This is an excerpt taken from Dr. Rawls’ new best selling book Unlocking Lyme. This installment focuses on how reliable diagnostic testing is for Lyme disease and Lyme coinfections.
by Dr. Bill Rawls
Last Updated 8/3/17
An Introduction to Lab Testing
Labs are important, but it’s also important not to get too hung up on the results. The problem of chronic Lyme disease, something I know from personal experience, cannot be solved exclusively by looking at lab results. In fact, becoming overly obsessed with lab results can hinder the recovery process.
The human body is an immensely complex biological machine with millions of different biochemical functions happening simultaneously. Lab tests provide an ever so small glimpse at certain key functions. From those indicators, determinations can be made about how well the body is functioning and whether illness is present.
Laboratory assessment, however, is far from absolute. Because the human body is so complex, the ability of lab testing to predict a specific chronic illness is often limited. All labs are subject to variability and different interpretations.
There are literally thousands of different lab tests that can be performed, but only a fraction of them are well understood. Many should be left for research purposes only. Problems arise when doctors order obscure tests that are still poorly understood. Before you have labs drawn, ask your doctor to explain the purpose of each test.
The information provided by labs is only valuable if it is put to good use. Millions of dollars are wasted every year on labs, with the resulting information never used. Before you have labs drawn, ask yourself and your doctor: “Will the information from this lab (or any other diagnostic test) influence my approach to getting well?” If the answer is no, then you may want to reconsider having that particular test performed.
For chronic illnesses like chronic Lyme disease and fibromyalgia, general lab evaluations are usually unremarkable. The greatest value of labs is ruling out the possibility of a more threatening condition. Mildly abnormal labs generally return to normal as health improves.
The following is a guide to the labs that I’ve found to be most valuable in evaluating chronic illnesses like chronic Lyme and fibromyalgia. It is, by no means, an absolute or exclusive list.
Basic Lab Tests Everyone Needs
There are certain basic tests and a few specialized tests that have great value. These are the tests that everyone should consider getting. The following list of labs can be ordered by any healthcare provider. Typically, these tests are covered by health insurance.
Complete Blood Count (CBC with diff)
Measures cellular components of blood.
- White Blood Cell Count (WBC). Low WBC (< 4000) can indicate chronic infection with a virus or low-virulence bacteria such as Mycoplasma, but it can occur in healthy people. Elevated WBC (>11,500) can indicate an active infection.
- Differential (diff). Measures different types and ratios of white blood cells present. Sometimes it can be helpful for defining a particular type of infection (bacteria vs. viral vs. parasite), but it is not always absolute.
- Hemoglobin (Hb). Anemia is indicated by Hb < 12.0. Anemia can be caused by blood loss (heavy periods), inadequate production of RBC’s (chemotherapy), and increased destruction of RBC’s (infection: malaria, Babesia, Bartonella). Hb levels > 16.0 can be associated with smoking, living at altitude, and excessive iron stores in the body (hemochromatosis).
Measure of common chemical components of the body.
- Electrolytes. Sodium, potassium, chloride, CO2; these are generally normal, unless you are really sick.
- Liver function. Abnormal values suggest an elevated rate of liver compromise, possibly from toxins or viruses such as hepatitis. Elevated bilirubin suggests increased breakdown and turnover of red blood cells (Babesia, Bartonella). Certain low-virulence microbes (Bartonella) destroy red blood cells.
- Kidney function. BUN and creatinine screen for kidney disease.
Excessive carbohydrate consumption is a major system disrupter that must be controlled before recovery is possible. Three primary tests: fasting blood glucose, hemoglobin A1c, and fasting insulin define insulin resistance and abnormal glucose metabolism.
- Fasting blood glucose. Levels >100 mg/dl suggests pre-diabetes. Levels >126 mg/dl suggests overt diabetes.
- Fasting insulin. Levels defined as elevated suggest insulin resistance (normal range varies depending on the lab). Insulin resistance is a factor contributing to immune dysfunction and hormone imbalances.
- Hemoglobin A1c (HbA1c). HbA1c measures the cumulative damage done by excessive carbohydrate consumption. Ideal is 4.8-5.2%. Levels > 5.6% indicates pre-diabetes. Levels > 6.4% indicates overt diabetes.
Magnesium and calcium are the primary minerals measured.
