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Lyme disease is one of the fastest growing vector-borne diseases in the United States, but it remains misunderstood and misdiagnosed. Just ask Betty LeBlanc of Temperance - for five years she has suffered through the fatigue, joint inflammation, tremors and memory loss the disease engenders, with little support from the medical community.
As LeBlanc told her story, 14 different medication and vitamin supplements sat in a box on the table before her. With visible muscular tremors, she showed the chart her husband Joe had made for her with color coding and dates to help her remember the proper medication schedule.
"I've been kicked out of three emergency rooms," said LeBlanc as she began narrating her struggle to convince doctors of the seriousness of her condition. "I walked in to a doctor's at UVA. . .she looked at me for five minutes, never even touched me, and handed me a brochure on Fybromyalgia."
LeBlanc, 62, was an active woman, having taught physical education in the public schools for more than 30 years. An avid gardener, LeBlanc and her husband Joe formerly lived on 40 acres of land on which she raised a variety of vegetables. Because of her illness, the LeBlancs were forced to move to a much smaller piece of land on Dug Hill Road. Now, she's lucky if she can make it to the mailbox unassisted.
"I was playing softball into my 50s, and Joe and I square danced four or five nights a week," she said. "Now, I can't even do the food shopping. I don't leave the house much at all anymore."
Lyme Disease was first identified in Lyme, Connecticut, in 1982, and has since been detected in 47 states. The disease is most concentrated in the Northeast where the climate provides a favorable habitat for the Lyme Bacterium's preferred transmission vector, Ixodes Scapularis, commonly known as a deer tick. However, Lyme Disease is thought to be carried by other ticks as well, including the lone-star tick , which is indigenous to the Southeast including Virginia.
The disease causes progressive loss of motor control, extreme fatigue, joint swelling, numbness and partial paralysis of the extremities, loss of memory function and a host of other conditions. Because the symptoms of LD mimic those of other ailments such as Rheumatoid Arthritis, Fybromyalgia and Chronic Fatigue Syndrome, many sufferers are misdiagnosed, and thus miss the opportunity to eradicate the bacteria within a month of infection.
If the illness is not treated aggressively within one month of infection, the bacteria will remain and cause the patient to relapse in the future. There is no known cure for chronic LD. LeBlanc didn't suspect she had Lyme disease until nearly a month of flu-like symptoms had plagued her without relief.
An area clinic diagnosed her with an inner ear infection, and sent her home with 10 days worth of antibiotics. Despite her suspicion that she may have contracted LD from a tick bite, LeBlanc was told that Lyme Disease didn't exist in Virginia. Indeed, LeBlanc herself was ignorant of this possibility until she experienced the symptoms herself.
"I have always worked outdoors, and I was covered in ticks all the time. I never thought anything of it," she said. The doctors who examined LeBlanc initially said that she did not have LD because she did not have the characteristic bull's eye shaped rash denoting the tick bite. However, only 60 to 80 percent of infected persons ever develop this rash; many cannot recall being bitten at all. As a result, the Lyme bacteria often have a chance to establish before proper diagnosis is made, making treatment difficult.
Intensive antibiotic therapy within one month of infection is usually effective in warding off chronic LD, but if not caught within this window of time, the disease is difficult, if not impossible, to stop. LeBlanc's condition worsened considerably over the following months. Often, she resorted to using a wheelchair to get around in public and she began losing sensation in her foot. Exhaustion became her constant companion, and the pain in her limbs became so unbearable that sleeping was more a chore than a respite.
"My feet are all pins and needles," she said. "Most times, it's so bad I can't even stand to have a sheet on them." LeBlanc tried in vain to convince any doctor in Central Virginia that she had indeed contracted LD. She begged several physicians to start her on new antibiotic treatments, but was flatly denied by all of them. To her amazement, LeBlanc was told that she could not possibly have Lyme Disease, as it was not "in Virginia," and she did not have the rash and swollen knees associated with it (even though the rash only appears directly after the bite).
In addition, a test administered by an infectious disease specialist found her to be "borderline" in terms of Lyme infection, but the doctor still refused to treat her for the disease on the basis that she did not present the classic rash. "I've been diagnosed with Fybromyalgia - which is a cop out doctors use when they don't know enough about Lyme Disease - Rheumatoid Arthritis and Chronic Fatigue Syndrome," she said.
