Order LDA Brochures
The Lyme Disease Association provides the following brochures: LymeR PrimerTM, TickmarksTM, The ABC’s of Lyme DiseaseTM. Any combination of free brochures can be ordered in quantities from one (1) to 200 maximum order. Sorry we cannot honor larger orders and no out of country orders. ($10 Shipping & Handling)
The Lyme Disease Association provides the following brochures:
LymeR PrimerTM (pdf) Awareness Brochure: symptoms, tests, tick identification, diseases ticks carry, prevention, tick removal, tick testing, general facts and symptoms about Lyme and many tick-borne diseases.
En Española – LymeR PrimerTM (pdf) Folleto de Sensibilización
Disponible solo para descargar. No hay copias impresas disponibles.
TickmarksTM – Bookmarks (pdf) Awareness Bookmark: pictures of ticks, diseases they carry, proper tick removal.
ABC’s of Lyme DiseaseTM (pdf) Brochure For Parents & Educators: specialized information on children in areas of ophthalmology, psychotherapy, neuropsychiatry, gastroenterology, pediatrics, rheumatology, co-infections, education.
TickCardTM (pdf) Business Sized Awareness Card pictures of ticks, diseases they carry, symptoms and tick removal
Order Limit –
Any combination of free brochures can be ordered in quantities from one (1) to 200 maximum order. Sorry we cannot honor larger orders and no out of country orders.
(TickmarksTM are no longer available for order. PDF can still be downloaded & printed)
- 100 LymeR PrimerTM & 100 The ABC’s of Lyme DiseaseTM = 200 brochures OR
- 75 LymeR PrimerTM, 75 The ABC’s of Lyme DiseaseTM, 50 TickCardsTM = 200 brochures
Please email brochures@LymeDiseaseAssociation.org with any questions or problems regarding your order.
Order Online –
- No out of country orders
- Brochures only available via online order form (mail-in and phone requests not accepted)
- Allow 4 weeks for delivery
- Unfortunately due to recent postal changes, our shipping rates have increased & we now have to charge $10 per order.
- Sorry, we do not invoice.
Sponsorship Opportunities for Brochures
- Lyme education requires companies to step forward and sponsor a brochure.
- If interested please email president@LymeDiseaseAssociation.org
- The LDA thanks our current sponsors:
|Clonogen Laboratories, LLC
|Connecticut Tick Control
|Tick Box Technology Corporation
|Sawyer Products, Inc.
Safety Harbor, FL
|New Jersey Laboratories
New Brunswick, NJ
Note: LDA does not endorse products or services.
Lyme Disease Association Has New Prevention Tool: Spanish Version, LymeR Primer
President's BlogSlam Dunk for WNBA−Slam for Delle Donne & Lyme Patients
From LDA President Pat Smith’s Blog:
What has happened to one of the best Women’s National Basketball Association (WNBA) players is no surprise to the Lyme Disease Association or hundreds of thousands of chronic Lyme patients. Elena Delle Donne, of the Mystics, has been denied by the WNBA league’s panel of physicians as having a health exemption due to being at high risk for COVID 19, thus unable to be paid for exemption status if she does not play the upcoming season. She had a letter from her personal physician who confirmed her high risk status as she has suffered from Lyme for many years, and the team doctor deferred to that physician’s appraisal.
Apparently, the league’s physician panel decision was based on the CDC’s list of people of any age with certain underlying medical conditions are at increased risk for severe illness from COVID-19. The CDC medical conditions list does not include Lyme. The omission is not surprising when you consider that our government has denied treatment to 20%+ of Lyme patients because it does not acknowledge their condition. This position of the government on chronic Lyme has persisted for decades–Lyme disease as we know it has been around 46 years.
Chronic Lyme can lead in many cases to complete debilitation and even death, so why wouldn’t the government classify someone with chronic Lyme as high risk? A high risk admission would provide validity to the claims backed by hundreds of peer reviewed articles published on research in credible institutions that indicate chronic, persistent, Lyme might be real.