- Magnesium. Magnesium levels are often low during chronic illness. Aggressive magnesium supplements, however, can often worsen Lyme symptoms. Generally magnesium levels will return to normal as health improves.
- Calcium. Persistently elevated calcium levels can indicate the presence of a small benign tumor producing excessive parathyroid hormone (PTH). Symptoms can mimic fibromyalgia and chronic Lyme. Follow up testing should include PTH levels.
Complete thyroid function should include Thyroid Stimulating Hormone (TSH), free T4, free T3 and thyroid antibodies. Illnesses associated with Chronic Immune Dysfunction are commonly associated with abnormal thyroid function. Correcting abnormal thyroid function can accelerate recovery. Testing for thyroid antibodies (TPO and thyroglobulin) is important to identify Hashimoto’s disease, a form of autoimmune thyroid dysfunction.
Basic evaluation for cardiovascular risk. Cholesterol commonly increases with age and decline in liver function. Cholesterol can be lowered by following specific nutritional guidelines. Significantly elevated cholesterol, however, should be addressed by your healthcare provider.
Chronic Immune Dysfunction and stealth microbes play a major role in autoimmunity. The type of autoimmune illness that occurs is related to the factors that disrupt immune function, the person’s genetics, and the spectrum of stealth microbes. Though diagnosis of specific autoimmune illnesses is complex and requires extensive testing, basic screening for autoimmunity can be done with two tests.
- Rheumatoid factor. A standard test if severe arthritis is present.
- ANA titer. Positive in many types of autoimmune disease.
C-Reactive Protein (CRP)
CRP is a measure of inflammation. It is probably more valuable for monitoring health habits than anything else. High levels (>10) correlate with poor health habits and increased risk of disease. Normal CRP levels, however, are often present in individuals who follow good dietary habits, despite suffering from a chronic illness.
Vitamin D is not only important for healthy bones, but also very important for normal immune function. There are several forms of vitamin D—calcidiol (25 OH vitamin D) is the most commonly measured form in blood tests. Normal ranges for blood levels of Vitamin D and indications for supplementation are both controversial. The official Institute of Medicine defines calcidiol levels >20 ng/ml as normal and >50 ng/ml is too high.
Their recommendations for daily vitamin D include sun exposure or 600-1000 IU of vitamin D3 daily. The Vitamin D Council, however, recommends 40-100 as the normal range, generally requiring much higher doses of supplementation. Levels of >40 ng/ml have been associated with reduced risk of many cancers and chronic disease in general. Achieving consistent vitamin D levels > 40 ng/ml is important for CF/FMS recovery. Ideally, have your levels checked every 6 months.
Low B12 levels (normal ranges vary between labs) can be a sign of low intake (vegetarians), but more commonly a sign of inadequate absorption and gastric dysfunction. Vitamin B12 generally increases spontaneously with improved health habits, but in the short term, B12 injections or sublingual (under the tongue) supplements can improve energy levels. Activated forms of B12 are better absorbed orally than the more common inactive forms used in most multivitamin products.
Ferritin measures iron stores. Low ferritin levels can indicate low stores of iron in the body, which can be associated with fatigue. High ferritin levels indicate abnormal retention of iron in the body (called hemochromatosis) which can be associated with liver damage and nonspecific symptoms. High levels can also be associated with autoimmunity and chronic infection.
Test strips for urine testing can be obtained over the Internet without a prescription.
- pH. Urine pH should be consistently alkaline, reflecting high consumption of vegetables and fruit.
- WBC’s, nitrites. These tests show evidence of a urinary tract infection.
- Protein. Elevated levels can indicate kidney disease.
- Bilirubin. Elevated levels show increased turnover or destruction of red blood cells.
Mold and Mycotoxins
Evaluation for mold is indicated anytime there is any suspicion of mold. It is possibly the most important evaluation you can do. Mycotoxins (mold toxins) are potent immune disruptors and cause a wide spectrum of nonspecific symptoms including neurological symptoms and persistent insomnia. If mold sensitivity is an issue, the only option for complete relief is eradicating mold from your environment.
The first step in evaluating for mold is using your nose and eyes to search for it. Moisture is necessary for mold to grow. Mold, however, can be hidden in walls, crawl spaces, and attics. It is possible to test for mold with simple kits that can be ordered over the Internet. It is also possible to test for mycotoxins in urine.
