Written by Dr. James Schaller: We know Lyme disease is highly under-reported.
The following checklist is not meant to be complete or authoritative. Information about Lyme disease is constantly emerging and changing. Therefore any checklist is intended for use as a starting point. In traditional medicine, a physician performs a complete history and physical. Labs and studies assist in clarifying the differential diagnosis.
In Lyme disease, much debate exists about laboratory kits, the alteration of kits to have fewer possible bands, and which labs are optimally sensitive and specific. This checklist is not intended to address that issue or treatment.
Over 200 animals carry the Ixodes tick, which is the most commonly known insect spreading Lyme disease. With so many vectors, the underlying assumption behind this checklist is that Lyme is not rare in North America, Europe, South America, Russia, Africa or Asia.
Immediately upon the onset of a tick bite, it transmits a pain killer, anti-histamine and an anti-coagulant. Based on animal studies, it is also possible the bulls-eye rash is less common then assumed, in part because injections of spirochete related material in laboratory animals only show a rash with the second injection.
This checklist is offered with the sincere wish that others will improve on it. It is this author’s personal belief that tick and flea-borne infection medicine is as specialized as HIV and Hepatitis medical science.
Some of the checklist materials might be new to you, which underscores the need for another scale to add to the ones currently in existence. This list is based on a massive review of thousands of papers over a decade of full-time reading, 2012 science revelations, and/or massive chart reviews.
Since modern Lyme disease seems to focus on tick borne disease and other laboratory testing, I will start with lab testing considerations. If a lab test has a value or a percentage, the numbers I choose are intended to avoid missing those positive patients who otherwise would be overlooked. I am concerned about physicians and other healthcare workers not treating an infected patient, who over time can experience disability or death at a frequency that is impossible to determine.
LABORATORY TESTING-INDIRECT AND DIRECT
(Check those which apply)
- Vitamin D level is in the lowest 20%. If you supplement, it should be in top 50%.
- CD57 or CD58 is in the lowest 20th percentile.
- Free testosterone is in 10th percentile or below.
- In 5% of patients the testosterone or free testosterone is over the normal range.
- DHEA is in lower 20%. Or rarely is it fully over the top level.
- Free dihydrotestosterone is in the lowest 20th percentile or well over the normal range.
- Epstein Barr Virus is abnormal in any measure. [This virus is believed to be positive over normal positive levels in the presence of infections or high inflammation.]
- On the Western Blot, IgG or IgM any species specific band at any blood level, e.g., 18, 21, 23, 30, 31, 34, 37, 39, 83, 93.
- A free T3 level under 2.8 [the normal bottom range in 1990 was 2.6; the influx of large numbers of elderly patients reset the healthy “normal” range].
- Positive for viruses such as CMV, HHV-6, Coxsackie B Types 1, 2, 3, 4, 5, 6, Parvo B-19 or Powassan virus
- Positive for Mycoplasma, e.g. mycoplasma pneumoniae
- The patient is positive for infections other than routine Lyme, [that is Borrelia burgdorferisensu stricto, Borrelia afzelii and Borrelia garinii]. Some of the other infections also carried by infectious ticks, fleas or other vectors include Babesia (duncani, microti or other), Anaplasma (HGA), Ehrlichia (various species/strains), Rocky Mountain or other Spotted Fevers, Brucellosis, Leptospirosis, Q-fever, STARI (MasteraEAAAÂs Disease), Malaria, and Bartonella [e.g., B. henselae, B. quintana, B. elizabethae and B. melophagi]. Once tests are commercially available for testing all forms of protozoa affecting humans, including FL1953, all Bartonella species, and Borrelia miyamotoi and other Lyme species, reporting should increase.
- IL-B is in lowest 10th percentile.
- IL-6 is in lowest 10th percentile.
- TNF-alpha is under 2, or in lowest 20th percentile.
- A WBC count was, or is, under 4.5.
- Eosinophil level in the CBC manual exam is either at 0-1 or 6-7.
- Total manual Eosinophil level is 140 or less.
- XRAY or other study shows cartilage defects in excess of injury or age median.
- If a full auto-immunity panel is run with at least eight different tests, two are positive; for example, you have a positive anti-gliadin and a positive thyroid peroxidase.
- Positive or near positive (borderline) ELISA, PCR, or a positive tissue biopsy; or a tick from your body is positive for Lyme or other tick infection
- Lab tests show high inflammation, e.g., a high C4a, elevated cholesterol and C-peptide. These are never specific just for Lyme.