"I have been called a hypochondriac as well. It's unbelievable- doctors don't want patients to know more than they do; the arrogance is astounding. Doctors in Virginia know nothing about Lyme Disease, and they don't want to know." While the great majority of case (numbering in the thousands each year) are reported in New York and Connecticut, Lyme Disease has been reported in Virginia since 1984, with approximately 75 cases reported per year.
According to information from the Centers for Disease Control and Prevention, peak years in Virginia have seen 151 cases. According to LeBlanc, though, most cases of Lyme Disease in Virginia (she cites her own as an example) are not reported or are misdiagnosed, thus skewing the numbers. In desperation, Betty's husband Joe turned to the internet in hopes of finding more informed physicians. What he found was startling.
According to research from the Lyme Disease Foundation and several prominent medical journals and studies, the most widely used tests to diagnose Lyme Disease (the ELISA and the Western blot) had only a 60 percent chance on average of detecting the antibodies to Lyme bacteria in the blood. Because many factors can affect the incidence of Lyme antibodies, many infected patients are turned away with a false negative result and a pat on the head.
Eventually, the LeBlancs found a doctor in Long Island who specialized in LD, and who would administer a new type of test that is able to detect the Lyme bacterium directly. Betty LeBlanc was given the Lyme Urine Antigen Test (LUAT), three times; two out of the three tests came back "highly positive." The doctor recommended intravenous antibiotic treatment, but the LeBlancs could not find any doctor in Virginia willing to accept the results of the tests - which are not yet FDA approved - or to administer the treatment.
"I have living proof of the disease, right here in color pictures," she said. Indeed, LeBlanc displayed several scanned photographs from the laboratory culture of her blood which showed the classic spirochete forms of the Lyme bacteria. Still, she has been unable to find a physician in the state of Virginia who will recognize her Lyme Disease, let alone treat it. She has resorted to driving with her husband every month to a doctor in Pennsylvania who suffers from the disease and advocates aggressive antibiotic therapies.
LeBlanc has had some success with the oral antibiotic and supplement regimen, but her condition went untreated for so long that she is likely to be on antibiotics the rest of her life. Even with the treatment, LeBlanc has been unable to return to anything resembling a normal life. To complicate matters further, many doctors are afraid to treat Lyme disease, or acknowledge publicly that they treat it. A number of legal actions have been filed against physicians by what Lyme Disease advocates characterize as an ill-informed, egotistical and unscientific segment of the medical community.
The New Jersey Board of Medical Examiners has attempted to revoke the licenses of several physicians who treat LD with IV antibiotics, on the grounds that it is a "deviation from generally accepted medical practices." The result of this denial, said LeBlanc, is that insurance companies - who will not pay for non-FDA approved treatments in any event - do not cover the cost of treatment for many Lyme Disease patients in the absence of a diagnosis. In order to even get the appropriate tests, she said, one of her doctors had to disguise the motive behind the blood work order by labeling it as "menopause-related."
"I'm worried about my retirement too," she said, "This isn't covered by insurance, and we're using up our savings to pay for the cost of the trips and the drugs. Betty LeBlanc hopes that her experience will not be in vain. If one person hears her story and gets appropriate medical treatment, she says, it will give some small measure of meaning to what has been a pointless and nightmarish ordeal.
"People think if you've got Lyme Disease, you've just got a few aches and pains," she said. "Well, I've got news for you - it's a whole lot worse than that."
Note: Pictures of Betty's Lyme Culture results and information
about the Culture test are posted on
our Bulletin Board on Part 2 of this newsletter.
Hello, and a very good June to all of you! This month we'll be discussing the different types of fiber that can be added to the diet. And In this month's Herb Corner we'll be covering the following herbs: burdock, cayenne, blessed thistle, licorice and marshmallow. As always, if you have any questions regarding any of the information contained within this column, please feel free to E-mail me.
Fiber is found in many foods and has numerous uses including helping to prevent cancer of the colon, and lowering blood cholesterol levels. It is also helpful in preventing hemorrhoids and in relieving constipation, as well as stabilizing the blood sugar levels in the body.
Unfortunately, the Amercian diet is seriously lacking in fiber because of the refining process in food manufacture in the United States, which removes much of the fiber from the foods that we find on our supermarket shelves.
