IDSA treatment guidelines
Diagnosing Lyme: Lies & half-truths
07/17/08 17:19 Filed in: Lyme Disease Diagnosis
It irks me to see inaccurate info about Lyme on health-oriented blogs. For example, I just read the sentence: "Lyme is completely treatable. No need to panic," and now I'm really bugged. No, I don't want everybody to panic. However, it's just such unfounded casualness about Lyme that creates the illusion that one needn't seek a Lyme aware doctor's advice right away, at the first suspicion of Lyme symptoms or the presence of a tick bite. There is absolutely no evidence that the person making the claim has any awareness of just how dangerous, and multi-stage, Lyme can be when left untreated.
The same blogger also cavalierly states that "a characteristic bull's eye rash will show up within 3 to 30 days." GRrrrrr! Not true. Up to 50% of people with a Lyme infection will never show signs of the circular, red skin rash. Diagnosing Lyme is a tricky thing, part art, part science. Even ILADS doctors differ in their approach to diagnosing Lyme. I skim the blogs like a watch-dog, looking for useful information. I'm vigilant. I can sniff out a lie about Lyme faster than you can say "neuroborelliosis."
How is the blog-skimming public supposed to become informed, with half-truths and lies circulating so freely? The mis-truths and misinformation all stems back to the opinion of the CDC -- in the form of the IDSA -- that Lyme is not a serious disease. I am really looking forward to following up on the results of the antitrust investigation into the IDSA's guidelines for the treatment of Lyme. Stay tuned. I'll be posting whatever I sniff out right here.
The same blogger also cavalierly states that "a characteristic bull's eye rash will show up within 3 to 30 days." GRrrrrr! Not true. Up to 50% of people with a Lyme infection will never show signs of the circular, red skin rash. Diagnosing Lyme is a tricky thing, part art, part science. Even ILADS doctors differ in their approach to diagnosing Lyme. I skim the blogs like a watch-dog, looking for useful information. I'm vigilant. I can sniff out a lie about Lyme faster than you can say "neuroborelliosis."
How is the blog-skimming public supposed to become informed, with half-truths and lies circulating so freely? The mis-truths and misinformation all stems back to the opinion of the CDC -- in the form of the IDSA -- that Lyme is not a serious disease. I am really looking forward to following up on the results of the antitrust investigation into the IDSA's guidelines for the treatment of Lyme. Stay tuned. I'll be posting whatever I sniff out right here.
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20,000 cases? Sorry, you're wrong
07/06/08 17:16 Filed in: Lyme Disease in the news
Dear ABC Good Morning America,
Thank you for running the story on Lyme disease. However, I would like to challenge your reporters on one point. The number of new cases of Lyme per year is said by Lyme specialists to be ten to forty times higher than the 20,000 quoted by the CDC, and the number used in your report. Gross misdiagnosis and under-diagnosis is due in part to the notoriously inaccurate tests for Lyme that are currently in use by most infectious disease doctors in the US. These tests are the Western Blot and the ELISA.
The Lyme compound consists of the spirochetal Borrelia bacteria, plus any number of mycoplasma parasites and other pathogens. This compound is a particularly stealth bacteria that is able to evade the body's immune system, therefore protecting itself from the attack of antibiotics by drawing up a shield around itself, and hiding in various cyst forms throughout the patient's body and brain. The common tests for Lyme do not account for the sophisticated nature of this bacteria, according to researchers at the University of New Haven, Dr. Alan MacDonald and Dr. Eva Sapi.
Another reason for the misdiagnosis is the fact that no two Lyme patients present symptoms in the same way. In addition, it is not known how long the bacteria may lie dormant.
The irksome fact that the process of writing the IDSA treatment guidelines have been found to be in violation of the law has created quite a stir with patients of this devastating disease. The most profound problem is the existence of two standards of care for Lyme, which directly affects patients' health insurance and coverage of long-term antibiotics. ILADs physicians have told me that there are thousands of scientific models proving that Lyme can go chronic if undertreated or left untreated. The IDSA has ignored that scientific evidence. This is the heart of the Lyme debate.
Thank you for running the story on Lyme disease. However, I would like to challenge your reporters on one point. The number of new cases of Lyme per year is said by Lyme specialists to be ten to forty times higher than the 20,000 quoted by the CDC, and the number used in your report. Gross misdiagnosis and under-diagnosis is due in part to the notoriously inaccurate tests for Lyme that are currently in use by most infectious disease doctors in the US. These tests are the Western Blot and the ELISA.
The Lyme compound consists of the spirochetal Borrelia bacteria, plus any number of mycoplasma parasites and other pathogens. This compound is a particularly stealth bacteria that is able to evade the body's immune system, therefore protecting itself from the attack of antibiotics by drawing up a shield around itself, and hiding in various cyst forms throughout the patient's body and brain. The common tests for Lyme do not account for the sophisticated nature of this bacteria, according to researchers at the University of New Haven, Dr. Alan MacDonald and Dr. Eva Sapi.
Another reason for the misdiagnosis is the fact that no two Lyme patients present symptoms in the same way. In addition, it is not known how long the bacteria may lie dormant.
The irksome fact that the process of writing the IDSA treatment guidelines have been found to be in violation of the law has created quite a stir with patients of this devastating disease. The most profound problem is the existence of two standards of care for Lyme, which directly affects patients' health insurance and coverage of long-term antibiotics. ILADs physicians have told me that there are thousands of scientific models proving that Lyme can go chronic if undertreated or left untreated. The IDSA has ignored that scientific evidence. This is the heart of the Lyme debate.