Diagnostic Tips and Treatment Guidelines for Lyme Disease and Other Tick Borne Illnesses

This guide is for medical billing and coding.

INTRO

As time goes on and years pass the understanding of tick-borne illnesses has grown. New information is presented all the time to help us further refine our management techniques in dealing with these types of diseases. Lyme disease is not just an infection with “Borrelia burgdorferi”, but instead it is a complex illness potentially complicated by many other tick related co-infections. In the later stages, it also includes a very significant degree of immune suppression symptoms. This can perpetuate the infection, but it is probably responsible for the reactivation of other infections that may just be latent, such as herpes-type viruses that are also quite common. Many collateral conditions are usually seen in people who have been chronically ill, so it’s not surprising at all that damage to virtually all of the bodies’ parts is inevitable. To make a full recovery all of these issues must be addressed in an extremely thorough and systematic manner, there are no other options. No single treatment or medication will allow the patient to fully recover, by addressing all these smaller issues and creating treatments for all of them together will Doctors be able to restore full health to their patients.
Another important issue is the definition of “Chronic Lyme Disease.” Based on clinical data and the latest information, to be said to have chronic Lyme, the following three criteria must exist:

Illness present for at least one year
Have persistent major neurologic involvement (such as encephalitis/encephalopathy, meningitis, etc.) or active arthritic manifestations.
Still have active infection with B. burgdorferi, regardless of prior antibiotic therapy.

It is clear that in most patients, chronic Lyme is a disease affecting mostly the nervous system. So careful evaluation usually includes neuropsychiatric testing, SPECT and MRI scans, a CSF analysis when appropriate, as well as regular input from neurologists and psychiatrists, pain clinics, and occasionally specialists in psychopharmacology that are familiar with Lyme disease.
An extension of the effect of chronic Lyme Disease on the nervous system, more recent information has demonstrated a deleterious effect on the hypothalamic-pituitary axis. Altering degrees of pituitary insufficiency are seen in these patients, the correction has resulted in restoration of energy, stamina, libido, and the resolution of persistent hypotension. Unfortunately, not all specialists recognize pituitary insufficiency right away, if at all, mainly because of the difficulty in making the lab diagnosis, but the potential benefits of diagnosing and treating the disease easily justify the effort needed for a full evaluation.
When diagnosing and treating this disease it is very important for the patient to work with and almost be a part of the medical team, they must also take responsibility for complying with the recommendations given to them, maintaining the best health status they can, reporting any new problems or symptoms asap, and especially in realizing that despite the medical teams best efforts, complete success in diagnosis and treatment is never 100%. The medical team also needs to make a great effort to listen carefully to the patient and not be too quick to dismiss any strange or illogical complaints.

BACKGROUND INFORMATION

SPIROCHETE LOAD/IMMUNE SUPPRESSION IN LYME DISEASE
The spirochete load has a direct effect on how severe the Lyme presence is in the system. Low spirochete loads usually will result in mild infections that can be missed and can sometimes remain for years. As spirochete loads increase, usually from multiple tick bites, the morbid nature of Lyme disease increases. The symptoms will become apparent and much more debilitating the larger the spirochete load, testing for Lyme disease at this point is also much more accurate. Studies have also proven that higher loads also greatly impact the immune system. Severe illnesses also stem from weakened defenses, such as severe stress or specific immunosuppressant medications. The longer a person is sick with Lyme disease, the more likely the disease worsens and becomes treatment resistant

CO-INFECTION
The evaluation of a Lyme disease patient must always begin with testing for all of the currently known tick borne infections. Certain studies for Borrelia, Babesia Bartonella and Ehrlichia should also be combined when appropriate with direct antigen assays. Antigen detection tests are extremely helpful in evaluating the seronegative patients and others that are still ill or relapsing after therapy. There are over a dozen protozoans besides just Babesia microti that can be found in ticks, but commercial tests for only a few of these are available now, so as in Borrelia, a clinical assessment is the primary test. With Ehrlichiosis you must test for both the monocytic and the granulocytic forms. Many presently uncharacterized Ehrlichia-like organisms are found in ticks and may not be picked up by currently available screenings, so with this illness serology’s are only a piece of the puzzle in making an accurate diagnosis. Babesia are parasites, so it is recommended that if a co-infection is found involving this specific organism then you need to treat this first, then future therapies for other pathogens will be much more effective.

