What To Do

Introduction

To paraphrase an old saw, “Spring has sprung, the grass has riz, I wonder where that Lyme tick is--at.” In the first two weeks of March, 2002, the Northcoast Lyme Disease Support Group had already been contacted by three Humboldt County residents who found ticks attached to their bodies or the bodies of their children after enjoying the sudden spate of sunny-days with excursions into local parks. One woman found four ticks on her body, two attached. Because she was already alert to the dangers of Lyme disease, she noticed unusual rashes forming around the bites and saw her doctor within days. Unfortunately, this Lyme victim incorrectly removed the ticks and saved only one of them for testing. Correct removal might have prevented the disease. Saving both ticks would have made it easier to make decisions, had she not developed rashes.

The woman’s immediate action will probably save her from getting a debilitating, painful and potentially terminal disease months or years down the road. However, had she “shined it on” or failed to insist on immediate antibiotic treatment, her prognosis could be very different. With or without early symptoms, chronic or acute symptoms, including dangerous ones, can appear months or decades later.

What to know about Humbolt and Mendocino Counties

The most important thing for Humboldt and Mendocino County residents to remember about Lyme disease is that, even though it has been known and studied in the U.S. for 25 years, the research on it is both inadequate and tainted by conflicts of interest. Doctors who are not Lyme specialists are often mindlessly skeptical, uninformed and derisive. The vast majority are following outdated protocols from state and federal agencies closely tied to medical and pharmaceutical interests that stand to benefit from a view of Lyme disease that has more to do with money than health.

Partly because of politics, complex information has been oversimplified into useless, dogmatic generalizations so outdated as to often be misleading. A good example is the often-cited statistic that only 1 to 2 percent of Western black-legged deer ticks (I. pacificus), the Lyme-bearing species in California, are actually infected with Bb (Borellia burgdorferi), the Lyme bacterium. Using that statistic, uninformed doctors conclude that if a tick bites you, even if it was the right (wrong) tick, you only have a 1 to 2 percent chance of getting Lyme disease. That statistic can be traced to a single study done by William Burgdorfer, for whom Bb is named. Burgdorfer, in Montana, studied ticks sent to him from all points in the I. pacificus geographic range. That includes several states and many areas that vary widely in the presence of the animals Bb needs to complete its life cycle. All were lumped together to get the average.

In addition, the study was done in 1986, only two years after Burgdorfer discovered the Bb bacterium. Much, much more is known about the ins and outs of its life cycle now. There has been little follow-up on I. pacificus, but many studies indicate a huge rise in the geographical spread of both Bb and Lyme-bearing ticks other than I. pacificus since 1986. There is every reason to think that the ecological picture has changed enormously since Burgdorfer’s limited study produced that 1 to 2 percent figure.

A more reliable statistic for California northcoast residents is the field study done in a small watershed in northern Mendocino County in 1989. It found that an average of 14 percent of the relevant ticks were infected and that, in some spots in the watershed, up to 41 percent of the relevant ticks were infected. Now, figure out your own chances based on that study. Consider that no one has studied the ticks in the southern Humboldt area around Briceland, but a simple count done by anthropologist Jentri Anders, PhD, based on the local grapevine, indicates that many more than 1 to 2 percent of Briceland area residents have or have had Lyme disease. If you are a resident of Humboldt or Mendocino County, this might work for you. As yourself how many people do you know of who have or have had it? When “hard” science is as distorted as it is in this case, “soft” science, common sense and common knowledge may be all one has to rely on.

The truth is that Lyme patients, actual and potential, are best advised to do much of their own thinking. To that end, the following information is offered, based on the widest possible selection of up-to-date Lyme studies and, unlike most Lyme disease information, aimed directly at coastal northern California, not at the northeastern U.S.

