Lucy Barnes
11/98 (updated 2002, 2014, 2016, 2017)
It isn't the years and years that I have been so terribly sick (thirty and still counting) or the endless days spent suffering in hospital after hospital. It isn't the countless hours confined to bed, or the brain deteriorating as I helplessly watched. 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. And no, it isn't the improper diagnosis, endless treatments or the thousands of dollars spent on medical bills ($750,000 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 wicked, brutal and continual battles with insurance companies that beat you in the ground and leave you homeless and broken, 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 so many 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 inadequately. It is the fact that a lifetime of suffering could be avoided, and many lives could be saved if only "they" had cared, or if "they" had learned about Lyme disease.
Well, it is high time "they" all knew! It is time for those responsible for caring for sick patients to get updated information, listen and act aggressively to treat Lyme and tick borne diseases before more people spend a life time in misery and pain.
I am not a doctor. I have no medical degree or even an office on 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 being close to and raising a wonderful 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 on my own and I don't wish that fate on anyone. Had my parents and my family not stepped up to the plate and gone above and beyond to get the information required to help me, I wouldn't be alive today.
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.
~~
Did you know Lyme disease can mimic, show similar symptoms to, or be confused with...
Chronic fatigue syndrome, multiple sclerosis (MS), Alzheimer's, Parkinson's disease, Lupus, Lou Gehrigs (ALS) disease, Guillian-Barre syndrome, polymyositis, hepatitis, cardiac disorders, fibromyalgia, ringworm, Tullio phenomenon, encephalitis, ADD, ADHD, lupus, meningitis, depression, panic disorders, Bell’s Palsy, candidiasis, chronic mononucleosis, hypoglycemia, scleroderma, Epstein Barr virus, autoimmune diseases, Bannwarth’s syndrome, cancers, kidney disease, Raynauds syndrome, stress-related illness, sleep disorders, thyroid problems, vasculitis, TMJ, anorexia, agoraphobia, cerebrovascular disorders, arthritis, anorexia, connective tissue diseases, hearing disorders, Crohn’s disease, purpura, pseudotumor, Sjogrens syndrome, stroke, and respiratory insufficiency.
People who were diagnosed (misdiagnosed) with the above conditions were eventually determined to actually have Lyme disease. They were later treated with antibiotic therapy and many improved, however much damage was done while waiting for an accurate diagnosis and adequate treatment.
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 chronic 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 at the site of the bite, but it isn't noticed or it may not appear in all cases (less than 20% of adults and 10% of children have a rash). The rash may be basically circular with outward spreading, however, other presentation are more common. 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. (Rash photos here.)
Numbness, sleep disturbances, vertigo, hearing loss, feelings of being off-balance, unexplained weight gain or loss, and feeling "infected" are also signs and symptoms associated with Lyme disease.
Symptoms may develop that include: mild to severe panic attacks, anxiety, depression, mild to severe cognitive difficulties, mood swings, coma, rage, 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, abrupt changes in personality, short attention span, Tourette manifestations, OCD (obsessive compulsive disorder), raging emotions, and cranial nerve palsies.
Some patients explain symptoms as "feeling apart from everything", feeling unattached, robot-like, not doing their own thinking, feeling like looking through a veil, feeling withdrawn, or feeling like they are swaying side to side.
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, blurriness, and Argyll-Robertson pupil. Often eye problems require 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, and tingling of the nose, cheek or face are reported. In addition, there may be rib and 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). They can suffer from a weakened or damaged 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 severe enough to dislocate joints or pull apart 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" of symptoms as 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 is the result of years of research studies on patients who are confirmed to be infected with 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 as it becomes available.
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 or more that are so tiny they can barely be seen with the naked eye.
2. The American dog tick, the Lonestar tick, and deer tick are just a few of at least 9 different species of ticks that carry the Lyme disease spirochete. Lyme spirochetes have also been detected in at least 6 species of mosquitoes, 13 species of mites (including chiggers), 15 species of flies, 2 species of fleas and numerous wild and domestic mammals including rabbits, rodents, and birds.
Once transmitted to humans, the spirochete (over 300 DIFFERENT strains have been identified to date) causes damage to it’s host by spreading to various parts of the body. Insects and other modes of transmission are currently being researched. (Florida List of Tick & Vector Borne Diseases)
At this time, Lyme disease is not considered to be sexually transmitted, only because there has not been a “documented case”. It may be wise to take precautions. [Update 2013- another study indicates Lyme spirochetes are found in the bodily fluids of both men and women and the international team of scientists/researchers have concluded it is possible to spread Lyme disease sexually.] [Update 2014- A study by an international group of scientists and researchers have confirmed sexual transmission is possible. More Here ]
The spirochetes responsible for Lyme disease have been found in breast milk, the uterus, semen, urine, blood, the cervix, tears, brain, and other body fluids and tissues.
3. Ticks and various insects can transmit more that one disease causing organism at a time (up to 91 different disease causing organisms have been noted in scientific literature).
