Lyme, Lyme-Like Illness and Tick-Related Disease - Info for Physicians and Medical Professionals
In the last few months Lyme disease has received renewed attention in the national media. Many articles have been written concerning the political views, IDSA long term treatment guidelines and questions about misdiagnosis and the chronic form of this disease. The local news has brought attention to the 2008 tick season as possibly one of the worst on record in the Carolinas. However, the final decision of the diagnosis and how best to treat the patient rests with the medical professional. Your beliefs and views towards the occurrence of Lyme will decide whether patients receive the correct diagnosis or not. All of these issues, including the relationship between the Lyme patient and their doctor, cannot be emphasized enough. Since the first step in getting treated is to make the diagnosis, much of the national attention has been focused on diagnosing this disease. However, just diagnosing the illness will not ensure the patient is properly treated and cured. Since it has been stated many times that tick-related diseases and their co-infections can be difficult to properly treat, the correct and effective treatment protocols are just as important as making the initial diagnosis. Therefore, this section will focus on making both the diagnosis and prescribing effective treatment.
Lyme disease is a clinical diagnosis by the medical professional - taking into consideration the patient's exposure risk (did they go camping or hiking in the past 2 weeks?) symptoms, laboratory tests (if required) and medical history. If you briefly look at the rates of Lyme disease you can be mislead in believing the infection rates are dropping. But this is far from the truth. The CDC has changed the reporting requirements for Lyme disease. Unless the patient is now infected in an "Endemic" county they must have laboratory evidence of the infection for a reportable case. Currently there are no Endemic counties in the South. With the unreliability of the standard laboratory testing, many cases of Lyme disease will now be "invisible" to those who track the disease. Another attempt by the CDC to downplay the significance of this epidemic.
Because of the current political views concerning Lyme, insurance issues and the "all seeing" NCMB, some physicians will not even allow patients to make appointments if they mention Lyme disease when scheduling. Another fact that must be mentioned is that not all doctors in the South believe that Lyme disease exists here. The two largest medical institutions in our area share this view. This view comes from either their limited awareness concerning Lyme disease, or from guidance these doctors receive from their affiliated institutions. For example, two recent visits to the Infections Disease Department at UNC hospital yielded the following comments to patients, "there has never been a documented case of Lyme disease in North Carolina" and "the tick that causes Lyme disease does not live here (North Carolina)." For whatever reason, these politically driven statements and intentional misdirection only serve to highlight the struggle of residents seeking a proper medical diagnosis. Even if you believe there is limited, or no Lyme disease in the South, do not forget that people travel, pets travel and residents living in the Carolinas still need to be properly diagnosed by doctors who practice here. There are also some doctors that are not familiar with the symptoms of tick-related diseases as they may have little or no exposure to patients with these diseases. Accounts of doctors prescribing only 5-7 days of antibiotics for Lyme disease have been told by patients. This treatment is far too short to adequately treat for Bb and the associated infections ticks may carry. If patients are not treated with adequate lengths and strengths of antibiotics, patients have reported relapses or continuation of their symptoms long past their last treatment date. This site recommends using the ILADS guidelines to adequately treat for Lyme (including STARI). Since the IDSA guidelines are currently under review by an independent review board (not made up of the same biased doctors for the past 15 years) future treatment changes will move towards what ILADs now currently recommends.
Keep in mind that the North Carolina Health Department has acknowledged that one resident has already died this year from a tick-related disease. Additionally, a 9 year old boy was in a coma this past summer and a 12 year old boy may have died from Erichliosis last year at UNC Hospital (North Carolina). These events illustrate how serious these illnesses are and how complicated the diagnoses and proper treatment can be. Because these diseases can be difficult to verify through laboratory testing, it is up the treating physician to recognize the clinical symptoms and to take into account the complete patient's clinical history before making the medical diagnosis and deciding the treatment protocol. When diagnosing Lyme, some doctors will quickly rule out the disease if the ELISA or Western Blot comes back negative. This link gives a sobering view of the current ELISA and Western Blot tests - http://www.canlyme.com/tom.html. This fact was erroneously stated by Wake County Official, Dr. Damsker, in this June 08 document. Should state doctors choose to follow this inaccurate guidance for the diagnosis of Lyme, 40-50 percent of Late-Stage or chronically ill patients may be missed. Patients who test negative can still have the disease and the reason why the CDC says that Lyme disease is a clinical diagnosis. The patient's entire medical history, risk exposure, laboratory tests and all supporting evidence should be evaluated before making or ruling out a Lyme diagnosis.
