Perhaps you’ve seen them while casually Googling for updates on HIV research. There are message boards on sites such as Planet Infowars, Questioning AIDS, and The Body that have extensive conversations about the cause of AIDS — from people who don’t think it’s HIV. One of the most frequent forum posters, Karen Lambert, is a chronic fatigue syndrome patient. Her belief is that her immune-deficiency condition is actually AIDS and that the causes of what she calls CFS/AIDS should be researched more carefully. Like others on internet message boards, she believes HIV is not the cause of AIDS; it's merely a “harmless” virus coincidentally found in AIDS patients.
“I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-negative AIDS, idiopathic CD lymphocytopenia,” she wrote in a March 2013 article on ThePeoplesVoice.org. “With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that CFS and HIV-negative AIDS are basically the same mysterious immune disorder.”
Because she doesn’t belong to any high-risk group Lambert doesn’t believe it’s possible that she got AIDS from HIV. She says that after a heterosexual sexual encounter, she became seriously ill “with what looks like the natural disease progression of AIDS. I can pinpoint exactly when I was infected with my 'chronic viral syndrome of unknown etiology' and because the 'acute infection' stage was so distinguishable, I can also pinpoint exactly when my undiagnosed pathogen left my body and infected yet another host.”
Lambert has spent nearly 10 years spreading her message of HIV-negative AIDS on the internet. She tracked progress for years on her blog. She even set up a petition on Change.org to shift funding from HIV research to CFS research. She’s had letters published on several sites and claims that leading researchers in government organizations — who, according to Lambert, would be unlikely to talk to reporters because they work at government agencies like the CDC — have been investigating her case. But are they?
In fact, we couldn't find a single doctor willing to go on the record about the concept of HIV-negative AIDS. Many are fatigued by arguing with HIV denialists. Others lack enough knowledge about idiopathic CD lymphocytopenia, what Lambert and fellow denialists call HIV-negative AIDS, to even comment.
While there are some laboratories studying idiopathic CD lymphocytopenia (ICL), such as Autoimmune Technologies in New Orleans, their research focuses more on the cause of ICL. Idiopathic CD lymphocytopenia is an autoimmune disease that presents many of the same symptoms as HIV/AIDS, but patients test negative for HIV. It does have a lower rate of infection than AIDS, is thought to have more than one cause, and presents differently than AIDS in a clinical setting. Patients with this form of what you could call HIV-negative AIDS do account for about 1 percent of all AIDS patients.
The cause of ICL may be unknown but barring Lambert's doctors coming forward to explain and test their theories in the scientific community, it’s unlikely the medical establishment is going to change their minds about the cause of AIDS anytime soon. Neither are the HIV-negative AIDS conspiracy theorists.
Editor's Note: As for Lambert's specific case, we may never know. After weeks of communication, Lambert cut off contact with our reporter, nor would she furnish her medical files or names of physicians who had treated her.
Katie Peoples is a freelance writer in San Diego, Calif. Follow her on Twitter @kpeeps.