Advanced Laboratory Testing
The following tests are discussed because they are often recommended, but seldom influence the status of recovery. These tests should be reserved for special circumstances or when recovery is not progressing, but not performed routinely.
The ratio of omega-3 fatty acids to omega-6 fatty acids is a marker for balance of inflammatory factors in the body. Proper diet and supplementation generally result in satisfactory omega fatty acid ratios.
Cytokine Testing (Th1/Th2)
Cytokines are the messengers of the immune system. Cells of the immune system use cytokines to signal to each other and pass directions. Stealth microbes manipulate cytokines to generate inflammation and redirect immune functions in favor of the microbe. Though the immune system and its interactions with different microbes is extremely complex (still beyond our complete understanding), effort has been made to simplify immune functions into two pathways important for chronic illnesses associated with stealth microbes. “Th” stands for T helper cells.
- Th1 pathway. Associated with cell-mediated immunity and intracellular pathogens. When overactive is associated with inflammation and autoimmunity. Cytokines IL-2, IFN-gamma, and TNF-alpha.
- Th2 pathway. Associated with antibody-mediated immunity and extracellular parasites. When overactive is associated with asthma and allergies. Cytokines IL-4, IL-5, IL-6, IL-10, and IL-13.
- Adrenal function. Adrenal dysfunction is a given in any chronic illness. Elevated cortisol levels, associated with increased physical and emotional stress contribute to sleeplessness, stress intolerance, agitation, and anxiety. Prolonged adrenal stress can deplete cortisol, with symptoms of extreme fatigue, total stress intolerance, and excessive sleeping (but sleep is dysfunctional and not restful). Because adrenal dysfunction is always present in chronic illness and generally normalizes with proper therapy, measurement of adrenal hormone levels is generally not necessary. On rare occasions when a patient is not improving, measurement of cortisol can be beneficial. The best measure is salivary cortisol, measured 4 times over 24 hours.
- Salivary cortisol, measured 4 times over 24 hours — measures adrenal function, but symptoms are often a better guide.
- DHEAS — measures adrenal function; high indicates excessive function and low indicates inadequate function. This test is often performed, but is not as reliable as cortisol measurement (which also usually is unnecessary, symptoms are generally adequate to evaluate adrenal function). It is useful in only select circumstances.
Menopause can exacerbate symptoms of any chronic illness. Though usually obvious, with the absence of periods, menopause can be confirmed by elevated a pituitary hormone called FSH. Levels >25 indicate menopause. Other hormone levels, including estrogen and progesterone, are generally not necessary to measure, but may be recommended by your healthcare provider. In men with fatigue, total and free testosterone is sometimes indicated.
- Female — Salivary or blood E1, E2, E3, free testosterone, progesterone, FSH, (screening FSH, Estradiol levels)
- Male — free testosterone, total testosterone
Testing for Toxins
- Heavy metals. Build-up of heavy metals and other toxins can be a hidden factor in chronic illness. Every person living on the planet today, however, is carrying some heavy metals and no one really knows how much is enough to cause disease. The biggest source of concern is amalgam dental fillings (though recent opinions are suggesting that amalgam fillings do not shed as much mercury as once thought). A healthful diet and lifestyle, along with key supplements will generally reduce heavy metals in the body. Because with heavy metals in complex, save heavy metals for last on the list. If you are still not getting better, ask your doctor about testing.
- Hair samples — the least reliable method of testing for heavy metals.
- Blood test — valuable only for testing acute exposure.
- 24-hour urine after DMSA — most accurate assessment. Urine is collected for 24 hours after use of DMSA 100 mg to pull heavy metals out of tissues.
- Organic toxins. The presence of organic toxins (pesticides, plastic residues) is almost a given and can be addressed with dietary and lifestyle modifications. Chlorella is excellent for pulling organic toxins out of the body.
Chronic gastrointestinal dysfunction is often associated with sensitivities to commonly consumed foods (not the same as food allergies, like peanut allergy). Symptoms associated with food sensitivities are commonly delayed for 1-2 days after the food is consumed. Typical symptoms include fatigue, joint pain, muscle pain and general achiness—in fact, food sensitivities alone can be the root of many symptoms.
