Ticks are nasty little buggers.
By Dr. Mike Dostrow
“Doctors are men who prescribe medicine of which they know little to cure diseases of which they know less in human beings of which they know nothing.” -Voltaire (1694-1778)
Around mid-May, I receive a call from Jack Lunch asking me to write an article about Lyme disease. I respond by emphatically stating, “Jack, there is no Lyme disease west of the Rockies.” So he says, “Doc, I beg to differ with you, but there are quite a few people with Lyme disease right here in the Eastern Sierra.” After reprimanding him for having the audacity to question my clinical acumen, I told him I would look into it. Beware of absolutes and arrogance in medicine. Indeed, Aesculapius and Hippocrates would soon conspire to teach me this lesson rather poignantly.
Two weeks later my beloved wife came home from work with high fever, severe body aches and headache. As these are common symptoms of the flu I treated her appropriately prescribing rest, fluids and Tylenol for fever and body aches. After two days, as her fever waxed and waned but her headache progressed to severe and unrelenting, I became much more concerned. By day three, as her headache became the “worst in her life” and she was unresponsive to all my remedies, I decided that it would be prudent to visit our local E.R. to rule out a brain tumor or bleeding with a CAT scan. The good folks at Mammoth Hospital treated us well and complied with my request to image her brain, which was present and without obvious pathology. They controlled her pain with overpriced opiates and we went home where she got a well-deserved good night’s sleep.
Unfortunately, her symptoms only temporarily abated, and over the next two days her misery worsened. High fever, severe headache, weakness, nausea, muscle aches … a cornucopia of symptoms were cropping up seemingly by the hour. On day five of her illness, I had to descend to SoCal for an emergent business matter. When I called to check in on her, I knew by her voice that it was time to return to the hospital.
When I reached the fine physician on call, I said, “She has encephalitis [swelling of the brain]. I don’t know why, but she is not leaving until you know what’s wrong with her.” He said he would do his best. Several anxiety-ridden hours later, I received a call stating that my wife was afflicted with a rare condition known as relapsing fever, which is coincidentally a distant west coast relative of — you guessed it — Lyme disease.
Thus my story comes full circle. As payment to the gods of medicine and as penance, I must pen a primer on tick-borne diseases both for my review and the reader’s edification.
Ticks are a familiar nuisance to any traveler in the wilderness or inhabitant of rural areas. They have few natural predators and inhabit a variety of biomes. As vectors (communicators) of disease they are second only to mosquitoes worldwide (see my story “Of Mosquitoes and Men”). In the U.S., however, they transmit more disease than any other beastie. Ticks usually attach to their unsuspecting victim in grassy or wooded areas and immediately inject a variety of substances from anticoagulants to anesthetics in order to facilitate their blood meal. Inadvertently multiple pathogens can be introduced into the host. Bacteria, viruses, et. al. dwelling within the parasite itself can cause a great deal of problems for the person to whom they are attached. In the U.S., ticks cause a variety of disease but only a few are worthy of mention in this brief review. Bottom line: what is the tick’s conceivable purpose in the ecological scheme of things? Got me, but they sure are nasty little buggers.
The disease was at one time limited to the middle and upper portions of the east coast, but is now seen, albeit far less frequently, in California and other parts of the west coast. The disease is named after the town of Lyme, Conn., where a 1975 outbreak of juvenile arthritis was eventually linked to the bacteria Borrelia Burgdorferi. Transmitted by the deer tick Ixodes scapularis (dammini), this disease is now the most common tick-borne disease in the Northern Hemisphere.
Although the overall frequency is unknown it is estimated that approximately 10,000 cases of Lyme disease occur annually with 99% occurring in the northeast and Midwest and between the months of May to August.
Lyme disease is an affliction that affects multiple systems and occurs in three stages. Briefly, stage one involves a characteristic rash known as erythema migrans that very often resembles a target. This unusual rash occurs within one week of the initial tick bite and can last as long as a year if not treated. Stage two occurs when the bacteria starts invading the rest of the body causing a plethora of problems. Fever, fatigue, malaise, headache, and swollen, tender lymph nodes, are just a few of the symptoms that can be expected. This stage can also involve severe musculoskeletal, cardiovascular and nervous system manifestations and is often confused with other terrible multi-system disorders. After a year or so the third stage is characterized by debilitating arthritis and nervous system involvement.
Diagnosis of Lyme disease is difficult as it is not always visible in the blood and no test exists to make a definitive diagnosis. The initial rash can help in making the diagnosis. Treatment with antibiotic therapy can be effective at shortening the duration of Lyme disease but even with treatment long term symptoms can occur.