The recent discovery of “persisters” and biofilms associated with Lyme disease threaten the house of cards built by the deniers. The patients they have denigrated, mocked, and dismissed over decades might really be sick? These chronic patients might actually need more antibiotics than the ~3 weeks now provided under the IDSA guidelines—guidelines clandestinely, or not so, supported by federal health officials? Guidelines that these officials have tried to remove references to on their websites by removing the name and keeping the contents? As the saying goes, “If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck.” From what I hear, the Lyme community votes for the duck. The government continues to endorse IDSA guidelines for diagnosis and treatment.
The government will not however, reference the International Lyme & Associated Diseases Society (ILADS) Lyme Treatment Guidelines, those used by Lyme literate physicians, who use clinical judgment to treat longer-term for Lyme disease if they feel it is necessary.
In fact, a recent NIH FOIA came to my attention which documents a discussion in 2008 between a then NIH official and an HHS employee as to possible removal of the ILADS guidelines from the government’s then active National Guidelines Clearing House under HHS’s Agency for Healthcare Research and Quality (AHRQ).
The chronic Lyme deniers carefully choose their handpicked biased science often published in their own journals and loudly tout the over generalized Lyme treatment trial conclusions–all are sacrosanct. Their message is clear: No more research is necessary, and no one should question that, especially patients, advocates, and Lyme literate physicians.
Meanwhile, patients cannot get a timely diagnosis, an appropriate treatment, and as Delle Donne found out, a high risk designation. All this denial, yet CDC estimates from studies that there are 300,000+ Lyme disease cases annually in the US alone, and government admits some 15-20% continue to have symptoms. But is it Chronic Lyme? NO. Persistent Lyme? NO. What is it then we ask, 46 years later. Listen to the sounds… of silence.
NOTE: Although LDA President Pat Smith is an HHS TBD Working Group Member, this Blog does not express the opinions of HHS or the HHS Tick-Borne Disease Working Group.
For more information:
Contentious 9 Hour WG Meeting: Persistent Infection a Religious Belief? WG Co-Chair Says Yes
Pat Smith Describes Pre-Meeting Effort to Minimize Lyme.
Below in For the Record are the written comments LDA President Pat Smith, a public member of HHS TBD Working Group read (slightly compressed) into the record at the Working Group (WG) meeting on July 8 about the potential WG Chapter report for which she was responsible, the only one addressing patient issues. 89 written comments/deletions to the report had been suggested before the meeting by Working Group members. Working Group Co-Chair Dr. David Walker and Member Eugene Shapiro were responsible for moving to delete entire sections of Lyme material from the report, many of which called for the removal of much of the Lyme material and the de-emphasis of Patient Access to Care in the Chapter.
Co-Chair Says “almost religious belief that it’s a persistent infection”
At the meeting itself, Working Group Co-Chair, Dr. David Walker, and Member Eugene Shapiro made and seconded many motions to remove material from the proposed draft report including the two sets of guidelines, shared decision making, access to care, Lyme treatment trials, and cost of Lyme disease. There was also a discussion in which Shapiro and Walker wanted to remove Lyme mouse model studies and other animal studies that showed persistence that were included in the draft report, saying animal models were really not a good use for this infection.
Dr. Walker said there is “emphasis on belief…almost religious belief that it’s a persistent infection” and at various times said they probably didn’t have Lyme to start with. After many hours of this discussion, no other WG members would second the motions for removal.
For the record: The importance of today’s meeting and our Chapter review can’t be overstated. My Access to Care, Education & Training subcommittee including healthcare providers and patients, with expertise in the problems associated with patients’ access to care including physician education, submitted a 75-page subcommittee report and additional 45 citation pages documenting these problems to get help for a body of patients neglected especially those who develop the most serious stage of Lyme and to prevent acute patients from reaching that stage. Patients looked to this WG created through legislation initiated by, written by, and pushed through Congress by Lyme patients/advocates. In 2019 through now, 78% of comments to the online WG mailbox were about TBD/Ticks, 70% of those TBD comments were on Lyme disease and 81% of those were on chronic/persistent/PTL, not acute.
