Posted 6 months ago on Jan. 14, 2014, 3:31 p.m. EST by LeoYo
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From AIDS to Lyme: Will We Let History Repeat Itself?
Tuesday, 14 January 2014 09:59 By Jessica Bernstein, Truthout | News Analysis
We're here because this government has the resources to deal with the AIDS epidemic and they won't do it unless we force them." - ACT Up activist protesting the FDA,1988
"I am one of the 300,000 plus annual Lyme patients being ignored by the CDC and HMOs." - Lyme disease activist protesting online as part of the "We are the 300,000" movement, 2013
Anyone who lived through the AIDS epidemic of the early '80s will never forget the unimaginable devastation that was inflicted upon an entire generation of people. But too many Americans younger than 40 have little knowledge of this profound chapter in American history or the revolutionary struggle waged by AIDS activists to propel the disease into the national spotlight and force government officials to address the mounting epidemic.
David France, director of How to Survive a Plague, the Academy Award-nominated documentary about AIDS activism, explains how initially the epidemic was completely ignored:
It really is hard to remember because it seems so improbable that a disease could wash into our country and be ignored politically the way this one was. One would have assumed that an apparently infectious disease would get responded to by public health authorities and politicians with some urgency and that just was not the case. And so what went from 1981 as an infection in 41 people that we knew of, since then was allowed to grow into a massive and global pandemic.
After years of government neglect of the AIDS crisis, which to this day causes almost 2 million deaths worldwide, one would think that health officials would have learned from their mistakes.
But some would say that history is repeating itself with Lyme disease. And Dr. Marc Conant - who was at the forefront of the AIDS movement - is one of those people.
Dr. Conant was one of the first physicians to identify AIDS in 1981 and is founder of the SF AIDS Foundation. He is also one of the few people from the AIDS movement to have crossed over into the Lyme disease struggle.
Dr. Conant got involved with Lyme when he began noticing that the medical establishment did not believe in "chronic Lyme disease" - a term used to describe the notion that the Lyme bacterial infection can persist past the recommended 2 to 4 weeks of antibiotic treatment. He also heard it implied that patients who believed that they had chronic Lyme disease were crazy.
Having lived through the early years of the AIDS epidemic, where patients were dismissed as criminals who were being punished for sinful behavior, Conant was primed to question notions of "crazy" patients. He began attending Lyme disease conferences and saw that there were indeed patients who continued to be very ill despite treatment - and they clearly were not crazy.
As Conant learned more about the disease, he realized that there were striking parallels between the struggle faced by AIDS patients and the battle being waged by those suffering with Lyme:
"Both diseases have introduced an unexpected paradigm into medicine. In the early '80s, the medical establishment thought they knew everything about infectious disease, so when AIDS came along, researchers insisted that it could not be an infection. Instead, they assumed that the symptoms must be due to environmental factors such as sexual practices or recreational drugs."
Similarly, with Lyme disease, the medical profession has been holding fast to the belief that persistent symptoms beyond the recommended treatment can't be due to an ongoing infection. The prevailing belief is that symptoms must be the result of residual damage to the immune system or are psychosomatic.
However, just as with AIDS, where there was a parallel model for the behavior of the AIDS virus in Hepatitis B, there are multiple examples of persistent bacterial infections, such as Mycobacterium tuberculosis, Salmonella typhi and Burkholderia pseudomallei. In addition, some of these illnesses are known to require aggressive antibiotic therapy for up to 9 months.
Yet, because of the historical belief that the Lyme infection is always eradicated with a 2 to 4 week course of antibiotics, researchers have remained frozen in their stance that there is no such thing as a persistent infection. Consequently, almost none of the government-funded studies are examining the crucial question, "Can this bug really survive?"
Resistance to looking beyond traditional notions of infectious disease patterns compromised public safety back in the '80s and is compromising public health today. While Lyme disease is not killing patients at the mass rates AIDS did, as singer Daryl Hall (Hall and Oates), who has neurological Lyme, explains, "It can make you wanna die if you're not dead."
Daryl Hall and Amy Tan have been two of the most outspoken celebrities with Lyme trying to get the general public to understand that everyone is at risk for this disease, which can cause crippling neurological and physical symptoms.
Tan, who has late-stage neurological Lyme, describes her case as typical. Prior to treatment, she experienced hallucinations; horrible nightmares that caused her to lash out violently; difficulty speaking; memory problems that led her to become lost in her own neighborhood; neuropathy; and severe fatigue.
Tan says that her symptoms became 85 percent better after a year of IV antibiotics - as opposed to the recommended 2-to-4-week course. She also felt it was necessary to continue treating her illness with antibiotics for many years.
Daryl Hall, whose wife and two stepchildren also suffer from the disease, feels that the lack of recognition of chronic Lyme by the Centers for Disease Control (CDC) is "almost a bad joke" to anybody living with the illness:
Right now, the prevailing "wisdom" is: Give someone [Doxycycline] and hope for the best. And that does not work. It works with some people in some cases . . . But for, I would say, probably the majority of people, that is not the answer.