From: tincup
Date: 16-Sep-2000 at 10:04 PM EDT
Host: gal5-19.dmv.com /
Document Title: Symptoms list once again...
When you write to the editor, or the people in Cheryls post to help Dr. B, please feel free to refresh your memory here, or use any parts of this to help along the way. Not that many of us need to be reminded of all this...but it may be of help to someone. I hope you write those letters! Take care of you!
IT IS LYME TIME YOU KNEW
11/98
It isn't the years and years that I have been so terribly sick (twelve years and still going), or the endless days in the hospital. It isn't the countless hours
confined to bed, or the brain deteriorating as I helplessly watch. It isn't the years of daily physical therapy for the "get-down-on-your-knees-and-pray-for-it-to-end-pain". I have even become accustomed to the repeated poking and probing tests, as if this is what the rest of the world spends its days doing.
It isn't the improper diagnosis, endless treatments, or the thousands of dollars spent on medical bills ($200,000.00 and still counting). It isn't the
fact that I have lost my job, my home, my income, my dignity, my friends, and the little sanity I had that is so distressing at this point. It isn't even the continual battles with insurance companies, or the never ending parade of doctors who won't listen, or medicines that don't work.
What makes me hurt so much is the fact that after all these years I still see other people suffering from the devastating effects of Lyme disease. It is the sad news that, more often than not, the diagnosis of Lyme disease is
being overlooked, or when finally discovered, is being treated improperly. It is the fact that a lifetime of suffering could be avoided, and many lives could
be saved if only "they" had known. Well, it is high time "they" all knew. It is time for those responsible for caring for Lyme patients to get the updated information, listen, and act aggressively and to treat the disease before more people spend a life time in pain.
I am not a doctor. I have no medical degree, or even an office in which to hang one. I am simply an unlucky individual who was once very active, loved life, loved people, worked and played outdoors, volunteered in the
community, traveled, and had the pleasures of raising a family. I knew absolutely NOTHING about Lyme disease when I was first caught in its web (and it appears there were very few that did). I had to learn things the hard
way, by doing it, and I don't wish that fate on anyone.
If Lyme disease has left me with anything, it would be a good deal of bitterly acquired "street smarts". Perhaps the "been there, done that" information below will prevent someone you know from getting the disease, or at least make it a minor inconvenience instead of a life time of
struggle.
IT'S LYME TIME YOU KNEW
Lucy Barnes
Did you know Lyme disease can mimic, show similar symptoms to, or be confused with... Chronic Fatigue Syndrome, Multiple Sclerosis, Alzheimer's, Parkinson's, Lou
Gehrigs (ALS) Disease, Guillian-Barre Syndrome, Polymyositis, Hepatitis, Cardiac Disorders, Fibromyalgia, Tullio phenomenon, ADD, ADHD, Lupus, Depression,
Candidiasis, Chronic Mononucleosis, Hypoglycemia, Stress-related Illness, Anorexia, Agoraphobia and Arthritis. Some patients diagnosed (misdiagnosed) with the above
conditions were found to have Lyme disease. They were later treated with anti-biotic therapy, and improved.
Did you know Lyme disease can have a wide range of symptoms, which can go dormant (sometimes for years), can migrate, return, disappear, or change day by day?
Symptoms can be aggravated by stress, medications, weather, and other outside influences. Symptoms may tend to worsen on a four week peaking cycle. SOME of the symptoms that may be found in those with Lyme disease include;
Flu-like symptoms, headaches (mild to severe), recurring low grade fevers or fevers up to 104.5 degrees. Usually in the first few weeks of Lyme disease fevers tend to be higher. (Patients with Lyme disease tend to have a "normal temperature" below 98.6 degrees, therefore, a slight rise in temperature may be all that is noted.) Often patients exhibit fatigue (mild to extreme), joint pain (with or without swelling), muscle pain, connective tissue pain, recurring sore throat (sometimes only on one side of the throat), swollen glands (come and go), varying shades of red on ear lobes and pinna, malar rash, cold hands and feet in a warm environment, weakness, lightheadedness, eczema and psoriasis, painful or itching skin, flushing, night or day sweats, inordinate amounts of sweating, anhydrosis (inability to sweat), or dermatitis(acrodermatitis chronica).
There may be a rash, but it isn't noticed or does not appear in all cases. The rash maybe basically circular with outward spreading, however, other varieties are seen. The rash may be singular or multiple, at the site of a bug bite, or in another location, warm to touch, or slightly raised with distinct borders. In dark skinned individuals the rash may appear to be a bruise.