As its name implies relapsing fever causes a recurring high fever, which can be confused with other flu-like illnesses. Caused by a relative of the bacteria responsible for Lyme disease, relapsing fever is not as severe but can cause significant problems. Severe headache, weakness, chills, nausea and vomiting are common and make the diagnosis difficult. In fact, the only way to make the diagnosis is visualizing the bacteria in the blood under a microscope. That’s how the stellar folks at Mammoth Hospital made the diagnosis in my wife’s case!
The tick, which carries Borrellia hermsii is a soft tick of the species Ornithodorus. Unlike deer (hard) ticks, these buggers are virtually undetectable, feed briefly and at night and usually leave no signs of a bite. Incredibly, they can go many years without a blood meal — making them a formidable foe. This form of relapsing fever can have long-term musculoskeletal and cardiovascular sequelae, but is rarely fatal. Like Lyme disease, relapsing fever is treated with antibiotics but usually has less long term problems. The most fascinating aspect of relapsing fever is the bacteria’s ability to change its structure making it difficult for antibodies to mount a response and accounting for the recurring and relapsing nature of this disease. In Borg terms, “Resistance is futile!”
Other tick-borne illnesses exist, but will be listed for the sake of brevity and sanity. Rocky Mountain spotted fever, Eastern spotted fevers, Q fever, Colorado tick fever and Tularemia are just a few.
Some precautions you can take to avoid tick-borne illnesses: Wear protective clothing such as long pants (tucked into boots or socks), long sleeves and a hat in tick-prone areas. Insect repellents such as DEET and permethrin are effective deterrents, but permethrin is a better choice. Regularly inspect for ticks and remove them by grasping them closely to the skin with a tweezers, pulling with steady pressure without crushing or squeezing the body. Disinfect after removal. If bitten, keep the tick and seek the advice of your friendly neighborhood medical professional.
For more on ticks and the disease they carry visit www.CDC.gov.
I personally know of 5 local eastern sierra residents with lyme, and there are at least 500 new cases reported in CA every year. It is estimate that the CDC under-reports lyme cases by a factor of 10.
If Mr Dostrow would like to check his facts, I suggest he view the documentary “Under Our Skin” (http://www.underourskin.com/film.html) and review the following websites:
Hi Dan …
Thanks for writing in, but I’m confused … are you taking issue with Dr. D? Why would the CDC “underestimate” its reporting. Dostrow uses his journals and other medical references for his columns. What source are you using for your assertion about the CDC?
It is well known in the lyme community that the CDC grossly underestimates lyme cases. If you’d like to know why, check out the sources I’ve listed above or watch “under my skin”. The misdiagnosis, inadequate testing, under-treatment, and under-reporting of lyme cases by the non lyme-literate medical establishment and insurance industry in this country are a travesty. Most lyme sufferers are forced to find treatment on their own and out of pocket. If you’d like to know why this is watch the documentary or check out the ILADS website: http://www.ilads.org/lyme_disease/about_lyme.html
Amazing, among several problems I could comment on, the sheer ignorance regarding Lyme is beyond description. How ANY physician isn’t aware of the prevelance of this illness speaks only to a lack of interest in keeping up with recent trends. Yikes. At least a mea culpa was offered. I pray his wife recovers fully and doesn’t have a flare, othetwise we’ll get another mea culpa about how he didn’t know that chronic ABX can help.
I have your back, Dan. While I appreciate The Sheet’s efforts to raise awareness of Lyme Disease, they still seem to dismiss the fact that it is a real concern West of the Rockies. California is ranked 14th in the entire nation for reported cases of Lyme Disease in 2005 (lymedisease.org.) According to the Center for Disease Control, on average only 10% of all cases of Lyme are reported (lymedisease.org).
I would hope that The Sheet would do better research in the future on their articles and look at research that is most up to date dealing specifically with Lyme Disease (such as lymedisease.org, igenex.com, ilads.org to name a few). Not an organization that studies a wide array of other diseases such as the CDC and IDSA.
I too am living in Eastern Sierra suffering with Lyme Disease. I got it while recreating in Southern California. My doctor in Mammoth had never seen anything like what I had in her practice of 20 years. There was sheer ignorance all around by local doctors following CDC protocol. If I wouldn’t have found a “lyme literate” specialist, I would probably still be misdiagnosed and on my death bed.
As a physician, I am always amazed at the capacity for reasonably intelligent people to accept anything that appears on their computer screen as fact. The Centers for Disease Control are the universally recognized authority on the distribution, epidemiology,etiology and incidence of of most communicable diseases, including Lyme Disease. It is ridiculous to assume that a politically neutral, scientifically motivated agency would under-report the incidence of any disease. Beware of flawed sources for it will lead to inaccurate conclusions.
Ed. Note: Sheet staffer Andy Geisel tried to verify Dan’s claim of 500 new cases of Lyme annually in California and was unable to do so. His sources, Mono County and the state of California, showed 660 cases documented in an 8-year period between 2000-2008.