LYME BORRELIOSIS

DIAGNOSTIC HINTS
Lyme disease is diagnosed clinically since no current tests are definitive in diagnosing infection from these pathogens, or whether the infections are the cause of the patient’s current symptoms. Every clinical procedure needs to be taken into account, including tests for concurrent conditions and other diagnoses, as well as other reasons for the patients’ complaints. Consideration also needs to be given to any tick exposure, rashes and results of tests for tick-borne pathogens.

ERYTHEMA MIGRANS
Erythema migrans (EM) is the diagnostic of Bb infection and is present in fewer than half, even if it is present it may go totally unnoticed by the patient. It is an expanding lesion that is raised and warm and sometimes there can be mild stinging. The EM rash can begin anytime from four days to several weeks after the initial bite, and it can also be associated with other symptoms. After a tick bite serologic tests are never expected to show positive until many weeks have passed. So if EM is present the patients treatment needs to begin immediately, and no one should wait for the results of the Borrelia tests. You should not miss the chance to treat the disease early because this is when the success rate is highest.

SYMPTOM CHECKLIST
This is not meant to be used as a sole diagnostic sheet, but is provided to make the office interview much more efficient.
NAME_______________________________________DATE__________________
RISK PROFILE (PLEASE CHECK)
Tick infested area ___ Frequent outdoor activities ___ Hiking ___ Fishing ___ Camping ___ Gardening ___
Hunting ___ Ticks noted on pets ___ Other household members with Lyme ___
Do you remember being bitten by a tick? No ___ Yes ___ when ________
Do you remember having the “bull's eye rash?” No ___ Yes ___
Any other rash? No ___ Yes ___
Have you had any of the following? CIRCLE ALL YES ANSWERS

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change (loss or gain — circle one)
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands: list areas _______________________________________________
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production; breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach or abdominal pain
Change in bowel function (constipation, diarrhea)
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
History of a heart murmur or valve prolapse?
Joint pain or swelling: list joints _________________________________________________
Stiffness of the joints or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creaks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
Increased motion sickness, vertigo, poor balance
Lightheadedness, wooziness, unavoidable need to sit or lie down
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory, poor attention, problem absorbing new information
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing; word or name block
Mood swings, irritability, depression
Disturbed sleep — too much, too little, fractionated, early awakening
Exaggerated symptoms or worse hangover from alcohol

LYME DISEASE TREATMENT GUIDELINES

LYME BORRELIOSIS

GENERAL INFORMATION

After a tick bite occurs, Bb undergoes rapid hematogenous dissemination and can be found in the central nervous system as early as twelve hours after initially entering the bloodstream. This is why early infections require a full dose of antibiotic therapy with an agent able to penetrate all of the tissues known to be bactericidal to the organism. It has been proven that the longer a patient has been sick with Bb prior to first therapy, the longer the duration of the treatments will be, and this is when the need for aggressive treatment increases.

LYME DISEASE TREATMENT INFORMATION

There is no 100% effective antibiotic for treating Lyme disease and the choice of medication used as well as the dosage prescribed will vary for different people because of different health factors. These can include things like the duration and the severity of illness, the presence of co-infections, patient immune deficiencies, prior immunosuppressant use while infected, age, weight, gastrointestinal functions, blood levels achieved, as well as patient tolerance. Doses found to be most effective clinically are often higher than those recommended in the past. This is due to the deep tissue penetration of Bb, it's presence in the central nervous system, including the eye and also within cells and tendons, and also because very few strains of the organism now known to exist have been studied extensively for antibiotic effectiveness.