Late stage or Chronic Lyme is often misdiagnosed as it can minmic so many other chronic diseases common in life. View this trailer on a documentary about LD that came out this summer called: Under Our skin - http://www.underourskin.com/watch.html this video offers a controversial perspective both from the patients view and on Chronic Lyme disease in general. Showing how the disease causes severe suffering and disruption of lives and going head-to-head with the IDSA (note: this is the documentary that has been causing all the media attention this year).
This past February a Raleigh news paper article quoted a local doctor stating that "doctors are running scared." This was in reference to the NCMB and what happened to Dr. Jemsek in 2007, concerning his treatment of Lyme disease patients. Take a look at the National Lyme disease reporting stats and see for yourself the dramatic drop in reported cases for North Carolina after the Jemsek hearing. Up through 2006, NC has averaged over 84 cases per year. There have also been reports of doctors intentionally not reporting Lyme disease cases and in using non-Lyme diagnostic codes to avoid highlighting themselves to the North Carolina Medical Board when treating Lyme patients. A recent request by a NC veterinarian to the medical board, in reference to his study of tick diseases in dogs, resulted in a request to know which doctors in North Carolina dispense antibiotics to patients. If this action does not concern you, it should because between the NCMB and BCBS, some doctors in North Carolina do not treat for Lyme, have closed their doors or cut back treatment protocols for their Lyme patients. This situation is worth mentioning because if doctors are being influenced or are afraid to not diagnose or properly treat infected residents, then it's the patients and residents of our state who ultimately suffer from this bias action. As a doctor or medical professional in North Carolina, you need to be aware of these events and ask yourself, what is the real reason doctors are running scared and why are residents being forced to seek treatment from doctors outside the state?
This following section allows the medical profession access to information not normally available to them. Our goal is to present creditable information and facts which will allow you to become more educated towards these diseases. It is also the goal of this site to present medical and scientific studies and treatment recommendations from doctors who routinely treat Lyme and tick related diseases. Because so much of the information you have seen in the past has be filtered and selected by those not desiring that Lyme disease spread in the South, now you can decide for yourself and formulate your own personal opinions from this information. After viewing the data below it is recommended that you read some of the actual stories written by those residents who have tried to seek medical help and hear accounts of what they had to go through to be properly diagnosed. Some of the accounts will leave the reader asking "can this really be going on."
The diagnosis of Lyme disease is a "Clinical diagnosis and should not be decided solely on the basis of unreliable laboratory tests to either rule out Lyme or make a positive diagnosis." Many medical professionals either do not understand this requirement or were never aware that the current labs tests for most tick borne illnesses are only 40-60% reliable, depending on many factors. This is the reason the CDC requires the clinical diagnosis - taking into account the symptoms, risk exposure to ticks and all supporting evidence (labs or other tests) into account before making the decision if treatment for a tick related illness is warranted.
The CDC recommend 2-step process for the laboratory confirmation of LD was established in 1995 and has changed little since then. It was designed to be for surveillance criteria only, to track the spread of the disease, and not to be used for the purpose of diagnosing. However, many medical professionals will rule out this disease if the ELISA returns a negative result. Many late and Chronic stage patients have been misdiagnosed due to this common error and the fact that the state of North Carolina (and other Southern states) has repeatedly stated that Lyme disease is "rare" in the South. Here is another thought to consider - many residents of the Carolina's settle here from Lyme Endemic regions but are not diagnosed prior to becoming residents. Now they must face the issue of being properly diagnosed in a region that says there is no Lyme disease. This is not an easy challenge as late or Chronic Lyme can be easily mistaken for dozens of chronic and relapsing diseases. The following is from an article written by a doctor who went through just this process and now shares his professional thoughts.
LYME DISEASE (Borreliosis)
A Plague of Ignorance Regarding the Ignorance of a Plague
© Copyright 2004, Dr Scott Taylor, DVM, All rights Reserved
My objective for writing this report is to help inform the layman and the medical community about the extremely complex infection called Lyme disease. I have recently been infected with Lyme disease and I will share my experience and what I have learned about the complex nature of Lyme disease in this report. I continue to update this report and I foresee many revisions of it in the future as more information regarding Lyme disease surfaces. I have recently been introduced to a major medical breakthrough discovered by Dr. Trevor Marshall, research director at the Autoimmunity Research Foundation in Thousand Oaks, CA. I have updated this version of the report to include this vital information.