Hence, we must use supplemention to make up for this shortage of fiber. There are seven different types of fiber: lignin, mucilages, pectin, cellulose, hemicellulose, gum and bran. Because each of these has its own benefit, we should incorporate a number of them into our daily diets. The following foods are rich in fiber: brown rice, beans, lentils, fresh raw vegetables, most types of fresh fruits, nuts, whole-grain cereals, agar, all types of brans, peas, seeds and dried prunes.
There are many good supplemental forms of fiber available at your local healthfood store. Remember not to take supplemental fiber at the same time as other medications or supplements, as it can inhibit the body's absorption of them. Moreover, taking excessive amounts of fiber can also inhibit the body's absorption of the minerals iron, calcium and zinc.
*Caution -- In addition to the aformentioned warnings, people using fiber supplements should be aware that they may have or may develop allergies to them. Should you develop a rash or experience any other odd symptoms while using a fiber supplement, discontinue use of it immediately.
The Herb Corner
This herb is best known for its use as both a blood purifier and natural diuretic. It aids the pain associated with such maladies as arthritis and rheumatism in addition to lumbago and sciatica. Burdock has been used to improve both liver and gallbladder function, and also acts as an immune system enhancer.
This herb is not only useful in relieving symptoms associated with gout, but is also effective in treating skin disorders such as psoriasis and eczema. It contains many nutrients including copper, biotin, iron, manganese, tannins, zinc, sulfur and the vitamins B1, B6, B12 and E. Burdock can be used internally or externally. To use internally: take up to 3 capsules daily; Extract - mix between 10 and 25 drops of extract in 8 ounces of water. To use externally: apply herb to irritated areas of skin.
*Caution -- Those suffering from an Iron deficiency should use burdock with caution, as it can interfere with the body's absorption of Iron. In addition, people using it should be aware that they may have, or may develop an allergy to burdock. Should you develop a rash or experience any other odd symptoms while using this herb, discontinue use of it immediately.
This herb (also known as capsicum) is one of the best natural digestive aids available, as it not only stimulates the production of gastric juices, but also produces a relaxing effect on the body. In addition to improving metabolism, cayenne also helps to improve the appetite.
This nutritious herb contains a compound known as capsaicin (an antiinflammatory which helps to reduce the inflammation associated with illnesses such as rheumatism and arthritis). Research has shown that cayenne may actually help to lower blood triglyceride and LDL (the bad cholesterol) levels in the body, and shows some promise in the treatment of cluster headaches. Cayenne can be taken internally or externally. To take internally: take 1 - 3 capsules a day; A soothing cup of cayenne tea can be taken to relieve stomach cramps or to promote a relaxing feeling; Externally: A liniment can be applied to inflammed areas of the body (do not use the liniment on broken skin, as it can cause skin irritation).
*Caution -- Do not use this herb if you suffer from chronic gastrointestinal disturbances or kidney
damage. Moreover, cayenne can irritate hemorrhoids, so if you suffer with them avoid use of this herb.
In addition, people using it should be aware that they may have, or may develop an allergy to cayenne. Should you develop a rash or experience any other odd symptoms while using this herb, discontinue use of it immediately.
Blessed thistle is one of the best ways to treat the absence of the menstrual cycle in women, after the onset of menstruation (commonly known as amenorrhea). In additon this herb also aids in breaking up blood clots. It is said to be beneficial to the liver, as it helps to promote the production of bile, and is also useful in helping to lower a fever.
This herb helps to stimulate the appetite, in addition to improving the body's circulation. Blessed thistle is available in both capsule and extract forms. Capsule: take 1 - 3 capsules daily; Extract: mix between 10 to 20 drops of in an 8 ounce glass of water.
*Caution -- Blessed thistle should never be used during pregnancy. In addtion, people using it should be aware that they may have, or may develop an allergy to blessed thistle. Should you develop a rash or experience any other odd symptoms while using this herb, discontinue use of it immediately.
Licorice root offers a number of medicinal benefits. Not only is it useful in treating infections of the bladder and kidneys, but it also works well as an expectorant to help break up the congestion associated with colds and flu. It can function as an analgesic to ease the pain associated with ulcers and arthritis, and appears to be useful in preventing tooth decay. There is some evidence that this herb may also have the ability to slow the growth of certain types of cancerous tumors.