ANTIBIOTICS
There are many antibiotics used for Bb treatment. Tetracyclines like doxycycline and minocycline, are bacteriostatic unless they are given in very high doses. If high blood levels cannot be attained, treatment failures in the disease are very common. These high doses can also be very difficult to tolerate, so that is something you should keep in mind and your Dr. should warn you about. Doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses or by parenteral administration.
Penicillins - As would be expected in managing an infection with an organism such as Bb, amoxicillin has been shown to be more effective than penicillin V taken orally. Because of its short half-life and the need for high levels, amoxicillin is usually used along with probenecid. Since blood levels are extremely variable they should always be measured.
Cephalosporins - Must be advanced generation: first generation drugs are rarely any help, and second generation drugs are usually comparable to amoxicillin and doxycycline. Third generation agents are currently the most effective out of all of the aforementioned drugs because of their very low MBC's and they have also been shown to be effective when penicillin and tetracycline fail. Ceftin, a second generation drug, is also effective against staph infections and is useful in treating symptoms that could be mixed infections, containing some of the most common skin pathogens in addition to the Bb.
Erythromycin has been shown to be pretty much ineffective as monotherapy. The advanced macrolides and azalides like azithromycin and clarithromycin can be difficult to tolerate orally because of their tendency to promote yeast growth and poor GI tolerance at the high doses that are needed to be efficient. They have impressively low MBCs and do concentrate in tissues and penetrate cells, so theoretically they should be ideal agents. However, clinical results were very disappointing, especially with oral azithromycin.
Flagyl is commonly used in patients with treatment resistant chronic Lyme disease. While present in a hostile environment such as spinal fluid, or serum with certain enhanced antibiotics, Bb will change into a cyst form. The cyst seems to be able to stay dormant, but when placed into an environment more that will help further its growth, the cyst can open and a full spirochete comes out. Traditional antibiotics used for Lyme disease, like penicillins and cephalosporins don’t kill the cystic form of Bb. On top of that, the cyst lacks the usual surface antigens found on the spirochete. There is evidence that metronidazole will kill the cystic form however, and this fits with the now well known clinical observations that metronidazole can be extremely effective for most chronic Lyme disease patients. However, this medication apparently has no effect on fully intact spirochetes. Due to this, it is best to treat the ill patient who has a resistant disease by combining metronidazole with other antibiotics to target all possible forms of Bb in the system. Since there is definitive laboratory evidence that tetracyclines may hinder the effect of metronidazole, this class of medication is not nearly as useful as others in these two-three drug treatments.

5 Very Important Precautions:

Do not use metronidazole if you are pregnant as there is a high risk of birth defects.
No alcohol! A severe reaction will occur, which usually consists of severe nausea, flushing, headache, and various other unsettling symptoms.
Metronidazole is also potentially neurotoxic. Because of this breaks in the treatment are commonly prescribed, especially using this agent every other week.
Yeast over growth is also very common so a strict anti-yeast regimen has to be followed.
Severe Herxheimer-like reactions are commonly seen in the ill patient during the first week of therapy, and usually again four weeks later.

PULSE THERAPY

Pulse therapy is the administering of different antibiotics two to three days a week. The efficacy of this antibiotic regimen is based on the fact that it takes approximately 48 to 72 hours of constant bactericidal antibiotic levels in the system to kill the spirochete, it will take longer than the four to five days between pulses for the spirochetes to fully recover and this has many advantages described below:

Dosages are often doubled to increase efficacy
The more toxic medications can be used with increased safety
May be effective when conventional and the daily regimens have failed.
Intravenous access may be easier/more tolerable
Higher standard of living for the patient
Cheaper than daily regimens

ORAL ANTIBIOTICS

Amoxicillin	Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are usually needed
	Pregnancy: 1g q6h and adjust
	Children: 50 mg/kg/day divided into q8h doses
Doxycycline	Adults: 100 mg qid with food; doses of up to 600 mg daily are usually needed, as doxycycline is only effective at higher blood levels.
	Not for children or women who are pregnant
Cefuroxime axetil	Oral alternative that may be effective in amoxicillin and doxycycline failures. Useful in EM rashes co-infected patients with common skin pathogens.
	Adults and pregnancy: 1g q12h and adjust.
	Children: 125 to 500 mg q12h based on weight.
Tetracycline	Adults only, and not in pregnancy. 500 mg tid to qid
Erythromycin	Poor response and not recommended.
Clarithromycin	Adults: 500 to 1000 mg q12h. Add hydroxychloroquine, 200–400 mg/d or amantadine 100–200 mg/d.
	Cannot be used in pregnancy or in young children
Azithromycin	Adults: 500 to 1200 mg/d.
	Adolescents: 250 to 500 mg/d.
	Add hydroxychloroquine, 200–400 mg/d, or amantadine 100–200 mg/d
	Cannot be used by pregnant women.
	Oral azithromycin is not as effective as clarithromycin.
Augmentin	Cannot exceed three tablets a day due to the clavulanate, thus is given with amoxicillin.
	This combination can be very effective when Bb beta lactamase is thought to be present.
Chloramphenicol	Not recommended as not proven and could potentially be toxic.
Metronidazole (see text)	500 to 1500 mg daily in split doses. Adults only.

