Neuropsychiatric manifestations of Lyme disease - Part III

How is Lyme disease diagnosed?

Infectious Diseases Society of AmericaMethod of diagnosis depends on whether you follow the Infectious Diseases Society of America (IDSA) recommendations[1] or the International Lyme and Associated Diseases Society (ILADS) recommendations.[2]

International Lyme and Associated Diseases SocietyWhich method you “believe” in may depend on whether you are satisfied with the diagnosis you have been given for your chronic unexplained panic attacks, anxiety, arthritis, fatigue, brain fog and generalized misery.

What tests are available for diagnosis? Whose tests are valid and whose are bogus?

Validity, of course, sometimes lies in the mind of the beholder, as well as the mind of those who developed the tests.

Applied kinesiology, Muscle testing, Neuromuscular feedback, dowsing

If you believe that muscle testing or dowsing is an accurate method of diagnosis, then for you the test is valid. If you believe that muscle testing or dowsing are voodoo or a scam, then for you the test is not valid. You may not get results that are reproducible by anyone else. For this reason, the scientific community generally does not give much credence to this method of diagnosis. Go here for a good explanation of the technique.[3]

If you do not know what muscle testing is, go here for an explanation.

If you think that bioenergetic medicine is bogus, then you can get your opinion confirmed here. Please note that Stephen Barrett, MD has not been licensed to practice medicine for many years.

ELISA – enzyme linked immunoabsorbent assay

This is the CDC-recommended screening test for Lyme disease. If this test is positive, the CDC recommends going on to the Western blot assay to make the diagnosis.

Unfortunately, 52% of patients with documented chronic Lyme disease have a negative ELISA test,[4] and therefore do not qualify (in conventional medicine) to be tested by the Western blot test.

Western blot – the gold standard of the CDC

By Centers for Disease Control definitions:

  • IgM WB is considered positive when at least two of the following three bands are present: 24 kilodalton (kDa) outer surface protein C (OspC)*, 39 kDa basic membrane protein A (BmpA), and 41 kDa (Fla). Disregard IgM results for specimens collected >30 days after symptom onset. [*Depending upon the assay, OspC could be indicated by a band of 21, 22, 23, 24 or 25 kDA.]
  • IgG WB is considered positive when at least five of the following 10 bands are present: 18 kDa, 24 kDa (OspC)*, 28 kDa, 30 kDa, 39 kDa (BmpA), 41 kDa flagellin (Fla), 45 kDa, 58 kDa (not GroEL), 66 kDa, and 93 kDa.

By CDC criteria (and by extension, also by IDSA criteria, if you do not have those specific bands on testing, you do not have Lyme disease.

Advanced Laboratory ServicesLaboratory culture

The CDC considers a positive culture to be laboratory evidence of Lyme disease. However, the CDC posted a warning in 2014 stating concern regarding a new culture method for Borrelia burgdorferi not approved for diagnosis of Lyme disease. They called the Advanced Laboratories test a “home brew” test, stating that just because the lab was CLIA certified did not mean that the test was valid.

Those few patients with a diagnosis of Amyotrophic Lateral Sclerosis (ALS) whom I have worked with have ALL had a positive culture for Borrelia burgdorferi. This is called anecdotal evidence – but it is certainly suggestive.

DNA PCR polymerization testing

DNA ConnectionsThis test may be done on blood or urine. Mayo Clinic does this test to detect the Borrelia species named after Mayo, and declares the test to be valid. PCR testing of joint fluid has been shown to be accurate.

In 2012 the CDC declared that urine was not a suitable material to test by PCR testing for Lyme disease.[5] In 1996 an article reported 97 patients who continued to excrete Borrelia DNA despite supposedly adequate antibiotic treatment.[6]

So whom do you believe?

The most recent CDC criteria for diagnosis and treatment of Lyme disease in 2017 are posted on the CDC website:

For the purposes of surveillance, laboratory evidence includes:

  • A positive culture for B. burgdorferi, OR
  • A positive two-tier test. (This is defined as a positive or equivocal enzyme immunoassay (EIA) or immunofluorescent assay (IFA) followed by a positive Immunoglobulin M[7] (IgM) or Immunoglobulin G[8] (IgG) western immunoblot (WB) for Lyme disease) OR
  • A positive single-tier IgG2 WB test for Lyme disease[9].

The IDSA criteria for diagnosis of Lyme disease follow the CDC criteria exactly. The most recent guidelines date from 2006, and are in the process of being updated in 2017.

The IDSA – the Infectious Diseases Society of America – the official voice of allopathically trained infectious disease specialists, gives this definition of Lyme disease in its updated guidelines from 2006[10]:

“Lyme disease is caused by an infection with the bacteria Borrelia burgdorferi. This infection is principally transmitted by the black-legged deer tick (Ixodesscapularis) that typically feeds on small mammals, birds and deer but may also feed on cats, dogs and humans. Although the disease has been reported in nearly all states, the majority of cases are concentrated in the Mid-Atlantic and northeast states. Other regions in the United States with significant numbers of cases include Wisconsin, Minnesota and northern California.”