He also found that there is a considerable amount of controversy in the medical community as to how the disease is diagnosed and documented, particularly as concerns some of the labs that doctors are using for their diagnoses.
According to Geisel, Dr. Rick Johnson, Mono County Health Officer, further said that most of the cases of Lyme in the state are found generally in the northern and coastal regions. In terms of Lyme, the first question to ask seems to be whether the person infected came from somewhere previously where the tick/disease combination can flourish. Documenting a case of Lyme in Mono County that can be proven to originate here is difficult at best, in large part likely due to the very dry climate, which may not be conducive to either the tick or the disease, let alone both. In Mammoth Lakes, for example, it may be practically impossible; fleas and ticks are virtually unheard of on dogs and cats at 8,000+ feet.
Here is program for physicians interested in better diagnosis and treatment of lyme disease:
As for the the under-reporting, under-treating, and misdiagnosis of lyme, here is a portion of a documentary you might like to check out:
The remainder of the clips, or better yet the “under our skin” documentary itself can be a real eye-opener for those new to lyme.
Info regarding lyme cases in CA:
Thanks so much for keeping this issue on the front burner. The many local lyme sufferers (both diagnosed and misdiagnosed) and those at risk (everyone who goes outside or is around animals) stand to benefit from this. This could very well save local lives.
All due respect, the CDC itself does not claim to count ALL the cases of Lyme disease. They estimate that the surveillance case definition captures 10% of the reportable cases. They even say that they are not interested in counting ALL the cases, but in chasing new outbreaks and locating hotspots. CDC epidemiologist Paul Meade has been quoted saying CDC numbers account for only about one in ten of all actual cases. ((NJ) Herald News – Lyme: Battles with Illness, Emotions, Insurance Companies Jessica Adler 5/4/04)
Other sources of this information include:
* CDC MMWR May 2004 6-12 fold underreported is some areas
* MMWR April 2000 CT & MD studies est. 7-12 unreported for every reported
* Emerging Infectious Diseases March-April 2000 actual number may be 10-fold higher
Cases may not be reported for other reasons. Boltri’s study showed that doctors were diagnosing 40 cases for each one counted by the state health dept. in his state (state health depts forward cases to CDC). ( Boltri et al. Patterns of Lyme disease diagnosis and treatment by family physicians in a southeastern state. J Community Health. 2002; 27(6): 395-402)
In California, a single lab reported these numbers:
2005 (Sept – Dec) = 401
Reported by Cal. DHS to CDC = 27
2006 (Jan-July 1) = 435
Reported by Cal. DHS to CDC = 21
This particular lab been challenged and aggressively investigated several times and always passes with flying colors. In addition, they are approved by CLIA and by the state of NY, which has the most stringent requirements. It depends whose information you trust and whether you understand the motivation behind undercounting cases.
The major flaw of the CDC case definition is their reliance on the insensitive two-tired screening test ELISA with confirmatory Western Blot.
The College of American Pathologists found that
• commercially available FDA-approved kits are only 36-70% sensitive;
• the ELISA assay does not have adequate sensitivity to be part of a two-tiered approach to diagnosis.
(Bakken et al., J Clin Microbiol 1997; 35(3): 537-543.)
In 1996 the NY Dept Health found CDC’s two tiered testing missed 82% positive Lyme cases. (DeBuono, B. NY Dept of Health report to CDC April 15, 1996.)
CDC’s own C6 could obtain a sensitivity of only 70%. This is not acceptable sensitivity for a first test of a two-step sequence. (Bacon, RM, et al. Serodiagnosis of Lyme disease by kinetic enzyme-linked immunosorbent assay using recombinant VlsE1 or peptide antigens of Borrelia burgdorferi compared with 2-tiered testing using whole-cell lysates. J Infect Dis. 2003 Apr 15;187(8):1187-99.)
In 2005 a John’s Hopkins study found CDC two-tiered testing missed 75% of positive Lyme cases. (Coulter, et al., J Clin Microbiol 2005; 43: 5080-5084.)
This information is available on the internet, which is a valuable resource if you know how to use it. As mentioned before, you also have to decide whose information to trust, and we may have to agree to differ there. We know, for instance, that the CDC surveillance case definition includes specific requirements for certain “bands” to be present on the confirmatory western blot. If you don’t know the story, you won’t realize that 2 major bands were excluded, bands so specific for Lyme disease that they were used for vaccine development – bands known as kDa 31 and 34, or osp (outer surface protein) A and B. Which is the reason they were excluded – people who had been vaccinated would all be positive for those bands and falsely positive on tests.
However the vaccine was withdrawn under threats of class action lawsuit due to adverse effects, and so there is no reason to continue excluding these two key bands. Yet the rule remains, and is part of the reason the testing has such a poor track record.
