It is Lyme Time You Knew - all I can say is wow, gotta read it

[Guest guest]

IT IS LYME TIME YOU KNEW

11/98 (updated 2002)

It isn't the years and years that I have been so terribly sick (sixteen

years and still counting), 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 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.

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, Lupus, 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

Anorexia, 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.

The rash may be 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. 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, and Argyll-on 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 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. 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

found 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, the

longer the infection. Low 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. 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. 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.

ph 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. ph 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 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 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.

IP: Logged

Tincup

Frequent Contributor

Posts: 2234

From: The Moon

Registered: Jun 2004 posted 07 May 2002 14:56

Well.. I am tired... ha!

I forgot to say what this was...

I just finished revising the old " It Is Lyme Time You Knew " article for Lyme

Disease Awareness Month...

If you copy and paste it.. (and adjust a bit).. It will fit on 4 pages...

You can copy front and back and save 2 sheets of paper...

If you find it useful for anything.. even to line the bird cage.. great!

I am releasing any copyright for those who use it for educational purposes.

It was originally written to be published in newspapers (which it was)... so

it is set up that specific way... I have added to it and updated a number of

spots.. but I was surprized to find.. nearly all the info we knew FIVE years

ago is still true!

Anyhow.. got a new one I am still working on.. but thought this might help

someone?

You can carry some in your vehicle and pass them out as needed.. especially

to the ducks....