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| The
Massachusetts
CFIDS/FM Association
"UPDATE" |
Mass. CFIDS/FM Association's
Quarterly Publication
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Fall 2002 Issue
(44 pages)
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FEATURES
DEPARTMENTS
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FEATURES |
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Dr.
Sam Donta: The Interface of Lyme Disease with CFIDS and FM
By Bonnie Gorman
RN
Dr Sam Donta presented
a comprehensive, compassionate, cutting-edge lecture to Mass.
CFIDS/FM Association members on November 3rd. His topic was "The
Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment
Issues." Dr. Donta is a nationally recognized expert
on Lyme disease. He is the Director of the Lyme Disease Unit at
Boston Medical Center and a Professor of Medicine at BU Medical
School. He is a bacteriologist and an infectious disease specialist,
who views CFS and FM from that vantage point. He is also a consultant
to the National Institutes of Health (NIH), and presented at NIH's
scientific meetings on CFS research.
What does Lyme
disease have to do with CFS and FM you might be asking? Some
people believe that Lyme disease may be one of the causative factors
in both CFS and FM. Others believe that some CFS and FM patients
are really misdiagnosed chronic Lyme disease patients and vice
versa. Some believe that there is no such thing as chronic Lyme
disease, instead these patients actually have CFS or FM. We asked
Dr. Donta to help sort all this out.
Parallel
Symptom Patterns
Dr. Donta presented
the symptom lists for chronic Lyme disease, chronic fatigue syndrome
(CFS), fibromyalgia (FM), and Gulf War Illness (GWI). He pointed
out the similarities between them, and found there were few differences.
He has treated hundreds of patients with these illnesses. He found
that CFS and GWI have identical symptoms, and FM is only distinguished
by a positive tender point exam, that is often positive in CFS
and GWI as well. Clinically it is almost impossible to distinguish
or differentiate these illnesses.
He has concluded that
chronic Lyme disease is remarkably similar to CFS, FM, and GWI.
These multi-symptom disorders have similar symptom patterns consisting
of fatigue and neurocognitive dysfunction, along with numerous
other symptoms that probably relate to altered neurological function.
Musculoskeletal symptoms may be more frequent in FM and in some
patients with chronic Lyme than in CFS, but the definition of
CFS and GWI also includes muscle aches (myalgias) and joint aches
(arthralgias).
Lyme Disease
Symptoms
Flu-like illness, fever,
malaise, fatigue, headache, muscle aches (myalgia), and joint
aches (arthralgia), intermittent swelling and pain of one or a
few joints, "bull's-eye" rash, early neurologic manifestations
include cognitive disorders, sleep disturbance, pain, paresthesias
(including numbness, tingling, crawling and itching sensations),
as well as cognitive difficulties and mood changes.
The only symptom difference
in Lyme disease is the expanding circular rash with a clearing
area and center resembling a "bull's eye." He pointed
out that Lyme has multiple types of rashes and half of the rashes
are not typical, they may not even include the "bull's eye"
rash. They can appear from two day after the bite, then go on
for a week or so. Patients who are infected may not develop or
see the rash, and may not develop any future symptoms. In studies,
only one third of the patients were actually aware of their tick
bites.
30-50% of acute Lyme
disease patients went on to develop chronic Lyme disease. Additionally,
some previously asymptomatic patients may reactivate their infection
following various stressors such as trauma, surgery, pregnancy,
coexisting illness, antibiotics treatment, or severe psychological
stress. The Lyme vaccine can also reactivate their infection.
Similar triggers such as trauma, surgery etc. are known to precipitate
CFS, FM and GWI as well. This is not a new phenomenon with infectious
diseases. We know infectious diseases (i.e. TB) will reactivate
after illnesses or surgery-- any stressor.
Dr. Donta reported
on the effects of gender on host susceptibility in Lyme disease,
CFS, FM and other multi-symptom diseases. In all these disorders,
women appear to be more affected than men, usually at about 2:1
ratios. He noted that neural cells contain estrogen and progesterone
receptors, and that herpes viruses can utilize estrogen receptors
to gain access to the reservoir in the cell nucleus. Treatment
of chronic Lyme disease also seems to be gender-dependent to some
degree, with men generally having more speedy and complete recoveries
compared to women. He concluded that gender relationships are
known for a number of infectious diseases, so it would not be
surprising that such a relationship exists for chronic Lyme disease,
CFS, FM and other multi-symptom disorders.
Etiology
Lyme Disease:
A distinct difference between Lyme disease, CFS and FM is that
the origin of Lyme is clear. Lyme disease is caused by spirochetal
bacteria transmitted by the bite of an infected deer tick. This
bacteria is the Borrelia burgdorferi bacteria. It was
identified in the late 1900s in Europe. The US was late to recognize
what Europe had described. Lyme disease was not formally identified
by the CDC until 1977 when arthritis was observed in a cluster
of children in and around Lyme, CT. Since that time Lyme disease
has been identified in many states. The CDC reports that it causes
more than 16,000 infections per year in the US. Some researchers
feel that the prevalence is higher than that.
CFS and FM: Dr.
Donta feels that Lyme disease is an important cause of CFS and
FM. In addition to Lyme, there are a number of other possible
causes. The evidence is still circumstantial though. Epstein-Barr
virus (EBV), the major cause of infectious mononucleosis, continues
to be debated as a cause of CFS. It is uncertain whether EBV can
cause symptoms other than fatigue, such as myalgias and arthralgias
that are not seen during acute or reactivated EBV infection in
patients who are being immunosuppressed, but it remains possible
that EBV could cause one type of chronic fatigue disorder. There
are also other herpes viruses i.e. HHV6 that are being evaluated
as potential culprits.
Dr. Donta reported
that recently recognized species of Mycoplasma (Mycoplasma
fermentans, Mycoplasma genitalium) have been implicated in
CFS, FM and GWI. These same bacteria have also been implicated
as causative agents of rheumatoid arthritis, based on PCR-DNA
evidence in patients with these disorders in which 50 percent
are found to have the DNA of the Mycoplasma in circulating white
blood cells, compared to 5-10 percent of a normal population.
Whether the presence of this DNA represents past exposure or ongoing
infection remains to be resolved. No long-term studies have yet
been performed in patients with CFS and FM to determine whether
the finding of Mycoplasma DNA persists over months or years or
whether such patients have any evidence of other infection such
as Lyme disease or infection with Chlamydia species.
Central
Nervous System Involvement
Dr. Donta reported
that in Lyme disease, the nervous system seems to be the primary
target for the bacteria causing the disease. Patients with Lyme
disease express many neurologic symptoms such as pain, paresthesias
including numbness, tingling, crawling and itching sensations,
as well as cognitive difficulties and mood changes. Even the joint
pains and occasional arthritis appear to be neuropathic in origin,
as anti-inflammatory agents such as ibuprofen and other nonsteroidal
anti-inflammatory drugs (NSAID) have little if any effect on the
pain. Experimental evidence from animal models also affirm the
localization of B. burgdorferi DNA to the nervous system.
Dr. Donta postulates that the disease mechanisms could involve
inflammatory responses, autoimmune responses or toxin-associated
disruption of neural function. Any inflammatory responses appear
to be weak, and there is no compelling evidence that Lyme disease
is a result of immunopathologic mechanisms.
Commenting on his research,
Dr. Donta speculated that if they are correct, and lyme bacteria
is a nerve toxin that interferes with the transmission of the
nerve impulse, then that is all you need to impede the normal
flow of information. There is a lot of cross-talk in the nervous
system. This toxin will decrease that cross-talk causing delayed
responses resulting in cognitive problems-- the brain fog so commonly
described in all these multi-symptom disorders.
Although the disease
pathways for other possible causes of CFS and FM have not been
defined, Dr. Donta postulates that the central nervous system
would appear to be a logical target for other pathogens or other
disease processes. These illnesses clearly affect the brain and
are bound to cause many neurological manifestations. Any changes
in immunologic function would not appear to be sufficient to explain
the various symptoms, and are likely to be secondary to other
disease processes.
He feels we have been
thinking too simplistically about finding whole organisms replicating
in chronic diseases. It is highly likely that there is no single
cause for these illnesses. It's more likely that there are multiple
causes-- different organisms causing the same final set of symptoms.
Researchers need a better algorithm to study these fatiguing illnesses.
We need to be more inclusive, rather than trying to separate the
illnesses. Sometimes in medicine, if an illness is too complex
to study, research interest dwindles. We have the technology to
do the research, but there hasn't been the will and the momentum
to get it done.
