Or...Search this site Home Symptoms Live Discussion Diagnosis Treatment Area Support Library Research Lymelinks Contact Pets & Lyme DONATIONS Drug Info Medical Dictionary Board of Directors      Click on the graphic to vote for this site as a Starting Point Hot Site. -- No Warranties or Representations The data and information presented in this web site are presented in good faith and believed to be accurate. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections. The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website. Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect. en français For Physicians Ticks Coinfections Prevention Our Stories Click Here to order our free Lyme Disease Flyer,    Here for our free Lyme Disease Poster ..documents may be copied (to distribute) but edit only for alignment. Thursday, September 11, 2003 The Valley News, LaGrande, Oregon (no URL) Battling Lyme Disease: Lauren's Story By Trish Yerges with Rita L. Stanley, Ph.D. SUMMERVILLE - "It appears to be a spider bite," said a Wisconsin pediatrician as he examined the leg of a feverish 12 year old female patient named Lauren. "What about Lyme disease?" questioned the emergency room physician, who had summoned the pediatrician for a second opinion. "No, I don't think so. That's not too common around here. It's probably just an insect bite of some kind," responded the pediatrician as he recommended a 21 day course of amoxicillin and instructed Lauren to follow-up with her doctor when she returned home to Union County, Oregon. That critical misdiagnosis was the beginning of a year-long ordeal for Lauren, who suffered as no 12 year old should. For her mother, it was a race against the clock to find knowledgeable direction and a cooperative physician in the rurals of northeastern Oregon, where physician knowledge about Lyme disease is rare. I am Lauren's mother, and this is the true account of how, with the aid of the internet and two key supportive professionals, we overcame obstacles to Lauren's recovery from the life-threatening symptoms of Lyme disease. Lauren's story began during an annual vacation to southeastern Wisconsin to visit family and friends. After a three day stay at her girlfriend's home, she returned to me with a fever of 103.3 accompanied by chills, fatigue, extreme light sensitivity, acute headache and myalgias (muscle pains) including stiffness of the neck, back aches and joint pains. In addition to those symptoms, Lauren had two tell-tale bull's eye marks (erythema migrans), which were 10 centimeters apart from each other on the lower left leg. Since EM rashes are the only sure diagnostic sign of Lyme and are not present in 40% of Lyme victims, we felt oddly fortunate to have some early clue as to the identity of her illness. However, in spite of the presence of the EM rash, the examining pediatrician still discounted Lyme as the cause of Lauren's symptoms. The questioning ER physician, on the other hand, was not so convinced. Thus the ER physician's discharge diagnosis read, "Fever, etiology to be determined. Rule out Lyme disease." With a feeling of closure postponed, I was determined to pursue a continued course of treatment for Lauren with her doctor in Oregon. Three weeks later, Lauren was seen by her home physician. Thankfully, the physician could still detect the faint bull's eye marks on Lauren's leg and cooperatively extended the prescription of amoxicillin (500mg) 3x day for another five weeks. Considering that the "usual and customary treatment" for early stage Lyme disease is four to six weeks on doxycycline or amoxicillin, I felt assured that Lauren was going to be sufficiently treated to recover fully, but that's not how it turned out. Throughout the remainder of her five week treatment, Lauren complained of acute pains and soreness in her knees, ankles and hands. These were so transient and intermittent that it appeared as though the extended antibiotic therapy was working. However, the pains persisted, and by the end of July even Lauren's facial health had deteriorated with dark circles appearing around her eyes. She was no longer the vibrant, active, young girl she used to be. By the end of November 1999 Lauren had had several blood tests, called Lyme titers, to check for antibodies to Borrelia burgdorgeri (the Lyme spirochete). Each time the test came back negative. We learned later that false negatives on titer tests (ELISA tests) are not uncommon and can be noted in a certain subset of patients, like Lauren, who received early antibiotic treament of the disease. Unaware of this at the time, however, it seemed to indicate to our physician that Lauren's immune system had everything under control. However, things were anything but under control. On January 4, 2000, six months after the initial