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The Orphan Patient -A Plea to Fellow Health Care Providers
Ginger R. Savely, RN, FNP-C
Public Health Alert
Travis had a way with words. A gentle, timid soul, he was not particularly adept with people but was expressive and insightful on the written page. He was very bright, so much so that despite his young age of 22 he often became inpatient with the ineptitude of his fellow humans and the inconsistencies of an irrational world.
Why he developed a mysterious disease that consumed him and made him lose his way is beyond comprehension. Bugs, worms or things that he couldn't describe were infesting his body and his brain, tormenting him with itching, biting and stinging sensations. Strange things were occurring that made no sense to his rational mind: fuzz balls, fibers of different colors and black pepper like dots were emanating from his pores and making his skin feel like it wasn't his own. He couldn't sleep, he couldn't concentrate, he couldn't work or enjoy life in any way.
From doctor to doctor he went in desperation, seeking to discover the cause of his misery, hoping to find a diagnosis to explain his bizarre symptoms. He hoped that even if none could diagnose his malady, someone might at least listen, look, and try to understand and help him.
Hope slipped away with each succeeding office visit. He appeared pale, thin, covered with open sores, anxious and fearful. Immediate diagnoses of "delusions of parasitosis", "self mutilation" or "methamphetamine abuse" were conferred upon him without giving him the respect of a proper history or physical. Health care providers would shake their heads in judgmental haste and refer him on to a psychiatrist.
Was he crazy? It sure seemed that way. But his craziness didn't cause the illness. The illness caused the craziness. He became obsessed with every little detail of his hygiene and of his surroundings. He tirelessly scrutinized every inch of his body, looking for signs of his invader and hoping to extract the instruments of his torture. He felt terribly sick emotionally and physically. He had to drop out of school and quit his job as a pharmacy technician. The lesions that covered his body were an eyesore. He was embarrassed to be seen in public for fear that others would think he was contagious or unclean. For over a year he stayed locked up in his room, hiding from the world, unable to live a normal life or look forward to a promising future. His only connections to the outside world were the web blog that he faithfully maintained and the chat groups he was a part of.
Then he read an article that I wrote about the mysterious skin condition known as Morgellons disease. As he read, he gasped as he recognized every one of his symptoms. For the first time in several years he felt a glimmer of hope. Finally someone would take him seriously and would treat him with the respect that he deserved.
He came to see me and after a thorough history and exam I informed him that he fit the criteria for this unusual and little known disease, a disease for which there was no test or cure, a disease that, although described over 300 years before, was not even recognized by the Centers for Disease Control and Prevention (CDC) or state health departments.
Validation of his illness was a huge step but there were more obstacles to overcome. Since no one has discovered the causative agent of Morgellons disease, its treatment is a shot in the dark. The patient surrenders himself as lab rat, willingly taking different concoctions of antibiotics that have been helpful to others with the same affliction, but never knowing whether he will be one of the lucky ones who respond. Some patients with Morgellons, especially those with long-standing illness, have worsening symptoms with treatment. Their condition becomes aggravated and their sensitivities sharpened. Anxiety peaks, discomfort heightens and the unusual objects flow forth with a vengeance.
This was the case with Travis. His response to treatment was such an intensification of symptoms that on several occasions his mother took him to the local psychiatric hospital, not knowing how to handle his agitation and his inability to cope with the pain. After stopping treatment his manic episodes would disappear but the return to baseline was a return to the same lonely life of despair.
From past experience I knew that our only hope was to treat aggressively with antibiotics, but his reaction to treatment was so insupportable that it was difficult to know how to proceed. I believed that his case was too complex for me to handle, but there were no doctors within hundreds of miles who would know what to do or even take his disease seriously. We seemed to be caught between a rock and a hard place. We'd take one step forward and two steps back.
Meanwhile, other Morgellons patients of mine were having symptom flares but getting past them and going on to notice marked improvement. But without improvement there was no hope. And eventually life with pain, fear and misery and without dignity, joy or hope seemed pointless and unbearable.