Clinical
Diagnosis
Dr. Donta reiterated
that the diagnosis of Lyme disease is primarily based on clinical
grounds, just as with CFS and FM. Once other disorders are ruled
out, the combination of symptoms over months is sufficient to
make a presumptive clinical diagnosis. The diagnosis of Lyme is
made easier if a typical rash is present during the early phase
of infection. After that, it is difficult to distinguish the flu-like
illness that can occur a few weeks later, or can recur over a
number of months.
Dr. Donta reported
that some patients develop severe headaches and an aseptic (infection
free) meningitis, which frequently is diagnosed instead as viral
meningitis. If a Bell's palsy occurs (drooping of one side of
the face), the possibility of Lyme disease is likely. If an unprovoked
arthritis occurs, causing swelling of a single joint, especially
the knee, but sometimes more than one joint, then the possibility
of Lyme disease should also be given high consideration.
He emphasized that
it is the chronic phase of the disease that causes most problems
for physicians and patients, because of the lack of objective
signs and the presence of so many symptoms that it causes some
doctors to attribute psychological reasons for the patients' symptoms.
Many patients then receive a diagnosis of CFS or FM, when they
may have underlying chronic Lyme disease as the cause of their
symptoms.
Diagnostic
Tests
Tests for Lyme disease,
like tests for other infectious diseases, are often confusing
and circumstantial, and their analysis and interpretation has
often been flawed. In infectious diseases you do a Western
blot test to see if you have a specific reaction. Western
blot separates out proteins antigens of an organism you are looking
for. It tells you if a person has been exposed. It is not
a direct measurement of the organism. It is a measurement
of whether the person has antibodies to it. Antibody tests are
useful in the early stages of illness as with other acute infectious
illnesses. Once the illness is in a chronic phase, antibody tests
are not useful.
Just as viruses change
from year to year, we know the Lyme bacteria mutates. There are
a number of organisms that can shift their surface protein in
a matter of hours and that is how they evade detection and patients
test negative. These organisms attach themselves to proteins and
conceal themselves-- creating a cloaking mechanism that defies
detection. This allows them to get where they want to go-- the
nervous system. Once they are inside a cell, the immune system
can't see them.
That said, Dr. Donta
explained that lab tests have been helpful is some patients with
Lyme disease, especially those with arthritis, in whom there are
stronger antibody responses than in those with the chronic, multi-symptom
form of Lyme. The criteria for the laboratory diagnosis has been
patterned after the arthritic form of the disease, and not the
chronic form; as a result, there are many physicians who are misinformed
about the test's lack of value in chronic Lyme disease. The Lyme
Western Blot is helpful when it shows reactions against specific
proteins of B. burgdorferi, but can be negative in 25-30
percent of patients who otherwise have chronic Lyme disease.
PCR-DNA tests
for Lyme in blood, urine and spinal fluid are rarely positive,
most likely because the bacteria and their DNA are not present
in those body fluids, but inside nerve cells. Additionally, PCR-DNA
studies are very easy to contaminate.
In chronic Lyme disease,
the MRI exam of the brain is positive in about
10-20 % of patients. It can show some white spots (unidentified
bright objects- UBO) in various areas, similar to those seen in
multiple sclerosis (MS), a neurologic disease of unknown cause
that has some overlapping symptoms with Lyme disease, CFS and
FM, such as the numbness and tingling or paresthesias. (There
are also positive MRI findings in CFS and FM patients as well.)
Dr. Donta reported
that the brain SPECT scan shows some changes
in blood flow to various parts of the brain, primarily the temporal
(cognitive processing) and frontal (mood) lobes in about 75 percent
of patients with chronic Lyme disease. Patients with CFS have
also been reported to have some brain SPECT scan changes, frequently
involving the occipital lobe. No comparative studies have been
made among patients with chronic Lyme disease, CFS and FM. The
mechanisms underlying these changes remain to be defined, but
may be due to a mild vasculitis (inflammation of blood vessels)
or to a signaling problem within the nerve network of the brain
in those specific areas. It is promising that these changes are
reversible in most patients treated with antibiotics that appear
to be effective in treating the chronic Lyme disease. These MRI
changes are often slow and may take a year to reverse themselves.
These are covert organisms
we are dealing with. We need more direct detection methods for
blood, spinal fluid and other body fluids. How do you detect organisms
in spinal nerve roots or brain? Right now we can't. Nobody is
going to biopsy patients. We need an illness registry so we can
do direct detection studies, particularly of the brain, after
death.
Treatment:
Persistence Pays Off
Dr. Donta reported
that there are lots of drugs that are active against the Lyme
bacteria in the test tube, but the big question is whether
the drug can get to the bacteria? Lyme bacteria lives in the cells
of the nervous system, perhaps other cells. Dr. Donta has experimented
with various intracellular-type antibiotics. He reviewed his journey
through various antibiotics. After listening to his patients he
decided that some antibiotics were better than others. He then
looked at clarithromycin (Biaxin) and azithromycin (Zithromax)
which he found had powerful activity against Lyme bacteria in
a test tube.
But the antibiotics,
by themselves, did not seem to do any good. He found that you
need to change the cellular pH (the degree of acidity or alkalinity),
making it more or less acidic, to maximize the effectiveness of
the antibiotic. This allows the antibiotic to work better i.e.
doxycycline seemed to work better when the pH was higher. Dr.
Donta has experimented with various agents to adjust pH i.e. amantadine
(used to treat flu) and plaquenil (used to treat malaria). He
just submitted proposals to NIH to study various agents to determine
which is most effective.
Dr. Donta emphasized
that the most important aspect of treatment is that it must be
long-term -- 12-18 months, sometimes 24-36 months. This
length is not unusual in the treatment of infectious diseases
i.e. TB. In the first few months of treatment patients can expect
an adverse reaction, symptoms will increase and you'll feel worse.
You need to be able to hang in through this period, and allow
3-6 months of a treatment trial to determine if it is working.
The earlier in the disease process that you start on treatment,
the more successful it is. The more chronic the condition the
less successful it is, and you'll need to treat over a longer
period of time. This treatment resulted in substantial improvement
and cures in 80-90% of patients with chronic Lyme disease. There
are 10-20% who do not respond-- generally those with a strongly
positive Lyme test.
Dr. Donta reported
that similar results have been found in some patients with CFS
and FM of unknown cause, supporting the hypothesis that some patients
with CFS and FM have an underlying infection responsive to those
antibiotics. Antibiotic trials in CFS and FM have been limited
to one month, a duration that is inadequate to properly evaluate
the potential of certain antibiotics to have a positive effect
on the disease. Additional studies, examining both potential etiologic
agents of CFS and FM as well as treatment trials should lead to
a better understanding of both the cause and treatment of patients
with CFS and FM.
Q&A
Q: If
the Lyme lab tests are inadequate and the symptoms are the same
as CFS and FM, why not just treat all CFS and FM patients with
the Lyme protocol?
A:
You want to be conservative with your medicines. I think we have
enough info now to tell CFS and FM patients to consider going
on a 3-6 month trial of antibiotics and see if you're better.
Consider all the other meds you are already taking that just treat
symptoms and not the cause of your illness. They all have side-effects
that can be hazardous. Is it worth it to you to consider a primary
treatment aimed at a cause? There will be resistance from some
MDs. They need to be educated. Your primary MD will need to consult
an LD specialist re the treatment protocol.
Q:
Do patients with Lyme disease also have bowel and bladder problems
like interstitial cystitis (IS) and irritable bowel syndrome (IBS)?
How are they affected by treatment?
A: Yes,
many patients with Lyme have IS and IBS. He was surprised how
much the bowel disorders affected treatment. Tetracycline generally
helps the IBS. Plaquenil can sometimes irritate the bowel.
Q: I
have received different results for the western blot Lyme test.
Why?
A: Lyme
test results are not reproducible from one lab to the next. You
will get different findings from different labs. The western blot
is not a great test for Lyme since the responses to Lyme bacteria
are already very small responses.
Q: I've
been sick for 15 years with CFS and my Lyme test was negative.
Is there any value in treating now?
A: If
the test was negative but you have the complex of symptoms and
there is no other obvious answer, why not give antibiotics a try.
Q: I
had the Lyme vaccine then got Lyme symptoms. Why?
A: Lyme
vaccine was pulled from the market because it was causing reactions
and reactivating a slow onset of Lyme disease.
Q: What
are the ocular problems in Lyme?
A: He
sees optic neuritis, similar to that seen in atypical MS patients.
