This is topic Know one good article for people who think your lyme is B.S. in forum General Support at LymeNet Flash.

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Posted by pippy (Member # 6005) on :
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.


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
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

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

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

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

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

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
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

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
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

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

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
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
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

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 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:

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.

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

[This message has been edited by Tincup (edited 22 May

IP: Logged
Frequent Contributor
Posted by Lymetoo (Member # 743) on :
Yes, our own Lucy Barnes!! [Smile] 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! [Cool]
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 : and go to the position papers. They're one or two pages long.
Posted by MizMo (Member # 8389) on :
I like Dr. Taylor's article:

I'll have to read the one by Lucy.

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