One Sunday afternoon the horror of it all became too much for Travis to bear. Longing for sound sleep and relief from the pain, he took a large quantity of sedating medications and slipped away from his earthly prison. His mother found him a few hours later and through the shock and sorrow, she couldn't help but notice that it was the first time in several years she had seen a peaceful look on his face. A strange mix of feelings overcame her - the gut wrenching agony of a mother losing her only precious son, mixed with a protective sense of relief that his suffering was finally over.
What happened to Travis should make all of us in the medical field pause and consider the ways that we let patients down. Patients deserve to be listened to and taken seriously. To confer a hasty psychiatric diagnosis when a patient's symptoms seem too unusual to categorize is as much a transgression against humanity as it is medical malpractice.
There are many more "orphan diseases," as they've come to be known, with "orphan patients" abandoned because they didn't have the good fortune to come down with a known and socially acceptable condition. Throughout the history of medicine we have seen this patient mistreatment due to ignorance on the part of the medical team - patients with tertiary syphilis locked away and put in straightjackets, epileptics believed to be possessed by the devil, gastric ulcer patients advised to learn relaxation techniques because they were inflicting their ailment upon themselves.
As practitioners, let us never forsake our patients. Let us take the time to really listen and look. May we never abandon a patient by discarding him into a lonely, bleak existence of despair. May we not disregard his concerns, ignore his feelings, nor discount his suffering. That is not the way that we would want to be treated nor would we want that kind of disrespect for the ones we love.
For More Information About Morgellons Disease: http://www.morgellons.org/
Courtesy of: Public Health Alert
"RARELY FATAL" DISEASE CLAIMS MORE LIVES
Lucy Barnes
The Star DemocratLyme disease is caused by a spiral shaped bacterium (spirochete Borrelia burgdorferi). It is most commonly transmitted to humans through the bite of an infected tick. Lyme disease has recently topped AIDS as the fasting growing infectious disease in the nation. The disease has been misdiagnosed as Multiple Sclerosis, Parkinson’s Disease, Lupus, Alzheimer’s, Arthritis, Lou Gehrig’s Disease (ALS), Fibromyalgia, Guillian-Barre, Chronic Fatigue Syndrome, and a number of other illnesses due to the variety of symptoms found in those with the disease. Over 15,000 new cases a year are reported in the United States and many researchers believe the disease has been grossly under reported. Maryland and Delaware are on a list of the ten states with the most reported cases of Lyme disease.
Many factors have contributed to the devastating effects caused by Lyme disease, including the belief that it is either a rare disorder or it is not considered to be endemic in the region where the patient resides. To complicate matters, many of the current testing methods produce a high percentage of false negatives, leading doctors to come to the erroneous conclusion that the disease is not the cause of patients’ recurring or ongoing symptomology. These problems are compounded when patients are treated with an antibiotic that is not effective for the strain or strains of Borrelia they have contracted (over 185 different strains identified to date). Many physicians refuse to believe the disease is still active after a short course of antibiotics, and patients are suffering the consequences as a result.
Although Lyme disease has the chance of being cleared from the system if detected in the very early stages, physicians often insist that patients who have been bitten by a tick, "wait and see" if symptoms develop before they approve treatment (in which case it is often too late). While many physicians familiar with the disease advise their colleagues to take swift action when a person is bitten, many doctors still refuse to treat at all without a positive blood test, a bulls-eye rash, and multiple symptoms.
The doctors delayed actions, along with the refusal by insurance companies and HMO’s to promptly approve treatments, allows the Borrelia spirochetes to remain active and continue to invade tissues and organ systems. This may lead to more severe, permanent, irreversible damage, or death. The insurance companies policies, coupled with lengthy appeal processes, denies patients' prompt care, and often, after a drawn out paperwork battle, no care at all. To make matters worse, loop holes in the laws continue to exempt insurance companies from liability in the event of disability or death of an insured patient.
It appears that Lyme disease patients are not alone in their struggle to get quality care through their insurance companies. The results of the 1999 Survey of Physicians and Nurses (a national random survey concerning non-elderly patients) reports 87% of doctors report their patients have been denied coverage for health services on a regular basis. The most frequent denial was for prescription drugs, with 61% reporting it was at least a weekly occurrence. Medications for the Lyme patient, and many other patients, are not a luxury, they are a life saving tool. In many instances, medications are needed immediately to prevent death or permanent damage.
