Diagnosis, Treatment, & Misdiagnosis

Misdiagnosis and Lyme Disease

No other disease can lead to as many misdiagnoses as Lyme disease. Read some of the articles below and visit the links in this site. Couple this with the negative view many doctors have in the South towards Lyme disease and you have the recipe for disaster for your health. Some patients are told they could not possibly have Lyme disease because they live in the South only to be diagnosed years later and successfully treated for Lyme. This is the challenge and frustration that residents face in getting successfully diagnosed.

View the trailer from the documentary called Under Our Skin - http://www.underourskin.com/watch.html

The follow is text taken from a publication found above in the treatment section:

There are some key factors that exist in the medical community regarding Lyme disease; they go a long way in explaining why LD is often misdiagnosed and mistreated:

  1. LD is frequently misdiagnosed. Physicians frequently overlook cases of Lyme disease simply because they don't know the complex pathogenesis of the disease. They don't understand that Lyme disease causes well over 100 different symptoms; the common arthralgia (the medical term for joint pain) is a LD symptom that most physicians are familiar with; however, it is only one of many symptoms caused by Lyme disease. The clinical presentation of Lyme disease can be very subtle and complex. Most doctors don't know that laboratory tests are often useless and misleading. Results are frequently negative or inconclusive in individuals with borreliosis. The technology we have to deal with borrelia species is in need of significant improvement. The isolation and identification of borrelia is rarely successful; and no clinical laboratory test exists that can definitively diagnose Lyme disease. This is why a diagnosis of Lyme disease is heavily based upon clinical information such as history, symptoms, and response to therapy. There is an art to medicine when dealing with Lyme disease. Lyme experienced physicians must use keen clinical skills and judgment when dealing with suspect Lyme disease patients. They thoroughly evaluate the patient's history and symptoms when seeking a diagnosis and are able to recognize even the subtle symptoms of complex Lyme cases. Most physicians don't recognize the symptoms of chronic Lyme disease and will rely solely on laboratory tests to confirm a diagnosis. Frequently these lab tests are negative and mislead the physician and patient to search for another cause. Most MDs don't know that borrelia produce a large variety of toxic bacterial lipoproteins (BLPs) and they aren't familiar with the way these BLPs cause disease. Lyme disease specialists must use very keen clinical judgment when diagnosing cases of Lyme disease. In defense of the ignorant physicians, much blame can rest on health officials and the medical establishments that are not giving clinicians the appropriate information they need to diagnosis these difficult cases of Lyme disease. The criteria being used to report Lyme disease by physicians is often set by state health officials and is often based upon the rigid criteria established by the Center for Disease Control and Prevention (CDC). This CDC criteria was established for an epidemiological survey, which was designed to study the distribution of Lyme disease. The two-step method of the CDC uses a screening immunoassay for all patients followed by a more sensitive and specific Western Blot only if the screening test was positive. Unfortunately, this approach was originally intended for surveillance of Lyme disease in potentially asymptomatic patients, not for diagnostic purposes in patients with symptoms that are potentially related to Lyme disease. This criteria was not intended to be used as a standard for the clinical diagnosis of Lyme disease; the CDC has clearly stated this. Unfortunately, ignorant health officials and physicians continue to use these criteria for the clinical diagnosis of Lyme disease.
  2. Unfamiliar pathogenesis. Lyme disease has a complex pathogenesis that I'll discuss later in this report. Only a few medical professionals understand the pathogenesis of Lyme disease. Actually, very few MDs that specialize in Lyme disease understand this pathogenesis very well. This detailed information is not taught in medical schools or even in the general medical conferences or in post-resident seminars. Thus, most clinicians practicing medicine don't understand how borrelia causes disease. Without this knowledge, it is difficult to properly recognize, diagnose, and treat Lyme disease.
  3. LD is caused by many borrelia species. Another major oversight by the medical community regarding Lyme disease is that Borrelia burgdorferi is not the only bacterium that causes Lyme disease; there are many pathogenic borrelia strains; many of which cause borreliosis (Lyme-like disease). The causative agent, Borrelia burgdorferi, is a type of spirochete. When Bb was first discovered in 1982 it was thought that there was just one strain. Since then, about 100 U.S. and 300 worldwide strains of the bacterium have been discovered.

    In the mid-1990's genospecies were formed to group the many variations into subcategories.

