Prime Time Lyme Newsletter: June, 2005 Page 1
Opinions expressed in the Prime Time Newsletter are strictly those of the individual authors. If anyone wishes to comment on articles appearing in this publication, please make them directly to the authors. Prime Time Lyme information is not intended to be considered medical, diagnostic or prescriptive advice. See a doctor for qualified care.
Prime Time Lyme Newsletter: September 2014 Page 1
NEXT MEETING
WHEN: Thursday, September 25 6:30 p.m.
PROGRAM:Dr. Robert Patterson, D.C., will discuss pain management
WHERE: St. Joseph Hospital Community Center, I-435 & State Line Road, Kansas City, MO. Drive past the ER.
I-435
Meeting Room
N ER St. Joseph Hospital
State Line
Carondelet Dr
Lyme Association of Greater Kansas City, Inc.
P.O. Box 25853, Overland Park, Kansas 66225
Lyme Hotline:
913-438- 5963 (L-Y-M-E)
E-mail:
President: Ila Utley
1st Vice President: Patty Spehart
2nd Vice President: Jackie Head
3rd Vice President: Becky Edson
4th Vice President: Kathryn Sindt
Recording Secretary: Bob Britain
Corresponding Secretary: Kathy White
Co-Treasurers: Jack & Marge Dunham
Editor: Kathy White
Prime Time Lyme is sent monthly to members. Annual dues are $30. This newsletter is not copyrighted. Copying is encouraged.
Weather Cancellation Policy: We will not meet if St. Joseph Hospital or the Shawnee Mission Public School District cancels evening activities. You can call our hotline to find out if our meeting is canceled. Don’t come if it isn’t safe from where you live.
Our Mission: To serve as a support group for victims of Lyme disease and their families; to cooperate with the medical community; and to educate the public about prevention.
Next Meeting September 25
Dr. Robert Patterson, a chiropractor in Overland Park, KS, will speak to us about pain management and how chiropractic may help with managing pain in chronic illness. His website is overlandchiropractic.com.We’ll meet in the Abell/Lorenz room in the Community Center.
Ladies Lunch Thurs., October 2
Our next Ladies' Lunch will be Thurs., Oct. 2. We meet at 12:30 at The Olive Garden at 6750 W. 95th Street, just east of Metcalf in Overland Park. All interested ladies are invited. Please email or leave a message at 913-438-5963 if you plan to come.
ILADS Full-Day Fundamentals Course
October 9, 2014
Grand Hyatt Hotel, Washington, D.C.
This is for medical professionals new to treating Lyme disease or who want a refresher course. See for details or to register.
ILADS Annual Conference
October 10-12
Grand Hyatt Hotel, Washington, D.C.
This conference, sponsored by the International Lyme and Associated Diseases Society (ILADS), is for medical professionals. See for more information or to register.
Fibromyalgia Coalition Annual Conference
Fri. & Sat., November 14 & 15
Elms Hotel & Spa, Excelsior Springs, MO
For patients with CFS, fibromyalgia, and other chronic illnesses, and for health care providers interested in natural healing. The registration fee is $209. Hotel reservations are $135 per night if you ask for the Fibromyalgia Coalition discount and reserve the room before Oct. 4. For more information or to register for the conference, see can make hotel reservations through that website or call the hotel at 1-800-843-3567. Any appointments for spa services (massage, sauna, manicure, pedicure, facial) must be made by calling the hotel before Oct. 4. To get a 10% discount on spa services, say you are with the Fibromyalgia Coalition group.
Speakers and topics at the conference will be:
Linda Bamber, Nutritionist – Breast cancer:causes, screening, exercises to clear lymph nodes, & diet; William Shaw, PhD, Biochemist, Toxicologist – Chronic candida and the effects of chemical exposure on health; Gloria Gilbere, ND,PhD – Oral health and the effects of mercury poisoning on overall health (She will introduce her new book, I Was Poisoned By My Teeth); MarkBuse, Colon hydrotherapist from Ft. Worth, TX – “Coffee Dialysis, the Supreme Detoxification” (He will introduce his new book, Coffee Dialysis); Christopher Powell, PhD – Treating inflammation and fibromyalgia with Chinese medicine; Garrett Sullivan, MD, Family Practice – Methylation; Debra Filla, Former Vice-President, Celiac Prue Association – Autoimmune disease, fibromyalgia, celiac, & gluten sensitivity.