ER visit in Wisconsin, we were shocked into reality. Lauren woke that morning with electrifying pain in her right arm and fingers. She also complained of pain in her legs, neck and head. In a medical diary I kept on her illness, I wrote: "January 5, 2000... complains of pain in fingers, stabbing pain in right arm and shin bones of legs, in neck and on left side of her head. January 6, 2000... more of the same pain, stabbing pains in both arms, crying. January 7, 2000...Hands too weak to lift a half gallon of milk. Arms too sore to wash her own hair." It seemed logical to us that the usual treatment for Lyme disease was insufficient to completely arrest the disease. Furthermore, Lauren's symptoms were beginning to appear far more complex than we were initially led to believe. However, relying only on standard guidelines, our physician thought that the treatment "should have" been curative for Lyme and so questioned whether Lauren had the disease at all. A sense of dread overcame me as I considered what it would mean for Lauren if I lost my only medical advocate now in our fight against Lyme disease. My "mom-sense" told me that since Lauren had never reached a symptom free state, her recent attack of escalated symptoms had to be related to those two bull's eye marks on her legs. For this reason, I stuck tenaciously to the theory that Lauren's illness was Lyme disease. Now I felt that it was up to me alone to find someone knowledgeable about Lyme to guide our physician in saving Lauren from this advancing illness. Never before had I felt such a weight upon my shoulders as the one I felt facing these newest obstacles to Lauren's recovery. For the following two days, I searched the internet for basic information on Lyme disease and more importantly, for a support group that could help us. After some time-wasting failures, I sent an email to Rita Stanley, Ph.D., of the Lyme disease support group coordinated through Legacy Good Samaritan Hospital in Portland, Oregon http://community.oregonlive.com/cc/lyme . She promptly replied, reiterating for clarification all that I had related to her and suggesting some possible explanations for the inadequacy of Lauren's initial treatment. There are about 300 strains of Lyme spirochetes (cork-screw shaped bacterium), some being more virulent than others. In addition, ticks may carry co-infections such as Babesiosis, HGE (Human Granulocytic Ehrlichiosis), and HME (Human Monocytic Erhlichiosis). The presence of any of these co-infections in a patient can make Lyme more difficult to treat and can result in severe illness even by themselves, let alone in combination. Treatment needs to be geared to a more complete picture of what is going on. The only sure way of knowing what Lauren was fighting was to send a sample of her blood for testing. But first, I had to present Lauren's physician with this information and request the involvement of Dr. Stanley as an advisor in Lauren's case. This I did and the suggestion was accepted by our physician, much to our great relief. Hope shed its light upon us. Dr. Stanley was the most important key to unlocking the mystery of Lauren's advancing condition. She is a professional with personal experience in guiding physicians through treatment of early stage and disseminated Lyme disease. With Dr. Stanley's informational support and the willingness of our local physician to work cooperatively with her on Lauren's treatment, Lauren had a fighting chance to win back her life. After conferring with Dr. Stanley, our physician began to realize that the accepted approach to diagnosis and treatment for Lyme disease (the Standard of Care) was, perhaps, too simplistic and limited for application in reality. With clinical discernment, Lauren's doctor began to question the "shoulds" of that approach: that testing "should" be simple and treatment "should" be curative in short order using one antibiotic at one dosage level for just about everyone. Furthermore, our doctor questioned the established approach that continuing post-treatment symptoms were not due to persistent Lyme infection. What may have appeared good on paper did not seem to transfer to Lauren, who had presented, after all, with two diagnostic rashes for Lyme disease. Why not? Although Lauren's original Lyme ELISA (antibody) tests had been negative, her doctor found that certain research indicated additional tests could be run alongside so that Lyme would not be ruled out prematurely. The current standard guidelines say to run the ELISA and then confirm it with another test called the Western Blot (2-tiered testing). The doctor found studies indicating that both types of tests must be run together (simultaneous testing) for more accurate evaluation. Most doctors refuse to run the additional tests and withhold