Before the January 2020 Working Group meeting, WG members were instructed to read each subcommittee report. Subcommittee co-chairs presented reports at that meeting. In my subcommittee case, since I had not had an active co-chair for a while, a subcommittee member stand-in, not permitted to vote or ask questions, was allowed to present with me a PowerPoint, including Subcommittee rationale and recommendations later discussed, modified, and voted upon.
Then, writing groups of 2 WG members each were solicited for each Chapter to be written for the WG report to Congress. The WG was definitively told that all information for the WG report had to be taken from the Subcommittee reports. I asked if newly published information, for example, could be used, was told, yes, but then the WG would have to approve that new material. Recently activated WG alternate member Captain Scott Cooper and I volunteered to write the Chapter we’re presenting today.
As directed, we pulled language from the subcommittee reports, submitted our Chapter for review and was told “well organized, appropriate to audience level, and it flowed logically,” but we needed to “rebalance” the chapter as there was too much information on Lyme disease and access to care than other tick-borne diseases and education. Suggested rebalancing included removing a factual table from CDC which listed TBDs for 3 years, in descending order of reported case numbers, as the table could “inadvertently diminish the importance of other tick-borne diseases because their numbers are much lower.” It was OK that we led with burden of disease (cost, quality of life, & productivity), compelling reasons for Congress to act. However, we should remove those items from our Chapter report background and put them into the background for the entire WG report, despite the fact they were developed specifically for our patient issues. Bottom line: minimize Lyme, reduce access to care.
We incorporated additional other TBD material from subcommittee reports into the Chapter and shortened the Lyme portion. We didn’t remove the table, since it factually portrayed reported case numbers, nor did we remove our background material germane for our specific patient issues. After another review submission, we were told the Chapter was “starting to become balanced” but now it was too long. We needed to shorten it. We again shortened to include removing the redundant list of recommendations upfront, already elsewhere in the Chapter.
All WG Chapter Writers had a deadline to post draft Chapters to a WG private Share Point site. WG members had a May 22 deadline to submit comments there on all chapters. All Chapter language was now up for grabs, we were told, even the language we took from the already discussed Subcommittee reports, not just new language. I objected, since that seemed to contradict process discussion at the prior meeting. Significantly, I objected to the lack of process transparency, which was directing these online SharePoint discussions to be behind the scenes–not WG members in public holding transparent discussion with all WG members, embodying the intent of a FACA Working Group. Time went by with no response to my objection, so I reluctantly decided to proceed with filing for resolution through a FACA complaint, but I was subsequently informed my concerns were heard, and all discussion would now be in public, as we are doing today so I did not proceed with the complaint.
While working in the private SharePoint site, I stumbled across an unknown person who had direct access to all Chapters and material in the site. Research showed me this individual was from NIH, not either the NIH Working Group member or alternate—another NIH employee, an attorney. Upon questioning the individual’s identity and purpose, I was informed NIH requested that that individual be allowed access to our SharePoint documents and was given access. It appears that government employee WG members have rights public members do not have, are not aware of, and do not have to be informed of. Since public members are considered special government employees, I requested to federal officials that I be permitted to have a patient advocate attorney in SharePoint to review for patient perspective. I was informed my request was denied by WG legal counsel.
These items coupled with others such as a WG member who did not attend being allowed to vote by proxy through the co-chair, without knowledge of the WG, and the unexplained delay in releasing these draft Chapters to the public prior to this meeting for their review and comments before the WG vote are concerning, and refusal to provide the public with government inventories as agreed to at the April meeting. I questioned those practices, which in my opinion, exhibit a disregard for the public, in particular, the patient community. History coupled with these practices reinforce the sentiments of many in the public that they are again being deceived by their own government.