Members in Action
Ila Utley and Kathy White met with Heidi Cashman, a staff member for U.S. Rep. Kevin Yoder, in Rep. Yoder’s office in Overland Park, KS on August 28. They discussed: the suffering of Lyme disease patients; difficulties getting diagnosed; problems with testing; the CDC’s actions to prevent doctors from using sensitive tests that can detect more cases; underreporting; the CDC’s endorsement of inadequate treatment guidelines; the problems Lyme doctors have had with their state medical boards; inadequate funding for Lyme research; and the need for passage of HR 4701, which would include Lyme disease specialists and patient representatives on a tick-borne diseases committee, to ensure that money for Lyme disease would go to research that will help patients. Heidi said she would inform Kevin Yoder of the issues. (The House later passed the bill. Now it waits for the Senate.)
Jackie Head and Kathy White had a tick-borne disease information booth at the Kansas Association of the Academy of Pediatrics in Wichita on Sept. 12. They talked to pediatricians and gave out brochures, literature packets and flash drives that contain information about Lyme and other tick-borne diseases.
Naoma Coffman has been distributing “Lyme Disease is on the Rise” brochures in and around Vichy and Rolla, MO.
Judith Wells Writes to Wall Street Journal
By Kathy White
Lyme Association member Judith Wells of Mission Hills, KS sent a letter to the editor of the Wall Street Journal on Sept. 6 in response to a letter to the editor they published on Sept. 5 by Paul Mead of the CDC. To our knowledge, her letter was not published, but it may have made the editor more aware of testing issues. Here is part of what Judith said:
“The 2011 CDC Lyme Case Definition states in the first sentence that it was developed for national reporting of Lyme disease and ‘it is not intended to be used in clinical diagnosis’.
The same document lists the two-tier testing as a definition of qualified laboratory criteria for diagnosis, ‘for the purposes of surveillance’.
“In his September 5 letter, Paul Mead of the CDC in Fort Collins, Colo upends the CDC's published description of two-tiered testing as a test for required national reporting and not for clinical diagnosis and declares this procedure ‘accurate’ and ‘developed specifically to aid in diagnosing patients suspected of having Lyme disease’. [This is] false. The CDC home page for Lyme Disease states it is ‘diagnosed based on symptoms, physical findings (e.g. rash) and the possibility of exposure to infected ticks; laboratory testing is helpful....’ Veterinarians are not hampered in their treatment of dogs and horses and administer a single test and then treat animals in their care. …The public needs to know what veterinarians encounter to recognize the possibility of exposure. …Obamacare requires treatment by ‘best practice,’ and if the CDC insists that it is cheaper to miss cases with an inaccurate screening test before administering the Western blot, then ‘Affordable Healthcare’ will actually cost more to treat patients who may ultimately be diagnosed with MS or dementia, not to mention the human costs.”
LabCorp No Longer Does Western Blot Test
if Screening Test is Negative
By Kathy White
LabCorp announced in their July, 2014 newsletter Lab Horizons that, effective August 11, they will no longer do a Western blot test for Lyme disease unless an EIA (enzyme immunoassay, comparable to ELISA test) is positive or equivocal. Many Lyme specialists don’t order a screening test (ELISA or EIA or IFA), because they miss about 50% of cases, and even more early in the illness.
Doctors can no longer skip the screening test and just order a Western blot from LabCorp. LabCorp said they are following the CDC’s recommended protocol to avoid false positive Western blots. (Are they saying their own tests aren’t reliable?)
The LabCorp newsletter also said that, if a patient has been ill for more than 30 days, the IgM Western blot should not be ordered, only the IgG. (Many patients with chronic Lyme have a positive IgM but not a positive IgG.)
Now, even more people with Lyme disease may suffer for years undiagnosed. Will the CDC get other labs to quit offering the Western blot unless there is a screening test and it is equivocal or positive?