- Lab tests show a MSH level under 30 [the reference range of 0-40 is due to the increase of very sick patients tested, and 40-85 is a better reference range which was used before the flood of the sick reset the range of normal]. MSH is an anti-inflammatory hormone.
- VIP is under 20. This is an anti-inflammation chemical.
BODY EXAMINATION RESULTS
- Weight loss or gain in excess of 20 pounds in 12 weeks
- A round or oval rash with a dark center was or is present in a loose “bulls-eye pattern” or other size and shape rashes that have no other cause after exposure to ticks and vectors
- Healing is slow after scratches or surgery. For example, after a cat scratch, flea bite or tick bite the mark is still visible later.
- Skin on arms, hands or feet has a texture like rice paper.
- Clear reaction and effect is seen with antibiotic treatment. Specifically, a marked improvement or worsening of a serious medical problem or function is observed with a spirochete killing treatment, e.g., doxycycline, tetracycline, minocycline, any penicillin such as amoxicillin, azithromycin, clarithromycin or cefuroxime.
- Presence of skin tags, red papules of any size, excess blood vessels compared to peers, and stretch marks with color or in significant excess of peers.
- Moles and raised or hard plaques in excess of the few on normal skin
- Areas of skin with ulcerations such as those seen in syphilis, but at any location on the body
- Areas of clear hypo-pigmentation and hyper-pigmentation
- Positive ACA (Acrodermatitis chronica atrophicans) which is a sign of long term untreated Lyme disease. Some report ACA begins as a reddish-blue patch of discolored skin, often of the hands or feet. It may include the back in some patients. The lesion slowly atrophies over months to years, with many developing skin that is thin, dry, hairless, wrinkled and abnormally colored. The color of the extremities such as hands and feet can be red, dark red, brown, dark blue or purple.
SAMPLE NEUROLOGY EXAM
- Patient’s short-term memory is poor. For example, if asked to recall these numbers-23, 5, 76, 43 and 68-the patient cannot recall them.
- Patient cannot reverse four numbers, so if given-18, 96, 23 and 79-the patient cannot do it.
- If asked to subtract 17 from 120, (college graduate), it cannot be done in a timely manner. If a high school graduate, subtract 7 from 100 and continue to subtract by 7 four times in 20 seconds.
- Light headedness upon standing quickly in excess of peers, and with no clear cause
- Dizziness unrelated to position
- Dizziness made worse by Lyme killing antibiotics
- Trouble doing a nine step heel to toe straight line walk test with fingers slightly in pockets [The patient should not sway or need their hands pulled out to prevent a fall]. In patients with past experience in skating, skiing, dance or ballet this should be very easy and is rarely a challenge to such people. If it is not easy, it is suspicious medically, but not only for Lyme disease.
- Trouble performing a one leg lift, in which one leg is lifted 12-18 inches off the ground in front of you, as you count, e.g., “one Mississippi, two Mississippi, etc.”
- Positive nystagmus [your eye jerks when you look right or left]
PATIENT’S REPORTED PHYSICAL HISTORY
- Illnesses that come and go and decrease functioning with no certain cause
- Serious illnesses that undermine function with no clear cause, and which affect more than one body organ
- An abnormal lab result, physical exam finding or illness that is given many diagnoses or has no clear cause
- Mild to severe neurological disorders or psychiatric disorders
- A very profound neurological disease which does not clearly fit the labs, studies and course of the illness
- A moderate or severe medical, psychiatric or neurological illness. [Many severe disorders can be associated with spirochetes such as those causing syphilis, and some propose that Lyme is also related to a well-known serious brain disease.]
- Severe medical, psychiatric or neurology illness with uncommon features, such as Parkinson’s disease, appearing at a young age
- Facial paralysis (Bell’s palsy)
- Personality has changed negatively and significantly for no clear reason.
- Adult onset ADHD/ADD [Primary psychiatric biological ADD or ADHD is present at 7 years of age. Adult onset is a sign of a medical condition.]