- Food sensitivities are best defined by an elimination diet—a diet designed to selectively identify and eliminate problem foods (a basic elimination diet is included in the Purify chapter).
- Problem foods can also be delineated with specific IgG and IgA testing. A basic food sensitivity panel can be obtained for about $120. This shows general categories of foods to be avoided. Generally, food sensitivities resolve as health improves.
Comprehensive stool analysis
Stool analysis is valuable for defining gastrointestinal dysfunction and diagnosing parasites and yeast overgrowth. This expensive test is generally reserved for extreme cases when dietary modifications and supplements are not enough to overcome gastrointestinal problems. It is rarely necessary.
Folate and methylation
There are about 40 different genetic mutations that can affect MTHFR. About 40% of the population has one abnormal gene and are moderately affected. About 12% of the population has two abnormal genes and is more significantly affected. Problems associated with MTHFR mutations include elevated risk of stroke and heart attack, increased cancer risk, defects in embryo development (spinal tube defects), and neurological symptoms including insomnia, irritability, depression, brain fog, neuropathy (burning tingling feet and hands), and restless leg syndrome. It also can be a factor in recovery from fibromyalgia and Lyme disease.
For folks who want the technical details:
MTHFR is a gene that codes for an enzyme called methylenetetrahydrofolate reductase. This enzyme is vital for creating 5-methyltetrahydrofolate, an essential substance for converting the amino acid homocysteine into the amino acid methionine. Methionine is essential for amino acid synthesis, formation of glutathione (important intracellular antioxidant), formation of DNA, and detoxification. Methionine is important for formation of SAMe, which plays a key role in metabolism of dopamine, serotonin, and melatonin. Without this important enzyme, all these pathways are blocked.
Testing for MTHFR Mutations
This is a simple blood test that costs about $150. Checking for elevations of homocysteine and RBC folate in the blood is an indirect way to check for the problem. The best solution for elevated levels is getting plenty of natural 5-methyltetrahydrofolate (methylfolate for short). Leafy greens are a great source, but if you have a mutation, supplementing is a good idea. Folic acid, found in most multivitamin products, will not work because it must be converted by the deficient enzyme.
You must supplement with 5-methyltetrahydrofolate. 5-methyltetrahydrofolate 400-800 micrograms daily is generally adequate for anyone with a single mutation (especially if you eat plenty of leafy greens). If you have a double mutation, it is a good idea to take an extra 400-800 micrograms. For additional benefit, you can add SAMe 400-800 mg daily. SAMe supports detoxification and can improve sleep (take it in the evening).
Chemical components called “methyl groups” that are essential for proper detoxification can also be supplied by vitamin B6 and vitamin B12. It is, however, important to get the activated forms of these important vitamins. The activated form of vitamin B6 is pyridoxal 5-phosphate and the active form of vitamin B12 is methylcobalamin.
Healthful diet and adequate supplementation of methyl donors is generally adequate for recovery. MTHFR testing is only necessary if recovery is not progressing.
In my medical practice, I had the fortune of working with a lab that measured MTHFR for no charge. For the five years it was available, I tested all my patients. Surprisingly, I found it played a more minor role in recovery than I expected. I had chronic Lyme sufferers who were severely symptomatic who had no mutations and perfectly healthy people who had double mutations.
Testing Beyond the Lab
Certain types of symptoms require evaluation by diagnostic procedures conducted by specialists in the respected field.
Neurological Symptoms – Severe neurological symptoms are evaluated with nerve conduction test and MRI of the brain. The purpose is ruling out multiple sclerosis.
Cardiac Symptoms – Chest pain and irregular heart beat are evaluated by EKG and Holter monitor. Findings may lead to cardiac catheterization.
GI Symptoms – Stomach pain and symptoms are often evaluated by upper endoscopy. Lower intestinal and colon symptoms are evaluated by colonoscopy. Routine colon cancer screening with colonoscopy is recommended every 10 years for everyone over 50.
Testing for Microbes
“B. burgdorferi doesn’t like to come out in the open, so checking Blood, CSF, and SF is like looking for cockroaches in the middle of a busy highway.”
– Mike D. Maddox DC, Lyme Specialist
Testing for microbes in chronic illness is often like opening up a can of worms. Detection of a microbe in the body is only as good as the technology, and right now, the technology for diagnosing Borrelia and other low virulence stealth microbes is fair at best (they’re called stealth microbes for a reason). And that’s for the species of microbes we know about. New forms of Borrelia and other stealth microbes are discovered every day.