Numbness, sleep disturbances, vertigo, hearing loss, feelings of being off-balance, unexplained weight gain or loss, and feeling "infected" are also problems associated with Lyme disease. Symptoms may develop that include: panic attacks, anxiety, depression, mild to severe cognitive difficulties, mood swings, coma, seizures, dementia, mania,
biploar disorders, vivid nightmares, stammering speech, confusion, memory loss (short or long term), "brain fog", vibrating feeling in head, topographical disorientation, and
environmental agnosia. Some patients have problems with numbers and sequencing, disorganization of thoughts, rambling on in great detail while talking, frequent errors in word selection or pronunciation, changes in personality, short attention span, Tourette manifestations, OCD (obsessive compulsive disorder), raging emotions, and cranial nerve palsies.
Patients have reported bladder disfunction (neurogenic bladder with either hesitancy, frequency, loss of bladder awareness, urinary retention, incontinence or symptoms of
UTI, and chronic pyelonephritis). Intersitial cystitis, irregular or severe menstrual cycles with decreased or increased bleeding, early menopause, a new onset of P.M.S. symptoms, or disturbed estrogen and progesterone levels are documented in many cases.
Other problems include altered pregnancy outcomes, severe symptoms during pregnancy, abdominal bloating, irritable bowel syndrome, abdominal pain and cramping
(may appear to be ulcers), loss of sex drive, testicular or pelvic pain, breast pain, and fibrocystic breast disease.
Diarrhea (which can come and go or last for months with no explanation),constipation (which can be severe enough to cause blockage), irritable bowel syndrome,
spastic colon, nausea, stomach acid reflux, gastritis, abdominal myositis, and indigestion
are some of the gasto-intestinal disorders reported. In addition, patients demonstrate a higher occurrence of various types of cysts (liver, breast, bone, ovary, skin, pineal gland and kidney).
Some Lyme patients are diagnosed by their eye care professionals and have been documented as suffering from one or more of the following disorders: conjunctivitis,
ocular myalgias, keratitis, episcleritis, optic neuritis, pars planitis, uveitis, iritis, transient or permanent blindness, iritis, photophobia, temporal arteritis, vitritis, Horner's syndrome, ocular myasthenia gravis, and Argyll-Robertson pupil. Often eye problems require a changing of prescription glasses more often than normal.
Heart-related problems are associated with Lyme disease and can include: mitral valve prolapse, irregular heart beat, myocarditis, pericarditis, enlarged heart, inflammation of muscle or membrane, shortness of breath, strokes, and chest pain.
Twitching of facial muscles, Bell's palsy, tingling of the nose, cheek or face are reported.
In addition, there may be chest pain or soreness, enlarged spleen, liver function disorders, tremors, extreme sensitivity to being touched or bumped, burning sensations, stiff neck, meningitis, and encephalitis.
Patients may experience continual or recurring infections (sinus, kidney and urinary tract are most common). Patients can suffer from a weakened immune system, the development of new allergies, recurring upper respiratory tract infections (causing, or worsening of pre-existing sinusitis, asthma, bronchitis, otitis, mastoiditis), and allergic or chemical hypersensitivity's.
Other noted problems include: T.M.J., difficulty swallowing or chewing, tooth grinding, arthritis (in small joints of fingers and larger, weight bearing joints),
Osgood-Schlatter's Syndrome (water on the knee), bone pain, gout-like pain in toe, muscle spasms to the point of dislocating joints and tearing muscle tissue, leg and hip
pain, "drawing up" of arms, "growing pains" in children, tendonitis, heel pain, carpal tunnel syndrome, and paravertebral lumbosacral muscle strain/spasm.
Some patients tend to suffer from a monthly "flare-up" of symptoms as the spirochetes
reproduce and/or die off.
*** Important: Having one or more of these symptoms does NOT necessarily indicate a
Lyme disease diagnosis. This is simply a list of symptoms that have been documented by
various physicians in areas where Lyme disease is running rampant, and results of years
of research studies on patients who are confirmed to be infected with the Lyme disease
spirochetes.***
Outdated information continues to circulate concerning Lyme disease and ticks. Please
take note of the following research findings and keep informed of new information:
1. Ticks may not be seen, but they are there. Ticks can live six months without feeding
and can withstand all but the most severe cold temperatures. They can hatch a brood of
over 2,000 babies that are so tiny they can barely be seen with the naked eye.
