Has Lyme been around thousands of years? Maybe. The spirochete responsible for Lyme, Borrelia burgdorferi was found in a hip bone fragment from the 5300 year old iceman discovered in the permafrost in the Swiss/ Austria Alps 2 decades ago. Illness attributed to the spirochete before the 1970s appears to have been rare; sporadic cases of a relatively mild disease were reported in Europe dating back to the 1800s. Lyme disease and its attendant spirochete were never know in the New World until quite recently, about 40 years ago. The epidemic, for no apparent reason, suddenly appeared in Old Lyme Connecticut the 1970s.
Cases of a new disease were reported to The Connecticut State Department of Health in 1975. The acting director of the Preventable Diseases Division in Connecticut discussed these cases with Dr. Steere and Dr Malwesta, rheumatology section Yale University of Medicine.
Why not the CDC?
At that time the CDC had something of a storied history. The CDC was founded in 1946 but initially was a small organization with a small staff of engineers and etymologists studying malaria in war torn areas. Epidemiology was added in 1949. Disease surveillance became the cornerstone of the CDC’s mission. With the Korean War the focus changed to bio-warfare. The Public Health Service merged with the CDC in the late 1950s and the CDC took over the Tuskegge study which observed the effects of untreated syphilis on black males. The CDC underplays this on their website, defensively mentioning the words television and the media. The CDC touts its successes: polio, immunizations, small pox, Legionnaires disease, toxic shock syndrome and HIV/AIDS. Lyme is not mentioned.
In the mid-1970s, instead of involving the Federal Government, an acting director in public health sought the advice of Dr. Steer, a rheumatology fellow, a doctor still in training.
In the initial report 39 children and 12 adults in Old Lyme and East Haddam were reported to have what was described as mild arthritis. Cases mostly occurred in rural and wooded areas. Half the patients had only joint pain while others also complained of fever, headaches, weakness and a rash. An unusual skin lesion was reported in one quarter of the cases. The cause was unknown and thought to be a virus.
Where did it come from?
Historically, many diseases have jumped from one continent to the next; imported by humans. Syphilis was imported the Americas along with Christopher Columbus and other conquistadors from Europe in the late 15th century with devastating consequences. The even more devastating plague of smallpox, another “gift” from the “old word” to the New World was yet to follow.
We do not know the origins of Lyme although there is much speculation.
Local state departments and the CDC continue to deny the existence of Lyme disease in various locations. I am now seeing a cohort of Lyme patients from central Florida. I have patients who have contracted Lyme disease in such heretofore unlikely of places such as New Mexico.
We have a pretty good idea of how Lyme is spread from one community to the next. Migratory patterns of a wide variety of birds. This mode of transmission has been very efficient.
Seventy five percent of new cases are associated with a rash according to the CDC? The CDC case definition emphasizes the presence of EM rash causing a bias in this manufactured number. The earliest data presented here show that only 25% of patients with acute Lyme recalled a rash. This suggests that no more than 25% of patients with acute Lyme disease present with a rash – not 75%.
Unfortunately, as I hear over and over again for my patients, poorly informed physicians tell patients they cannot have Lyme disease since they never had a rash.
I sense that the CDC suffers with an identity crisis. What is its mission? Surveillance. Epidemiology. Disease prevention. Aiding doctors in the management of acute and threatening epidemics. Medical research. Coordinating research with NIH. Working with other strategic partners. The CDC has a lot on its plate and seems to be understaffed. What is the basis for its alliance with the Infectious Disease Society of America? Are the IDSA guidelines evidence-based? Are they peer-reviewed? The IDSA guidelines are opinion driven, steeped in politics and certainly not peer-reviewed by any outside organization.
The NIH is still busy doing research on this 40 year old, new and emerging and most controversial disease -- how can the CDC pen guidelines written in stone? How can these guidelines be used to deprive physicians of medical licenses and deprive patients of access to care?
Sweeping generalizations have been made of the basis of limited studies with tiny numbers of patients through of the eyes of a few biased, academically linked researchers with an axe to grind.
We do not know the true incidence of the disease. We do not know how many cases are chronic. We know even less about other tickborne coinfections. Very few physicians have ever heard of Babesia duncani, yet it appears to infect as many as one in three patients with Lyme disease -- not to mention new and emerging species of Bartonella many of which are yet named. The 40-year-olds of today are the first generation of America who suffer with more fatigue, joint pain, disability and impaired quality of life than their parents. What truly is the scope of this hidden epidemic, swept under the rug?
And then finally one must ask the questions: who is running the mental hospital? The inmates? Where does this leave all the patients who are yet unable to find answers and frequently greeted with hostility from the very health care providers who should be providing them sympathy and support?