Q: Is
there any Lyme connection to cutaneous lymphoma?
A: He
has looked closely for any cancer/ Lyme associations, but has
not seen many.
Q: Is
there a connection with thyroid problems?
A: Thyroid
problems are a very common co-existing condition with Lyme, as
they are with CFS.
Q: How
do I differentiate itching from allergic reactions?
A: The
same sensory nerve fiber pathways that carry pain carry itching,
numbness, tingling etc. Rash is common symptom. Rashes could be
caused by medications, especially if they are body-wide. Is it
an allergic reaction or hypersensitivity reaction? Get a complete
blood count (CBC) with differential. Eosinophils will be elevated
if allergic reaction. If not, then it's a hypersensitivity reaction.
Treatments are similar.
Q: How
do we get funding for research to advance these illnesses?
A: He
stressed how important it is to combine advocacy and research
efforts. Ultimately it will be a political solution. Get active
legislatively in DC. The CFS Coordinating Committee is a very
good forum. Lyme does not have anything like that. Groups need
to work together, not fight with each other. There should be a
coalition of all these groups. We also need to show insurance
companies the benefits of primary treatment to patients, as well
as to insurer's bottom line.
Back
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Coping
Corner: Against All Odds: PWC Laura Hillenbrand and Seabiscuit
by Sally Jacobs,
Boston Globe Staff
It is hard to write
a book. It is harder still when looking down at a piece of paper
makes you dizzy, when you are so persistently tired that just
taking a shower requires a three-hour rest, and when, sometimes,
the bookshelf across the room starts to ripple like an accordion.
Somehow, Laura Hillenbrand
did it, managing to overcome a legion of crippling symptoms in
order to write not just any book, but the stupendously successful
''Seabiscuit: An American Legend,'' which was on the bestseller
list for more than a year and is now being made into a movie.
Never mind that her disease, chronic fatigue syndrome, is one
that some doctors do not believe exists at all. Never mind that
she appears in pink-cheeked health, so much so that Pond's skin
cream recently featured her in an advertising spread in Vanity
Fair and Self magazines. Or that she is actively engaged as a
consultant on the film. The fact is that much of Hillenbrand's
life has been a saga of sickness, one now made worse by her immense
effort to write her book, and one that is almost as gripping as
that of the valiant 1930s racehorse who is the heart of her story.
Consider her troubles:
Since the day she turned in her final draft two years ago, Hillenbrand
says, she has been plagued by a recurrence of vertigo, spawned
by her illness, so intense that she is barely able to read or
write. She doubts she will ever write another book. Not only do
shelves ripple, but the couch bucks, the armoire lists, visitors
bob up and down, and sometimes the floor drops out of sight. Savaged
by exhaustion, she rarely leaves her trim yellow brick townhouse
and counts as a good day one when she can walk a whopping three
blocks. She cannot drive a car or fly in a plane. She does not
go to the movies because the light is too intense. She has been
out to dinner only once in five years, and even then she had to
be driven the one-block distance. Hillenbrand, in fact, says she
is far too tired even to marry her live-in boyfriend.
''If I were to get
married, I would really want to show up, you know?'' declares
Hillenbrand, 35. ''I don't want to do it if it's going to be this
really arduous deal, and I think right now it would be really
hard to do. The deal is that we are waiting until I get stronger.''
Her boyfriend, Borden
Flanagan, a political-science instructor at American University,
agrees, adding, ''Another problem with a wedding is all those
people coming from out of town. Laura doesn't know if she can
do anything one day to the next, so I think we'll wait.''
It has been 15 years
since Hillenbrand ate a piece of chicken at a hotel buffet and
got an apparent case of food poisoning that culminated in her
collapse and a diagnosis of CFS one year later. Since then she
and Flanagan, whom she met at Kenyon College six months before
she fell ill and has been with ever since, have endured the mercurial
course that is characteristic of the illness. There have been
periods of disabling fatigue that left her bedridden for months
at a time. There have been night sweats and fevers, spasms of
vertigo, and once a period of partial blindness. At times she
was unable to shower for such a long stretch that her hair ''looked
soaking wet.'' Some friends and family members, at least in the
early days of her illness, rolled their eyes in disbelief. One
doctor attributed her condition to puberty. Another told her,
''You've just got to get up and get going, honey.''
But there have also
been periods of relative wellness, periods during which Hillenbrand
began to write about the horses and the curve of the track that
have long been her passion. Perched in her bed, she pecked out
stories for magazines with names like Equus and Turf Flash. And
then, in 1996, as she was going through some racing documents,
Hillenbrand came across the name of Seabiscuit, the famous thoroughbred
who triumphed over astounding odds to become a racetrack legend
and an icon in Depression-era America. She knew the name well:
A dog-eared copy of the children's book ''Come On, Seabiscuit,''
which she bought from the Bethesda Elementary School fair at age
7, sits on her bookshelf. But this time, it was the three unlikely
men who helped transform Seabiscuit's career as much as the horse
himself who fascinated her. Hillenbrand, who grew up riding horses
on her family's Maryland farm, identified as much with Seabiscuit's
half-blind jockey, Red Pollard, as the horse.
''I feel like I am
Pollard,'' declared Hillenbrand. ''I can't write because I have
vertigo. He couldn't ride because he had no talent. Seabiscuit
saved him and gave him a reason to live. It's the same for me.
I thought, `I can tell this story.'''
A Runaway Bestseller
Five years later, the book was released to an avalanche of acclaim.
In the first week, it landed on the New York Times bestseller
list; it shot to first place in the second week and remained on
the list for more than a year. It has sold nearly 800,000 copies,
and the film, starring Jeff Bridges, Chris Cooper, and Tobey Maguire
as the jockey, has begun production and is expected to be released
in July 2003. Because of her illness, Hillenbrand has been unable
to go on tour or even make it to the studios of all the television
and radio stations that want to interview her. Instead, ''Good
Morning America,'' ''NBC Nightly News,'' and the like have lugged
their equipment up her concrete stoop and set up their lights
in her small, lemon-walled living room. Her ficus, she says, laughing,
has made so many TV appearances that it is ''getting its own publicist.''
On days that she does interviews, she rests in the morning and,
she says, ''I tell Borden not to talk to me.'' Sometimes when
she is being interviewed on the phone, she keeps her feet in the
tiny refrigerator next to her desk to keep a check on her ever-present
fever, to which she attributes her rosy glow. She is still sick,
but it is different now.
''I'm on the other
side of this illness, in a way, because I've had success,'' explains
Hillenbrand, dressed in a black blouse and short red-and-aqua
patterned skirt. ''No one could call me a malingerer now, and
I think that is part of the reason I wrote the book. I wanted
to achieve something in the world of healthy people, to demonstrate
I am not a malingerer. That I'm not lazy.''
Hillenbrand's success,
however, has hardly cleared the clouds that hover over CFS. Largely
dismissed as ''yuppie flu'' in the 1980s, CFS has come to be recognized
as a medical condition by the Centers For Disease Control and
Prevention, one identified not just by fatigue, but by a constellation
of symptoms such as muscle pain and headaches. It has neither
a known cause nor a cure and endures as something of a medical
mystery. Like many of its victims, Hillenbrand, a slender woman
with straight blonde hair, can appear to be in good health: She
withstood an interview of four hours and trotted up and down the
stairs repeatedly. Although symptoms sometimes ease over time,
cases that persist, such as Hillenbrand's, tend not to dissipate.
Dr. Fred Gill, Hillenbrand's
former doctor and now chief of the internal-medicine consult service
at the National Institutes of Health, says Hillenbrand's case
is ''remarkably severe'' and describes her limitations as ''on
the extreme side.'' Several of her symptoms, such as temporary
blindness and the sensation of pitching and rolling, are not typical.
But Gill and others say CFS symptoms vary widely. Hillenbrand
has tried a few of the medications recommended by the CDC, but
they have not worked well. Now she takes only diuretics to alleviate
facial swelling. She rarely sees a doctor, she says, because ''there's
nothing much he can do.''
Her real caretaker
is Flanagan. It is he who has bathed her brow during the worst
of it, who moved into her mother's Maryland home with her after
she first collapsed in 1987, who turned her in her bed when she
could not do so herself, and who now watches to make sure there
is not too much salt in her food or that reporters do not tire
her out. Although Hillenbrand's three siblings have been supportive,
only her brother lives nearby, and he does not see her often.
Her father, who is divorced from her mother, ''has nothing to
do with my illness,'' she says, and her mother declined to be
interviewed. Flanagan is the only one she allows to drive her,
she says, because ''he works the brakes so well. It doesn't affect
the vertigo.''