The case definition is not based on science, but was designed to promote commercial interests. I’m afraid CDC is far from politically neutral. I am not assuming anything, I am looking at a long track record that is available to anyone who digs deep enough.
For the record, I lived in Mammoth Lakes proper for 20+ years, hiked the surrounding fields and mountains and regularly found ticks on our dogs. Unless things have changed dramatically since I lived there, it is erroneous to say, ” fleas and ticks are virtually unheard of on dogs and cats at 8,000+ feet.” I acknowledge, however, that the ticks we found were not ixodes pacificus, which is the primary tick known to carry Lyme disease. I always thought ticks were large, like the dog ticks, so we never looked for smaller ones. After moving to Trinity County, a county where Lyme disease is indisputably endemic, I learned much more about Lyme disease.
The criteria used by the CDC for accepting cases of Lyme disease is strict for the purposes of surveillance, and based on “uniformity, simplicity and timeliness.” Unfornately, Lyme disease is not a simple disease and the CDC website itself acknowledges that “Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement.” It sure sounds to me like that is an acknowledgment from the CDC itself that valid Lyme disease cases could be excluded by the CDC reporting criteria.
The strictness of criteria for surveillance purposes, unfortunately, can result in under-reporting.
“As a physician, I am always amazed at the capacity for reasonably intelligent people to accept anything that appears on their computer screen as fact. The Centers for Disease Control are the universally recognized authority on the distribution, epidemiology,etiology and incidence of of most communicable diseases, including Lyme Disease. It is ridiculous to assume that a politically neutral, scientifically motivated agency would under-report the incidence of any disease. Beware of flawed sources for it will lead to inaccurate conclusions.”
As a patient who has suffered from this wretched disease I am always amazed at the narrow-mindedness among the medical community. I invite any doctor who doesn’t believe that Lyme exists as profoundly as it does to visit with those patients who are suffering or who are fighting and their loved ones. I invite you to be a pioneer (so-to-speak) in expanding awareness and treatment of this horribly debilitating illness. Sadly, you’ll like just continue to be a follower.
Does it matter so much where the disease was contracted as much as the fact that it EXISTS and people are fighting for their lives because so many doctors are illiterate and close-minded when it comes to it??
Lyme is an epidemic. I sure as heck hope that “doctors” like Dr. Dostrow NEVER have to personally know what living with Lyme is like.
It appears that Dr. Dostrow and his researchers may have revealed their own bias by failing to adequately research both sides of a very complicated, controversial disease prior to writing his article and responding to the comments. I challenge him to sit down with Ms. Mervine for an hour or more and be willing to learn about the scientific facts (yes FACTS!) that are the basis for the controversy rather than so casually writing off anyone with an opinion different than his as lacking substance or obtaining information from “flawed sources”. Based on the comments in this thread, it certainly appears that Ms. Mervine is much more knowledgeable and supremely more qualified to write on the subject of Lyme disease. Dr. Dostrow (like many) seems unwilling to spend the time to consider the facts behind both sides of the controvery. I would strongly encourage him to do so. It could be enlightening.
There are several more tickborne diseases that were not included in your list: babesiosis, ehrlichiosis/anaplasmosis/bartonella. These are the ones we know about, but there may be others that have not been identified yet.
This article shows that ehrlichiosis has been known to be in CA for almost 15 years:
And babesiosis/ehrlichiosis are reportable diseases in California.
This is important to know because typically patients get more than one germ from a tickbite and this greatly complicates the treatment.
Apart from the fact that a passive surveillance system like CDC maintains is admitted to catch only a fraction of cases, many doctors do not know how to diagnose tickborne diseases and therefore those cases are not counted either.
After reading Dr. Dostrow’s replies, I am completely incensed. I think his article is a bunch of garbage and he’s just trying to get sympathy for his sick wife. It’s funny that when you go to a doctor’s office, you assume they are competent and going to be able to help you…You assume they are going to be the best, the most scholared and at very least more educated on the matter than you are. In reality, you may just be going to the one that barely got by by cheating off his lab partner.
You also assume your doctor is really going to care about your health and care about you as a person and take a genuine interest in your condition. Everyone should know by know that YOU are responsible for your own health and have to be YOUR OWN advocate for your health to jump through the hoops of dealing with IGNORANT doctors.
If his “patient” would have been anyone other than his wife, he probably would have sent them home with a prescription for Tamaflu or told them it’s all in their head.
Let’s face it…how many of these doctors are out doing current research on these conditions? I’m talking about cutting edge research of this relatively new disease…LYME. Not very many, and not Dr. Dostrow.
DOSTROW, Michael Paul D.O., Mammoth Lakes, CA
Violation of Probation
The Administrative Law Judge’s proposed decision was adopted by the Osteopathic Medical Board of California as its decision on 02-21-2008.
License revoked effective 03-24-2008
you lost your license in 2008 why are you claiming to be a doctor ?