PARENTERAL THERAPY

Ceftriaxone	Risk of biliary sludging can be minimized with minor breaks in therapy
	Adults and pregnancy: 2g q12h, four days in a row each week.
	Children: 75 mg/kg/day up to 2g/day
Cefotaxime	Comparable efficacy to ceftriaxone; no biliary problems.
	Adults and pregnancy: 2g q8h; may dose as high as 12g daily.
	Children: 90 to 180 mg/kg/day dosed q6h (preferred) or q8h, not to exceed 12 g a day.
*Doxycycline	Requires central line as is caustic. Extremely effective, probably because higher overall, and spiked blood levels when given parenterally.
	Always be sure to measure blood levels.
	Adults: 400 mg q24h and adjust accordingly based on levels.
	Cannot be used by pregnant women or in young children.
Azithromycin	Requires central line as is caustic.
	Dose: 500 to 1000 mg daily in adolescents and adults.
Penicillin G	IV penicillin G is minimally effective and not usually recommended.
Benzathine penicillin	Also extremely effective IM alternative to oral therapy.
	May need to begin at lower doses, prolonged Herxheimer-like reactions have been observed.
	Adults: 1.2 million U three times per week
	Adolescents: 300,000 to 2.4 million U weekly.
	Can be safely used in pregnancy.
Poorly studied but anecdotally effective
Vancomycin	Observed to be one of the best drugs in treating Lyme, but potential toxicity limits its use. It is a perfect candidate for pulse therapy to minimize these concerns.
	Use standard doses and confirm levels frequently.
Imipenim and Unisyn	Similar in efficacy to cefotaxime, but often works when cephalosporins have failed.
	Needs to be given q6 to q8 hours.
Cefuroxime	Useful but not better than ceftriaxone or cefotaxime.
Ampicillin IV	Much more effective than penicillin G. Must be given q6 hours.

TREATMENT CATEGORIES

PROPHYLAXIS of high risk groups - education and preventive measures. Antibiotics are usually not given.

TICK BITES - Embedded Deer Ticks but with no symptoms of Lyme disease.

The Dr. must decide to treat based on the type of tick that bit the patient, whether it came from an endemic area and percent infected, how it was removed, and even the length of attachment. The risk of transmission is higher if the tick is fully engorged, or of it was removed the wrong way allowing the tick's contents to spill into the bite wound. High risk bites are treated as follows:

Adults: Oral therapy for 21 days.
Pregnancy: Amoxicillin 1000 mg q6h for 6 weeks. Also test for Babesia, Bartonella and Ehrlichia.
Alternative: Cefuroxime axetil 1000 mg q12h for 6 weeks.
Young Children: Oral therapy for 21 days. (smaller doses than adults)

EARLY LOCALIZED - Single erythema migrans with no constitutional symptoms:

Adults: oral therapy for 6 weeks.
Pregnancy: 1st and 2nd trimesters: IV X 21 days then oral X 6 weeks
3rd trimester: Oral therapy X 6 weeks.
Any trimester — test for Babesia, Bartonella, and Ehrlichia
Children: oral therapy for 6 weeks. (smaller doses than adults)

DISSEMINATED DISEASE - Multiple lesions, constitutional symptoms, lymphadenopathy, or any other manifestations of dissemination.

EARLY DISSEMINATED — Mild symptoms present for under one year and not complicated by any immune deficiency issues or prior immunosuppressive treatment:

Adults: Oral therapy until no active disease for at least 4 weeks (4–6 months typical)
Pregnancy: As in localized disease, but duration as above. Treat throughout the pregnancy, but do not breast feed.
Children: Oral therapy with duration based upon clinical response.

PARENTERAL ALTERNATIVES for more ill patients and those unresponsive to or intolerant of oral medications:

Adults and children: IV therapy for at least 6 weeks (until clearly improved).
Follow with oral therapy or IM benzathine penicillin until no active disease for 6–8 weeks.
IV may have to be resumed if oral or IM therapy fails.
Pregnancy: IV then oral therapy as above.

LATE DISSEMINATED — Present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity:

Adults and pregnancy: Extended IV therapy (at least 10 weeks), then oral or IM, if effective.
Children: IV therapy for 6 or more weeks, then oral or IM follow up as above.