Flanagan, a wiry 37,
acknowledges that the years have been hard on him, too. In the
early '90s, when Hillenbrand was largely bedridden, Flanagan says
he felt consumed by her illness and floundered in his graduate
work; he still has not finished his dissertation. At some point,
the couple realized Hillenbrand would probably never be able to
carry a child. The future, he says, ''was empty. It seemed like
my life was going to be an unending spectacle of Laura's suffering.''
He thought of leaving more than once.
But Hillenbrand's success
has buoyed him as well. ''It's been so great to see her flourish
after all the years of being ground down, to see her come back,''
exclaims Flanagan. ''I sort of feel like a roadie for Aerosmith.''
Hillenbrand's symptoms
seemed to subside during the years she wrote the book, and as
publication approached, she debated with her editor whether to
discuss her condition in public. Since then, her frankness has
only enhanced her appeal and drawn a steady stream of reporters
to her side. And then, of course, there is the book itself, which
by almost any assessment is a triumph.
Anything is
Possible
''Seabiscuit'' is
a riveting story about a gimpy-legged horse who defied all the
odds to become one of the greatest racers in history, one so beloved
that his name was mentioned in more newspaper articles in 1938
-the year of his sensational triumph as Horse of the Year over
archrival War Admiral - than either Franklin Roosevelt's or Adolf
Hitler's. It is a masterpiece of reportage, chock-full of arresting
detail. Hillenbrand plays the drama of the backstretch like one
teethed, as she was, by her father's side at the dusty West Virginia
tracks. But what makes ''Seabiscuit'' astonishing is that the
only place Hillenbrand traveled for the book was the library.
She never interviewed a single character face to face or saw any
of the scores of places that she writes about. She did not visit
any of the tracks where Seabiscuit pounded out his fame, although
she had visited a few long before she became ill. She did not
touch a single horse.
Instead, she turned
the thermostat in her beige-walled office down to keep her fever
low. She stacked cereal boxes and bowls across the top of her
desk so she did not have to waste energy going downstairs for
food. She constructed an elaborate contraption to hold up reading
material so she did not have to look down. And then she got on
the phone. Over four years, she interviewed more than 150 people,
many of them grizzled jockeys and track veterans in their 90s.
She posted scores of notices on the Internet, searching for more.
She pored over old newspapers and track records, emptied eBay
and other web sites of track memorabilia. She hired a former jockey
to visit a racing library. She listened to crackling audiotapes
and watched scratchy newsreels. And in a way, as her editor sees
it, her condition may have helped the book.
''Laura doesn't have
kids and she doesn't go out, so for years this was her central
passion,'' says Jonathan Karp, executive editor at Random House,
which published ''Seabiscuit.'' ''Even though she has this illness,
in a way it may have given her a focus and impetus that allowed
her imagination to find some kind of deeper connection to Seabiscuit
that perhaps other writers might not have. She got obsessed.''
Karp and Hillenbrand's
agent, Tina Bennett, of Janklow & Nesbit Associates, say that
Hillenbrand's illness did not slow her progress at all, despite
several health setbacks, including a temporary loss of sight in
her lower left eye. It did alter the standard relationship among
writer, agent, and editor. Rather than Hillenbrand going to New
York to work on the book, Karp went to Washington, D.C. Bennett
did not actually meet Hillenbrand until one year after the book
was published and they had worked together for five years.
But the editing homestretch
- several grueling weeks and so many late nights - did Hillenbrand
in. The day after she turned in her manuscript in the fall of
2000, Hillenbrand collapsed. Or, as she puts it, ''the sky fell
again.'' The world began to pitch and hurl. The night sweats resumed
in force. The exhaustion crept through her bones. Now she is able
to read and write only a few paragraphs a day. She spends those
paragraphs like a miser: a few e-mails one day, a few sentences
in the article she is working on about her chronic fatigue. If
her recurrence is, as she says, ''the price I am paying for the
book,'' she feels it has been well worth it.
''The illness got me
used to accepting that I couldn't do or have very much. All possibility
disappeared from my life,'' says Hillenbrand. ''Now, with all
this love coming in and people believing in me, I can believe
in myself. So in a way, Seabiscuit is to me what he was to people
in the Depression. He is possibility.''
Sally Jacobs is
a Staff Writer for The Boston Globe. This was a lead story from
that newspaper on 10/24/2002. © Copyright 2002 Globe Newspaper
Co. Copyright permission granted.
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Comprehensive
Treatment of Fibromyalgia
by Robert Bennett
M.D., FRCP
Advice from
an FM Expert
Editor's Note:
We suggest you pass this article on to your treating physicians.
Much of Dr. Bennett's treatment protocol also applies to individuals
with CFIDS, as the two conditions closely parallel each other.
If you are reading
this you probably have a common syndrome of chronic musculoskeletal
pain called fibromyalgia (FM). This chronic pain state is caused
by abnormalities of sensory processing within the spinal cord
and brain. As such you will usually experience a bewildering array
of bodily and psychological problems that can seldom be “cured”.
However, armed with both patience and knowledge, many FM patients
can be helped to live with less pain and be more productive. In
my own evolving experience of dealing with this problem, I can
identify seven aspects of management that are of importance for
your doctor to successful manage your FM.
My Advice to
Doctors who care for FM Patients
- Realize that
FM patients are going to be a chronic challenge.
- Be non-judgmental
and prepared to be an advocate.
- Understand the
pathophysiological basis for symptoms.
- Analyze and treat
pain complaints in a systemic approach.
- Recognize and
treat psychological problems at an early stage.
- Recognize associated
syndromes of disordered sensory processing.
- Involve all FM
patients in a program of stretching and gentle aerobic exercise.
Treatment of
Pain
Pain is the primary
over-riding problem for most of you. Many of the problems you
experience are largely a secondary consequence of having chronic
pain. When pain is even partly relieved, FM patients experience
a significant improvement in psychological distress, cognitive
abilities, sleep and functional capacity. A total elimination
of pain is currently not possible in the majority of FM patients.
However, worthwhile improvements can nearly always be achieved
by a careful systematic analysis of the pain complaints.
As a generalization,
FM-related pain can be divided into general pain (i.e., the chronic
background pain experience) and focal pain (i.e., the intensification
of pain in a specific region – usually aggravated by movement).
The latter is probably a potent driving force in the generation
of central sensitization. Attempts to break the pain cycle, to
enable patients to be more functional are especially important.
In general, most FM
patients do not derive a great deal of benefit from non-steroidal
anti-inflammatory drugs (NSAID) preparations or acetaminophen,
although NSAIDs are very useful in the treatment of associated
joint pain problems such as osteoarthritis. Prednisone and other
steroids have been shown to be ineffective in the long-term treatment
of FM.
General Pain
The use of NSAIDs (e.g.,
ibuprofen, aspirin, etc.) is usually disappointing. It is unusual
for FM patients to experience more than a 20% relief of their
pain, but many consider this to be worthwhile. Narcotics (propoxyphene,
codeine, and oxycodone) often provide a worthwhile relief of pain.
In most patients, concerns about addiction, dependency and tolerance
are ill-founded. Ultram (Tramadol) and Ultracet (Tramadol + Tylenol),
are the most useful pain medications in many patients. They both
have the advantages of having a low abuse potential and are not
a prostaglandin inhibitor. Tramadol reduces the epileptogenic
threshold and it should not be used in patients with seizure disorders.
Currently, opiates
are the most effective medications for managing most chronic pain
states (Friedman OP 1990, Portenoy 1996). Their use is often condemned
out of ignorance regarding their propensity to cause addiction,
physical dependence and tolerance (Melzack 1990, Portenoy et al
1997, Wall 1997).
While physical dependence
(defined as a withdrawal syndrome on abrupt discontinuation) is
inevitable, this should not be equated with addiction (Portenoy
1996). Addiction is a dysfunctional state occurring as a result
of the unrestrained use of a drug for its mind-altering properties.
Manipulation of the medical system and the acquisition of narcotics
from non-medical sources are common accompaniments. Addiction
should not be confused with "pseudo-addiction". This
is a drug-seeking behavior generated by attempts to obtain appropriate
pain relief in the face of under-treatment of pain.
Opiates should never
be the first choice for pain relief in FM, but they should not
be withheld if less powerful analgesics have failed. In my experience
many FM patients want to try opioid medications, but then give
up on them due to unacceptable side effects, such as mental fog,
increased tiredness, dizziness, constipation and itching.