The long and the short of it is all ticks carry potentially pathogenic microbes. If you have ever been bitten by a tick, you have been exposed and you likely harbor one or more stealth microbes in your body. If you have all the symptoms of chronic Lyme disease, then the chances that you are carrying some species of Borrelia is high — no matter what testing shows.
When you consider that Borrelia has been prevalent in ticks worldwide for thousands of years and that asymptomatic carriers are extremely common, Borrelia is probably much more prevalent than is widely accepted.
The long and the short of it is all ticks carry stealth microbes. If you have ever been bitten by a tick, you have been exposed and you likely harbor one or more stealth microbes in your body. If you have all the symptoms of chronic Lyme disease, then the chances that you are carrying some species of Borrelia is high — no matter what testing shows.
The other side of the story is that as testing gets better and better, it will likely reveal that many healthy people Borrelia and everyone harbors some stealth microbes — Mycoplasma, Bartonella, Chlamydia, and many others are remarkably common (“Lyme confections”).
The key to being healthy is robust immune function.
When you start seeing chronic Lyme disease for what it is, Chronic Immune Dysfunction, with a pot of stealth microbes boiling over, the compulsion to test for specific microbes becomes less relevant. There are always possibilities that can’t be accounted for. When I evaluate a person with possible chronic Lyme disease, it’s easier to just assume that Borrelia and other stealth microbes are present. This allows me to have less reliance on unreliable lab results.
To Test or Not To Test
Our ability to test for microbes species is limited to a small piece of a much larger pie of unknowns. The total microbiome of the body consists of many thousands of microbe species; who knows how many of them are stealth microbes or opportunistic pathogens. A comprehensive herbal protocol covers for most possibilities, both known and unknown.
Which brings up the question: “Why test at all?”
Frankly, the most pressing reason to test is academic…that “need to know” that we all share as humans.
If you choose a conventional route of therapy, however, testing will likely be necessary; in fact, many doctors will not consider writing a prescription until testing is done and results are available. Considering the extreme limitations of the present state of testing for stealth microbes, it is one of the extreme drawbacks to pursuing a conventional route of therapy.
If you chose a natural route of therapy, testing is much less necessary. A comprehensive herbal protocol covers for Borrelia and most other possibilities (without the toxicity associated with drugs and synthetic antibiotics). Many people have gotten well without doing any testing at all.
The biggest reason to test is if you are not improving. Sometimes testing can uncover the presence of more virulent microbe (Babesia, Ehrlichia, Rickettsia, Anaplasma), or reactivation of a herpes-type virus for which a prescription antimicrobial may provide benefit.
That nagging “need to know,” however, is a fundamental characteristic of human nature. “Could there be something present that could be easily treated?” is a question that often lingers in back of everyone’s mind. Before proceeding any further, however, know that testing for microbes can unnecessarily complicate your recovery.
There are no absolutes when it comes to stealth microbes. A negative test does not rule out the possibility of a certain microbe being present or the possibility of other microbes being present. Diagnosis should not rely on labs alone. It’s a matter of adding up all the clues including symptom profile, prevalence of possible microbes in the geographic area, and any other factors that may be helpful in making the diagnosis.
If you decide to do lab testing, the place to start is with labs covered by your medical insurance. Insurance policies are highly variable, however, and it is up to you (not your doctor) to find out what is and isn’t covered.
Most health care insurance policies will cover testing for Borrelia and possible coinfections with in-network labs. Most in-network labs, however, only do basic level testing, which often carries a low probability of actually diagnosing an offending microbe.
Specialty labs do more advanced and sophisticated lab testing, but are generally not covered by insurance. Expense is the primary reason these tests are not covered by insurance. Each test can run $300 to $900 dollars. Testing for Borrelia alone is not sufficient; if you are going to do testing, you really need to test for all the known possibilities. This can run into many thousands of dollars.
Because of demand, there is a proliferation of specialty labs doing testing. The oldest and possibly the most well known is IGeneX, but there are many new and innovative testing labs coming on the scene. Blood can be drawn at the doctor’s office and sent to a specialty lab, but you will be responsible for the bill.