Melissa Kaplan's
Lyme Disease
Part of the Anapsid.org Chronic Neuroimmune Diseases Information Resources for CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Countless people I meet through the local support groups, at doctors offices, on the phone and in online forums relate the same story, over and over again: they were told by various doctors, family members and, incredibly, county and state public health department medical and science personnel, that there is no Lyme disease--no occurrence of Borrelia burgdorferi--in California.

I don't know what these nay-sayers are smoking, but may I have some, please? Perhaps then I will be able to forget the existence of the following bits of data documenting that Lyme indeed has been rearing its teeny ugly mouthparts in California for decades. (Like, for instance, this CDC map.)

One serious drawback to the data you will find below is that the numbers are grossly understated since counties and states are using the Centers for Disease Control's epidemiological criteria as if it were a definitive diagnostic test. Since the CDC's epidemiological criteria ignores some of the most significant Borrelia-specific and -related bands on Western Blot tests, and most accepted standard medical texts (such as Medline, Merck, and others) don't even recommend any WB testing for diagnostic purposes, Lyme appears to occur rarely in California and the U.S, if you go by state and federal surveillance figures. Additionally, doctors and medical societies are using the CDC epidemiological criteria as if it were the ABC's of how to diagnose Lyme and many other TBI diseases. As a result, patients are grossly underdiagnosed and reporting almost nonexistent compared to the actual number of cases.

Merck states that there are 16,000 cases reported annually. The Lyme Foundation's conclusions are that only one out of every 10 cases of Lyme is accurately diagnosed. Thus, Merck's numbers are off by about 144,000 cases a year, based on the Lyme Foundation's figures. The researchers at the National Institutes of Health's National Center for Infectious Diseases concur:

"As with a majority of diseases reported through a passive surveillance system, Lyme disease is underreported. " (From Surveillance for Lyme Disease --- United States, 1992--1998. Kathleen A. Orloski, D.V.M., M.S., Edward B. Hayes, M.D., Grant L. Campbell, M.D., Ph.D., David T. Dennis, M.D., M.P.H. Division of Vector-Borne Infectious Diseases, National Center for Infectious Diseases. MMWR April 28, 2000, 49(SS03);1-11.)

In addition, the public health labs, at least in California, the run the B. burgdorferi IgM and IgG tests print, at th end of their results report, words to the effect of:

The diagnosis of Lyme disease must include careful clinicaI evaluation and should not be based only on the detection of antibodies to Borrelia burgdorferi. (County of Sonoma Dept. of Health Services Public Health Laboratory)

And yet, physicians look at a negative or equivocal IgM and IgG, and, completely ignoring the patients' symptoms, declare that they do not have Lyme disease.

The final total number of reported cases of Lyme in the year in the National Notifiable Diseases Surveillance System data for 2002 is 23,763, which would make the total new cases of Lyme disease not diagnosed properly or diagnosed but not reported to the CDC soar to 213,867. Even the California Department of Health's Lyme Disease Advisory Committee acknowledges, in the Minutes of their November 2002 meeting, that:

• Lyme in California is underreported by 20-50%,

• doctors are misusing the CDC epidemiological criteria, and

• it is inappropriate to state that Lyme is rare in California based on averaged data, as some counties have much higher rates of infected ticks, nymphs (and, thus, humans and other warm-blooded mammals upon which they feed and use for transportation) than other counties.

The disease becomes increasingly untreatable the longer it is left untreated or inadequately treated. The impact of the disease on the body is a gradual but sure degradation of all body systems and organ functioning. Failing to recognize borreliosis as the serious health threat that it is not only consigns all those currently trying to survive day to day with this devastating disease--one that increasingly isolates them from friends and families who don't believe they are really sick or that they really have Lyme--but consigns them to the ranks of those too sick to work, which puts increasing strain on social services, Social Security and Medicare.

I used to earn $80,000 a year (more, actually, if you add in the cost of my employer-paid health insurance coverage, paid parking, and other benefits), with a good chunk of my bi-weekly $3,115 gross pay going towards state disability, social security and other taxes, in addition to the state and federal income taxes I paid on top of all those payroll deductions. I've been sick for 14 years now, and unable to work for 11 of those years (as of this writing, in 2004).

And all that money I paid into social security? I get less than a quarter of my working monthly net salary, which barely covers rent and utilities, and does not cover the medical care I require that Medicare doesn't pay for. Yet still there are people, SSA employees included, who think that I would rather "sit back and be able to not have to work" rather than work for a living. If there is anything more likely to send a Type A workaholic into a mouth-frothing tirade, I have yet to figure out what it is. (Excuse me while I wipe the froth from my keyboard. To continue...)

With state and federal social services suffering yet another round of budget cuts and Social Security already nearly bankrupt, the more people who are sickened to the point of disability by this disease are people who will no longer be contributing their taxes to the national economy nor buying goods and services, like new cars, new homes, hew appliances, new furniture...nor will they be paying into Social Security to help pay the way for those who come after.

Add to the millions of people already disabled due to not being diagnosed or treated properly the 160,000-213,867 people a year who will be getting sick this year, and next year, and the year after that, and every year until there is a major change in the way this disease and the people who get it are treated.

The very people who are responsible for the public health are sentencing millions of people a year to a life of poverty, increasing ill health, andimpairing their ability to function and care for themselves.