Local Pain
Although you are experiencing
widespread body pain -- a manifestation of central sensitization
-- you will also have multiple areas of tenderness in muscles
- so called "myofascial trigger points." The severity
of pain and the location of these "hot spots" typically
varies from month to month, and the judicious use of myofascial
trigger point injections and spray and stretch (see section on
focal pain) is worthwhile in selected patients. It is often worthwhile
for your physician to identify the most symptomatic points for
myofascial therapy. The steps involved in the injection of trigger
points are:
- Accurate identification
of the trigger point.
- Identification
and elimination of aggravating factors.
- The precise injection
of the myofascial trigger points with 1% procaine (a local
anesthetic).
- Passive stretching
of the involved muscle after the local anesthetic has taken
effect; this is often aided by spraying the overlying skin
with an ethyl chloride spray. In most FM patients, this myofascial
therapy needs to be repeated over a period of several weeks
and occasionally over several months.
Unresponsiveness is
usually due to failure to eliminate an aggravating factor, imprecise
injection of the trigger point, or failure to inject satellite
trigger points. Trigger points are usually injected with 3 to
5 ml of 1-% procaine. Please note that these are not “steroid
shots.”
Performing “myofascial
spray and stretch” often enhances the efficacy of trigger point
injections immediately after the injections. Spray and stretch
consists of an application of a vapocoolant spray, such as ethyl
chloride over the muscle with simultaneous passive stretching.
A fine stream of the spray is aimed toward the skin directly overlying
the muscle with the active trigger point. A few sweeps of the
spray are passed over the trigger point and the zone of reference.
This is followed by a progressively increasing passive stretch
of the muscle.
Evaluation by an occupational
and physical therapist often provides worthwhile advice on improved
ergonomics, biomechanical imbalance and the formulation of a regular
stretching program. Hands-on physical therapy treatment with heat
modalities is reserved for major flares of pain, as there is no
evidence that long-term therapy alters the course of the disorder.
The same comments can be made for acupuncture, TENS units and
various massage techniques.
Treatment of
Sleep Disorders
Non-restorative sleep
is a problem for most of you and contributes to your feelings
of fatigue and seems to intensify their experience of pain. Effective
management involves (1) ensuring an adherence to the basic rules
of sleep hygiene, (2) regular low grade exercise, (3) adequate
treatment of associated psychological problems (depression, anxiety
etc.) and (4) the prescription of low dose tricyclic antidepressants
or TCAs (amitryptiline, trazadone, doxepin, imipramine etc.).
Some FM patients cannot
tolerate TCAs due to unacceptable levels of daytime drowsiness
or weight gain. In these patients, benzodiazepine-like medications
such as Ambien (zolpidem) are usually very useful. Some FM patients
suffer from a primary sleep disorder, which requires specialized
management. About 25% of male and 15% of female FM patients have
sleep apnea. Unless specific questions about this possibility
are asked, sleep apnea will often be missed. Patients with sleep
apnea usually require treatment with positive airway pressure
(CPAP) or surgery. By far the most common sleep disorder in FM
patients is restless leg syndrome. This can be effectively treated
with L-Dopa/ carbidopa (Sinemet 10/100 mg at suppertime) or clonazepam
(Klonopin 0.5 or 1.0 mg at bedtime).
Exercise for
FM
FM patients cannot
afford not to exercise as de-conditioned muscles are more prone
to microtrauma and inactivity begets dysfunctional behavioral
problems. However, musculoskeletal pain and severe fatigue are
powerful conditioners for inactivity. All FM patients need to
have a home program with muscle stretching and gentle strengthening,
and aerobic conditioning.
There are several points
that need to be stressed about exercise in FM patients: (1) Exercise
is health training, not sport’s training; (2) Exercise should
be non-impact loading; (3) Aerobic exercise should be done for
30 minutes each day. This may be broken down into three 10-minute
periods or other combinations, such as two 15 minute periods,
to give a cumulative total of 30 minutes. This should be the aim
-- it may take 6-12 months to achieve this level. (4) Strength
training should emphasize on concentric work and avoid eccentric
muscle contractions. (5) Regular exercise needs to become part
of the usual lifestyle; it is not merely a 3-6 month program to
restore you to health. Suitable aerobic exercise includes: regular
walking, the use of a stationery exercycle or Nordic track (initially
not using the arm component). Patients who are very de-conditioned
or incapacitated should be started with water therapy using a
buoyancy belt (Aqua-jogger). [We highly recommend ongoing pool
exercise programs for both FM and CFIDS patients to reduce pain
and to safely increase conditioning.--Ed]
Recognition
of Secondary Distress
As you suffer from
chronic pain there is a distinct possibility that you may develop
secondary psychological disturbances, such as depression, anger,
fear, withdrawal and anxiety. Sometimes these secondary reactions
become the "major problem" for some patients. The prompt
diagnosis and treatment of these secondary features is essential
to effective overall management of FM patients. Some FM patients
develop a reduced functional ability and have difficulty being
competitively employed. In such cases your doctor will hopefully
act as an advocate in sanctioning a reduced or modified load at
work and at home.
Unless you have a severe
psychiatric illness (e.g., major depressive illness or a psychosis),
referral to psychiatrists is usually non-productive. Psychological
counseling, particularly the use of techniques such as cognitive
restructuring and biofeedback, may benefit some patients who are
having difficulties coping with the realities of living with their
pain and associated problems.
Fibromyalgia
Associated Syndromes
It is not unusual for
FM patients to have an array of bodily complaints other than musculoskeletal
pain. It is now thought that these symptoms are a result of the
abnormal sensory processing as described in the previous section.
Recognition and treatment of these associated problems are important
in the overall management of your FM.
- Chronic fatigue
- Restless Leg Syndrome
- Irritable Bowel
Syndrome
- Irritable bladder
syndrome
- Cognitive dysfunction
- Cold intolerance
- Multiple Sensitivities
- Dizziness
- Neurally Mediated
Hypotension
- Non-restorative
sleep (above)
1. Chronic
fatigue: The common treatable causes of chronic fatigue
in FM patients are: (1) inappropriate dosing of medications (TCAs,
drugs with antihistamine actions, benzodiazepines etc.); (2) depression;
(3) aerobic deconditioning; (4) a primary sleep disorder (e.g.
sleep apnea); (5) non-restorative sleep (see above); and (6) neurally
mediated hypotension. A new drug called Provigil is of some help
when used intermittently for management of fatigue.
2. Restless
leg syndrome: This strictly refers to daytime (usually
maximal in the evening) symptoms of (1) unusual sensations in
the lower limbs (but can occur in arms or even scalp) that are
often described as paresthesia (numbness, tingling, itching, muscle
crawling); and (2) a restlessness, in that stretching or walking
eases the sensory symptoms. This daytime symptomatology is nearly
always accompanied by a sleep disorder -- now referred to as periodic
limb movement disorder (formerly nocturnal myoclonus). Treatment
is simple and very effective – DOPA / Levodopa (Sinemet) in an
early evening dose of 10/100 (a minority require a higher dose
or use of the long acting preparations).
3. Irritable
bowel syndrome: This common syndrome of GI distress that
occurs in about 20% of the general population is found in about
60% of FM patients. The symptoms are those of abdominal pain,
distension with an altered bowel habit (constipation, diarrhea
or an alternating disturbance). Typically the abdominal discomfort
is improved by bowel evacuation. Due to abnormal sensory processing
these symptoms may be quite distressing to FM patients. Treatment
involves (1) elimination of foods that aggravate symptoms; (2)
minimizing psychological distress; (3) adhering to basic rules
for maintaining a regular bowel habit; (4) prescribing medications
for specific symptoms; constipation (stool softener, fiber supplementation
and gentle laxatives such as bisacodyl), diarrhea (loperamide
or diphenoxylate) and antispasmodics (dicyclomine or anticholinergic
/ sedative preparations such as Donnatal).
4. Irritable
bladder syndrome: This is found in 40-60% of FM patients.
The initial incorrect diagnoses are usually recurrent urinary
tract infections, interstitial cystitis or a gynecological condition.
Once these possibilities have been ruled out a diagnosis of irritable
bladder syndrome (also called female urethal syndrome) should
be considered. The typical symptoms are those of suprapubic discomfort
with an urgency to void, often accompanied by frequency and dysuria.
In a sub-population of FM patients this is related to a myofascial
trigger point in the pubic insertion of the rectus abdominus muscles
and may be helped by a procaine myofascial trigger point injection.
