Dr. Ben Beard, PhD, Chief Bacterial Diseases Branch at the CDC, visited with Bay Area Lyme and invited guests as part of the foundation’s ongoing speaker series. This donor-sponsored forum brings together researchers and other experts in an intimate forum for topical discussions with community members. Past events have included Emerging Leader Award winners, clinicians, and patient advocates.
The next event, on Wednesday, March 2, will feature Dr. Christine Green, Director of Education for ILADS, and Allie Cashel, author of Suffering the Silence: Chronic Lyme Disease in an Age of Denial.
For more information, see Speaker Series.
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As Chief of the CDC’s Bacterial Diseases Branch, Division of Vector-Borne Diseases in Fort Collins, Colorado, Dr. Beard coordinates CDC’s programs on Lyme disease, plague, and tularemia. His scientific interests include public health and the biology, ecology, and genetics of insect-borne diseases and vectors. More recently, he has been extensively involved in the CDC’s work to understand and mitigate the potential impact of climate variability and change on infectious disease ecology. He shared the CDC’s concerns about the expanding disease burden and distribution of Lyme and affirmed the importance of attracting new research interest and efforts focused on Lyme disease and other tick-borne infections.
Here are some of the highlights.
- Expanding incidence and distribution — There has been a dramatic increase in the incidence and geographic range of Lyme infections across the US, now an estimated 244,000-444,000 infections per year, with cases reported in all 50 states and in almost every county in CA. This increase has been attributed to suburban reforestation, a substantial increase in the number of deer, the expansion of suburbia into native wooded areas, and dramatic growth in the number of ticks, all of which lead to substantially greater numbers of people in direct contact with tick habitats and exposure to tick-borne infections. Dr. Beard also spoke of CDC-affirmed Lyme fatalities — patients who suffered sudden cardiac death due to a condition called Lyme carditis, pointing to the severe public health risks at play with Lyme. Dr. Beard also spoke of the challenges in reporting and accurately estimating Lyme disease and acknowledged that the CDC’s methodology for documenting notifiable cases was particularly stringent, likely contributing to a substantial degree of underreporting and underestimation of the scope of the disease.
- Numerous research questions still to be addressed — More pathogens and conditions are being discovered (including the recently documented Borrelia miyamotoi, Heartland Virus (presenting primarily in the midwest), Bourbon Virus, and the even newer Borrelia mayonii. There are simply not enough scientists specializing in the field or active research to further our understanding.
- Safe and effective prevention tools are badly needed — There is not enough interest, understanding, or awareness among the general public on issues of tick control and disease prevention. Responsibility for tick control should be shared between homeowners and their local communities and will require effective collaboration among community members, officials, and health care providers.And the challenges of the continued acrimony and polarization among key stakeholders in the field.
Dr. Beard then went on to share CDC Lyme prevention goals and strategic priorities:
- Strengthen national surveillance and understanding of the disease risk and burden
(Including working with health officials to improve case definitions and reporting practices, providing increased funding for surveillance, and improving estimates of case counts and economic impact) - Identify, develop, and improve prevention and control practices, including new repellents and pesticides and the unveiling of a Lyme disease control “toolbox” summarizing methods of intervention from personal protection measures to host/carrier strategies (vaccines, baits and animal control measures). He highlighted promising new innovations by biotech firms like Evolva, which is developing Nootkatone, a naturally occurring citrus ingredient as a highly effective organic repellent against Lyme-carrying ticks.
The CDC’s recently released “toolbox” provides an overview of available control measures.” Courtesy of Dr. Beard. - Improve early and accurate diagnosis and treatment
(Supporting efforts to further the next generation of direct diagnostics (metabolomics) as well as continuing education for the clinical field) - Identify, characterize, and and prevent illness caused by the newly-identifed Borrelia species by funding new research — several new studies are already underway
- Collaborate with key partners to promote the use of effective prevention tools and strategies
(Cited examples included partnerships with the US Department of Health and Human Services (HHS), the EPA, and USDA as well as state and local health departments andrategies advocacy groups to align around communication and education strategies
We at Bay Area Lyme Foundation look forward to continued collaboration with the CDC and other Lyme disease community and research organizations in hopes of ensuring greater awareness, recognition, and investigation into the causes, prevention, and treatment of Lyme disease.