What to do if you are going to be near tick habitat :

1. Carry a tick removal kit: tweezers, disinfectant, an empty film or prescription container or a ziplock bag with a bit of damp cotton in it and a blank label on it, scotch tape, magnifying glass.
2. Stay out of the brush and keep your dog out of the brush, to protect both you and your dog. (Deer ticks bite dogs and dogs can transport unattached ticks into your house or car or onto your body.) Stay on cleared roads, paths and trails. Avoid any contact with brush or tall grass beside the trail. If you can’t do that, walk on the downhill side of the trail. (Deer ticks like the uphill side.)
3. Wear a scarf or hat to prevent ticks from getting in hair. (Ticks rarely climb more than 3 feet from the ground, but children are that short and adults can easily squat or bend, placing their heads into the 3-foot range.)
4. Avoid contact with shaded leaf litter, the habitat of tick nymphs. Never allow children to play with rotting leaves, only newly fallen ones.

Note: Deer tick habitat includes low brush, tall or recently cut grass, shaded leaf litter, rotting logs, warm damp caves or a warm cabin in winter, at elevations below 2100 feet. Deer ticks (which live on many more animals than deer) are active when the temperature is over 45 degrees and it is damp, which can be year-round in coastal northern California. They are not active when it is colder than that or when it is hot and dry, but remember there is danger, even on hot days, in the shade. The tick can pass Bb at all stages in its development, but larvae (new-hatched ticks) rarely pass it. Western black-legged deer tick nymphs (babies), unlike eastern deer ticks, are more likely than adults to be infected, and are also less likely than an adult to be found on the body before they have transmitted Bb. Adults, however, do pass Bb. Ticks eat one blood meal at each stage of life. Nymphs are hungry from March to August. Adults are looking for that blood meal from October to June.

What to do if you must be in a tick habitat:

1. Carry the kit.
2. Wear long pants and shirt sleeves.Tuck pants into boots, shirt into pants. Make them light colored to more easily spot ticks crawling.
3. Use repellent, either chemical or organic, depending on your preferences.
4. Shower or bathe and wash hair immediately after being in brush. This will get rid of any crawling ticks, but not attached ones. Keep clothes separate in a plastic bag until you can wash and dry them in a drier. (Some ticks have been known to survive the washing machine, but they can’t survive the drier on high heat.) Inspect skin immediately after, especially armpits and groin, and any place elastic provides a tick barrier. The sooner you remove an attached tick, the lower are chances it had time to transmit Lyme disease and possibly other diseases, as well.

NOTE: Remember tick nymphs are the size of poppy seeds and usually transparent, appearing flesh colored. Ticks inject an anesthetic when attaching. Some people feel them, some people don’t. Unattached tick nymphs in hair are nearly impossible to see, but if left there, they will attach to the scalp where you can feel them. So continue to feel your head (or your child’s) for several days after exposure to tick habitat. You may be able to feel an attached tick when it gets engorged enough.

What to do if you find a tick on you or someone else:

Unattached.

Use a piece of tape to remove it without touching it. (It is possible to get Lyme disease from tick saliva through broken skin, some say even through unbroken skin.) Keep it until you are sure there are none attached, as backup in case you damage an attached one removing it. Chances are good that if you got the ticks in the same location at the same time, they are the same species. You can at least find out if the attached one was likely to have been I. pacificus or not. If you find no others, dispose of it without touching it.

Attached.

