The a link to the audio of the June 23rd show is here and a link to the introduction by Terrance McNally is here–the second one as you scroll down. I join the conversation in the last 20 minutes. The Under Our Skin folks and Dr. Horowitz were great. Write me and tell me what you think if you listen to it.lbjohnson@lymedisease.org
Lorraine
Does history repeat itself? Did you know that the initial CDC definition of AIDS did not include women? And, because it did not include them, women were not included in research and they were denied disability payments. So much for disease definitions just being about “surveillance”. It took them 4 years to change the definition and there were a lot of government hearings. Turns out the hearings were just for “show and tell”. Not real hearings intended to accomplish real things. Kind of reminds me of the IOM hearings going on right now. Here’s an interview from Maxine Wolfe in 2004 at ACT UP describing the scene. Let me know if you see any parallels here. I sure hope I don’t.
Ticks are the number one vector of disease in the US and are second only to mosquitoes worldwide. Ticks frequently take blood meals from small rodents like rats, squirrels, and mice, which carry diseases. Diseases they pick up from these blood meals may then be passed on to their next meal ticket–which could be you. So how many pathogens can a tick transmit? A recent study from China provides some answers.
This is Part 3 of a series on the Embers study of Lyme disease in non-human primates. As described in Part 1 of the series, the Embers monkey research study posed three questions: one regarding treatment of early disseminated Lyme disease, one regarding treatment of late disseminated Lyme disease, and one regarding the ability of the C6 to accurately detect infection. This part focuses on the first question–the ability of 28 days of antibiotics to eradicate infection in early disseminated Lyme disease. The 28 day treatment with doxycycline was intended to test the treatment recommendation of the Infectious Diseases Society of America (IDSA). The Embers study found that infection persisted in all monkeys treated with this protocol.
Patients think that the IDSA guidelines are harmful to their health because physicians, hospitals, and insurers rely on them to deny patients access to the care they vitally need to restore their health. Patients believe that the IDSA guidelines violate one of the cardinal rules of medicine, “First do no harm.” Depriving seriously ill patients of treatment is an egregious harm. But do the IDSA guidelines violate their own rules? Indeed, they do.
Here’s what I told the federal Tick-Borne Disease Working Group during public verbal comments at…
When I first became involved with Lyme disease, I remember wondering where the pharmaceutical interest was in the disease. Most of your double blind controlled trials are funded by the pharmaceutical industry. This means that if your disease is not on their radar, you’re going to have a long hard slog getting funding for studies on the efficacy of different treatments. Diseases that are on the agenda of big Pharma have a distinct advantage in evidence based medicine because studies, typically large scale studies, have been funded by someone with a dog in the hunt. In other diseases, the dog in the hunt may be overzealous, promoting treatments and selling drugs with little proof of effectively. But when a disease is neglected by big Pharma, the opposite occurs. Research simply isn’t done. And, that becomes a social justice issue when insurers and specialty societies deny patients access to care because research studies haven’t been funded and aren’t likely to be funded. Drugs are expensive to develop and research is expensive to conduct. Recently, GlobalDate releases a report that explains why Lyme disease is neglected and is likely to remain neglected by big Pharma.