CHRONIC LYME DISEASE
By definition, this category consists of patients with active infections, with a more prolonged duration, and most likely they will have higher spirochete loads, weaker defense mechanisms, and possibly more virulent or resistant strains and they are probably also co-infected. Neurotoxins may also be very significant in these patients. Search for and treat concurrent illnesses including viruses, chlamydias, and mycoplasmas. These patients require a full evaluation for all of these problems, and each abnormality must be addressed accordingly. These groups will most likely need parenteral therapy, usually in high doses, as well as pulsed therapy, and different antibiotic combinations, including metronidazole. Antibiotic therapy will need to continue for several months, and the antibiotics may have to be changed periodically to break plateaus in recovery. Be on the lookout for treatment-related problems such as antibiotic-associated colitis, yeast overgrowth, intravenous catheter complications, and abnormalities in blood counts.
If treatment can be continued long term, then recovery is very possible. However, special attention must always be paid to all treatments for such a recovery - not only antibiotics, but rehab programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants. Unfortunately, not all patients with chronic Lyme disease will fully recover and treatment may not eradicate the active Borrelia infection. Such individuals may have to be maintained on open-ended, ongoing antibiotic therapy, for they repeatedly relapse after antibiotics are stopped. Maintenance antibiotic therapy is always mandatory in these types of cases.

SAFETY
Nearly two decades of experience in treating thousands of patients with Lyme disease has proven that therapy as described above, although intense, is usually well tolerated. The most common negative reactions seen are allergies to probenecid. In addition, yeast superinfections are often seen, but are generally easily recognized and managed. The induction of Clostridium difficile toxin production is seen most commonly with ceftriaxone, but can occur with any of the antibiotic regimens mentioned in this document. However, pulsed dose therapy and regular use of the lactobacillus preparations seems to be helpful in controlling yeast and antibiotic related colitis, as the number of cases of C. difficile in Lyme patients is low when these guidelines are followed exactly as taught. When using central intravenous lines including peripherally inserted central catheters, if ANY line problems arise, it is recommended that the line be pulled immediately for the safety of the patient. Salvage attempts (urokinase, repairing holes) are often ineffective and may not be safe.

PATIENT INSTRUCTIONS ON BITE PREVENTION AND TICK REMOVAL

HOW TO PROTECT YOURSELF FROM TICK BITES

PROPERTY
Remove wood piles, rock walls, and bird feeders as these attract tick-carrying small animals and can increase the risk of acquiring Lyme disease.

INSECTICIDES: Property can be treated with a product called “Damminix.” This consists of cardboard tubes containing cotton balls that have been dipped in insecticide, and these tubes are placed around the property in wooded areas and underneath shrubs. Mice, which are a key link in the propagation of Lyme disease, find the cotton and bring it back to their burrows to be used as nesting material, resulting in a big decrease in the number of ticks in the area. After a couple years tick populations may rise again as other small animals that don’t gather cotton become hosts to the ticks. Use Damminix in conjunction with liquid or granular insecticides.

LIQUID & GRANULAR PESTICIDES: If liquid insecticides are used, the best way to apply them is by fogging, not by harsh sprays. Apply the products in strips a few feet wide at the perimeter of the lawn at any areas next to woods and underbrush. Also treat any ornamental shrubs near the house that could serve as a habitat for small tick carrying animals. The best possible time to apply these products is in late Spring and early Fall.

CLOTHING
When wearing long pants you should always tuck the cuffs into your socks so any ticks that get on shoes or socks will crawl on the outside of the pants. Also, light colored clothing is recommended so the ticks will be easier to spot. Smooth materials such as windbreakers are harder for ticks to grab onto and are preferable to knits and other types of materials.

SKIN
Insect repellents that contain DEET can be somewhat effective when applied to the arms, legs, and around the neck. It is also best to use a product that contains more than 50% DEET, and 25% concentrations are the most preferred. Use repellents cautiously on small children, as they are more susceptible to their toxic effects, and this is especially important with any repellant containing DEET. Be aware that this repellent evaporates quickly and must be reapplied often, especially on hotter days. Tick repellents that contain “permethrin” are meant to be sprayed onto clothing. Spray the clothes before they're put on, and let them dry first.

HOW TO REMOVE AN ATTACHED TICK
Always use tweezers and never attempt to do this with your fingers. With the tweezers grasp the tick as close to the skin as possible and pull the tick straight out. When the tick is removed apply an antiseptic. Do not try to irritate them with heat or chemicals, or even grasp them by the body because this can cause the tick to inject more germs into your skin. Also be sure to tape the tick to a card and record the date and the location of the bite. The sooner the tick is removed, the less likely an infection will result, so if you are out in areas where ticks are usually found such as heavily wooded areas you should always check for ticks when returning home. Do not apply this chemical directly to the skin. Ticks are also very intolerant of being dried out, so after being outdoors in an infested area, place clothes in the dryer for a few minutes to kill any ticks that may still be present.