The survey also shows repeated denials for diagnostic tests (42%), overnight hospital stays (31%), and referrals to specialists (29%), which are reported to occur at least weekly. Close to one-half of the medical profession surveyed reported a decline in the patients’ health due to the denials. In addition, increased paperwork and the decline in "quality care" were concerns shared by both doctors and nurses.
A growing number of people who have Lyme disease and have negative blood test results, have been found to harbor live spirochetes in their tissues, even after extensive antibiotic therapy. During the 13th Annual International Scientific Conference on Lyme Disease and Other Spirochetal & Tick-Borne Disorders, Dr. H.W. Horowitz reported that 80 patients who had been diagnosed with Lyme disease, and or Babesiosis/Ehrlichiosis, were reviewed. All patients continued to show signs of infection after so-called, "appropriate treatment". Testing on these patients (after treatment had been discontinued) showed serum PCR positivity of Lyme Borrelia, despite the extended courses of antibiotics. Although the patients were treated for an average of 13 months (1 month to 53 months) the results indicated that "no single antibiotic or combination of antibiotics used was able to completely eradicate the infection, although significant clinical improvement was seen with chronic antibiotic therapy."
Lyme disease has taken the life of many, and the life out of so many more. Those who have lost their battle to a disease the CDC reports is, "rarely fatal" includes an actress who was nominated for an Academy Award, a highly respected cancer surgeon, and a dedicated research scientist. The battle has been lost by the father of two children who was forced to seek treatment from over 100 doctors, spent time in 7 different hospitals, and accumulated over 2.5 million dollars in medical bills.
The disease has no preference over who it claims as a victim. It has claimed the life of a local mother and grandmother, a Vietnam War Veteran, several doctors, and a number of Lyme disease advocates. It has also taken the life of a nurse who was misdiagnosed with Alzheimer’s for nine years. The list continues with a man who became partially deaf and was denied treatment by his insurance company for Lyme disease, a 38 year old farmer who slipped into a comma 3 days after a tick bite and died a month later, and a 37 year old man who was an avid deer hunter. A tick bite also ended the life of a 19 year old student who was attending the University of Delaware. This teenager’s entire family was infected with Lyme disease.
Lyme disease recently took the life of a young girl who contracted the disease while in her early teens. She passed away at the age of twenty-one. Her doctor had insisted she was not physically ill but that her symptoms were psychosomatic. The doctor’s response to the girls continuing illness and complaints was to lash out and slap her in the face, telling her to "grow up". Another youngster, a seven year old girl, had a tick removed by a physician who refused to provide antibiotics, and she lost her life to the disease. Complications stemming from the disease eventually claimed the life of a little five year old boy who was born with Lyme disease after his mother was infected by a tick.
Lyme disease must be treated early and completely in order to have the greatest success in reducing the number of repeated treatments, disability, and death. Patients who were not treated properly in the beginning are now forced to spend the rest of their lives fighting to get medications to help reduce the progressively degenerating neurological and arthritic conditions they continue to deal with on a daily basis. If Lyme patients are not treated until all of the symptoms have been resolved, the spirochete has been proven to be able to reproduce and regenerate, often changing forms, and returning with a vengeance.
Courtesy of: Lucy Barnes
Lyme, Depression, and Suicide
Robert C. Bransfield, MD
In the late 1970’s, I treated a depressed patient who appeared to have more than just depression. Her weight increased from 120 to 360 pounds, she was suicidal, had papilledema, arthritis, cognitive impairments, and anxiety. This patient became disabled, went bankrupt, and had marital problems. Like many whose symptoms could not be explained, she was referred to a psychiatrist. However, I was never comfortable labeling her condition as just another depression.At the time, I did not consider her illness could be connected to other diagnostic entities, such as neuroborreliosis, erythema migrans disease, erythema chronicum migrans, Bannwoth’s syndrome, Garin-Bujadoux syndrome, Montauk knee, or an arthritis outbreak in Connecticut. With time, the connection between Borrelia burgdorferi infections and mental illnesses such as depression became increasingly apparent.