Licorice is available in capsule form; take 1 - 3 capsules daily. Don't attempt to use licorice candy in place of the root, as it does not offer the same benefits.
*Caution -- Do not use this herb if you suffer from hypertension (high blood pressure). Also note that licorice root can inhibit the body's absorption of the mineral potassium which may lead to an abnormal heart rhythm.
Marshmallow is one of the best "old fashioned" remedies in the treatment of ulcers and colitis. It is also helpful in treating enteritis (inflammation of the intestines). It functions as an expectorant to break up the chest congestion experienced with colds and flu, and because it contains mucilage offers relief to irritated mucous membranes.
Marshmallow can be taken in either capsule or dried herb forms. Capsule: take 1 - 3 capsules daily; herb: mix a tablespoon of dried herb in 8 - 10 ounces of water to make a soothing tea. Drink up to 3 cups per day. External preparations are also available for treating skin irritations.
*Caution -- While there are no warnings regarding this herb, people using it should be aware that they may have or may develop an allergy to marshmallow. Should you develop a rash or experience any other odd symptoms while using this herb, discontinue use of it immediately.
***Caution should be taken when using herbal supplements. Many of these while harmless at their recommended dosages, can become dangerous when taken in larger amounts. In addition, some people may have or may develop allergies to an herb that has had no prior reputation for causing allergic reactions. If you feel that you need to increase your daily intake of a particular supplement, please speak with either your physician or someone who is knowledgeable with regard to pharmacognosy (the study of drugs derived from plants).
Until next month!
Jim : )
Submit your Questions
By Borrelia email@example.com, Stephen J. Nostrom R.N.,Founder/Director,Lyme Borrelia Out-Reach Foundation, circa 1987
***** Please note that the following presentations are possible in Lyme Borreliosis. Since each patient is different, (base line health, medications age, etc.) symptoms may and do vary. The previous and following definitions are shared so as to show that what may appear to be a psychiatric matter may well be Lyme induced via invasion of this spirochetial, bacterial infection!
"Delusion" A false belief, inconsistant with reality, that is held in spite of evidence to the contrary. Ex: " I know that everyone is out to get me, to harm me."
"Dissociative Disorder" A disorder characterized by a sudden temporary alteration in consciousness, identity, or motor behavior. Ex: "I feel like I am having an out of body experience, that I am looking at my-self from the outside. I no longer know who I am and can't seem to control myself" (may shake, tremble, jerk) .
"Dreaming" This is an altered state of consciousness that occurs largely during what is called "REM Sleep," and is usually accompanied by vivid visual, tactile, and auditory experiences. Some Lyme patients experience nightmares as well as night terrors and the "REM sleep" may not occur!
"Emotion" A subjective feeling or response generally accompanied by a physiological change and is usually associated with a change in behavior. Ex: The Lyme patient may laugh, cry, or present other emotions such as anger, frustration, etc. as we all do from time to time, but....and I will use self as an example here...I recall bursting out in tears during dinner at a church service, etc. My point being the patient's emotions may not be easily controlled as to their pre-Lyme onset.
"Free floating Anxiety" Persistant anxiety not clearly related to any specific object or situation and accompanied by a sense of impending doom. This is a common presentation. The patient may be so filled with fear because he/she feels, as well as believes, that something terrible is about to happen and often times is afraid to be vocal about it.
"Hyperactivity" Defined as an attention deficit disorder whose symptoms include overactivity, distractibility, restlessness, and short attention span. This speaks for itself and is often experienced in the Lyme patient.
"Insomnia" Prolonged inability to sleep. A common problem in Lyme!
"Libido" Sex drive may diminish in some individuals male and female, OR become hightened!
"Memory" Simply, the ability to recall or remember past events or previously learned information and or skills. Many Lyme patients have trouble in this area, especially with short term memory, BUT also with past learned experiences. For example, what does the light switch do? How do I start the car, the washer, dryer or what is a screw driver or a soldiering iron used for? Using self here as an object lesson. I am quite handy around the home electronically, etc. When Lyme hit years ago, I could not hook up a simple Nintendo game I had purchased for my teenage son and was in his room over three hours with screw driver in hand. It should have taken perhaps one minute. I recall such matters from my wife and a journal I had kept.