1. Remove it, or have someone less shaky remove it, with the tweezers. DO NOT TOUCH IT WITH BARE HANDS. DO NOT TWIST, TURN, BURN, SMEAR WITH ANY SUBSTANCE OR AGGRAVATE IT. Grab it by the head, as close to the skin as you can get and pull GENTLY, straight out, until it comes off. (If you have no tweezers, you will have to decide whether to use your fingers and risk damaging the tick or wait until you can get tweezers and raise the chance of disease-transmission.) You can also choose to go to a clinic and have a medical practitioner remove it, but the longer you wait, the longer the tick has to infect you.
2. If it is not grossly engorged, look at it, briefly but carefully, using the magnifying glass, if necessary. (Tick nymphs and engorged ticks all look alike to the naked eye, and male deer ticks can appear similar to dog ticks, but the unengorged adult female deer tick has a black and brick-red/brownish back and black legs. Males’ backs may be brownish to black. Adult deer ticks of both sexes are smaller than other ticks. ) This is backup in case you lose it or damage it or decide not to have it identified by an expert. You, at least, saw it.
3. Place the tick gently, alive if possible, into the container with the damp cotton, in case you want to have it identified and tested. Keep it cool, but not frozen. Live ticks are easier to identify and test, but damp dead ones may also work. Dry dead ones cannot be identified.
4. Disinfect the bite immediately, (that’s why it was a brief look), the area around it and the tweezers. If fingers were used instead of tweezers, disinfect them. If you think you did not get all of the tick, disinfect the bite anyway (doesn’t matter if you aggravate what’s left of it now) and go to a clinic to have the rest of it removed. If the tick is on someone else, that person can be disinfecting while you are looking at the tick. Both things need to happen, but immediate disinfection is more important.
5. Write the location where you encountered the tick and the date of the encounter on the container, for use by the health department. If you don’t know, put the date of the removal. For your own records, note how long you think it was on you, or at least notice how engorged it is.

NOTE: It is entirely untrue, and every expert agrees with this, that you must twist the tick out because it screwed itself in. They burrow straight in and glue themselves to your skin. It is the secreted glue that is holding them. Any damage to the tick releases pathogens into the bite, greatly raising chances of Lyme or other diseases. There is currently enormous controversy about how long it takes the tick to transmit Lyme disease. Standard sources say 24 hours, but the range of studies indicates 4 to 72 hours. Since one third of western deer ticks are known to carry Bb in their saliva--unlike most eastern ticks, which carry them in their gut--they theoretically can infect you the second they attach, though this has not been proven to occur. Should the tick be in any way damaged during removal, it matters not a whit how long the tick was on you, since you just injected yourself with the contents of its body. It is also untrue that you can suffocate ticks or coax them out with a heat source. You want the tick to be contented and alive when you pull it out. Anything you do to aggravate the tick can cause it to spit an incredible assortment of pathogens, including Bb, into the bloodstream.

6. Here are your options. See a doctor and insist on a four week course of doxycycline, just in case. Some doctors will do this, some will tell you doxycycline is not the “protocol” for a tick bite. If that happens, you may wish to find another, more openminded, doctor. OR, have the tick tested, then decide what to do OR wait for symptoms before doing either. You must decide how much of a chance you want to take on getting Lyme or other tick-born diseases and what you can afford and chart your course accordingly. You can take the tick immediately to the Department of Public Health in Eureka or Garberville to have it identified and/or tested. You can mail it with an explanatory note and a check for $20 to Humboldt County Health Department, 529 “I” Street, Eureka 95501, attn: lab. However, it will be one to two weeks before you have results. By that time, the germs may well have travelled to places in the body where they are much harder to kill. If it was not a deer tick, you are (it is currently believed) in the clear for Lyme disease, but not erlichiosis, babesiosis, relapsing fever, cat scratch fever or a newly discovered, possibly illness-causing species of Borrelia. If it was a deer tick but tested negative for Bb, then your chances for Lyme disease are extremely low, but not eliminated (some sources say testing the tick for Bb is not infallible). If it was an infected deer tick, see a doctor now, whether or not you have symptoms, and get the doxy. If you settle for one preventative dose of doxy, based on a recent NIH study your doctor may quote, be aware that the one dose worked on about 80 percent of the subjects. It didn’t work on the other 20 percent. You can wait for symptoms before seeing a doctor and/or having the tick tested. The “classic bull’s eye” Lyme rash, which is always at the site of the bite, may appear within hours (if you have been previously infected with Bb), a day or days (seven is average) or up to six months after infection. The rash, properly called an erythema migrans or EM rash, only occurs in only one third of Lyme patients and is frequently misdiagnosed if it varies in the slightest from the “classic” form, which it often does. If, however, you are one of the lucky victims who gets an EM rash, it is definitely Lyme disease. An EM rash is the only symptom exclusive to Lyme disease and even the notoriously picky federal Centers for Disease Control does not require doctors to get a positive Lyme test to diagnose Lyme if the patient had the rash. One half of Lyme victims do not remember the tick, a rash or any other symptoms. Researchers have found Bb in the eyes within a day of infection, meaning that it can move from the bite and start invading the rest of the body long before any symptoms appear. Researchers disagree on how often that happens. Similarly, there is no generally available test that can be done until four to six weeks after infection, and then the two most common tests have been shown to be up to 40 percent unreliable. Given the uncertainties of options 2 and 3, and the godawfulness of late stage Lyme disease, option number one is recommended here. The side-effects of four weeks of doxycycline are nothing compared to late-stage or acute Lyme disease. Your insurer may or may not pay for it.