In my database, depression is the most common psychiatric syndrome associated with late stage Lyme disease. Although depression is common in any chronic illness, it is more prevalent with Lyme patients than in most other chronic illnesses. There appears to be multiple causes, including a number of psychological and physical factors.
From a psychological standpoint, many Lyme patients are psychologically overwhelmed by the large multitude of symptoms associated with this disease. Most medical conditions primarily affect only one part of the body, or only one organ system. As a result, patients singularly afflicted can do activities which allow them to take a vacation from their disease. In contrast, multi-system diseases such as Lyme, depression, chronic Lyme disease can penetrate into multiple aspects of a person’s life. It is difficult to escape for periodic recovery. In many cases, this results in a vicious cycle of disappointment, grief, chronic stress, and demoralization.
It should be noted that depression is not only caused by psychological factors. Physical dysfunction can directly cause depression. Endocrine disorders such as hypothyroidism, which cause depression, are sometimes associated with Lyme disease and further strengthen the link between Lyme disease and depression.
The most complex link is the association between Lyme disease and central nervous system functioning. Lyme encephalopathy results in the dysfunction of a number of different mental functions. This in turn results in cognitive, emotional, vegetative, and/or neurological pathology. Although all Lyme disease patients demonstrate many similar symptoms, no two patients present with the exact same symptom profile.
Other mental syndromes associated with late state Lyme disease, such as attention deficit disorder, panic disorder, obsessive-compulsive disorder, etc., may also contribute to the development of depression. Dysfunction of other specific pathways may more directly cause depression. The link between encephalopathy and depression has been more thoroughly studied in other illnesses, such as stroke.The neura1 injury from a stroke causes neural dysfunction that causes depression. Injury to specific brain regions has different statistical correlation with the development of depression. Once depression or other psychiatric syndromes occur with Lyme disease, treating them effectively improves other Lyme disease symptoms as well and prevents the development of more severe consequences, such as suicide.
Suicidal tendencies are common in neuropsychiatric Lyme patients. There have been a number of completed suicides in Lyme disease patients and one published account of a combined homicide/suicide. Suicide accounts for a significant number of the fatalities associated with Lyme disease. In my database, suicidal tendencies occur in approximately 1/3 of Lyme encephalopathy patients. Homicidal tendencies are less common, and occurred in about 15% of these patients. Most of the Lyme patients displaying homicidal tendencies also showed suicidal tendencies. In contrast, the incident of suicidal tendencies is comparatively lower in individuals suffering from other chronic illnesses, such as cancer, cardiac disease, and diabetes.
To better understand the link between Lyme disease and suicide, let’s first look at an overview of suicide. Chronic suicide risk is particularly associated with an inability to appreciate the pleasure of life (anhedonia). People tolerate pain without becoming suicidal, but an inability to appreciate the pleasure of life highly correlates with chronic suicidal risk. Of course, there are many other factors that also contribute to chronic risk. For example, one study demonstrated that 50% of patients with low levels of a serotonin metabolite (5HIAA) in the cerebrospinal fluid committed suicide within two years.Apart from factors which contribute to chronic suicidal risk, there are also factors which trigger an actual attempt, i.e.; a recent loss, acute intoxication, unemployment, recent rejection, or failure. There is much impairment from Lyme disease which increases suicidal risk factors. However, suicidal tendencies associated with Lyme disease follow a somewhat different pattern than is seen in other suicidal patients.
In Lyme patients, suicide is difficult to predict. Attempts are sometimes associated with intrusive, aggressive, horrific images. Some attempts are very determined and serious. Although a few attempts may be planned in advance, most are of an impulsive nature. Both suicidal and homicidal tendencies can be part of a Jarish-Herxheimer reaction.
I cannot emphasize enough the behavioral significance of the Jarish-Herxheimer reaction. As part of this reaction, I have seen and heard numerous patients describe becoming suddenly aggressive without warning. I can appreciate skepticism regarding this statement. How can this be explained? Like many other symptoms seen in Lyme disease, it challenges our medical capabilities. In view of this observation, I advise that antibiotic doses be increased very gradually when suicidal or homicidal tendencies are part of the illness.