As we move forward on our Chapter section now, note that our printed report has 12 pages with internal citations to address the decades-long problems of hundreds of thousands of Lyme patients plus other tick-borne diseases patients. Additionally, there are 7+ printed pages of comments from SharePoint made by WG members on our Chapter, a number of which call for removal of much of our documented material on Lyme disease─ a disease under-reported by a factor of 10 according to CDC studies and CDC testimony by Lyle Peterson to a Senate Committee, (1) meaning about 350,000 cases annually. According to NIH, Lyme is a disease that makes up 82% of tick-borne diseases, (2) and there were 74 Lyme deaths in 2017. (3) Thus, our Chapter focuses on the tick-borne disease whose patients comprise the largest burden of disease, Lyme disease. That is balance. Captain Cooper, I now turn further Chapter discussion to you.
(3) NIH says 74 deaths in 2017. NOTE: I had accessed this info prior and printed out the information. Link no longer goes to the page. NIH asked at the meeting where I got that death data as they could not find it anywhere. I have sent it to them.
Working Group to Discuss Lyme Patient Issues/Goodbye Dr. Spector/Claims Show 94% Lyme/Lyme & AFib/Rickettsia in NJ Ticks
94% Lyme, 6% Other Tick-Borne Disease Says Fair Health Claims Analysis
Fair Health, is “an independent non-profit that collects data for and manages the nation’s largest database of privately billed health insurance claims,” including Medicare Parts A & B. In December 2019, it published a white paper “Trends and Patterns in Lyme Disease, An Analysis of Private Claims Data. The Paper analyzed 30 billion privately billed health insurance claims to compare trends and patterns in Lyme disease with other tick-borne diseases. For 2018, 94% of claim lines for tick-borne diseases were for Lyme disease, 6% were for other tick-borne diseases. See the graph below for details.
Fair Health also made an expert presentation to the 2020 Training, Education, Access to Care, and Reimbursement subcommittee.
NOTE: Lyme Disease Association Inc. has permission from Fair Health to use the graphic below.
Rickettsia Found in New Jersey Ticks
The picture in New Jersey of spotted fever group rickettsiosis (SFGR), which includes Rocky Mountain Spotted fever (RMSF), is complex. In this latest study from the Am. Journal of Tropical Medicine and Hygiene (James Occi, Rutgers University, et al, ), the researchers tested American dog ticks and lone star ticks in NJ to determine which Rickettsia are found in these two NJ ticks. They did not find the Rickettsia for RMSF in either of those ticks; however, they did find other Rickettsia in those ticks.
James Occi is a member of the Lyme Disease Association’s Scientific and Professional Advisory Board. Thanks to him for below picture of Dermacentor variabilis, American dog ticks: female, male, and engorged female laying eggs.
Govt Agencies Deny Persistent Lyme at WG: Take Action Now!
ACTION Recommended by LDA: Make Your Voices Heard on Persistent Lyme to the Working Group Now! June 24th Deadline.
- Submit Comments (verbal or written) for the next meeting by Wednesday, June 24th
- Next Meeting held online, Wednesday July 8th
- Register for the online meeting
- View Agenda
History of Working Group (WG) Formation:
The 21st Century Cures Act, signed into law in 2016, called for the formation of a 14-member Tick-Borne Disease Working Group, to work under the auspices of the US Department of Health and Human Services (HHS). The panel would bring together representatives of various federal agencies, medical experts, scientists, and Lyme disease patient advocates. Together, they would strategize the best ways for the government to combat the huge public health threat posed by acute Lyme, persistent Lyme, symptoms, and other tick-borne diseases. Giving patients a voice in policy decisions that deeply affect them was an issue long championed by the Lyme community.