- Functioning at work or in parenting is at least 20% reduced
- Patience and relational skills are decreased by 20% or more
- Inability to learn new information as well as in the past [receptive learning]
- Repeating stories or forgetting information told to close relations, such as a spouse, roommate, sibling, best friend or parent
- Fatigue in excess of normal, or fatigue that is getting worse
- Trouble sleeping including mild to severe insomnia and disrupted sleep
- Sleep in excess of 9 hours a day or night, or sleeping in excess of 9 hours every day if allowed
- Trouble falling asleep
- Trouble staying asleep [Taking a 5 minute bathroom break does not count]
- Gastritis or stomach sensitivity not caused by H. Pylori
- Sensitivity to lights, sounds, touch, smell or unusual tastes
- Sensitivity to cleaning chemicals, fragrances and perfumes
- Blood clots fast when you get a cut, or you have a diagnosed problem with clotting. This may also be seen in blood draws where blood draw needle clots when blood is being removed. If on a blood thinner, blood thinness level goes up and down too much.
- Someone in your neighborhood within 400 yards in any direction of your dwelling has been diagnosed with a tick borne infection [This includes vacation locations].
- You have someone living with you with any type of tick-borne infection-this assumes they were not merely tested for one infection. [It is not proven that the small Lyme-carrying ticks only carry Lyme, and it is possible some carry other infections without carrying Lyme at all.
- You have removed any ticks from your body in your lifetime.
- You have removed ticks from your clothing in your lifetime.
- After a tick or bug bite, you had a fever for at least 48 hours.
- After a tick or bug bite, you were ill.
- Grew up or played in areas with many small wild mammals
- When you are in a room that has visible mold or smells like mold and you start to feel ill, you do not return to your baseline health in 24 hours.
- Gaining or losing weight in a manner clearly inconsistent with diet and exercise
- New or more food allergies than ten years ago
- Feel worse after eating breads, pasta or sweets
- No longer tolerate or enjoy alcohol
- Anti-histamines are bothersome, more so than in the past.
- Reaction to medications is excessive (you are very “sensitive” to medications)
- Your response to antibiotics is significantly positive and you feel more functional, or you have the opposite reaction and feel worse, feeling ill, fatigued or agitated.
- Numbness, tingling, burning, or shock sensations in an area of skin
- One or more troublesome skin sensations that move over months or years and do not always stay in one location
- Muscle pain or cramps
- Muscle spasms
- Muscle wasting without a clear cause
- Trouble with your jaw muscle(s) or joint insomnia (TMJ)
- Joint defects in one joint with no clear cause if 20 or younger
- Psychosis at any age, but especially after 40 years of age when usually it would have already manifested itself
- Severe anxiety
- Mania or profound rage
- Depression or anxiety that did not exist when you were less than 25 years of age
- Any one of the following: paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa or obsessive-compulsive disorder.
- Increased verbal or physical fighting with others
- A mild to profound decrease of insight, i.e., an infected patient does not see their decreased function, failed treatment or personality change
- A new eccentric rigidity to hearing new medical or other important information
- Difficulty thinking or concentrating
- Poor memory and reduced ability to concentrate
- Increasingly difficult to recall names of people or things
- Difficulty speaking or reading
- Difficulty finding the words to express what you want to say
- Confusion without a clear reason
- An addiction that results in relapse in spite of sincere, reasonable and serious efforts to stop
- Intestinal troubles that are unable to be fully managed and/or which have no clear diagnosis
- Nausea without a clear reason
- Ear problems such as pain or increased ear “pressure”
- Any trouble with the senses (vision, sound, touch, taste or smell). The use of corrective lenses or contacts does not count, unless the prescription is changed more than expected.
- Buzzing or ringing in ears
- Double vision, floaters, dry eyes, or other vision trouble
- Conjunctivitis (pinkeye) or occasional damage to deep tissue in the eyes
- Cardiac impairment
- Chest pain with all labs and studies in normal range
- Occasional rapid heartbeats (palpitations)
- Heart block/heart murmur
- Heart valve prolapse
- Shortness of breath with no clear cause on pulmonary function tests, examination, lab testing, X-rays, MRI’s, etc.
- Air hunger or feelings of shortness of breath
- Any discomfort within two minutes of being in a musty or moldy location
- Rash or rashes without a simple and obvious cause
- Rashes that persist despite treatment
- Eccentric itching with no clear cause
- Hair loss with no clear cause
- Joint defects in two joints or more if 35 or younger
- Joint defects in three or more locations if younger than 55 with no clear trauma
- Swelling or pain (inflammation) in the joints [Most patients never have joint disease.]