2. The American Dog Tick, Lonestar Tick, Deer Tick, Mosquitoes, Fleas, and other
species have all been found to be infected with the spirochetes that cause Lyme disease.
Other insects and modes of transmission by these insects are currently being researched.
At this time, Lyme disease is not considered to be sexually transmitted, only because
there has not been a documented case.
3. Ticks can transmit more that one disease at a time. Be aware of the early symptoms
of other tick-borne diseases, such as Rocky Mountain Spotted Fever, which can mimic
severe flu-like symptoms in its early stages, and can be deadly. Co-infections with
Babesia and Ehrilichiosis are becoming more prevalent in people diagnosed with Lyme
disease.
4. To remove a tick, DO NOT use gasoline, Vaseline, or try warming his butt with a
match. When you upset the tick he will spit fluids into your system. To remove the little
critter, grab him gently with tweezers, as close to the skin as possible, and pull him out
the same way he entered. Clean the site with rubbing alcohol to help prevent secondary
infections.
5. To dispose of the tick, DO NOT burn him and allow his body fluids to become
airborne. DO NOT flush him down the toilet. He can live under water for a long time,
and could crawl back out of the septic system into the grass. Put the critter in a half-full
bottle of rubbing alcohol with a tight lid. Be sure to mark the bottle clearly with a magic
marker stating there are ticks inside, and keep out of the reach of children.
6. Use of insect repellent on your skin isn't always enough. For those who need regular
protection, the use of the clothing treatment, Permanone, is very effective. It can be
purchased in a spray can (approx. $5.00) in your local sporting goods department.
Locally it is sold as REPEL PERMANONE. It is good for two weeks protection and
treated clothing can be washed and worn again within the two weeks. It is HIGHLY
recommended for treating shoes, boots, backpacks, and outdoor clothing. It has NO
scent. Ticks crawling across properly treated clothing will die. Be aware, it must ONLY
be applied to clothing, NOT to your skin. It can also be sprayed on screen, furniture, and
around buildings. Follow instructions on the label or check with the manufacturer.
7. A special note to hunters... Check yourselves, your clothing and your dogs before
going home. If you are lucky enough to bag a deer or other wildlife, wrap it in a treated
sheet as soon as possible, or properly hang the deer over an old sheet that has been
liberally treated with Permanone. As the deer cools, ticks will drop off. As they drop and fall onto the treated material, they will die instead of taking up residence in your yard, which could expose your family, yor pets, and others to danger. Deer meat or meat
from other wild animals should be cooked thoroughly before eating. When butchering or
handling raw meat, disposable gloves should be worn.
8. If a medical professional tells you that one, two, or even three weeks of anti-biotics
are all that are needed to cure the later stages of Lyme disease, RUN, don't walk, to
another facility. According to a variety of medical sources, the duration of treatment is
as important as the choice of anti-biotic. For example, Dr. Joseph Burrascano, Jr, MD,
from New York, a leading expert in the field who treats many Lyme infected individuals
states, "the longer one is infected before adequate treatment is begun, the longer the
treatment course will have to be." He also explains, "As anti-biotics kill organisms only
in their growth phase, therapy is designed to bracket at least one entire four-week
generation cycle. Hence, the minimum treatment course is six weeks: late disseminated
infections may have to be treated for many months to be controlled." Dr. Burrascano
reports, "to prevent relapses, treatment has to be continued until all signs of active
infection have cleared...average duration of successful therapy of advanced cases is four
months in males, and six months in hormonally active females."
9. Relying only on the blood or urine tests for Lyme disease is NOT recommended. The
current tests have been found to be inaccurate as a sure indicator that Lyme disease is
present. False negatives are common. Conns Current Therapy, 1997, has published
liberal guidelines for the diagnosis and treatment of Lyme disease. Doctors need to
review that information, then listen carefully to their patients and diagnose on the signs
and symptoms.
10. If you are bitten by a tick while on the job, insist that an accident report be filed
immediately! Each time and every time. Do not wait until you have symptoms. The companies providing Workman's Compensation Insurance have found many reasons why
they should not be responsible for treating Lyme disease, and not filing a report on time is a legal issue they may try to use to deny you benefits. The cost of medication often used for treating chronic Lyme disease can be up to $2,000.00 per day. If four months of treatment are ordered, the medication alone could run approximately $240,000.00. You do not need to be arguing with insurance companies, hiring attorneys, and delaying treatments until a court can make a decision because you didn't take a few minutes to file a report. Keep a copy of all of your medical records and receipts as they are
generated.