First Term of the Working Group – Success:
The Working Group was set up to last six years, reporting to Congress about its progress every two years. The first iteration of the panel, named in 2017, included three representatives of Lyme patients. The Working Group’s Report to Congress was submitted at the end of 2018, with generally good reviews from the Lyme community. It appeared progress was being made.
Current Term of the Working Group – Controversy:
Only one patient advocate chosen…. Things took a different turn in 2019, with the naming of the next panel. There was obfuscation, lack of transparency, and process irregularities from the very start. The Working Group’s membership wasn’t even publicly announced until less than a day before its first meeting on June 4. Only one patient advocate was chosen—LDA President Pat Smith. And, in a move that especially stuck in the craws of Lyme patients everywhere, the IDSA’s Dr. Eugene Shapiro was appointed as well.
Controversial IDSA doctor chosen for Working Group…. Dr. Shapiro is well-known for publicly mocking and belittling Lyme patients and their concerns, and for helping target the medical licenses of Lyme-treating doctors who don’t follow the IDSA’s Lyme guidelines, which he co-authored. He also has flagrant Lyme-related financial conflicts of interest that should have precluded him from serving on the Working Group according to the opinions of many people. (More than 38,000 people have signed a petition to remove Shapiro from the panel (see petition). Despite many inquiries, there has been no official response from HHS regarding the petition.)
Co-Chair announces enough focus on Lyme, must focus on other tick-borne diseases…. Also at that opening meeting on June 4, newly appointed co-chair David Walker MD—who is an expert in rickettsial infections, not Lyme disease—made a startling announcement. He said that the prior Working Group had spent enough effort on Lyme disease, and he thought the new group should put its energies elsewhere.
(Note: According to the CDC, 82% of the cases of tick-borne infection in the US are Lyme disease. Shouldn’t it get 82% of the group’s attention? Furthermore, the first panel was aware there were still many Lyme related issues to be further explored.)
Non-Attendee Votes by Proxy…. For example, at a two-day meeting in Philadelphia on March 3 and 4, Eugene Shapiro did not attend in person nor did he participate by telephone. However, when it came time to vote, Co-chair Walker cast votes on his behalf. Pat Smith questioned this and was basically told, “We checked. It’s allowed.” (Wait…what? Why have any debate at all if an absent panelist can pre-program his votes in advance?)
Agencies refuse to address persistent Lyme (Pat Smith strongly responds – see 2.5 min. video below)…. Also at that meeting, discussions edged closer to the controversial “elephant in the room”—the topic of persistent Lyme disease and the failure of US health agencies to adequately address it. Pat Smith pointed out that the CDC website only acknowledges acute Lyme disease. She said this leaves people who remain sick after beyond the early stages of the illness—along with their doctors—without any advice at all. In response, CDC spokesperson Ben Beard insisted, “The vast majority of Lyme disease patients are served quite well by the guidance we have on our website.” After representatives of several agencies echoed similar responses, here’s how Pat replied:
(Clip 2.5 min.)
(NOTE: Once viewed, hit your browser’s refresh button to view again)
Dennis Dixon, NIH, Ben Beard CDC, and Pat Smith responding:
The segment is about unsettled science, 2 guidelines, Lyme 2 different diseases, Lyme only in certain states….
(Clip 13 min.)
(NOTE: Once viewed, hit your browser’s refresh button to view again)
Pat Smith asking CDC are there 2 Standards of Care – CDC Replies No
(NOTE: Once viewed, hit your browser’s refresh button to view again)
Controversy continues at April 27th meeting…. The following month, the contentious issue of persistent Lyme disease again reared its head during April 27’s online audio meeting.
Below shows the agencies refusal to acknowledge persistent Lyme disease and need for treatment guidelines.
- A subcommittee put forth the following recommendation for a vote: Recommend that IF the CDC posts any Lyme treatment guidelines, that they include guidelines on persistent Lyme disease. Unexpectedly, five panelists abstained—which left five yes votes and 3 no votes. (One member was absent.)