We are also grateful for the opportunity to expand the public dialogue around these important issues through informed discussion with leaders like Dr. Beard. Thank you!
One of the biggest problems with Dr. Beard’s comments is the chart of the Top 10 Notifiable Diseases specifically in this case Lyme. There are either 33,461 cases or there is 300,000 – it can’t be both. Dr. Beard’s acknowledgment that the CDC’s methodological practices are “particularly stringent” when it comes to “reporting and documenting notifiable cases” and that being a contributing factor “to a substantial degree of underreporting and underestimation of the scope of the disease” only establishes the fact that the CDC is culpable for the needless suffering and lack of public health disclosure. Primarily this [underreporting] is caused by the lack of reporting of bands 31 and 34 within the Western Blot that they themselves are using as proof of the infection and are utilizing them in their attempt to develop a vaccine. Thus, some who are affiliated with this attempt are protecting their proprietary rights.
The numbers provided by the CDC imply that only 11% of individuals are being identified and I would make the assertion that these individuals are most likely those with EM, actual tick attachment, or significant Bell’s Palsy. Additionally, to focus on climate variability and changes in infectious disease ecology is just another way of diverting important resources and efforts from actual identification and treatment of the disease and does not lend to ensuring that the public knows the truth.
Beard states, “There is not enough interest, understanding, or awareness among the general public on issues of tick control and disease prevention.” Nonetheless, if CDC is withholding information from the public, underreporting cases, undertreating suffers, and developing and enforcing guidelines that do not treat patients effective, then the American people will not rise up and say enough. They will not realize they are at risk. Therefore, the only way to eradicate Lyme and its co-infectors is first to bring the truth to the American people. If they do not know that they are at serious risk of infection there will be nothing to drive their support and demand for research and treatment. The reason why the average American has no understanding about Lyme is because, like all government organizations, they know that with all that occurs within the life of an individual, unless they become directly impacted, by the disease, they are focused on what is happening on what is happening to them and their families. Therefore, Beard is making an inappropriate accusation and defaming assertion against the American public.
Second, individuals who have a conflict of interest need to be removed from boards and panels that focus on identification and treatment guidelines for Lyme. If they are not eliminated this is nothing more than greed-generated science, because they are already patent holders and false guideline makers who eliminate the inclusion of more effective testing and treatment for their own gain by belittling those more effective measures through disparaging remarks not based on current research efforts of those who are further along in their study and treatment of this disease. The end result of this will be the continuation of public harm and the lack of acknowledgment of a potential pandemic. The only reason for the “secrecy” of this disease is the financial gain of those who are in control of the dissemination of information to the general public and medical practitioners.
Third, physicians and other health care providers, i.e. Neurologists, Endocrinologists, Rheumatologists, Infectious Disease Specialists, Internists, and PCP’s, should receive mandatory training in the identification and treatment of Borrelia and its co-infectors regardless of whether their practice is located in an endemic area. Quite frankly, although Beard’s focus is on the climate and ID ecology, it is more important to note the movement, migration, and change in human ecology than it is that of the ticks or other wildlife. If you don’t know where the person has been you have no idea what they have come into contact with because this is a vector-disease.
Fourth, important ignored areas of research and study need to be identified, such as perinatal transmission, sexual transmission, and bodily fluid transmission. To ignore these areas even though studies note their existence is incredibly worrisome and causes a serious public health concern. Further, the Red Cross, World Health Organization, and the “all-knowing” and seriously “conflict inflicted” Wormser note that Borrelia is in the blood and can survive to infect those who receive blood and organ donation. However, the thought remains if only 11% of individuals are being reported we are potentially facing one of the most serious public health crisis that country has ever experienced. The government, insurance companies, and the medical profession needs to wake up and realize that Borrelia infection (Lyme Disease) and its co-infectors are alive and well seeking whoever it can devour and ignoring it will only cause more pain, suffering, and cost for the American public.