Treatment: involves (1) increasing intake of water; (2) avoiding
bladder irritants such as fruit juices (especially cranberry);
(3) pelvic floor exercises (e.g. Kagel exercises); and (4) the
prescription of antispasmodic medications (e.g. oxybutinin, flavoxate,
hyoscamine).
5. Cognitive
dysfunction: This is a common problem for many FM patients.
It adversely affects the ability to be competitively employed
and may cause concern as to an early dementing type of neurodegenerative
disease. In practice the latter concern has never been a problem
and patients can be reassured. The cause of poor memory and problems
with concentration is, in most patients, related to the distracting
effects of chronic pain and mental fatigue. Thus the effective
treatment of cognitive dysfunction in FM is dependent on the successful
management of the other symptoms.
6. Cold intolerance:
About 30% of FM patients complain of cold intolerance.
In most cases this amounts to needing warmer clothing or turning
up the heat in their homes. Some patients develop a true primary
Raynaud’s phenomenon (which may mislead an unknowing physician
to consider diagnoses such as Lupus (SLE) or scleroderma). Many
FM patients have cold hands and feet, and some have cutis marmorata
(a lace like pattern of purple discoloration of their extremities
on cold exposure). Treatment involves: (1) keeping warm; (2) low-grade
aerobic exercise (which improves peripheral circulation); (3)
treatment of neurally-mediated hypotension; and (4) the prescription
of vasodilators such as the calcium channel blockers (but these
may aggravate the problem in-patients with hypotension).
7. Multiple
sensitivities: One result of disordered sensory processing
is that many sensations are amplified in FM patients. In general
FM patients are less tolerant of adverse weather, loud noises,
bright lights and other sensory overloads. Treatment involves
being aware that this is an FM-related problem and employing avoidance
tactics.
8. Dizziness:
This is a common complaint of FM patients. Before this
symptom is attributable to FM a thorough evaluation for other
neurological causes should be pursued (e.g. postural vertigo,
vestibular disorders, 8th nerve tumors, demyelinating disorders,
brain stem ischemia and cervical myelopathy). In many cases no
obvious cause is found, despite sophisticated testing. Treatable
causes related to FM include: (1) proprioceptive (awareness of
posture, movement, changes in equilibrium) dysfunction secondary
to muscle deconditioning; (2) proprioceptive dysfunction secondary
to myofascial trigger points in the sterno-cleido-mastoids and
other neck muscles; (3) neurally mediated hypotension (see below);
and (4) medication side effects. Treatment is dependent on making
an accurate diagnosis. In patients in whom no obvious cause is
found a trial of physical therapy, concentrating on proprioceptive
awareness may prove worthwhile relief.
9. Neurally
mediated hypotension: Patients with this problem usually
have a low blood pressure that does not go up normally on standing
or on exercise. Although such patients often have a low ambient
BP with postural changes, these findings are not a prerequisite
for diagnosis. A tilt table test (sometimes with the infusion
of isproterenol) is the most reliable way to confirm this diagnosis.
Treatment involves: (1) education as to the triggering factors
and their avoidance; (2) increasing plasma volume (increased salt
intake, prescription of florinef); (3) avoidance of drugs that
aggravate hypotension (e.g. TCA’s, anti-hypertensives); (4) prevent
the involuntary response (prescribe beta-adrenergic antagonists
e.g. propranolol (inderal) or metoprolol (lopressor) or disopyramide
(norpace), but these agents are only used as a last resort because
they reduce exercise tolerance); and (5) minimize the efferent
limb of the involuntary response (prescribe alpha-adrenergic agonists
e.g. midodrine (proamatine) or anti-cholinergic agents.
See the companion
article by Dr. Bennett on his Report on the 10th World Pain Conference
in this issue. Dr. Bennett is an internationally known FM specialist,
Professor of Medicine at Oregon Health Sciences University (OHSU),
and Chairman of Arthritis and Rheumatic Diseases Division. Permission
was granted to publish this article from the Oregon Fibromyalgia
Foundation's website: www.myalgia.com.
© 2002 Robert Bennett M.D., FRCP.
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Top
17 Ways to Cut Your Prescription Drug Costs
by The Cost
Containment Research Institute
1. You May
Qualify for a Free Drug program.
There are over 1,400
drugs that are made by 100 manufacturers who have free drug
programs. Most major drug companies provide free medications,
but rarely, if ever publicize their programs. An estimated two
billion dollars of free medication is given away annually.
A complete list of drugs and manufacturers' programs is available.
You can receive a copy by sending $5 to cover the cost of printing,
postage and handling to: Institute Fulfillment Center, Booklet
#: PD-55 P.O. Box 210, Dallas, PA 18612-0210. Or visit: www.institutedc.org
2. Get a Pharmacy
Discount Card for Free.
AdvanceRx offers
a free discount card to anyone that saves 13%-25% and covers
all drugs dispensed at a pharmacy. For details, call 1-800-ADVANCE
(238-2623) or www.advancerx.com. There are five free discount
cards for Senior citizens. The discount cards cover over 200
popular medications.
3. Save Up
to 93% by Asking for Generic Drugs
Try generics whenever
they are available. Both brand name and generic drugs contain
the same active ingredients, are the same in strength and dosage,
meet the same government quality control standards. According
to Mark Erblat, Pharmacy Director and owner of Rx For You, cost
savings on brand name vs. generic will vary from drug to drug
and pharmacy to pharmacy but can be significant. For instance:
- Prozac brand 20mg,
100 tablets cost $280.19 and generic sells for $29.99 (Savings
89%).
- Vasotec brand
5mg, 100 tablets costs $103.59 and generic sells for $18.19
(Savings 82%).
- Zantac brand 150mg
100 tablets costs $173.39 and generic sells for $10.99 (Savings
93%).
- Zestril brand
10mg 100 tablets costs $96.29 and generic sells for $39.99
(Savings 58%).
4. Veterans
Now Qualify for More Benefits.
Recent laws have
changed that grant veterans medical benefits for certain illnesses
like diabetes and hypertension, provided the veteran is subject
to qualifying conditions like agent orange exposure. See if
you qualify for benefits by checking with the Veteran's Administration.
5. Cut Your
Costs in Half by Using a Pill Splitter.
Most pharmacies
should stock pill splitters. Sometimes, medications can be broken
in half and save you 50%. The reason is because several pharmaceutical
manufacturers price some of their medications the same for all
strengths, i.e. Lipitor is essentially the same price for all
strengths. It is possible to save as much as $100 on a one month
supply of Lipitor just by getting the larger strength and cutting
in half. Ask your pharmacist.
This method may not
be appropriate for all medications and could be dangerous if
used with the wrong medication. Begin by asking your doctor
or pharmacist if your medication is available in a dose double
your normal dosage (if you usually take a 20 mg. pill, is a
40 mg. pill available?). If it is, ask whether there would be
any problems with splitting the tablets or capsules. Now, do
a cost comparison between the two dosages. If the higher dose
is less than double the cost for your regular dose then you
will be saving money by having your doctor prescribe the higher
dose and then splitting it. Cost savings is typically 32% to
50%. Check with your pharmacist to see if your pills can be
easily split.
6. Save by
Buying a 90 vs. 30-Day Supply.
Most pharmacies
have higher savings on a longer days supply. In addition, when
it comes to people who have insurance prescription coverage,
there may be other savings by getting a larger day supply. For
instance, if you have a $10 co-pay, the insurance company will
let you get only a 30 days supply in general for that $10. A
90-day supply bought without insurance may only cost you $18.
This would be much cheaper than paying $10 per month ($30 for
90 days). It would also save you two trips to the pharmacy.
7. Ask for
an Older Medication That is as Effective.
Many pharmacists
agree, that antibiotics are probably the most over prescribed,
or incorrectly prescribed medications. Often, the physician
will prescribe a newer antibiotic that has been promoted as
more effective. What this really means is that it is considerably
more expensive. The newer antibiotics are often no more effective
than the older antibiotics. However, they are new and covered
by patent protection. Therefore, the newer medication is more
effective in ensuring a nice profit for the drug manufacturer
for many years.
Since many generics
are made in the same factory as the brand name ones, make sure
you ask your doctor for a generic antibiotic. A great generic
broad-spectrum antibiotic costs 80% less than a new antibiotic.
In dollars, it costs you $20 instead of $100.
8. Over-the-Counter
Drugs May be as Effective as the Prescription Drug.