You can read LabCorp’s announcement at Scroll down to page 8.
Dr. Daniel Cameron, President of ILADS, said on his website, “It is important that LabCorp reverse their position and allow physicians to continue to order western blot tests for Lyme disease, even if the EIA or IFA is negative. Until then, clinicians may have to direct their patients to other labs.”You can read his comments about testing at
Give Through the United Way
If you or your spouse is employed, please request a donor choice card and designate the Lyme Association of Greater Kansas City for your United Way contributions. We are a 501(c)(3) non-profit, tax-deductible organization. Our agency number for the United Way of Greater Kansas City is 1545649. Our Lyme Association address is P.O. Box 25853, Overland Park, KS 66225. We receive no funds from the United Way except from people who designate our Lyme Association. United Way contributions help us maintain our hotline and website; produce brochures, information packets, and other literature; and give out information at health fairs, county fairs, and medical conferences.
The Lyme Times
The Lyme Times is a national quarterly news magazine published by Lymedisease.org, which until recently was called the California Lyme Disease Association. This year is the 25th anniversary of The Lyme Times, and they have been celebrating with two special issues that have focused on the history of Lyme disease activism and the activities of support groups affiliated with the Lyme Disease Association. The issue that came out several months ago (Volume 26, No.1) gave an excellent account of the activities of patients, advocates, doctors, and organizations that have shaped Lyme disease history.
The recent issue (Vol. 26, No.2) tells about: the Worldwide Lyme Disease Protest that was held in May, 2014; the Mayday Project, which was a protest held on May 22nd & 23rd outside the headquarters of the Infectious Diseases Society of America in Arlington, VA (people were protesting their inadequate diagnosis and treatment guidelines); the persecution of Lyme doctors; federal legislation concerning Lyme disease; Lyme legislation passed in various states; and activities of support groups affiliated with the Lyme Disease Association (LDA). There is a brief paragraph about the Lyme Association of Greater Kansas City on page 15.
The recent issue also talks about interviews by the news media with Lyme patients and their doctors. It has a photo of journalist Mary Beth Pfeiffer, who has written an excellent series of articles about tick-borne diseases and the controversies for The Poughkeepsie Journal (in New York). She was nominated for a Pulitzer Prize for the articles. The Lyme Times also tells of the struggles of some celebrities who have battled Lyme disease and what they have done to make the public aware. The celebrities mentioned are: singer Debbie Gibson; singer Daryl Hall; TV actress Yolanda Foster of “Real Housewives of Beverly Hills”; Olympic freestyle skiier Angeli VanLaanen; punk rock singer Kathleen Hanna; baseball Hall of Famer Tom Seaver; bestselling author Amy Tan; Gretchen Carlson, Fox 4 News anchor and former Miss America; Christi Rampone, captain of the U.S. women’s soccer team that won Olympic gold in 2012; and Elena Delle Donne, Chicago Sky women’s basketball player and Rookie of the Year in 2013.
This issue No. 2 also tells about the book Cure Unknown by Pamela Weintraub and the films “Under Our Skin” and the recently released sequel to it, “Emergence.”
To join LymeDisease. org and receive a one-year subscription (4 issues) of The Lyme Times, mail a check for $35 payable to LymeDisease.org to: LymeDisease.org, PO Box 1352, Chico, CA 95927. Write “membership” on the memo line of the check. If you wish to start your membership with the current issue, enclose a note requesting Vol. 26, No. 2. You can also join online at:
House Passes Lyme Bill H.R. 4701
By Kathy White
On May 2 Representative Christopher Gibson of New York introduced H.R. 4701, The Tick-Borne Disease Research Accountability and Transparency Act of 2014, in the House. This bill would establish a working group to direct how federal funds for Lyme disease would be spent. Lyme disease doctors and patient representatives would be part of the working group.