- Remarks made after the vote seemed to indicate that the abstainers felt they had defeated the measure, because “yes” votes didn’t comprise a majority of panel members. But the Working Group found out abstentions don’t effect outcome of the yes or no total. So, the recommendation passed, 5-3.
- At that point, one of the abstainers announced that he wanted to change his vote to “no.” That request was denied. There was heated discussion about whether the panel could or should hold a re-vote on the matter. After a lot of back and forth discussion, two motions were made and seconded, one was withdrawn, and the second ended with a vote on whether to have a revote. That vote resulted in not overturning the original vote. The recommendation in the first bullet above stands.
Other Working Group Information:
Lyme Disease Association (LDA) Working Group Page
Health & Human Services (HHS) Working Group Page
LDo, TOUCHED BY LYME: Persistent Lyme a sticking point for TBD Working Group
Lyme Disease Association, Inc. thanks all the advocates who contributed to this page, especially Dorothy Leland.
The videos provided in the article are segments from the official Working Group meeting videos.
President's BlogDr. Neil Spector, Inspiration Extraordinaire, Passed Away
From LDA President Pat Smith’s Blog:
It is with great sadness that we in the Lyme community say goodbye to someone whose life was dedicated to helping others through his work as an oncologist and a researcher, Dr. Neil Spector.
Dr. Spector devoted his life to saving the lives of others, first through his work on therapies for cancer patients then his subsequent work on Lyme disease, using the knowledge he gained from his cancer work and from his personal experience with Lyme disease.
He suffered for many years from undiagnosed Lyme disease, a diagnosis that was not even considered in the state he was then in, Florida, where Lyme was not on the radar screen, thanks to government control over where Lyme exists in the US. While his search for a diagnosis was ongoing, he went from a marathon runner to someone who could barely walk 20 yards.
When finally diagnosed with Lyme, he was able to receive treatment, but it was too late for his heart. It had been severely damaged. He lived a number of years with 10% heart function. One day, he was told he had 72 hours to live without a transplant. He was able to get one, and that began a new chapter in his life. He now understood that the medical community in the Lyme world failed patients. They did so by adopting a dogmatic approach to Lyme that created an environment where hundreds of thousands of people, if not millions, heard: there is nothing wrong with you. If enough people tell you there is nothing wrong, eventually you say, maybe it is not Lyme disease. That perception was communicated to higher levels of government and funding agencies. Thus, there has been a lack of urgency about Lyme disease. People with Lyme are dying all the time and committing suicide. Dr. Spector understood and articulated these observations and truths to all those who would listen and to all those who should listen. (view his video below for his story & statements)
I knew him as the man he was, a kind, compassionate, knowledgeable human being, a doctor and researcher who cared for others–not as text book or laboratory specimens–but as real people who were sick and needed medical help, help he provided without the bias and callousness that millions have faced over the past 46 years in the world of Lyme disease.
The biased dogmatic medical science out there cost him and his family dearly. He understood that but took that understanding and turned it into something else, an opportunity to use the humanitarian medical science that he practiced to work on saving countless thousands of lives. He was never too busy to help a patient going through what he went through, sharing his insights on Lyme and heart transplants with patients and their families. He was always ready to share his knowledge with other researchers and physicians, and in 2018, he spoke at the Lyme Disease Association/ Columbia University Lyme conference on Applying the Lessons From Cancer Research to the Diagnosis and Treatment of Tick-Borne Diseases. He used his own life experiences to positively shape the world around him.
Goodbye Neil, we will miss you and the heartfelt dedication you brought to truly making the world a better place in which to live. We thank your family for sharing you with us and know that your life will continue to inspire others throughout the world.
Watch Dr. Spector in “Lyme & Reason” – Fox 5 News Lyme Special
Renowned Oncologist Neil Spector, MD shares his own personal story of his transition from doctor to patient, and how Lyme disease led to an emergency heart transplant.
Gone in a Heartbeat: A Physician’s Search for True Healing by Neil Spector, MD