meet two newly arrived LDA reps, Edina Gibb and Pat Loughran. That night, several of us had dinner with a California judge and his wife who has Lyme disease. We spend many hours discussing ways to combat not only the disease but also the apathy in political and medical circles. He figures into my trip later.
The next morning we followed Barbara to St. Mary’s where I spoke to a full house, including at least one physician. Three hours later, they continued plying me with questions. The judge however, had wrangled an invitation for me to an important dinner with hundreds of lawyers and several officials, with whom he was able to arrange seating. I was spirited out of St. Mary’s, and I drove an hour away to the dinner. I spoke to a state and a federal official there and made several good contacts for future use by CA or the LDA.
I spent several days with Oscar nominated actress Mary McDonnell, Dances with Wolves. I found Mary charming, warm, and thirsty for knowledge about Lyme disease. The LDA, with Mary’s help, set up video teleconferencing from a Malibu hotel with Brian Fallon, MD, Columbia University. Mary, Barbara and I had a real time Q&A with Dr. Fallon, emphasizing the neuropsychiatric aspects of the disease. Mary had learned first hand the devastating effects of the disease from her cousin, Pat, whose husband died after a lengthy bout with Lyme.
Doctor Greg Bach, Professional Advisory Board Member for the Pennsylvania Chapter, Lyme Disease Association (PCLDA), and Jeri-Lynn Weir, Co-president PCLDA, Edina Gibb, LDA County Coordinator, and Pat Loughran had previously met with Mary to discuss the effects of Lyme disease. After my three days with Mary in California, she agreed to become a spokesperson for the Lyme Disease Association. A few days after I retuned home from California, I attended the Columbia University luncheon honoring the effort of our affiliate, Greenwich Lyme Disease Task Force (GLDTF), and LDA and our initial commitment to the endowed Lyme disease research center. Mary flew to New York to join us for the luncheon and met Dr. Brian Fallon and Dr. Carolyn Briton in person. Dr, Briton, Columbia neurologist, had given the LDA powerful video presentation for the Albany hearings.
On my last day on the southern leg of my trip, Barbara Barsochini arranged for me to be interviewed for a TV program on Lyme disease, which continues to air, for Malibu Public Television. Barbara proved to be a delightful host and knowledgeable interviewer. Before I traveled North, I also received word that the Lyme Association of Greater Kansas was interested in coming on board as an affiliate of the LDA. I had conferenced with them and we had emailed back and forth prior to my trip. This was affiliate number five.
Flying north, I was singled out for a wand and luggage search on my flight to Palo Alto, making me cognizant of the strict procedures put in place to screen for terrorists. There was something about that episode that made me confident the government was doing its job. It also made me continue to wonder why we had not yet developed strict screening procedures for Borellia burgdorferi, a terrorist of another sort, an unseen enemy slowly marching its way across the nation almost unopposed by those who are charged with stopping its carnage.
The Harrises were wonderful, although Dr, Harris may have some observations on the heft of my suitcase he was too polite to mention, and the tour of IGeneX Labs was elucidating, as I was able to actually see firsthand some of the tests being performed and meet those responsible for carrying them out. I was surprised at the amount of interest in the LDA and Lyme disease from IGeneX staff.
Karen Chew was my next host, and her friendliness, not to mention her penchant for fabulous cooking, was not dampened even when my suitcase knocked over her lemon tree. She introduced me to someone whose avocation, I believe, makes her a valuable ally to the Lyme community. Karen drove me to the lovely Sacramento Valley, home to the meeting of the California Lyme Advisory Committee where I was able to finally put faces to the names of many Lyme activists whom I had communicated with over the years and who are doing a great job in California, including Peg Leonard and Nancy Brown. The judge I mentioned earlier showed up to hear me speak, but unfortunately, had to catch a plane before that happened at the end of the day.
Since the council limits speaking time, most patients banded together and gave me their time to speak. Chairman Bob Lane started adding up times as he called upon patient after patient who said “I give up my time to Pat Smith.” It brought tears to my eyes that these patients, many who had driven for hours to get there, gave up their time for a virtual stranger. Bob agreed to give me 15 minutes, which the health department representative was not happy about. However, he pointed out I came all the way from NJ and the patients willingly gave me their time.