    Borrelia burgdorferi sensu lato is name given to the overall category. In North America there is just one genospecies variant - Bb sensu stricto. In Europe there are three categories Bb sensu stricto, B. garinii, and B. afzelii. Asia has B. garinii and B. afzelii. Japan has B. japonica and B. miyamoto. These groups are evolving as new research discoveries occur.

    A new pathogen causing Lyme or "Lyme-like" disease has been reported. While not culturable, it has been named B. lonestari sp.

    B. andersonii, B. lonestari and B. miyamotoi have been identified by PCR and DNA sequence analysis as likely human pathogens in the U.S. Unfortunately, the criteria for clinical Lyme are set for only Borrelia burgdorferi; they were not designed for any other borrelia species. The reason that Borrelia burgdorferi is tracked by health officials but not other species is because it's the primary borrelia species that laboratories are able to identify and study. I admit that Borrelia species are very difficult to grow (fastidious) and work with in the laboratory. In most cases, laboratories are not even able to isolate and identify Borrelia species. Some other known strains of borrelia include: B. valaisiana, B. lusitaniae and B. bissettii.

  4. There are more carriers of LD than just the deer tick. There is a tremendous misunderstanding regarding the vector (carrier) that transmits Lyme disease. First of all, the familiar tick vector called the deer tick (Ixodes dammini) and black-legged ticks (commonly called deer ticks) (Ixodes scapularis) are more prevalent and spreading wider than reported. Secondly, these ticks are not the only vector able to transmit Borrelia species. Several other tick species such as the Lone Star ticks (Ammblyoma americanum), western black-legged ticks (Ixodes pacificus), and wood ticks or dog ticks (Dermacentor variabilis) can transmit it too. Unfortunately, this critical information is not being reported by health officials to the public and medical community. The widespread distribution of these tick vectors greatly increases the prevalence of Lyme disease well beyond that of official reports. The public needs to understand the potential danger of all tick bites, not only that from the deer tick.
  5. LD is more common than we think. The true prevalence of Lyme disease is much higher than is being reported by health officials. It is difficult to know how many cases are unreported but estimations suggest that the prevalence is actually 10-15 times higher than what is actually being reported. I personally believe it is much higher than that. Why are health officials under-reporting cases of Lyme disease? Again, the answer is because physicians don't recognize and report most cases. These misdiagnosed cases go unreported even though Lyme disease is a mandatory reportable disease (in the state of Iowa). So, a futile cycle exists causing numerous cases of Lyme disease to be misdiagnosed and unreported. That is, since most cases of Lyme disease go undiagnosed, health officials under-report Lyme disease; thus, physicians that read their official reports believe that the prevalence of Lyme is rare and place it low on their list of possibilities when faced with clinical cases that could be caused by Borrelia.
  6. Patients need longer and more comprehensive treatment. The standard therapy of 4 -6 weeks of antibiotic treatment is not sufficient to treat chronic Lyme disease. Chronic Lyme disease is often a life-long illness. Months, years, and often indefinite antibiotic therapy may be necessary to manage the disease. Ignorant physicians often use the standard treatment and consider the patient cleared of Lyme disease afterwards. Often these patients are not treated long enough to clear the stubborn Borrelia from the body. So, when the standard regimen of antibiotics is finished, the patients relapse with Lyme symptoms soon after the residual Borrelia reemerges. Unfortunately, the relapse is often not recognized by doctors and the patients are misdiagnosed with a different disorder. Not only does treatment be directed at the infection; it must also manage inflammation, help eliminate the BLPs produced, support the immune system, and many other associated problems such as hormone deficiencies.
  7. Wrong diagnosis leads to wrong treatment. Another critical point that needs to be highlighted is that Lyme ignorant physicians often administer medication that is contraindicated in patients with Lyme disease. The therapy most often prescribed that is extremely contraindicated is the use of steroidal anti-inflammatory; usually the glucocorticosteroids (such as prednisone). Lyme patients suffer with many painful inflammatory symptoms. MDs, not knowing that the patient has Lyme disease, think it is appropriate to treat these patients with steroids to reduce the pain and inflammation. Unfortunately, steroidal therapy is very deleterious to Lyme patients because it suppresses the patient's immune system causing it to tolerate the presence of Borrelia instead of attacking and killing it. This harmful treatment significantly diminishes the prognosis of Lyme patients; it prolongs the course of the disease and makes it more severe in the long run.

These are sites which give a good overview of this problem:

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This page was last updated on July 3, 2012