Getting Infected The Old Fashioned Way
And then there are those people who get Lyme the old-fashioned way: sex and birth. Lyme, a spirochete like syphilis, is transmitted sexually. For some reason currently known only to Borrelia itself, men once again get off lightly in that it is much easier for a man to pass Borrelia to a female sexual partner than it is a female to a male partner (perhaps the reason is that Borrelia abhors a liquid and drills its way into the nearest tissue whenever possible - unless it is encysted, in which case it will float around for awhile). Either or both, however, contribute to the infection of fetuses, resulting in babies born already infected with Borrelia through placental transmission, or who get it through their infected mother's breast milk.

Faint Light
As grim as all of this is, the faint light at the end of the tunnel is that there are some health care practitioners who have come to recognize that Lyme disease and co-infections is not only real, but is really occurring outside of the northeastern U.S., and year by year, a few more doctors see the light. These are the doctors who learn how to interpret for themselves the incomplete Western Blot tests done by county health departments and other general labs, or skip them and the other tests that are listed in the many inaccurate 'authoritative' medical sources, turning instead to the more advanced testing methodologies.

But even if they order the right tests and interpret them correctly, many doctors stick to the ineffectual short-term low-dose antibiotic treatment protocols "approved" by the AMA and state medical associations, despite the fact that most of their Lyme patients, especially the ones who have been sick for years, often decades, do not respond to short-term low-dose antibiotics.

Some doctors do realize that short-term antibiotics are generally worthless, but are afraid to try the more aggressive long-term high-dose protocols developed by doctors who have far more experience treating Lyme patients, such as that outlined in ILADs New Treatment Guidelines for Lyme Disease, either because they are concerned about the effects on their patients (who can be monitored by regular visits, tests to monitor liver and kidney function, stressing aggressive probiotics and prescribing anti-fungals), or because they don't want the wrath of the state medical association, insurance companies and Medicare coming down on them.

The bottom line for people who are sick with Borrelia and other parasites that frequently travel with them from host to host (Babesia, Bartonella [cat scratch fever], and Ehrlichia) is that finding appropriate health care--from diagnosis through treatment--is nearly impossible for most patients across the U.S

Interesting final notes...

Characterization of Borrelia burgdorferi strains isolated from Ixodes pacificus ticks in California.
J Clin Microbiol. 1987 December; 25 (12): 2296–2301

In a survey of 1,714 adult Ixodes pacificus ticks collected in northern California, 24 (1.4%) were found to be infected with spirochetes that reacted with an anti-Borrelia burgdorferi polyvalent conjugate in direct immunofluorescence tests. Eleven isolates of B. burgdorferi from these ticks were characterized by monoclonal antibody, polyacrylamide gel electrophoresis, and Western blot (immunoblot) analyses. Ten of the isolates had molecular and antigenic characteristics similar to those of other U.S. isolates. One strain, cloned by limiting-dilution techniques, was different from any previously reported U.S. strain, but similar to reported European strains. The cloned strain, DN127-Cl9-2, did not react with monoclonal antibodies to Osp A and Osp B major proteins found in most of the U.S. strains. It exhibited an abundant protein with an apparent molecular weight of 25,000. [Full text of article...]

Disease-specific diagnosis of coinfecting tickborne zoonoses: babesiosis, human granulocytic ehrlichiosis, and Lyme disease.
Clin Infect Dis. 2002 May 1;34(9):1184-91. Epub 2002 Apr 4.

To determine whether a unique group of clinical and laboratory manifestations characterize certain major deer tick-transmitted human pathogens in North America, we compared the symptoms, short-term complications, and laboratory test results of New England residents who became ill due to > or =1 of these pathogens. Patients completed a uniformly structured questionnaire and submitted blood samples for serologic and polymerase chain reaction (PCR) testing after developing symptoms of Lyme disease, human babesiosis, or human granulocytic ehrlichiosis (HGE). Complete blood count with thin blood smear, PCR, and immunoglobulin M antibody tests helped differentiate the acute manifestations of these diseases. Physicians should consider use of tests designed to diagnose babesiosis and HGE in patients with Lyme disease who experience a prolonged flulike illness that fails to respond to appropriate antiborrelial therapy. (Additional text)

Additional Information
For a look at what can be found in the Sonoma County and California Departments of Health, and at the CDC, just follow the links below.

Sonoma County Public Health Division
Communicable Diseases, 1990-2000
Identifying Ticks That Carry Disease (Page 7)
Reportable Diseases and Conditions

California State
Note: all of the following require Adobe's PDF viewer

State Health Department Cautions Californians About Ticks And Tick-Borne Diseases

Lyme Disease Brochure (2002, updated 2004)
Note that this toes the CDC party line in terms of pervasiveness and treatment

Detection of Lyme Disease Agent in California Western Black-Legged (I. pacificus) Ticks

Update on the Epidemiology of Lyme Disease in California. Part I and Part II

Minutes, Eighth Meeting of LD Advisory Committee
(Note estimate of 20-50% underreporting on page 4)

California Physician Response to Tick-Borne Disease Questionnaire
(Note only 303 of 89,000 practicing physicians responded)

Feb 2004 CA Senate HHS Informational Hearing on Diagnosing, Reporting & Treating Lyme
(Includes speakers such as Raphael Stricker MD, Ron Keith from Marin-Sonoma Mosquito & Vector Control District, and noted author Amy Tan) Requires RealPlayer

Ticks Commonly Found In California (UC Davis)

Marin-Sonoma Mosquito & Vector Agency > Ticks

CDC Lyme Information
(Remember to take with large grains of salt...)
CDC Lyme Disease Home Page
Lyme Disease Epidemiology
State Health Departments - links to each state's health department

Emerging Research
Researchers find no safe place to sit in California tick-infested forest

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