Although I have discussed the significance of depression and suicide associated with Lyme disease, I would like to emphasize that treatment does help. Combined treatment which addresses both the mental and somatic components of the illness significantly improves the overall prognosis. This is supported by clinical observation and laboratory research showing antidepressant treatment improves immunocompetence.It has been demonstrated in vitro that antidepressants which act on the serotonin 1A receptor (most antidepressants) increase natural killer cell activity. In addition, there are undoubtedly other indirect effects on the immune system through other neural or neuroendurocrine and autonomic pathways. To state this more concisely - antidepressants can result in antibiotic effects, and antibiotics can have antidepressant effects.
Most depression and suicidal tendencies often respond to treatment. Suicide is a permanent response to a temporary problem. Many people who survive very serious attempts go on to lead productive and gratifying lives. Suffering can be reduced. The joy of life can be restored. Needless death can be prevented. Don’t give up hope. There are answers, solutions, and assistance. There is life after Lyme.Courtesy of: Mental Health and Illness
“MARNIE” The ALS / Lyme Conundrum
Ginger Savely, RN, FNP-C
Public Health AlertThe droning hum of cicadas provides the sound track for a hazy, humid Virginia day. A handsome middle-aged woman, dressed in well-worn 18th century peasant attire, stirs a hefty iron cauldron of beans over an open fire. As she waves away the hovering flies, she smiles, satisfied with the aroma of her simple concoction. It is amazing what a little salt pork can do for a pot of beans! She pushes back the errant strands of hair that are pasted to her perspiring forehead and then slaps her neck in response to the stinging bite of a large mosquito.
She settles back down to her knitting, content that the troops at her Yorktown encampment will take pleasure in their midday meal, one of the few bright spots in their daily lives of danger, drudgery and disease. Lamar is her name, but those close to her know her as Marnie. She is well-loved by the soldiers, who see her as a surrogate mother and a trusted friend. Marnie enjoys her life of service – part-time cook, seamstress, nurse.
The previous scene did not actually occur in the late 1700s but rather in the year 2000. The Yorktown revolutionary war battlefield encampment is one of the few historic landmarks in the United States where workers actually “live” the times, occupying their days exactly as they would have over two centuries earlier. Marnie and the soldiers were state employees performing their daily reenactment of life in the 18th century Yorktown army encampment. Curious tourists would wander about, intrigued by the extemporaneous theatrical production.
In rain and snow, in sweltering summers or freezing winters, Marnie and her co-workers spent their days in the grassy open fields, enduring flea, tick and mosquito bites and the unclean conditions of the times they sought to replicate.
Marnie, who loved the simple things in life, was well-suited to this kind of work. In fact, the job was somewhat of a dream-come-true for her: she was strong, healthy, and a “low maintenance” kind of woman who also adored domestic crafts. She had obtained a masters degree in textile design in San Miguel de Allende, Mexico and was skilled at batik, weaving, macramé, tie-dye, crocheting, embroidery, sewing and knitting. She also loved to cook and do all other manner of crafts.
Appearing much younger than her 61 years, Marnie approached life with a youthful exuberance. She had a beautiful and kind face, a radiant smile, and a welcoming manner. She looked forward to putting on her white ruffled cap, long full skirt and apron and going to work each day. Makeup and jewelry were out of the question, as she had to be perfectly in tune with her place in history. Since assuming the position of “historical interpreter” some 18 years earlier, she had fallen in love with her work and had never missed even one day due to illness.
Despite the modest pay and unforgiving working conditions, Marnie planned to stay on for the rest of her working days, with retirement being the furthest thing from her mind. Marnie had the kind of sweet and unassuming temperament that no one could dislike. Her fellow workers were protective of her trusting nature and were concerned when they noticed their normally vibrant and energetic co-worker starting to move slowly, tire easily, and require assistance to lift even the lightest tools of the trade. Never one to complain or to worry about her health, Marnie ignored the nagging signs and symptoms that something was wrong. She continued to retain her good humor and appear undaunted, even when her doctor couldn’t seem to pinpoint the cause of her sudden decline.