"Morality" A system of learned attitudes about social practices, institutions, and individual behaviors used so as to evaluate events as right or wrong! ****Some Lyme patients may be too confused and thus step over the boundries in which they would never have thought about or entertained such ideas before contracting Lyme disease.
"Morphemes" The basic units of meaning in language. Children of Lyme depending upon their age, may not grasp the meaning of such language and/or those who may have learned the meanings may have lost the meaning/meanings!
"Motivation" An internal condition initiated by drives, needs, or desires and "producing" goal directed behavior/behaviors! In many lyme pts. such may be lost, limited, non important!
"Need for achievment" A social need that directs a person to strive constantly for excellence and success! The Lyme patient, depending upon the infection, as with all shared thus far may become so overwhelmed that little matters any more than rest and "just leave me alone!"
"Nerve deafness" Impairment in hearing as a result of damage to the cochlea or auditory nerve. Lyme may well indeed cause hearing loss and deafness!
Obessive-Compulsive Disorder" A disorder characterized by persistent and uncontrollable thoughts and irrational beliefs, that cause an individual to perform compulsive "rituals" that interfere with the activities of daily living! Ex: Handwashing, checking the doors in the house dozens of times prior to going to bed to see if they are locked, etc.
"Preception" The complex process by which we interpret sensory input so that it acquires meaning. All senses may be hightened and/or diminished. For example, light sensitivity may cause pain to our eyes, lights may cause pain to our eyes.
"Personality" A set of relatively enduring behavioral characteristics that describe how a person reacts to the environment in which she/he lives. It is not uncommon to see the Dr. Jeckle-Mr. Hyde syndrome in Lyme. Ex: The easy going person becoming more hyper or frustrated...in general, changes from the norm.
Well it looks as if I have run out of space here . Next month will be the third and final part of this series. In closing: I not only "Believe that there is hope for the Lyme Patient, I know there is hope!
The purpose of this subject matter, "Psychiatric Presentations" in the Lyme Patient, is to bring about awareness as well as understanding to not only the patient, but also the care givers, the extended family, and the community at large.
We are "NOT AT ALL ALONE IN THIS UNFOLDING DRAMA called Lyme! We are "LEGION," that is, We can share or be silent.....It is my position to share as well as "cry out with a loud voice!"
I hope this and other topics have assisted you. If so, let me know! If not, please also share, so that we can fight the good fight.
Simply, Steve Nostrom
Questions, Comments for Steve
LOS ANGELES, May 23 (Reuters Health) - An extract made from potato peel prevents adhesion of bacteria to host cells, which researchers suggest is a strategy that should be studied as an alternative to traditional antibiotics.
"Most people interpret anti-infective compounds in the traditional antimicrobial sense, meaning some kind of chemical that's going to inhibit the growth or kill bacteria or other microorganisms," Dr. Marjorie M. Cowan, of Miami University, in Oxford, Ohio, told Reuters Health. "We were aware that there were components in plants that instead block the adhesion of microorganisms to the host tissues."
Potatoes are widely used medicinally in indigenous cultures, and contain large amounts of polyphenol oxidase (PPO), she noted. Since PPO is known to have anti-adhesive properties, her group screened potato extracts and found that a component of the peel inhibited the adhesion of Streptococcus sobrinus 6715 and type 1-fimbriated Escherichia coli to their host receptors, but did not kill the bacteria.
She described her team's findings in a presentation here yesterday at the annual meeting of the American Society for Microbiology.
Her group suspected that PPO might be responsible for the inhibition, because the extract had PPO activity, the extract contained a protein that was the same size as purified PPO, and PPO inhibitors blocked the extract's ability to block bacterial adhesion. Dr. Cowan said that PPO is known to work on tyrosines and convert them to quinones, and that 60% of bacterial binding proteins are known to have a conserved critical tyrosine residue.
However, whether the anti-adhesive action is due to PPO is not really the issue. "Adhesion is a necessary first step in order to cause disease, otherwise [bacteria] just get washed out of the body," she said. "All the thousands and thousands of people who are screening plants to find antimicrobial substances, their initial screening techniques would only catch substances that inhibit growth and would not catch anti-adhesives."