Lyme disease (LD) is a seriously complex multi-system inflammatory disease that is triggered by the bacterial lipoproteins (BLPs) produced by the spiral-shaped bacteria called Borrelia. Borrelia are difficult to isolate, grow, and study in the laboratory. So, our technical knowledge of this pathogen is poor compared to our understanding of most bacteria that cause disease. Transmission of Borrelia occurs primarily through the bite of ticks. The disease affects every tissue and every major organ system in the body. Clinically, it can appear as a chronic arthalgia (joint pain), fibromyalgia (fibrous connective tissue and muscle pain), chronic fatigue, immune dysfunction and as neurological disease. LD may even be fatal in severe cases.
The diagnosis of Lyme disease is primary based upon clinical evidence. There is currently no laboratory test that is definitive for Lyme disease. Many tests give false negative results. Physicians not familiar with the complex clinical presentation of Lyme disease frequently misdiagnose it as other disorders such as: Fibromyalgia or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Multiple Sclerosis, Lupus, Parkinson's, Alzheimer's, Rheumatoid Arthritis, Motor Neuron Disease (ALS, Amyotrophic Lateral Sclerosis - Lou Gherig's disease), Multiple Chemical Sensitivity Syndrome (MCS) and numerous other psychiatric disorders such as depression and anxiety.
Lyme disease is a familiar name to most people, but their knowledge of it is very limited. Unfortunately, this is also true for most professionals in the medical community. There have been numerous reports in the media about it in the United States over the past 25 years. These superficial articles report something about small deer ticks transmitting bacteria called Borrelia burgdorferi. The tick vectors are said to be mainly restricted to certain endemic areas of the United States, which are the Northeast and the upper Midwest. Frequently mentioned is the bulls-eye skin rash that develops following the bite of an infected tick. The disease is reported to begin with flu-like symptoms that progress to an arthritic and fibromyalgic condition. It is often said that Lyme disease can be readily treated with standard regimens of antibiotics. While these reports are partially true, they are also critically erroneous and very misleading!
This report is an urgent warning for everyone. Lyme disease is devastating the lives of hundreds of thousands of individuals and we are all at risk. Many patients are suffering with chronic Lyme disease and continue to be misdiagnosed and mistreated. In many cases of Lyme disease, a correct diagnosis doesn't occur until after several months or more often many years of suffering with the disease. By then it has caused severe illness, disability and permanent damage. The disease is widespread and the prevalence is significantly higher than reported by health officials.
It is very unfortunate that most physicians don't know how to recognize and treat cases of Lyme disease, especially the illusive cases of chronic Lyme disease. I'm not just talking about general MDs being ignorant; I am also referring to specialists such as: rheumatologists, neurologists, orthopedic surgeons, cardiologists, psychiatrists, and the most ignorant actually seem to be infectious disease specialists. I was extremely surprised by this plague of ignorance after I began my investigation of Lyme disease.
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:
- 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.
- 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.
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.
- 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.
- 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.
- 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.
- 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.
Here is the link to this complete article: http://www.autoimmunityresearch.org/lyme-disease/
Lyme disease and Lyme-Like-Illnesses in the South
- Recently two patients visited the Infectious Disease Clinic, University of North Carolina Medical System. One patient was told she could not possibly have Lyme disease because she never left the state, with her doctor saying something to the effect that "there was no Lyme disease in North Carolina - July, 08. Another patient was told a week later that there has never been a case of Lyme disease acquired in North Carolina.
- It has been said that Lyme disease is vastly underreported to the CDC. Often by a factor of between 10-12 times reported to actual cases treated. This is a study done in the state of Georgia in 2000. That year there were zero cases of Lyme disease reported to the CDC by the State of Georgia. However a Lyme disease study was conducted by doctors who contacted over 1300 licensed doctors in the state. Turns out there were 578 confirmed patients treated for Lyme disease (or possible Lyme-Like Illness). 0 cases reported but 578 residents diagnosed and treated by doctors.
