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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
"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