Her weakness worsened to the point where even turning the key to the ignition of her car required both hands and all the strength she could muster. Finally, after a visit to a neurologist, Marnie came home with news that stunned her family, co-workers and friends. The neurologist had told her that there was a strong chance she was developing Amyotrophic Lateral Sclerosis (ALS), also called Lou Gehrig’s disease for the famous baseball player who died from it. ALS is a relentless neurologic disease that affects the nerve cells (neurons) responsible for controlling voluntary movement. It gradually strips its victims of muscular functions, ultimately dooming them to life with a ventilator and feeding tube, unable to speak, the body paralyzed but the mind completely alert.
As many as 30,000 Americans have ALS, and an estimated 5,000 people of all races and ethnic backgrounds are diagnosed with the disease each year in the United States. ALS most commonly strikes people between 40 and 60 years of age, and men are affected almost twice as often as women. There is no known cure and generally life expectancy is three to five years.
In 90 to 95 percent of ALS cases the cause is unclear, with the remainder of cases being due to a genetic abnormality. It has been noted that a high percentage of those diagnosed with ALS had outdoor jobs, spent a good deal of time outdoors, or participated in outdoor athletics. There is also a higher incidence of the disease in military personnel previously deployed in overseas missions.
The only treatment currently available for ALS patients is a drug called riluzole (Rilutek) which at best prolongs life by about two months (but usually only in patients with swallowing difficulties). The medication reduces the levels of the amino acid glutamate, which is thought to be abnormally high, and therefore neurotoxic, in ALS patients.
In order to fit the “official” diagnostic criteria of ALS, the patient needs to have abnormal electromyography (EMG) readings in at least three areas of the body. The EMG measures a muscle’s ability to contract when the motor neuron is stimulated.
Marnie called me to tell me the neurologist’s tentative diagnosis. She said, “He told me that I don’t exactly fit the diagnostic criteria for ALS but he thinks I have some sort of motor neuron disease and there is really nothing he can do for me.”
As a practitioner who specializes in treating patients with Lyme and other tick-borne diseases my diagnostic antennae go up when I hear words like these. Frequently, patients with neurologic symptoms that don’t quite fit a known diagnosis are misdiagnosed victims of at least one tick-borne infection. Marnie certainly had known her share of ticks. During her 18 years of working in the fields of Yorktown, she had pulled dozens of the blood-sucking creatures from her body. “I’ll mail you an IGeneX Laboratories blood test kit,” I said, “and let’s see what we find out”.
As is often the case in patients with severe or long-standing Lyme disease, Marnie’s Lyme Western Blot test results were technically “negative” but highly suspicious for exposure to Borrelia burgdorferi (the causative agent of Lyme disease). She was, however, positive for Babesia, another tick-borne infection. It was enough evidence for me to recommend treatment. After all, the only other option was to accept the ALS diagnosis and helplessly await certain death. A poll of several of the nation’s Lyme experts convinced me that we should not waste another moment but start her at once on intravenous Rocephin, the antibiotic of choice for those with neurologic Lyme disease.
But Marnie wasn’t convinced that she had Lyme disease. After all, she didn’t have the joint pain, malaise or cognitive disturbances that were characteristic of the illness. The intravenous line sounded so drastic and dangerous. She opted to go on oral antibiotics and I referred her to a Virginia Lyme specialist for treatment.
During the following two years Marnie’s life went into a gradual tailspin: months of oral antibiotic treatment with resultant nausea and loss of appetite; difficulty adapting to the “sick role” considering a previously robust constitution; gradually worsening weakness; drastic weight loss due to muscle wasting; dealing with family panic and frustration about her unwillingness to try IV treatment; having to abandon the arts and crafts she loved due to muscle contractures in her hands; and reluctant retirement from her beloved job.
In September of 2002, the tentative diagnosis changed to a definite one as she ultimately fit the diagnostic criteria for ALS. When she reached the point of needing a wheelchair, she moved in with her daughter, who could keep her company and tend to her physical needs. There, daily doses of her four year old grandson were welcome medicine for Marnie’s spirit. Her beautiful smile never faded, and although each month her condition worsened, she never chose to give up hope.