What to do if you didn’t take doxy or test the tick and you develop a rash:

1. Observe it hourly and notice whether it grows. Depending on how allergic you are to bug bites in general and tick bites in particular, you may well get a “bug bite” type of rash, swollen and white in the middle, redness around it. This will appear within minutes or hours and begin to shrink at whatever rate your body processes allergens. It is unlikely to ever exceed 3 inches in diameter or to have the precise edge a classic Lyme rash has. A Lyme rash, which may accompany a bug bite rash, will start as a well-defined area of redness around the bite that expands outward over time. It is most likely to be circular, but, depending on the location on the body and other factors, can be oval, triangular, in streaks or some combination of those. (Many pictures are available on the Internet, see links provided on this site.) It varies in size from 3 inches in diameter to covering the whole back or torso or wrapping around a thigh. There may be more than one, but the first one is always at the site of the bite. It is a uniform dark pink (hard to see on dark skin), usually smooth, warm to the touch and usually does not itch or burn or hurt much. It can have bumps that can ooze, but that is unusual. It may or may not clear in the center after a while (days, weeks), giving it the “bull’s eye” look.
2. If the rash grows, or is accompanied by or followed within six weeks by any kind of illness (fever, fatigue, headache, body aches, confusion) go immediately to the clinic and get some doxycycline. You must have at least four weeks of doxy to be completely safe because of peculiarities of the Bb life cycle only recently discovered. (Two to three weeks has been the protocol in the past.) A quick, adequate hit of the correct antibiotic, all Lyme researchers agree, will knock out the infection and prevent trouble down the road in all but the rarest of cases. Failure to get adequate antibiotics soon enough opens the door to much pain later. Holistic remedies, such as garlic or homeopathy, are fine for treatment of chronic Lyme disease, but using them instead of antibiotics at the outset will cause you to miss the one window of opportunity you get to end the disease for good.
3. With or without treatment, the rash will eventually disappear--days, weeks, months later--by itself. If you know you will not be able to get to a doctor while the rash looks like a Lyme rash, mark the edges of it each day as it grows and either photograph it (color is best) or diagram it on an outlined body-figure to scale or transfer the actual marks to actual paper. Log it, write down how it looks each day or have someone else do this. You need documentation on the rash for when you see a doctor later. Doctors are very skeptical of patient’s observations and often will not accept as a symptom anything they did not personally observe. Paper helps.

What to do if you didn’t do any of the above but suspect you may have Lyme disease.

1. Assemble copies of all your medical records from the time you were first exposed to tick habitat, including doctor’s dictation notes, lab work, prescriptions. You are legally entitled to them in California. Place them in chronological order.
2. Look at the two different lists of Lyme risk factors/symptoms located on this website. One is longer than the other.
3. Fill in your chronology with your own memories of events/ symptoms corresponding to items on the lists.
4. Compare your chronology to the lists. The more comparable items there are, the greater is your chance of having Lyme disease. If you still think you may have Lyme disease, you need a Lyme specialist, or at least an openminded and respectful doctor who will work with you, and the most reliable testing available (go to www.igenex.com for test information.)

For a list of California doctors, assistance in interpreting symptoms or answers to specific questions not covered elsewhere on this site, email jentri@tidepool.com or write Jentri Anders, 3883 Patricks Pt. Dr., Sp. 12, Trinidad CA 95570. It might take up to three weeks to receive an answer, but all queries will be answered.