“Most people who are infected with Lyme disease have a circular, red rash surrounding the site of a tick bite, that may be accompanied by muscle and joint aches and less commonly, facial paralysis.

“95 percent of cases of Lyme disease are cured with 10 – 28 days of oral antibiotics.

“Long-term antibiotic treatment is not proven to be effective and may be dangerous.

“To be certain they get the proper medical care, patients who have lingering symptoms after proper treatment (those with so-called “chronic” Lyme disease) should ask their doctors if the diagnosis was accurate or if they may have a different or new illness.

“high-risk tick bites may be treated with a single dose of the antibiotic doxycycline for people who are eligible for the drug. Criteria for eligibility include:

  • the attached tick can be reliably identified as an Ixodes scapularis tick that is estimated to have been attached for 36hours or longer;
  • preventive treatment can be started within 72 hours of the time the tick was removed;
  • ecologic information indicates that the local rate of infection of these ticks with B. burgdorferi bacteria is 20 percent or greater.

With most physicians in the country treating their patients suspected of having Lyme disease by the above criteria, the incidence of Lyme disease has tripled in three years, from 12,000 reported cases in 2012 to about 38,000 reported cases in 2015, the latest year for which statistics are available on the CDC website. It is estimated that at least 10 times that many cases go unreported or undiagnosed.

Why do most of our patients ultimately diagnosed with Lyme disease come to me saying that they have seen multiple doctors, and have been told they do not have Lyme disease – and yet, when we test them appropriately and then treat them for Lyme disease and/or co-infections, their symptoms generally improve and often go away completely?

The ILADS criteria for diagnosis and treatment of Lyme disease are significantly more liberal and extensive.

- there is no requirement for residence in a Lyme-endemic area. People travel, they take their dogs with them, and songbirds who are tick-carriers pay no attention whatsoever to boundaries, so the statement “There is no Lyme disease in Arizona (or Colorado, or Nevada, or Canada...) is both uninformed and inaccurate."

- Lyme disease is a clinical diagnosis, not a laboratory diagnosis. If a patient has multi-organ systemic disease without other definable specific cause, and they have had any potential exposure to ticks, the diagnosis can be at least entertained, and appropriate testing be ordered.

- more than 50% of patients have no recollection of a tick bite.

- more than 50% of patients have no recollection of any kind of rash. The “bull’s eye” rash is classic when present, but may not always look like a bull’s eye. When the bull’s eye is seen, however, a definitive diagnosis of Lyme disease may be made without further verification prior to treatment.

- the Elisa screening test has only 65% sensitivity. Therefore, it misses at least 35% of culture-proven Lyme disease patients. A good screening test should miss no more than 5% of patients.

- even when the Lyme organism can be grown in culture, 20-30% of patients never have a positive Western blot test. Bands 31 and 34 are highly specific to Lyme – these bands are not reported in commercial Lyme tests, which are FDA-approved.

- there are at least five subspecies of Borrelia burgdorferi, and over 100 strains of the organism in the USA alone.

- testing for Babesia, Anaplasma, Ehrlichia and Bartonella should be performed along with testing for Borrelia.

- 30 days of antibiotic therapy are generally inadequate to treat chronic Lyme disease. This may be adequate for acute infection, but not for chronic.

How is Lyme disease treated according to ILADS criteria?

ILADS published Clinical Guidelines which are listed on the National Guidelines Clearinghouse website.

Recommendations for treatment[11] include the following:

  • Grading of Recommendations Assessment, Development and Evaluation-based analyses found the evidence regarding these scenarios was of very low quality due to limitations in trial designs, imprecise findings, outcome inconsistencies and non-generalizability of trial findings.
    • It is impossible to state a meaningful success rate for the prevention of Lyme disease by a single 200 mg dose of doxycycline because the sole trial of that regimen utilized an inadequate observation period and unvalidated surrogate endpoint.
    • Success rates for treatment of an EM rash were unacceptably low, ranging from 52.2 to 84.4% for regimens that used 20 or fewer days of azithromycin, cefuroxime, doxycycline or amoxicillin/phenoxymethylpenicillin (rates were based on patient-centered outcome definitions and conservative longitudinal data methodology).
    • In a well-designed trial of antibiotic retreatment in patients with severe fatigue, 64% in the treatment arm obtained a clinically significant and sustained benefit from additional antibiotic therapy.
  • The optimal treatment regimen for the management of known tick bites, EM rashes and persistent disease has not yet been determined. Accordingly, it is too early to standardize restrictive protocols.
  • Given the number of clinical variables that must be managed and the heterogeneity within the patient population, clinical judgment is crucial to the provision of patient-centered care.
  • Based on the Grading of Recommendations Assessment, Development and Evaluation model, International Lyme and Associated Diseases Society recommends that patient goals and values regarding treatment options be identified and strongly considered during a shared decision-making process.