Many doctors still
prescribe Pepcid 20mg to their patients. A one-month supply
of Pepcid 20mg cost approximately $60. Pepcid AC, over-the-counter
in 10mg strength, taking double the dose costs approximately
$23. Most prescription cold medications average $20 to $60 for
a one month supply and contain the same decongestant that is
available over-the-counter for less than $2.
9. Get Only
a 7-day Supply of New Medication.
If the doctor does
not have samples, ask your pharmacist to give you only a one-week
supply to try. It is a federal law that medicines can't be returned
once they are dispensed. If you get a month's supply and can't
tolerate the medicine, you have just lost that money.
10. Stop Using
Drugs You No Longer Need.
Review all your
prescriptions with your doctor at each visit. You may be paying
for some drugs you no longer need. Doctor run www.rxaminer.com
provides a custom analysis of your medications to save you money.
You can get a free, no obligation, Cost Screening to find out
how much you can save. Also ask your pharmacist to review your
medications in addition to your doctor. Here is why. A pharmacist's
valuable services and knowledge are free. He may also find something
your doctor missed.
A lady developed
a persistent cough after she had been taking a blood pressure
medication for approximately 3 months. Her doctor treated her
cough with antibiotics and cough syrup for 6 months. She asked
her pharmacist about her cough lasting so long. The pharmacist
found that a possible side effect of her new blood pressure
medication was a persistent cough. Her doctor argued but changed
her medicine and her cough stopped. The lady had spent over
$750 in doctor's fees and medication just to treat the cough.
Don't hesitate to
ask your pharmacist questions, their advice is free and can
often save you money and aggravation. Ask questions about side
effects, and drug interactions. Always ask for the information
package insert for each medication.
11. Order Your
Prescription Drugs by Phone.
You can save 20%-50%
by ordering prescription drugs over the phone. Bonus, you do
not have to pick them up at the pharmacy. Make a list of your
medications, including strength and number taken daily. Then
list at least six pharmacies you are going to call. Don't forget
about discount mail order sources too, several are listed at
the end of this booklet. Then call and get prices, ask if this
is their best price available. Compare the costs.
12. Pay Attention
to the Quantity.
Find out how much
medication you really may need, and make sure your doctor doesn't
order you more medicine than is necessary to treat your condition.
13. Ask Your
Doctor for Samples at Every Visit.
14. Take Only
Those Drugs You Really Need.
When your doctor
prescribes medication for you, understand exactly what it's
meant to do and for how long. If you are prescribed two drugs
for the same symptom, ask if you really need both.
15. Buy Home
Test Kits.
Kits for determining
ovulation, pregnancy and colorectal cancer, can be purchased
as home tests instead of paying twice as much for similar kits
at your doctor's office.
16. Cross the
Border.
If you live close
to either Canada or Mexico, you can buy some medications in
either country for 75% off the U.S. price.
17. Ask for
an AARP Discount
AARP members are
eligible for many discounts, including mail-order pharmacy discounts.
You are eligible to join at age 50.
If you have questions
about these tips or your medication ask your doctor and pharmacist.
Also call the help lines below for details.
Senior Discount
Card Programs
GlaxoSmithKline's
The Orange Card (888) 672-6436. Covers all GSK's drugs. Must
have an annual income below $30,000 per individual or $40,000
per couple. 30% average savings at participating pharmacies.
Eli Lilly's LillyAnswers
Card (877) 795-4559. Covers all Lilly drugs except controlled
substances. Must have an annual income below $18,000 per individual
or $24,000 per couple. $12 co-pay per prescription for 30-day
supply.
Novartis' CareCard
call (866) 974-2273. Covers select Novartis drugs. Tier 1
must have an annual income below $18,000 per individual or $24,000
per couple. $12 Co-pay per prescription for 30-day supply. Tier
2 must have an annual income below $26,000 per individual or $35,000
per couple. Receive a 25% or more discount.
Pfizer's The Share
Card call (800) 717-6005. Covers all Pfizer's drugs. Must
have an annual income below $18,000 per individual or $24,000
per couple. $15 co-pay per prescription for 30-day supply.
Together Rx Card
(800) 865-7211. Over 150 select drugs from a group of manufacturers.
Must have an annual income below $28,000 per individual or $38,000
per couple. Savings of approximately 20-40% off the amount you
usually pay for prescriptions and, in many cases, substantially
more.
(Source: The Cost
Containment Research Institute (www.institutedc.org).
Permission to reprint)
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FM
Highlights from 10th World Congress on Pain
by Dr. Robert
Bennett
The 10th World Congress
on Pain was held in San Diego CA August 17 to 22, 2002. This is
a triennial meeting organized by the International Association
for the Study of Pain (IASP), the leading world body for pain
researchers and clinicians. It was a truly massive and overwhelming
meeting with 1788 presentations of one type or another. I do not
have a precise number for the attendees, but my estimate is about
3500.
The first day was devoted
to refresher courses. I took part in one of these courses devoted
to rheumatic pain disorders, giving a one-hour talk on fibromyalgia.
The other two speakers were from the UK; Professor Michael Doherty
spoke on osteoarthritis and Professor Bruce Kidd spoke on rheumatoid
arthritis. I was gratified to learn that at least some UK rheumatologists
are focusing their attention on pain mechanisms -- but as in many
countries this continues to be an uphill battle. There were many
sessions devoted to the basic mechanisms underlying chronic pain
states such as FM. Indeed, FM was frequently referred to in many
of these presentations as being the classical example of a “central
pain state”. By this is meant that peripheral tissue causes of
pain cannot be readily identified in most FM patients and that
most of the action is at the level of the spinal cord and above.
The neurophysiological and biochemical basis of central sensitization
is now being unraveled in minute detail. Much of this work relates
to neurochemicals and their interaction with specific receptors.
This is the basis of the transmission of sensory impulses from
one nerve cell to another. In order to make advances in this field
one must devote a large chunk of a research career to just one
very specialized topic. Needless to say, the arcane nature of
this work makes it very difficult to understand unless one is
an "insider". However, understanding the detailed mechanisms
of neurochemical receptor interactions will be pivotal in the
creation of designer drugs for treating chronic pain, while minimizing
the unwanted side effects that plague many of the currently available
medications.
Glial Cells
Lecture
A state-of-the-art
lecture, by Professor Linda Watkins from the University of Colorado
in Boulder was particularly noteworthy. For the past 10 years
or so, she has studied glial cells. Until fairly recently glial
cells were considered boring, as their only known role was to
provide a skeletal type support for nerve cells of the brain and
spinal cord. Prof. Watkins discovered that glial cells can be
activated by infections and other stresses, and they then interact
with nerve cells to produce chronic pain states via the secretion
of small proinflammatory molecules called cytokines. For instance,
90 percent of patients with HIV infection have chronic pain. Prof.
Watkins has shown that one component of the HIV virus (gp 120)
interacts with glial cells to induce a chronic pain syndrome.
This of course may be of relevant to FM patients who trace the
onset of their problem to an antecedent flu like illness. Furthermore
she has recently shown to that the introduction of a cytokine
called interleukin 10 into the nervous system of mice with an
experimentally induced chronic pain syndrome, attenuates their
pain. Interestingly, interleukin 10 inhibits the actions of the
pro-inflammatory cytokines. This is obviously exciting and important
work which may eventually have a relevance to FM patients -- stay
tuned.
Fibromyalgia
and CFS
There was an interesting
symposium entitled "The Biopsychosocial Approach to Fibromyalgia
and Chronic Fatigue Syndrome". It featured researchers with
differing views as to the nature of FM and CFS. Dr. Milton Cohen,
from Australia, asserted that two fundamental errors have been
perpetuated in contemporary research on the clinical phenomenon
of widespread pain and fatigue. The first is the failure to distinguish
a clinical feature from a disease process, without a unifying
concept. The second major error is the failure to focus on the
neurobiology of the defining clinical finding -- i.e. increased
pain sensitivity.
Dr. Lawrence Bradley
from Birmingham AL contested Dr. Cohen’s statement regarding the
lack of research on the neurobiology of FM and presented impressive
evidence for abnormal pain processing and dysregulation of neuroendocrine
function in FM. He noted that disorders such as FM, CFS and irritable
bowel syndrome (IBS) had a large degree of overlap. But he also
noted that not all persons with CFS showed the abnormal pain sensitivity
of typical FM patients. Dr. Bradley concluded that a better understanding
of the natural history of these overlap syndromes, looking at
genetic contributions, developmental stressors and triggering
events, will be essential in unraveling the relationships of these
common disorders.
