100 signatures reached
To: CDC
Open Letter to the CDC
The information presented on the CDC’s website is utilized by insurance companies to deny coverage of life-saving treatments. It is also used to prevent doctors from treating severe cases because of the limitation on the length of allowed treatment. The CDC states that these are not guidelines for treatment, but the doctors and insurance companies stand by the CDC’s recommendations for treatment of diseases. These may not technically be “guidelines,” but the medical community and insurance agencies view and use that as such. For that reason, the verbiage should be more inclusive of so-called “fringe” treatment protocols.
The conflicts of interest within the CDC are also a major concern to Lyme patients, as there is an open list of corporations that donation to the CDC each year. Within this list are multiple insurance companies that have denied Lyme disease medical coverage of patients. There are also several pharmaceutical companies that have conflicts of interest with Lyme pertaining to patents as well as attempted production of vaccines over the years. These companies risk losing large amounts of money should guidelines or vaccines not be promoted. It calls into question the science generated from the CDC and the impact this money has on the results of the research. Conflict of interest also extends into patents with those within the CDC, as there are known past directors who hold patents on aspects of Lyme disease, which once again is a blatant conflict of interest.
All this combined is contributing to the public and medical community’s nonchalant attitude of Lyme disease, which thus endangers the well-being of millions leaving them susceptible to chronic Lyme disease. This is further supported by the CDC’s archaic stance on two-tiered testing. The infectious agent of Borrelia Burgdorferi can take up to 28 days to grow in a blood sample, but yet the CDC proposes that one should trust the faulty Western Blot and ELISA (3-7day test) that may or may not show positive depending on the immune system’s ability to locate the bacteria and actually mount a response. It is also well known that the Lyme disease agent does not care for blood, using it only as a means of transportation when absolutely necessary. If one shows positive on a two-tiered test, they are most likely one of the sickest patients because the body is overloaded with the Lyme disease agent, but their immune system has not been compromised to the point where they can create antibodies. This negates all the patients whose immune systems are not strong enough to mount a response. These tests are also said to have close to a 50% accuracy rate, leaving many to believe they are negative when they are in fact positive. This puts the patient’s quality of life at risk because the organism can infiltrate the brain and heart causing significant damage. The CDC also states that the Lyme testing might falsely test point to Lyme disease, although it might be a virus. The science behind what Lyme is and how it could possible test as both a bacteria and virus should to be further examined based in findings by those within the Lyme community that point to a possible viral aspect to Lyme disease. If this information is known by this agency and is being ignored, this is unacceptable.
The verbiage on the CDC’s site is also misleading to physicians who wish to help their patients. The protocol is now 14-21 days of antibiotics based on symptoms that include the EM rash. It is well-known that many patients continue to feel sick for weeks, months, or years after the CDC supported treatment plan. The site also lists resources to discourage treating physicians from using long-term antibiotic treatments. However, where are the studies that involve patients with chronic Lyme who have shown improvement with long-term antibiotics, if the CDC site is truly an unbiased one? The doctors should be able to treat as they deem necessary.
We are demanding that the CDC include additional therapies for the treatment of Lyme disease if they truly are not guidelines for care. The information regarding the lack of accuracy of the Two-Tier Testing should also be clearly documented on the CDC’s site. With an estimated 300,000+ cases a year, the CDC has a responsibility to the general public and treating physicians, and to improve the accuracy of the information on their site which is utilized as guidelines for the treatment of Lyme patients.
The conflicts of interest within the CDC are also a major concern to Lyme patients, as there is an open list of corporations that donation to the CDC each year. Within this list are multiple insurance companies that have denied Lyme disease medical coverage of patients. There are also several pharmaceutical companies that have conflicts of interest with Lyme pertaining to patents as well as attempted production of vaccines over the years. These companies risk losing large amounts of money should guidelines or vaccines not be promoted. It calls into question the science generated from the CDC and the impact this money has on the results of the research. Conflict of interest also extends into patents with those within the CDC, as there are known past directors who hold patents on aspects of Lyme disease, which once again is a blatant conflict of interest.
All this combined is contributing to the public and medical community’s nonchalant attitude of Lyme disease, which thus endangers the well-being of millions leaving them susceptible to chronic Lyme disease. This is further supported by the CDC’s archaic stance on two-tiered testing. The infectious agent of Borrelia Burgdorferi can take up to 28 days to grow in a blood sample, but yet the CDC proposes that one should trust the faulty Western Blot and ELISA (3-7day test) that may or may not show positive depending on the immune system’s ability to locate the bacteria and actually mount a response. It is also well known that the Lyme disease agent does not care for blood, using it only as a means of transportation when absolutely necessary. If one shows positive on a two-tiered test, they are most likely one of the sickest patients because the body is overloaded with the Lyme disease agent, but their immune system has not been compromised to the point where they can create antibodies. This negates all the patients whose immune systems are not strong enough to mount a response. These tests are also said to have close to a 50% accuracy rate, leaving many to believe they are negative when they are in fact positive. This puts the patient’s quality of life at risk because the organism can infiltrate the brain and heart causing significant damage. The CDC also states that the Lyme testing might falsely test point to Lyme disease, although it might be a virus. The science behind what Lyme is and how it could possible test as both a bacteria and virus should to be further examined based in findings by those within the Lyme community that point to a possible viral aspect to Lyme disease. If this information is known by this agency and is being ignored, this is unacceptable.
The verbiage on the CDC’s site is also misleading to physicians who wish to help their patients. The protocol is now 14-21 days of antibiotics based on symptoms that include the EM rash. It is well-known that many patients continue to feel sick for weeks, months, or years after the CDC supported treatment plan. The site also lists resources to discourage treating physicians from using long-term antibiotic treatments. However, where are the studies that involve patients with chronic Lyme who have shown improvement with long-term antibiotics, if the CDC site is truly an unbiased one? The doctors should be able to treat as they deem necessary.
We are demanding that the CDC include additional therapies for the treatment of Lyme disease if they truly are not guidelines for care. The information regarding the lack of accuracy of the Two-Tier Testing should also be clearly documented on the CDC’s site. With an estimated 300,000+ cases a year, the CDC has a responsibility to the general public and treating physicians, and to improve the accuracy of the information on their site which is utilized as guidelines for the treatment of Lyme patients.
Why is this important?
Lyme disease affects 300,000+ people however only a little over 30,000 cases are officially reported. Many of these individuals have long term effects even after treatment. The Lyme community has called for more effective testing and treatment over the past 30 years, but that request has fallen on deaf ears. They are told that testing and treatment is effective even though research indicates otherwise. Change needs to happen, lives are depending on it. Sign this open letter and make a difference.