- Joint pain that shifts location
- Neck stiffness
- Chronic arthritis with or without episodes of swelling, redness, and fluid buildup
- Chronic pain in excess of what seems reasonable
- Nerve pain without a clear cause
- Headaches that do not respond fully to treatment, or which are getting worse
- New allergies or increased allergies over those of your peers
- Any autoimmunity-Lyme and other tick infections, over many years, increase inflammation and decrease anti-inflammation chemicals. We believe this leads to increased food sensitivities, increased autoimmunity and a heightened sensitivity to various chemicals and medications.
- Day time sweats
- Night time sweats
- Flu-like symptoms
- Bladder dysfunction of any kind
- Treatment resistant interstitial cystitis
- Abnormal menstrual cycle
- Decreased or increased libido
- Increased motion sickness
- A spinning sensation or vertigo
Pets or farm animals positive with ANY tick borne virus, bacteria or protozoa, or clinical symptoms without a clear diagnosis or cause
- The patient’s mother is suspected of having or has been diagnosed with Babesia, Ehrlichia, Rocky Mountain Spotted Fever, Anaplasma, Lyme, Bartonella or other tick borne disease based on newer direct and indirect testing, or clinical signs and symptoms.
- A sibling, father, spouse or child with any tick borne infection
- Casual or work-related exposure to outdoor environments with brush, wild grasses, wild streams or woods (Examples- golf courses, parks, gardens, river banks, swamps, etc.)
- Pets, e.g., horses, dogs or cats, have had outdoor exposures to areas such as brush, wild grasses, wild streams or woods.
- Exposure to ticks in your past homes
- Clear exposure to ticks during vacations or other travels
- You played in grass in the past.
- You have been bitten by fleas.
- You have been scratched by a cat or dog.
Some of the above listed signs and symptoms fit other infections that may be more common than Lyme disease. Unfortunately, the research and experience indicating diverse infections carried by the Ixodes and other ticks is ignored. Further, “testing” usually involves one test for a mono-infection-Borrelia or Lyme. Ticks and other vectors should never be assumed to carry only Lyme disease.
Please note that when we are talking about the Ixodes tick we are not referring to this as a “deer tick” since it has over 200 vectors (Ostfeld). Many of the tick reduction options presently suggested are not successful in accomplishing their goals. Reducing deer populations, once thought to reduce tick populations and incidence of Lyme disease, may simply increase tick numbers in mammals and other carriers that live closer to humans.
All healers have their familiar way of thinking, testing and treating. Kuhn has shown we are all biased and struggle to be objective. Further, tick and flea infections have almost infinite pathological effects because the human body and these clusters of infections are so complex. I have not suggested a grid or a set number of symptoms, because one would not fit this list. Simply, the goal of this checklist is to have you think broadly.
You cannot use this checklist to diagnose Lyme disease or to rule it out.
A Lyme checklist is very medically important, since it is still an emerging illness and can sometimes disable or increase mortality risk in patients of any age if not diagnosed and treated early in the infection.
Writings in the past fifteen years have either viewed Babesia and Bartonella as mere “eco-infections,” or a footnote of a spirochetal infection [i.e., Lyme]. Either infection can hide for decades, and then possibly disable or kill a person by causing a clot, heart arrhythmia or by other means.
The detection of Lyme from stained tissue samples or blood is very difficult. Currently, the well-established indirect lab test patterns presented are not used or understood by all health care professionals. While this is fully understandable, I hope it may change in the coming decade. Tick infections have systemic impacts on the body, and are not limited to effects reported in journal articles, a few books or any national or international guidelines.
ABOUT JAMES SCHALLER, M.D., M.A.R.
Dr. Schaller has published the four most recent textbooks on Babesia and the only recent textbook in any language on Bartonella. His most recent book on Lyme, Babesia and Bartonella includes a “researchers only”AAAÂ list of over 2,600 references considered to be a start for basic education in tick infection medicine.
He published articles on both Babesia as a cancer primer and Bartonella as a profound psychiatric disease under the supervision of the former editor of the Journal of the American Medical Association (JAMA). He also published entries on multiple tick and flea-borne infections, including Babesia, Bartonella and Lyme disease, in a respected infection textbook endorsed by the NIH Director of Infectious Disease.
Dr. Schaller is the author of seven texts on tick and flea-borne infections. He is rated a TOP and BEST physician, with the latter being awarded to only 1 in 20 physicians by physician ratings. He is also rated a TOP physician by patients, again ranking in the top 5 percent of physicians.