On September 18, 2003, hurricane Isabel tore through Virginia leaving the state’s picturesque landscape cluttered with scattered branches and large debris. Grand old trees lay uprooted, testimony to the wind’s savage wrath. I was hoping to fly east to visit Marnie during that time, but the inclement weather caused flight cancellations and general chaos for travelers. The first few days after the hurricane were eerily quiet: residents surveyed the damage caused by Isabel’s fury and marveled at the crisp, lovely autumn weather, weather so mild and innocent as to be oblivious to the storm’s recent mayhem. During Isabel’s aftermath, Marnie seemed to exhibit a clarity and tranquility she had not felt for a long time. She commented on feeling better, particularly due to a reprise of the unrelenting nausea that had plagued her for months. The evening of the 21rst Marnie even enjoyed a brownie sundae with the rest of the family. There was still that glimmer of hope.
But the following day she stayed in her reclining chair the entire day and seemed to go in and out of consciousness, her brain reacting to the oxygen deficiency that resulted from her weakened respiratory muscles. It is said that when a brain is oxygen-deprived a morphine-like state is induced. And thus a drowsy euphoria came over Marnie as life’s memories flowed randomly through what remained of her waning consciousness. Her daughter stayed close by all day as she tended to housework, while her son-in-law labored diligently in the yard, clearing the storm’s senseless wreckage. By evening, delirium drifted in with its collage of people and places and Marnie could occasionally be heard calling out in response to a vision in her mind’s eye.
At about 9 pm on September 22, 2003, Marnie took her last breath and calmly slipped away, without anguish, without pain, without suffering. It ended the way she wanted it to – at home, without tubes, needles, ventilators or medical personnel. When I received the call to tell me the news, I could not stop sobbing. Despite the inevitability, I was still stunned by the loss. How was it possible to lose someone so vigorous and virtuous? She should have outlived us all with her stamina and healthy lifestyle. Of course, I was relieved that Marnie’s suffering was over, sparing her the final, most gruesome stage of the disease. But her untimely passing haunts me still. A part of me died when I lost my sister Marnie.
There were so many questions. Which did she have: advanced neurologic Lyme disease or ALS? Or did she have both? Did the Lyme disease cause the ALS? Does everyone with ALS have Lyme disease? Might anyone with untreated Lyme disease stand a chance of developing ALS? Would intravenous antibiotics have given her more time? Is there anything that we could have done that we didn’t do?
These are questions without answers. Meanwhile, hundreds of patients diagnosed with ALS continue to test positive for Lyme disease and seek treatment, in desperate hopes of a cure. A very few lucky ones do get a second chance at life. Dr. David Martz, a hematologist in Colorado Springs, was one of the lucky ones. Wheelchair bound and given a few months to live, his Lyme diagnosis and subsequent intravenous antibiotic treatment gave him his life back.
He now “pays it forward” by specializing in treating these very patients. A kind and righteous man, he has devoted himself to discovering just the right approach to the antibiotic treatment of the patients with advanced neurologic symptoms who come to see him from all over the world. He has had impressive success in treating these difficult and delicate cases. But there is only so much that can be done. Once a nerve has died it typically cannot regenerate. So the goal with these patients is to start treatment as soon as possible, in hopes of halting the progression of motor neuron death. Dr. Martz continually refines the balancing act of treating aggressively enough to cure but gingerly enough to avoid the sharp decline these patients often experience as a reaction to overly ambitious treatment. May he live a long and healthy life and continue his ground-breaking work!
Whenever I interview a new patient with an ALS-like presentation of Lyme disease it is hard for me not to think of my beautiful, brave Marnie. I relive the grieving we all went through as she lost her life, one function at a time. My patients’ losses are my losses; my patients’ triumphs are my triumphs. I keep on - in honor of my sister - waiting for answers and miracles, hoping that someone else’s loved one will not have to be taken before it is time.
Courtesy of: Public Health Alert
"Do not be afraid to go out on a limb ... That's where the fruit is."
- Anonymous
© 2006 The National Lyme Disease Memorial Park Project