- This is a study that came out this year by Dr. Ed Masters. He is credited for discovering the Lyme-Like-Illness once called Master's disease and now more commonly, STARI. Symptoms include a rash and fatigue, fever, and other conditions similar to Lyme. Many medical publications say that STARI is "mild" but Dr. Masters' disagrees, saying STARI can be severe and recommends up to 30 days of antibiotics to fully treat this disease (this is also due to the many co-infections the Lone Star tick is known to carry). Since there is little medical information on STARI, the guidance presented in his research is worth following. As stated in his study, since there is no test to ensure complete treatment, treat the patient for the worst case scenario to be on the safe side. Since both Lyme and STARI present with the same symptoms in the acute stage, it may be difficult to know which to treat for. This site also recommends that all medical professionals to tell their patients to save and preserve the tick. If long term doubt exists as to what illness a patient has, the tick can be tested and the results may reveal the exact illness.
- This is a collection of scientific studies on Bb and the potential for Lyme disease.
- The number of Lyme disease case reports by each state through 2006 - http://lymediseaseassociation.org/Maps/index.html
- This briefing was given to the NC Director of Public Health, Dr. Leah Devlin, by a concerned resident on 21 April 08. This document shows that upwards of 600+ residents are being treated for Lyme and Lyme-Like-Illness in North Carolina every year, even though only 53 cases were reported last year.
- 392 dogs have tested positive for Lyme since 2000. View link and click on any state. The infection rate of animals has been used for many years to predict human rates.
- The military has recognized the high number of Lyme disease cases confirmed around the Camp Lejeune area of North Carolina. In fact, this area has had more cases of Lyme disease than military bases in CT, a Lyme endemic area for many years. Since 2000 thru 2007, 71 cases of Lyme disease have been diagnosed. Currently the Navy and Marine Corps is conducting a detailed Lyme assessment study that began this year and will continue through 2009. Camp Lejeune in NC and Parris Island in SC are the sites for this study. The military is very concerned about Lyme disease in the Carolinas and this is the most comprehensive study to date.
Symptoms and Treatment Guidelines for Lyme disease
- Symptom list for Lyme: http://www.canlyme.com/patsymptoms.html
- Advanced topics in Lyme disease, 2008 edition - Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
- Chronic Lyme: http://www.autoimmunityresearch.org/lyme-disease/
- Treatment: http://www.hormoneandlongevitycenter.com/lymedisease/
- For better understanding of the ELISA and Western Blot for Lyme disease: http://www.lymenet.de/labtests/brenner.htm
- For patients who have neurological symptoms of Lyme disease: http://www.ilads.org/goldings.html
A true story: A Raleigh neurologist was seeing a patient who was first diagnosed with MS but this doctor did not believe this was the patient's correct diagnosis, based on what he knew about his symptoms and the disease. The patient brought in the above two papers on neurological Lyme disease and showed the doctor that his symptoms of arthritis, brain fog and peripheral neuropathy were all symptoms of Neurological Lyme. This patient was subsequently treated successfully for Neuroborreliosis by another ID doctor. A few months go by and a woman walks into the Neurologist's office with symptoms of Bells Palsy, arthritis and other symptoms mentioned in the above documents. The doctor asks if she had been tested for Lyme disease and she replies yes, but all tests were negative. However, from what the doctor learned by talking to the former MS patient - that the immune system does not always recognize the bacteria when the patient has been infected for a long time. This doctor gave the women a few weeks of antibiotics and then retested her. She now tests positive for Lyme disease. This doctor then goes on to thank the MS patient for educating him about Lyme disease and in helping his patient receive the correct diagnosis. Turns out the doctor had read in the documents provided by the MS patient that a round of antibiotics can sometimes reactivate the immune system, kill some of the Bb bacteria, and this action may help produce antibodies which can be detectable using standard Lyme testing.
While the ELISA and Western Blot do not always detect the presence of antibodies from Bb, there is equally no test to determine when the bacteria have been totally eliminated from the patient. Because of this, it may take longer than the "standard" length of treatment to determine if the treatment was truly successful. Many accounts of patient's not receiving adequate treatment have resulted in relapses and in progressive stages of long-term infection. This is why the "standard" 14 days of Doxy is not always long enough. Since you cannot tell if the patient is cured, there is always the chance that the patient will still be harboring some live Bb or other tick-borne bacteria. To address this issue, Lyme Literate doctors normally treat Acute Lyme with 30 days of ABX just to be sure. This protocol ensures the welfare of the patient when it cannot be known for sure if a lesser length would have worked. While there are some associated risks with longer course of antibiotics, there is far greater risk if the disease is not properly treated to begin with. Again, our recommendation is to follow the ILADS guidelines when treating Lyme or possible Lyme-Like-Illnesses.