Researchers working on antiviral strategies already work on blocking viral attachment to the host, she noted, but blocking adhesion is considered a novel strategy for antimicrobial compounds.
She noted that antibiotics that kill bacteria can cause release of toxic substances that can cause damaging inflammatory responses, which would not be an issue with an anti-adhesive. In addition, she thinks that bacteria would be less inclined to develop resistance to an anti-adhesive, although she envisions these compounds as "another weapon in what needs to be a diverse arsenal of antimicrobial therapies."
NEW YORK (Reuters Health) - A pair of new studies reveal how some tick-borne illnesses evade the body's infection-control system. The findings may lead to new ways to fight these diseases, which include Lyme's disease and ehrlichiosis.
According to researchers at the University of Georgia in Athens, the bacteria that cause Lyme disease seem to have circumvented the need for iron. The role of iron has always been regarded as a "fundamental tenet" in the disease-causing capability of bacteria. That is, without securing adequate iron, bacteria cannot perform their principal task--infecting a host, such as an animal or human. For its part, the host imposes limits as to how much iron is freely available.
"Surprisingly, the Lyme disease (microorganism) Borrelia burgdorferi has bypassed this host defense by eliminating the need for iron," Drs. James E. Posey and Frank C. Gherardini write in the June 2nd issue of the journal Science.
"We initially believed that Borrelia burgdorferi would use (iron) as had been observed in all other bacterial (disease-causing organisms) and were totally caught off guard as the data began to be collected," Gherardini told Reuters Health.
The team found that B. burgdorferi has developed an unusual approach to the problem of iron limits: genes controlling production of iron-requiring proteins have been lost and, where any so-called metalloproteins are found, B. burgdorferi has replaced iron with manganese, another metal.
Posey and Gherardini suggest that this strategy may also have been adopted by bacteria that cause diseases such as syphilis and mycoplasma pneumonia.
"Understanding the essential systems...that allow these bacteria to infect and survive long term in the host should give us new targets for treatment of the disease," Gherardini said. He added that the team's work was "aided greatly (by) the completion of the (genetic sequencing) for B. burgdorferi. Credit goes to the research groups and the National Institutes of Health for having the foresight to undertake and fund these projects."
A second report in Science looks at another tick-transmitted illness called human granulocytic ehrlichiosis (HGE). The bacteria associated with HGE infects a particular cell of the immune system called the neutrophil, a type of white blood cell.
Dr. Jesse L. Goodman, of the University of Minnesota School of Medicine in Minneapolis, with colleagues there and at Northwestern University School of Medicine in Chicago, Illinois investigated how the bacteria cause infection, given that these types of white cells are "normally hostile" to invasion.
Goodman explained to Reuters Health that "much like a Trojan horse, the bacteria seems to successfully pretend to be friendly, a part of the body, and not an invader."
The investigators found that HGE is drawn to a specific receptor on the surface of the neutrophil. While normally an invader would not be able to bind to this receptor, the bacteria apparently produces its own version of the protein molecule, P-selectin, that fits the receptor, thereby 'tricking' the cell into allowing it access.
The researchers demonstrated that interfering with the receptor-binding process prevented infection. Moreover, HGE was shown to be capable of infecting normally non-susceptible cells when those cells were modified to carry that receptor.
According to Goodman, the potential clinical implications of these findings are significant. "First, for understanding and preventing HGE infection itself," he said. "By showing how the 'bug' binds to the cells it infects, scientists can better develop strategies such as vaccines that prevent the bacteria from ever entering the cell." Goodman notes that this work "could yield results within 1 to 3 years."
Second, "by understanding...how HGE affects the white cell, scientists may be able to develop (new methods or drugs to) stimulate or, when needed, reduce white cell responses and/or stickiness to other cells, including inflammation."
Goodman cautions, however, that "clinical pay-offs, if they did occur, would likely take several years."
In Goodman's view, this study represents "an interesting example of how we can sometimes learn about things which are of general importance--how white cells work, for example--from studies of diseases, even uncommon diseases."
He also reminds everyone in areas where ticks are present "to consider ehrlichiosis, and see their physician if they have a significant illness with fever after potential tick exposure. Treatment is effective but, untreated, HGE can make people very sick and may even be fatal in a small minority of cases."
SOURCE: Science 2000;288:1651-1653, 1653-1656.