What can you do about this sad state of affairs?

You have many choices:

  1. Accept your doctor’s statement that you do not have Lyme disease and you will just have to live with your symptoms. Take a prescription for symptom relief.
    1. Narcotics like Percocet® or Oxycontin® for the pain.
    2. Antidepressants like Wellbutrin® or Prozac® for the depression.
    3. Anxiolytics like Xanax® or Ativan® for the anxiety.
    4. Sleeping pills (AKA soporifics) like Ambien® or Seroquel® or Trazodone for the insomnia.
  2. Believe the healthcare practitioner who says your test is negative, therefore you do not have Lyme disease, your symptoms are caused by something else, but they can’t tell you exactly what, therefore you should take a pill for ... (see #a above)
  3. Believe the healthcare practitioner who says your test is positive, and you can be cured by taking a two-week course of oral antibiotics, because that is the recommendation of the IDSA – Infectious Diseases Society of America, the “final word” for doctors who specialize in infectious diseases.
  4. Believe the healthcare practitioner who says your test is positive, but you had the disease a long time ago, you do not have it currently, therefore your symptoms are caused by something else... see #b above.
  5. Believe the healthcare practitioner who says your test is positive, and you can be cured by taking antibiotics.
  6. Believe the healthcare practitioner who says your test is positive, and that it may take a long time to treat the disease – months to years – and that there may also be other factors to consider:
    1. What you are eating – and whether any of those foods is creating symptoms in you (e.g. gluten, dairy products, nightshades, carbohydrates…)
    2. What you are carrying inside you – your total toxic load – abnormal or toxic gut bacteria, heavy metals from dental amalgams (“silver” fillings are 50% mercury), joint implants, breast implants
    3. What you are exposed to – workplace chemicals, scents, electromagnetic frequencies, toxic family life, toxic job
  7. Believe the healthcare practitioner who says that even though your test may be negative, you could still have Lyme disease, and it would be worth treating with (any or all)
  • Homeopathic remedies
  • Herbal remedies
  • Oral antibiotics
  • Antibiotics given by injection
    • i. Intramuscular
    • ii. Intravenous

My personal recommendations lies somewhere between #6 and #7. Lyme is a complex disease.

If you choose to believe your own symptoms, and choose to believe that you are neither depressed nor mentally ill, then do please find a healthcare practitioner who has some understanding of Lyme disease and who is willing to treat you.

ILADS, the International Lyme and Associated Diseases Society, is an organization dedicated to teaching both patients and doctors about Lyme disease. The organization has physicians who volunteer their time to train doctors about this new 21st century epidemic and how it can most effectively be treated. Such doctors are called “Lyme literate” and receive special certification from ILADS in recognition of their time and expense devoted to learning about the disease, contributing to research about the disease, and treating patients with the disease.

You can download a list of articles about Lyme disease in its many manifestations here, compiled by Dr. Robert Bransfield. Happy reading! There are 38 pages of references.

You can find a Lyme-literate doctor who will work with you. A list of ILADS-trained doctors and ILADS physician members can be found here.

Arizona Center for Advanced MedicineIt may take years to relieve symptoms completely. Or it may take only months. How long it takes depends on how long you have been ill, your overall state of health, your willingness to explore your total toxic load and eliminate that over which you have control – things like foods, diet sodas, tobacco, pharmaceutical drugs, toxic relationships or environments, among other possibilities.

Please feel free to call us at the

Arizona Center for Advanced Medicine 480-240-2600

for a free 15-minute consultation with one of our doctors,

to determine whether we may be the right treatment center for you.


[1] Infectious Diseases Society of America - http://www.idsociety.org/Index.aspx

[2] International Lyme and Associated Diseases Society - http://www.ilads.org/

[4] Donta, Sam. "Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia." (2002).

[6] Bayer, M. E., Lanmin Zhang, and Margret H. Bayer. "Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms. A PCR study of 97 cases." Infection 24.5 (1996): 347-353.

[7] IgM WB is considered positive when at least two of the following three bands are present: 24 kilodalton (kDa) outer surface protein C (OspC)*, 39 kDa basic membrane protein A (BmpA), and 41 kDa (Fla). Disregard IgM results for specimens collected >30 days after symptom onset. [*Depending upon the assay, OspC could be indicated by a band of 21, 22, 23, 24 or 25 kDA.]

[8] IgG WB is considered positive when at least five of the following 10 bands are present: 18 kDa, 24 kDa (OspC)*, 28 kDa, 30 kDa, 39 kDa (BmpA), 41 kDa flagellin (Fla), 45 kDa, 58 kDa (not GroEL), 66 kDa, and 93 kDa.

[9] While a single IgG WB is adequate for surveillance purposes, a two-tier test is still recommended for patient diagnosis.

[11] Complete Treatment Guidelines are downloadable from: http://www.ilads.org/lyme/treatment-guideline.php

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