To add to the above comment about cats and Bartonella, Maybe people have Lyme and Bartonella but the the Bartonella is predominant and that is why the test is negative for Lyme?? We need to test for Bartonella!! Ticks get on more than deer alone!
I believe what many people have that doesn’t show in the tests is Bartonella caused by ticks getting on cats before humans. My son is sick and tests are coming back negative after a tick bite. Headache, sore throat, no fever. Blood platelets are lower, but in normal range. Vit D level is 9 which means he is fighting something. He was put on a short course 5-day of a zpack thinking it was sinus and then he developed a twitching in calf that was visible and twitching non-visible in other places. I believe this is because a zpack makes your body fight the infection..autoimmune symptoms start? Neurologist and doctor are dismissing this due to negative Elisa. He goes to school in Duluth and deer come in the yard. We need help from someone! Infectious disease in Duluth refused to see him. Contacted the Dept of Health in MN they said that ticks are carrying Bartonella among other things. I am watching my son for a rash or lymph nodes or eye issues. With his second headache, he lost his peripheral vision for about 5 min on one side. Help!!! Nobody will help us!
Dear Jeanine, We are sorry to hear of your son’s sickness and wonder if you have tried seeking out a Lyme-specialist? Doctors who are more familiar with Lyme and related tick-borne illnesses like Bartonella might be better equipped to help diagnose your son. ILADS (International Lyme and Associated Diseases Society) maintains a searchable directory of Lyme-familiar physicians in most geographies. We also would suggest that you continue to carefully track and document all symptoms (when, how often or how long, severity, etc.), and take photos of any rashes to share with your doctor. Hopefully you will find some answers and resolution soon.
Prevention is first but getting doctors to understand how Lyme really works is so important. I just had a young intelligent doctor tell me that Lyme spirochetes do not stay in the body after they have been treated with a round of antibiotics. She also said that chronic Lyme is the result of the damage that the disease did to the body and not active Lyme. How can we get help when the Medical community does not acknowledge Lyme?
I have a friend suffering greatly in Ontario, Canada. It seems the family can’t find proper treatment. They are tired and need support. Is there any treatment available to cure or help? My friend was such a vibrant, loving, caring person who is succumbing to this dreadful disease. I hate seeing her suffer and watching her family struggle and feeling helpless, unable to get proper treatment here in Canada. Please help.
We are sorry to hear about your friend and would suggest contacting the Canadian Lyme Disease Association who would be best equipped to help. Their website is http://canlyme.com/. Best wishes.
We need all the help we can get out her to recover some of our lives back from this horrible disease. I have been DOWN for several years now and not sure if I will ever get my life back even close to normal. Thank you for your post and I hope it reaches the right people to get the wheels of our government moving to find a cure and cover the costs of our everyday needs………THANK YOU !
Absolute bologna…Lyme Disease is the fastest spreading disease in the world. A gazillion times more than all diseases combined. Lyme disease needs to be part of routine standard bloodwork and then we will all see that 90% of the population is walking around with Lyme or autoimmune disease caused by Lyme…PERIOD.
Having met and corresponded with Dr. Beard, I can tell you he is a consummate politician but as for making progress in addressing Lyme, not so much. His reasons for the increase in TBDs all have to do with conditions on the east coast, not here. I gave him that critique several years ago when he made a presentation at the LDAC public meeting. He has not corrected the problem. In fact, it is worse — look at the maps he now uses: California is cut off completely. There is zero recognition of Lyme and TBD deaths in my county (“no deaths have occurred in the last ten years”) and yet we have more dogs with Lyme than any other CA county. Meanwhile, a friend’s daughter died two weeks ago after suffering horribly for a dozen years. Dr. Beard may have talked a good game, but his actions speak louder.
Unfortunately, the acrimony Dr. Beard mentions is due to the failure of the government health agencies in handling tick-borne diseases, including Lyme. The CDC is actively preventing treatment of people who have been missed by the testing that they insist is the only way to detect Lyme in particular. If this was not pointed out to him during this session, then I am wondering why the kid gloves. The bodies are piling up.