this pivotal step in their work-up. Lauren's doctor, however, doubted there was anything to lose by running a few more tests. In addition, Lauren's symptoms, including high fever, suggested the possibility of co-infection, another illness from the same tick. Checking for these other infections seemed logical, too. Additional testing was ordered. Meanwhile, the arthritic pain in Lauren's joints became a daily part of life. She often walked with a limp and every movement was slow and deliberate like that of a geriatric patient. Neurological symptoms worsened. Lauren recalled how she felt about her failing body, "I felt so frustrated that I was not well enough to do the fun things that other kids were doing. I couldn't even lift a bowling ball let alone go biking or hiking. I was tired all of the time. I was twelve years old, but I felt like a 90 year old woman." Finally, seven months after the original bite and rashes, the tests, in the context of Lauren's clinical workup, pointed to Lyme disease as well as to HME (Human Monocytic Ehrlichiosis), another tick-borne disease that has a fatality rate of 2-3%. Lauren's strong immune system was fighting these diseases alone now and with great difficulty. The originally prescribed antibiotic, amoxicillin, had no effect on the bacteria that causes HME and had notably failed to be curative for Lyme disease in her case. By now the illness was disseminating rapidly throughout Lauren's body with significantly disabling arthritic symptoms. It took all the energy she had to attend public school. "I did all my homework during class or lunch hour because I knew when I got home, I would be too tired to do anything," Lauren remembered. How true - at the end of each day, she resigned herself to her bed where she slept from 4:30 p.m.until morning. This was so unlike the Lauren we used to know, who never went to bed before 10:00 p.m. Now her activities were confined strictly to school and to necessary sleep. Treatment and more controversy The Infectious Disease Society of America (IDSA) has set treatment guidelines for Lyme disease (the Standard of Care). These guidelines basically state that Lyme is cured with about a month's worth of antibiotic treatment. But what about patients who don't fully recover or who worsen after receiving their allotment of medicine? IDSA states that continuing symptomology is due to "something else" and is not due to persisting infection with only occasional treatment failures. This could include fibromyalgia, MS, Chronic Fatigue, and even mental problems, but not continued Lyme infection. Highly placed academics and lauded physicians wrote and then strictly abide by these guidelines. In fact, reputations ride on the Standard's wide acceptance and adherence, a reason few physicians dare to question this scholarly thought. Valid arguments, research and clinical evidence do exist that indicate the IDSA guidelines are too restrictive and not necessarily a firm foundation for reliably productive treatment, let alone diagnosis. Challenge by most doctors is rare, but fortunately for Lauren, her doctor approached treatment with an acutely perceptive mind. No tests exist to conclusively show that Lyme has been eradicated from the body. Stating that someone who still has Lyme symptoms is cured after a month of treatment is a questionable conclusion because it defies clinical judgment and cannot be confirmed in the laboratory. A body of research ignored by the IDSA guidelines reveals that persisting infection can occur in patients with Lyme. Persisting infection is also seen in other infections and would not be considered unique to Lyme disease. Additionally, much clinical evidence reveals symptom improvement and even resolution with extended antibiotic treatment. Lauren's doctor, when presented with additional information, chose to look at extended treatment along with treating for HME. This open-ended antibiotic treatment approach has been described by Dr. Joseph Burrascano and is followed by a small minority of other doctors. Lauren began treatment with doxycycline, a drug that targets HME organisms, and demonstrates some efficacious results against Lyme spirochetes. Later, she took Biaxin in place of the first medicine. She was slated to take the antibiotics for about 6 months or until she became symptom-free. Instead of an arbitrary cut-off point for stopping treatment, Lauren's progress was monitored to note her responses, and her protocol would be modified when and where needed. Treatment would be discontinued when she was well. Jarisch-Herxheimer-like reaction When Lauren began taking antibiotics, she got worse at first. Frightened, she asked me, "Mom, what's happening to me?" I tried to prepare her for this by explaining that the reaction was due to the release of