For me, the Committee’s prior discussion was a little bit like deja vu, since I had been a member and chair of the NJ Governor’s Lyme Disease Advisory Council before it became, in my opinion, heavily populated with less than patient friendly reps. I commented on the pamphlet the CA Committee was developing and gave a summary of what was happening with the disease nationwide and also the measures some states were taking politically. I finished with a warning that from what I had seen on my trip to date, California was where the east coast had been 6-7 years ago, but California had an advantage, the history of the east. CA could use that experience to implement laws and policies, which could prevent thousands of patients from becoming sick and debilitated.
I believe what I said was well received, and some health department officials who attend asked for copies of the speech to be disseminated. Unfortunately, I spoke extemporaneously, but the entire event was videoed courtesy of Dr. Lynn Shepler, who agreed I could have a copy of the tape, which I am anxiously awaiting. Dr Shepler has been a continued critic of the Council and was instrumental in helping obtain open forums.
Several activists arranged a dinner meeting after the Council meeting. I was delighted to meet LDRC’s Lobbyist Herb Koffler and see Dr. Marilynn Barkley, University of CA, Davis, again. Dr. Barkley has performed considerable research on Lyme disease, some LDA funded. I was also pleased to meet Dr. Terese Yang, a physician who has helped so many patients in southern California. Many activists were present and it was a lively dinner exchange.
Carol Martin, Danville/East Bay Lyme Group Leader, a dental hygienist who was successful in getting an article published on the dental implications of Lyme disease, was my next host who drove me to Chico where I finally met Mitch Hoggard, a registered pharmacist, who runs Chico Hyperbaric. The depth of his knowledge on the intracellular activity of Lyme disease left me in awe, and also made me realize the old adage “the more you know, the more you know the less you know, certainly applied to me and my knowledge of Lyme disease. He has helped many people in the chamber, and being inside his 6-person chamber put a real face for me on what many Lyme patients must do to regain some of their former health.
Mitch arranged a luncheon where I spoke to several doctors about Lyme disease. I felt they were interested but nervous, and I knew then it wasn’t only the disease that had reached our western shores, but also the political winds tinged with fear of Lyme disease. Why, I wonder, do Ebola, cancer, AIDS not strike the same level of fear?
That night, Marlene Hauk, and others from the Butte County Lyme Disease Support Group, organized a wonderful forum at the Enloe Conference where I spoke again about the nationwide political implications of Lyme disease. Here I finally met Art Doherty who, I was honored to find, drove many hours to meet me. Art’s cataloguing abilities on his online site and his willingness to research articles has often helped the LDA when it has had to make presentations to officials.
Carol and I went on to San Francisco where LDA’s newest partner, LDRC President, Phyllis Mervine, and Dr. Ray Stricker arranged a meeting with activists in the hospital there. Dr. Robert Lull, President, San Francisco Medical Society, came to hear me speak. He has already taken an open position on Lyme at the Society meeting where Lyme is sometimes touted to be over hyped, and we are fortunate to have him on board. This meeting lasted several hours and lead up to a dinner with activists including GLDTF’s own Karen McCartin, whom I had met before in CT but not on her current home turf. At the dinner, I learned one fact from a professional that continues to confound me–she got Lyme disease in a CA desert and has the proof. Subsequently, ticks they dragged for there were also found to be infected with Borellia. Officials are not taking her situation seriously.
Somewhere on the trip I also learned a second fact that bothered me. I knew that Bartonella had been found in ticks in CA, but I was not aware that one of the universities was already testing patient samples and showing positive Bartonella.
Wearily, I returned to the hotel anticipating a good night’s sleep before the next day’s departure only to find myself yards away from one of the most spectacular fires experienced in San Francisco—the burning of portions of Cannery Row. From my hotel window I gave a blow-by¬blow radio interview of the fire. Needless to say, I slept little and felt lucky that Phyllis was able to drive me to the airport on schedule in the morning. My flight was relatively uneventful, although my suitcase left on a later plane out of Chicago so it arrived at my home a day later than me, at 6:30 am, I might add.
I felt the CA trip engendered lots of goodwill; it was positive to meet the activists there and personally interact with them. I met and spoke with many whose names are not mentioned above because of space limitations. But I thank all who helped, came, or just cheered me on from the sidelines. I came back east thinking we have made progress, we have joined hands coast to coast to stop the spread of this debilitating disease. Patients, at least, have realized that Lyme is Lyme is Lyme no matter where you find it.