In a riveting article (go to link above) STAT obtained Willy Burgdorfer’s documents found in his garage after his death in 2014.

 Approx. 4 min WBUR interview with Charles Piller, author of the link above.

What makes this crucial for MSIDS patients is his fascination and concern with Rickettsia helvetica, something he coined, “Swiss Agent.” The article poses an idea that doctors might be mistaking this infection for Lyme or that this agent could also be another co-infection complicating and confusing cases.

Rickettsia helvetica is known predominantly in Europe and Asia as relatively rare but linked to sudden deaths from heart disease. Other symptoms include facial palsy, deafness, meningitis, chronic muscle weakness, temporary paralysis, debilitating fatigue, severe headaches, and sarcoidosis.

There is no test in the U.S. for Rickettsia helvetica.

Burgdorfer discovered the pathogen in 1978 in Switzerland. The stacks of papers found in his garage indicate he meant to delve into it further with a prophetic note written in red on top of the stack that stated, “I wondered why somebody didn’t do something, then I realized that I am somebody.”

University of California, Berkeley, medical entomologist and Lyme expert, Robert Lane, states that Rh could cause clinical illness on its own or act with other pathogens worsening cases.

When the discovery of the cause of Lyme was reported in the journal Science in 1982, Burgdorfer identified Rickettsia in Lyme patients’ sera and ticks, but in the final article no mention of it was made.

Currently, the CDC is using molecular techniques on 30,000 sera samples from those with suspected tick-borne illness but will take several more years to finish. It is believed that if Rickettsia helvetica is there, it will be found.

Dr. W. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University, has identified 20 new viruses in ticks, using a process that could result in making tests affordable to patients. He also trying to get funding to include Rickettsia in his research.

We can thank Burgdorfer for contemplating all of this before his death and ultimately contacting Ron Lindorf to retrieve his boxes of research. Willy told him he wanted it available to people on the internet so they could read it for themselves. From there, Lindorf met with Kris Newby, the producer of “Under Our Skin,” the best primer on Lyme Disease out there.  If you haven’t seen this film, you need to now. It will explain all the reasons why we find ourselves in a medical quagmire. The sequel, “Emergence,” is just as powerful and offers much hope as it follows many patients through treatment to health.

Newby shared the documents with STAT, hoping that an independent report would be made.