The bill was amended in committee in a way that would be detrimental to patients, so in July many Lyme patients and advocates contacted committee members and persuaded them to kill the amendment and pass the bill with wording that supported the original intention of the bill. The committee passed the bill with appropriate wording on July 30. Then Lyme patients and advocates from across the country contacted their representatives and asked them to support the bill. After powerful speeches by Rep. Christopher Gibson, Rep. Christopher Smith, and Rep. Sean Maloney, the bill passed the House on September 9 by voice vote. Now the bill is awaiting a vote by the Senate. (The Senate has many bills to consider and may not get around to this bill.)
Watch a video of the speeches at. Click on the arrowin the blue box onleft side. Drag the slider to 5:56:20 to start. Ends at 6:15:10 (about 19 minutes total).
Thank you to all of you who contacted your legislators regarding this bill.
Silent Protest Held
in Front of New York Times Building
On Wed., Sept. 17, Lyme disease activists from across the U.S. gathered in New York City and held a silent protest in Times Square, in front of the New York Times building. The candlelight vigil was held from 11 a.m. to 1:30 p.m., which enabled them to be seen by passers-by taking lunch breaks. Protesters wore green armbands. They wore black clothes and were silent, to demonstrate the silence of the news media and lack of adequate press coverage concerning Lyme disease issues. They held signs saying such things as: “Lyme disease: Everyone is at Risk,” “End the Crisis: Start the Research,” and “Lyme Disease; Easy to Get, Hard to Cure.” Prior to the event, Lyme disease activists sent letters to journalists for various news publications to notify them of the protest. More information about the protest is at
On Sept. 3rd, Jessica Bernstein of SpeakOut issued a press release announcing the event. The press release is posted at:
… The press release said:
“Lyme Activists to Speak Out at New York Times with Silence Against Silence”
“New York, NY—OnWednesday, September 17, 2014, Lyme disease patients from around the US will unite at the headquarters of the New York Times to call for greater coverage of the Lyme disease pandemic.Lyme patients are using the New York Times as a symbol for the media as a whole to bring attention to the general underreporting of this public health crisis. By holding a silent vigil, Lyme patients are speaking out with silence against the silence. ‘Increased media coverage will mean the difference between crippling debilitation and a normal life for hundreds of thousands of people. Greater public awareness can lead to prevention and increased funding for research, and that’s our goal with this event,’ says Jill Auerbach, Chairperson of the Hudson Valley Lyme Disease Association.
“Butoh dancers from theVangeline Theaterin Brooklyn will be performing at the vigil in support of raising awareness. Dancers will be dressed in white and will perform in silence, as an expression of the silent suffering of Lyme patients.
“In 2013, the Centers for Disease Control (CDC) announced that rather than 30,000 new Lyme cases annually, there’s an estimated 300,000. But otherLyme disease experts estimate that there are likely1 to 2 million new cases per year. [See estimate at
“Despite the rapidly escalating rates, the media has given Lyme significantly less coverage than other diseases that are less prevalent in the US. A Google news archives search shows 12,100 results for ‘Lyme disease’ in contrast to 117,000 for ‘HIV.’ Annual rates of Lyme disease far exceed annual rates of HIV in the United States bysixfold. Dr. Marc Conant, who was at the forefront of the AIDS movement, says that we arerepeating past mistakesmade handling the AIDS epidemic with Lyme disease: ‘In the early days of the AIDS crisis, there was little effort made to do public awareness and consequently the epidemic escalated to disastrous proportions.’
“Dr. Jane Marke, M.D. believes that Lyme disease is the new AIDS epidemic in New York: ‘I encounter so many people here who either have Lyme disease or have a family member afflicted with the disease. It’s become a serious problem but nobody is talking about it.’
“Unlike the AIDS epidemic of the 1980s where many able-bodied people took to the streets on behalf of sick AIDS patients, those struggling with Lyme disease have been primarily waging this battle alone. Many Lyme patients are so debilitated that they’re having to engage in a new kind of activism – activism from a homebound or bedbound state. Sick Lyme patients are fighting a David and Goliath war against the CDC and HMOs who assert that a 2- to 4-week course of antibiotics cures all patients. But people like 34-year-old Josh Cutler, who is still severely ill after taking the recommended treatment, insist that a short course of antibiotics does not work for many: ‘We’re dealing with an all profit, no care attitude by HMOs and it’s having a serious impact on families and our economy.’