Please be aware of the early symptoms of other tick-borne diseases, such as Rocky Mountain Spotted Fever, Ehrlichiosis, Anaplasmosis and other spotted fevers that can mimic severe flu-like symptoms in the early stages and can be deadly if not treated immediately.
Keep in mind, simply handling a tick, or a tick crawling across your skin (depositing its excretions) can transmit RMSF.
Tick borne co-infections, including several strains of spotted fever, Babesia, Bartonella and Ehrilichiosis are found in people diagnosed with Lyme disease. They are known to cause chronic illness and can be deadly if not aggressively and appropriately treated. Treatment for some tick borne diseases is not always the same as for Lyme disease. Physicians must suspect and test for co-infections in patients who do not improve with Lyme treatment.
Often, on tests, the lower the titer reading the longer the infection has been active. Low numerical readings on lab tests do not indicate a lesser infection. Lab test information here.
Additionally, symptoms of tick borne co-infections do not always present as “typical” for that particular disease when found in coinfected Lyme patients.
4. To remove a tick from your body, DO NOT use gasoline, Vaseline, or try warming his butt with a match. When you upset the tick he can spit infectious fluids into your skin and blood stream.
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 bite site with rubbing alcohol to help prevent secondary infections.
It is absolutely NOT true that a tick must be attached for 12, 24, 36, 48 or more hours before someone can be infected. Infections can be transmitted within a few minutes to a few hours after exposure. Proper removal of an attached tick is essential. Transmission times here. Proper removal of ticks here.
5. To dispose of the tick, DO NOT burn it, which allows its body fluids to become airborne. DO NOT flush the tick down the toilet. A tick can live in water for an undetermined amount of time and may crawl back out of the septic system lines back into the grass. Put the tick 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 it out of the reach of children.
6. Use of insect repellents on your skin isn't always enough. For those who need regular protection, the use of clothing treatment (Permanone) is very effective. It can be purchased in a spray can in your local sporting goods department or purchased online.
The clothing treatment is effective for two weeks (or longer) and treated clothing can be washed and worn again within that time with no reapplication needed. Permanone is HIGHLY recommended for treating shoes, boots, backpacks, and outdoor clothing. It has NO scent and can be used by hunters. Ticks, chiggers and insects crawling across properly treated clothing will die, not just be "repelled".
Be aware, Permanone can ONLY be applied to clothing, NOT to your skin. It can also be sprayed on screens, furniture, and around buildings. Follow instructions on the label or check with the manufacturer for additional uses.
For treating your yard or other outdoor areas, a product called SEVIN (concentrated liquid or dust) can be applied. Follow the directions. This product seems to have the least odor, is reasonably priced and is recommended for killing ticks and disease carrying insects. Prevention Information Here. List of Prevention Products
7. 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 sheet pre-treated with Permanone 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 onto the treated material and will die instead of taking up residence in your yard. This will help prevent your family, pets and others from being exposed to infected ticks. Deer meat (venison) 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 antibiotics are all that are needed to completely cure Lyme disease, RUN don't walk, to another facility. According to an overwhelming number of medical research papers and experienced sources, the duration of treatment is as important as the choice of antibiotic. Over 2/3 of patients treated with the IDSA/CDC standard treatment protocol fail to recover.
Dr. Joseph Burrascano, Jr., MD, from New York, a leading expert in the field who treated thousands of Lyme infected individuals, states, "the longer one is infected before adequate treatment is begun, the longer the treatment course will have to be." This has been found true in clinical practices world wide and confirmed by scientific studies.
Dr. Burrascano also explains, "As antibiotics 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." See Treatment Guidelines Here.
9. Relying ONLY on blood or urine tests for the diagnosis of Lyme disease is NOT recommended. The current tests recommend by the IDSA/CDC have been found to be inaccurate as a sure indicator that Lyme disease is present. False negatives are common and the standard ELISA tests miss MANY cases of Lyme disease. A recent study indicates 74.9% of cases are missedusing the current recommend testing procedures.
Conns Current Therapy, 1997, 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 clinically by the signs and symptoms presenting. UPDATE- Please see Dr. Joseph Burrascano’s “Advanced Topic’s in Lyme Disease” which can be found at the following Internet site- click here.
10. If you are bitten by a tick while on the job, insist that an accident report be filed immediately and seek treatment! Each time and every time! Do not wait until you have symptoms! Insurance companies providing Workman's Compensation insurance have found many reasons why they should not be responsible for treating workers who contract Lyme disease, and not filing a report on time is a legal issue they have used to deny benefits.
The cost of medication used for treating chronic Lyme disease can be $1,000.00- $2,000 per day (or more). 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.
11. Keep a copy of all of your medical records and receipts as they are generated. It has been found that many practitioners have altered records, misread test results and "lost" important records in an effort to protect themselves from scrutiny and malpractice suits.
12. Be sure to find a LLMD (Lyme Literate MD) to properly diagnose and treat you. Please help promote Lyme disease awareness in your community. You may save someone from experiencing a life time of struggle by helping them recognize the disease in the earliest stages. Lyme patients are often the best educators.
Originally published in the Queen Anne County (MD) Record Observer (11/98).