Fibromyalgia
Posters
There were 27 individual
poster presentations devoted to the topic of FM. Here I review
the 9 that I consider to be most relevant and understandable for
patients.
- A study from France
explored the efficacy of subcutaneous ketamine on improving
pain in FM patients. Ketamine is a class of drugs known as NMDA
receptor antagonists. In high doses it is used as an anesthetic.
Activation of the NMDA receptor is a critical event in the biochemistry
of chronic pain states. Fifty patients received subcutaneous
ketamine (up to 50 mg daily) for ten days via an infusion pump
similar to that used by diabetic patients. There was a significant
improvement in pain scores in 78 percent of the subjects. At
six months after discontinuation of the ketamine 45 percent
of the patients still showed improvement. This is an intriguing
study but suffered from lack of a control group using a placebo.
- There was a fascinating
study from a New York group exploring the effects of the September
11th World Trade Center disaster on symptoms of FM. In a study
prior to September 11th, this group had screened a population
of 9000 women in metropolitan New York and New Jersey for FM
symptomatology and psychiatric symptoms. In February and March
of 2002 they re-contacted 1000 of the same women to determine
whether existing symptoms had changed. Interestingly they did
not find any major changes in FM like symptomatology, although
there was a minor increased in anxiety related symptomatology.
Interestingly, there was a significant reduction in the number
of doctor visits. I asked the author of this study for her interpretation
of the reduced doctor’s visits. She conjectured it was due to
a changed perspective of their problems in the light of the
devastation wreaked upon so many others.
- There is an ongoing
question as to whether FM may be set off by whiplash injuries
resulting from motor vehicle accidents. A study from Switzerland
applied an objective measure of increased central nervous system
sensitization (the nociceptive withdrawal reflex) to 3 groups
of subjects; one group with whiplash, another group with FM
and a group of healthy controls. The FM and whiplash patients,
but not the healthy controls, showed unequivocal evidence of
increased central nervous system sensitization. This is an important
study that brings some objectivity to this issue.
- On the same subject,
a group from Seattle looked at the onset of FM following whiplash
injury. This is an ongoing NIH funded study which aims to eventually
enter 400 whiplash subjects. To date 25 subjects have been studied
and 20 percent have developed widespread pain, and 80 percent
met the tender point criteria for a diagnosis of FM. The authors
concluded that some of the findings of FM are common in women
2 to 3 months following whiplash injury. They suggest that part
of this increased prevalence may be due to a clustering of tender
points in the neck region – as expected in the soft tissue trauma
following hyperextension/flexion injuries to the neck. But they
also noted that the high prevalence of FM symptomatology is
probably not entirely artifactual, as 68 percent of the whiplash
subjects also demonstrated tender points in other parts of the
body.
- A psychophysical
research study from Gainesville Florida studied FM patients
and healthy controls with an objective measure of central sensitization
called “temporal summation.” They asked the question as to whether
central sensitization could be modified by the placebo response,
fentanyl (a long acting opioid drug) or naloxone (a drug that
antagonizes the analgesic actions of opioids and the placebo
response). They found that FM patients had increased levels
of central sensitization compared to healthy controls. Temporal
summation was attenuated by both placebo and fentanyl to a similar
degree and was not influenced by naloxone. It was concluded
that central sensitization, which is thought to be a critical
component of increased pain sensitivity in FM, can be centrally
modulated by both endogenous (i.e. placebo) and exogenous (i.e.
fentanyl) manipulations. There is increasing evidence that one's
own endogenous pain modulating apparatus, modulated by endorphins,
involves the same neural pathways as opioid analgesics. Thus
strategies aimed at activating a patient's own endorphin system,
such as exercise, adopting positive coping strategies and having
an optimistic outlook, are important tools in the effective
management of FM.
- Most physicians
who specialize in managing FM patients believe that a multidisciplinary
approach to treatment is an essential prerequisite for success.
A Canadian group developed a ten-week program for FM patients
which included education, group support, coping skills training,
physical exercise in a pool, goal setting and daily activity
diaries. Patients were seen in groups of 10 to 15. Overall 395
patients had been analyzed at the time this study was reported.
Highly significant improvements were seen in the Fibromyalgia
Impact Questionnaire (FIQ), a widely used outcome measure in
FM studies. Women showed greater improvements than men, and
women under 40 showed the most improvement.
- A study from Brazil
reported on the effects of acupuncture on pain and quality of
life in patients with FM. Forty-eight women with FM were randomly
allocated into 2 treatment groups. Group 1 received amitriptyline
plus twice-weekly acupuncture sessions for 3 months. Group 2
received amitriptyline plus stretching and relaxation exercises
twice a week. There was a significant reduction of pain intensity
and improved function in both groups, but the acupuncture group
had significantly better response than the other group. The
authors concluded that acupuncture is an effective tool for
treatment of FM patients.
- A study from Salt
Lake City attempted to evaluate whether FM patients would be
more susceptible to pain experience during mammography and Pap
smears. A questionnaire was sent out to 100 women who were randomly
selected from a database of FM patients. Fifty nine patients
agreed to take part in the survey. They rated pain and anxiety
during their last mammography and Pap smear on a scale of 0
to 10. The mean pain score was 4.32 for mammography and 2.45
for Pap smears. Mean anxiety scores were 2.33 during mammography
and 2.2 to during Pap smears. It was concluded that women with
FM experience a moderate amount of pain during mammography,
and rate mammography as significantly more painful than Pap
smears. Anxiety levels were comparable between the two procedures.
As pain is a deterrent to women for undergoing mammography,
the authors suggested that more effective pain management during
this procedure should be considered for those women susceptible
to discomfort during mammography, such as FM patients.
- A study from the
UK evaluated the use of a new antidepressant drug called Reboxitine
in a study of patients with FM and neuropathic pain. Reboxitine
is a class of drugs that selectively inhibits the reuptake of
noradrenaline. Thus its mode of action is somewhat similar to
fluoxetine (Prozac) but it inhibits noradrenaline reuptake rather
than serotonin reuptake. One of the mechanisms whereby the brain
can control the relay of pain impulses upwards from the spinal
cord is via a descending pathway from the midbrain which uses
noradrenaline as a neurotransmitter. Thus it was conjectured
that Reboxitine would modulate pain via this descending noradrenaline
system. Twenty-five women with FM and 14 with neuropathic pain
(nerve pain arising from conditions such as diabetes or shingles)
were included in the study. Eight (32%) of the FM patients had
a very significant reduction in pain intensity and 6 elected
to continue with Reboxitine after the trial ended. Six (43%)
patients in the neuropathic pain group reported significant
pain reduction but only one wished to continue using Reboxitine
after the study ended. The reason for not continuing with the
medication after the end of the study was the side effects of
insomnia and agitation. However, in some patients the sense
of agitation was interpreted as a feeling of increased energy,
which was particularly welcome in some FM patients. This study
did not contain a placebo control group and thus the specificity
of the Reboxitine effect cannot be assessed.
Summary
Overall the 10th World
and Congress on Pain was a stimulating and somewhat exhausting
experience. As is often the case with large international conferences
one was subjected to intense information overload. However, I
came away with a sense of awe at the magnitude and quality of
the research which is being done worldwide to reduce the burden
of chronic pain. As an FM researcher, I was gratified to see that
the diagnostic term "fibromyalgia" is being used increasingly
by pain researchers who often refer to it as a "classical
example of central sensitization." As a rheumatologist, I
am increasingly impressed that FM is primarily a neurological
disorder which presents as a musculoskeletal pain syndrome. Having
said that, I believe that rheumatologists will continue to be
the major specialty who treat FM, as the correct diagnosis of
musculoskeletal pain is complex, and furthermore there is often
an overlap of FM with chronic rheumatic problems such as osteoarthritis,
lupus, and rheumatoid arthritis. Interestingly, neurologists seem
to be one of the last standouts in accepting the FM concept. Hopefully
that will change over the next few years before the next World
Congress on Pain which will be held in Sydney Australia in August
of 2005.
See the companion
article by Dr. Bennett on the Comprehensive Treatment of FM in
this issue. Dr. Bennett is an internationally known FM specialist,
Professor of Medicine at Oregon Health Sciences University (OHSU),
and Chairman of Arthritis and Rheumatic Diseases Division. Permission
was granted to publish this article from the Oregon Fibromyalgia
Foundation's website: www.myalgia.com.
© 2002 Robert Bennett M.D., FRCP.
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Kennedy
Proposes Chronic Disease Tracking
Senators Ted Kennedy,
Hillary Clinton of New York, and Harry Reid of Nevada cosponsored
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