toxins into the body when the organisms were destroyed and also due to her body's heightened immune response. The phenomenon (the part due to toxin release) was named after Drs. Jarisch and Herxheimer, who, in an earlier study involving patients with Syphilis, noted an initial worsening of their symptoms after being treated with penicillin. The worsening of symptoms in Lyme is caused by more than simple toxin release and so is called the Jarisch-Herxheimer-LIKE reaction. It seems to involve the release of inflammatory products by the immune system, and can therefore last for longer periods of time in Lyme disease than in Syphilis. It can also occur whenever a new and effective antibiotic is used. So Lauren had to brave not only a frightening disease but a worsening of that disease during therapy, not easy for anyone, let alone a young girl. Neurological Involvement Untreated and under-treated Lyme disease can affect the central and peripheral nervous systems. Symptoms may even include paralysis, and this happened to Lauren. Upon wakening Lauren for school one morning, I noticed there was no response to my call. Then I heard her faint voice cry out, "Mom, I can't move." This was the first evidence we had of what is called Lyme induced post-sleep paralysis. It lasted about 5 minutes until finally she could move her legs to sit up in bed. Likewise, disseminated Lyme can cause neurological symptoms imitating palsy. My medical diary's entry on May 16, 2000 described Lauren's experience this way: "Right hand shaking uncontrollably. Needle-poking pain in both heels and in ribs. Comes on suddenly without notice. Lasts 5-20 seconds per episode. Hard to lift arms. Pain on underside of the arm. Pain in finger joints. Heavy eyelids." There was no doubt in my mind that Lauren's central nervous system was under aggressive attack. Recovery Over the 4 months of treatment with Biaxin, Lauren slowly began to improve. Her Jarisch-Herxheimer-like reactions diminished and ended altogether in July. The numbness in her limbs went away; the paralysis and shaking incidences ceased. Her energy level rose, and she began to forsake her bedroom for the living room for longer wakeful periods of mentally and physically productive activities. On September 11, 2000, Lauren finished her Biaxin treatment. Other than some occasional and mild swelling of the knees, there had been no recognizable Lyme symptoms for the past eight weeks. Three years later, Lauren remains healthy and enjoys snowboarding every winter season. She won the battle for her life despite the obstacles of an initial misdiagnosis, four subsequent false negative test results, an undetected co-infection, and frightening neurological involvement. The initial diagnosis and treatment had been based on almost universally accepted restrictive guidelines that proved entirely inadequate for Lauren's case of Lyme disease and concurrent HME infection. The Cost of the Controversy Lauren's case is an example of what happens when real-life comes up against rigid and unyielding medicine. Although information existed to help Lauren, I had to play medical detective to unearth it, find outside help, and hope our physician would listen. We were extremely fortunate that our physician did and that there was a willingness on the part of our doctor to question an authoritative approach. The physical and mental cost to my family was astounding throughout this whole ordeal. We were fortunate to have had a doctor who did question the validity of the Standard of Care. Most do not, and my heart goes out to those who find themselves in that situation. The use of simultaneous testing and open-ended employment of antibiotics still remains largely unacknowledged in the medical arena. Consideration of co-infections along with Lyme disease fortunately appears to be gaining more recognition even by those using the Standard of Care. However, until such time as the bureaucracy of medicine validates the approach of longer term Lyme treatment, untold human suffering will continue to increase. To add further insult to patient injury, the dichotomy of medical opinion over Lyme treatment and diagnosis has resulted in the professional chastisement and limiting of medical licenses for certain non-restrictive physicians simply because they used antibiotics for longer than about a month; in other words, they defied authority in the best interests of their patients. As a result, certain states, like Rhode Island, have resorted to legislation to stop the sanctioning of doctors who treat for longer periods of time. Oregon and other Lyme endemic states may have to follow suit so that victims of Lyme disease and other tick-borne infections can have access to the best care possible in hopes of regaining their health and life as Lauren did.