Hi Do you guys know any article that is easy to read for people who don't believe that a person can have lyme or still be sick after being "treated" for lyme?
People don't come right out and say it to your face but sometimes if they are not literate about lyme it is very very hard to understand because of all the controversy and misinformation about what this thing can do...
I am doing lots better but still deal with this every day.I don't tell anyone anymore because its too painful to risk the disbelief and ignorance...
my 15 year old niece and her friend say little things that teenagers say because this is confusing to them...I wish they never knew...
I wish my extended family never knew (I didn't tell them, my mother did and boy what that did for feeling even less supported)
Anyway at least I've got 4-10 people on this earth in person that I know believe me...
That's a start... I guess I need to question why I need their belief and whether I really need them to believe it or not...This makes a person have to learn to not take it personally and validate themselves....its a tough illness moreso because of the isolation and the disbelief that diseases like cancer do not come with.
Posted by valymemom (Member # 7076) on :
Here's one I have given to people.
NEW.. UPDATED MAY 2002 VERSION:
IT IS LYME TIME YOU KNEW by Lucy Barnes
11/98 (updated 2002)
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 ($250,000.00 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 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.
Did you know Lyme disease can mimic, show similar symptoms to, or be confused with... Chronic Fatigue Syndrome, Multiple Sclerosis, Alzheimer's, Parkinson's Disease, Lupus, Lou Gehrigs (ALS) Disease, Guillian-Barre Syndrome, Polymyositis, Hepatitis, Cardiac Disorders, Fibromyalgia, Ringworm, Tullio Phenomenon, Encephalitis, ADD, ADHD, Meningitis, Depression, Panic Disorders, Bell's Palsy, Candidiasis, Chronic Mononucleosis, Hypoglycemia, Scleroderma, Epstein Barr Virus, Heart Disorders, Autoimmune Diseases, Bannwarth's Syndrome, Cancers, Kidney Disease, Raynauds Syndrome, Stress-related Illness, Sleep Disorders, Thyroid problems, Vasculitis, TMJ, Anorexia, Agoraphobia, Cerebrovascular Disorders, Arthritis, Connective Tissue Diseases, Hearing Disorders, Crohn's Disease, Purpura, Pseudotumor, Sjogrens Syndrome, Stroke, and Respiratory Insufficiency. Some people who were 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 it may not appear in all cases (reports state approximately 50% may not get the rash). The rash may be basically circular with outward spreading, however, many 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. It is often confused with ring worm.
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. 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, jaw, skin, pineal gland, brain, 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 toes, 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. This is called an intensification reaction or a Herxheimer and can be confused with an allergic reaction to medication.
*** 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 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 that are so tiny they can barely be seen with the naked eye.
2. The American Dog Tick, the Lonestar Tick, and the Deer Tick, are just a few of at least 9 different species of ticks that carry the Lyme Disease spirochete. It is also found in at least 6 species of mosquitoes, 13 species of mites, 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. Other insects and modes of transmission 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''. It may be wise to take precautions until the studies are completed. The spirochetes that cause 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 other insects can transmit more that one disease at a time (up to 20 different diseases have been noted in scientific literature). 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. Keep in mind, handling a tick, or a tick crawling across your skin can transmit RMSF. Co-infections with several strains of Babesia, Bartonella (Quintana and Henselae), and Ehrilichiosis are being discovered in people diagnosed with Lyme disease and they can be deadly and/or become chronic infections. Treatment for these diseases is not always the same as for Lyme. Suspect and test for co-infections for those who do not improve on regular treatment. Often, the lower the titer readings for these diseases, the longer the infection. Low or borderline readings do not indicate a lesser infection. The symptoms of the co-infections do not always present as ``typical'' for that particular disease when found in 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 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. It is NOT true that a tick must be attached for a long length of time before someone can be infected. Infection can occur within a few hours. Proper removal is essential.
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. The tick can live under water for a long time, and may 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 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 the clothing treatment, Permanone, is very effective. It can be purchased in a spray can (approx. $5.00) in your local sporting goods department store. Locally it is sold as REPEL PERMANONE. It is good for two weeks of 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 and therefore good to use by hunters. Ticks, chiggers, and other insects 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 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 carefully. This product seems to have the least odor and is recommended for killing ticks and other insects.
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, your 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 antibiotics are all that are needed to cure the later stages of 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. For example, Dr. Joseph Burrascano, Jr., MD, from New York, a leading expert in the field who treats 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." He 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."
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 and the standard ELISA tests that are normally performed miss MANY cases of Lyme Disease. See www.igenex.com for reliable tests. 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 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: http://library.lymenet.org/domino/file.nsf
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! The companies providing 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 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.
11. Be aware that neurotoxins produced by spirochetes may be causing symptoms in people who have Lyme and other illnesses. Ask your doctor to perform the VCS eye test and if the results are positive for neurotoxins, seek treatment by a knowledgeable doctor. More information concerning neurotoxins can be found in the book called, Desperation Medicine, by Dr. Ritchie Shoemaker. www.chronicneurotoxins.com
12. Be sure to find a LLMD (Lyme Literate MD) to properly diagnose and treat you. Only the best will do. Please help promote Lyme Disease Awareness. You may save someone from experiencing a life time of struggle by recognizing the disease in the earliest stages.
[This message has been edited by Tincup (edited 22 May 2002).]
IP: Logged Tincup Frequent Contributor
Posted by Lymetoo (Member # 743) on :
Yes, our own Lucy Barnes!! Good one, valymemom!
Posted by bettyg (Member # 6147) on :
WOW, Lucy Barnes aka Tincup wrote an exceptional, touching article for them/us lymies!
Thanks for posting this. I'll copy it so TREEPATROL CAN ADD TO HIS NEWBIES LINKS. If this doesn't explain it to us the patients and families, NOTHING will!
Posted by hopeful123 (Member # 3244) on :
Lucy Barnes knows the score!!!
Posted by treepatrol (Member # 4117) on :
In Newbie Links.
When you get here Scoll to top thats where story is.
Posted by vitch (Member # 8094) on :
www.ilads.org and go to the position papers. They're one or two pages long.
Posted by MizMo (Member # 8389) on :