Local Lyme sufferers say disease is widely misunderstood
Lane Poor, owner of Main Street Gallery in Warren, is writing a
book about Lyme disease that addresses what he perceives as the medical
community’s failure to properly diagnose and treat the infectious
disease.
Photo by Richard Dionne.
#Christin Peckham Lynch has been to hell and back. Actually, in many ways she hasn’t yet returned.
#The
Rumford resident rattles off the numerous ailments from which she’s
suffering that will have you scrambling for the nearest medical
dictionary:
#• Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), a disease of the nerves
#• Dystonia, a movement disorder that causes the muscles to contract and spasm involuntarily
#• Occipital neuralgia, a condition characterized by chronic pain in the upper neck, back of the head and behind the eyes
#• Fibromyalgia, a disorder characterized by widespread musculoskeletal pain, fatigue and tenderness
#• And more: rheumatoid arthritis, chronic fatigue syndrome, cognitive issues, severe disc and joint deterioration ...
#Yet the root cause of her illness was another disease from which she’s, ironically, recovering.
#“That’s all because my Lyme disease wasn’t treated correctly,” said Ms. Lynch. “I went eight and a half years untreated.”
#If
detected early and treated early with antibiotics, a person who
contracts Lyme disease may experience nothing more than minor flu-like
symptoms such as joint pains, chills, fever and fatigue before they
readily recover. The problem is, even though it’s been more than 30
years since the infectious disease was officially identified, Lyme is
still a widely misunderstood and often misdiagnosed ailment. When left
untreated, the bacterium spreads through the body and causes severe
headaches, damage to the nervous system, arthritis, brain swelling,
memory loss, cardiac problems and more.
#With
its abundant deer population and wetlands, The East Bay and Southcoast
area is a hotbed for Lyme disease, particularly in Westport, Little
Compton and Prudence Island. (One study found that 75 percent of
Prudence residents have been infected with Lyme.)
#Ms.
Lynch believes she first contracted Lyme in 1991 in Pawtucket. Like
many sufferers, however, she has no recollection of getting bit.
#“Everyone
told me I had ringworm,” she said, noting she had the classic
bull’s-eye rash pattern on one leg and her lower back. “A dermatologist
gave me a topical cream and sent me on my way.”
#That
led to a false sense of security and for years she suffered from
worsening neurological problems and new ailments — including serious
cardiac problems — that kept popping up. She was misdiagnosed on
numerous occasions.
#“It’s
so vague because it can be masked as anything. It’s scary. They kept
telling me I had this, that and the other thing. I had doctors that were
insistent that I had MS (multiple sclerosis),” said Ms. Lynch, who was
also once told she could be experiencing early stage breast cancer — a
disease from which her sister died. In 2007, when she was just 39, she
received a cardiac catheterization — another error, she said.
#Shortly
after, however, she saw a specialist in Connecticut, who finally
diagnosed her with Lyme disease and prescribed a cocktail of
antibiotics. Since then she’s seen “dramatic improvement” in her regular
blood work for Lyme disease. However, Ms. Lynch is still suffering from
her other Lyme-related ailments — particularly the CIDP, which leaves
her physically and mentally exhausted.
#“It’s
frustrating,” she said. “There are so many things that I have. My whole
thing is that people get treated properly. It’s not even that they get
treated soon, but properly. Be aggressive at the beginning.”
#‘The three Bs’
#Lane
Poor nearly died from the Lyme disease he believes he got from a tick
bite in Little Compton 32 years ago, but lay dormant in his body for
years. Six years ago he was treated for depression — a common effect of
untreated Lyme — and has also experienced insomnia, memory loss, cardiac
problems and frontal lobe headaches.
#“I felt like I had fallen off a cliff and I was in a canyon that had straight walls and there was no end. It was hell,” he said.
#These
days he’s never felt better, but Mr. Poor hasn’t left Lyme disease
behind; he’s on a mission to increase awareness and understanding of the
disease. The 69-year-old owner of Main Street gallery in Warren said
the disease is dangerous precisely because it’s so misunderstood by the
medical community — particularly the Infectious Disease Society of
America (IDS).
#“It’s
an emerging disease. We’re at the beginning of what it’s really all
about,” said Mr. Poor. “(With doctors), a lot of it’s fear. It’s such a
complex thing they can’t get their heads around it.”
#To
help remedy that, this “not-so-patient patient” is writing a book about
the disease: “Do You Know the 3 Bs of Lyme Disease?” He’ll be posting
chapters on an online blog before it’s published in book form. The main
thrust of his research is that most doctors are looking at the disease
in too limited a fashion.
#“When
somebody asks me, ‘Do you have Lyme disease?’ I say, ‘Which component
are you talking about?’” said Mr. Poor, adding that he wished people
didn’t even refer to the disease as “Lyme.” Instead, they should focus
on the “three Bs” of his book’s title: babesia, bartonella and borrelia.
Without getting too technical, they’re three distinct bugs he said need
to treated differently.
#“People
typically say Lyme and the average doctor will think you’re talking
about just one bacteria, which is borrelia burgdorferi,” he said. “It’s
not so much we’re looking at (Lyme) the wrong way but the way we look at
it creates fog, because Lyme in some minds covers only one thing. But
in reality with the symptomological stuff, it’s a very complex cocktail
of really nasty bugs. If you try to look at it through the lens of just
one bug, you’re missing a lot of it.”
#Nearly
all Lyme sufferers he’s been in contact with have had the co-infection
babesia, he said. “It’s a parasite that lives within the red blood cells
and really messes up what they do — taking virtually the entire
foundation of your immune system away. With either or these — babesia or
bartonella — if you have a compromised immune system, it can actually
kill you,” said Mr. Poor, noting that there was a fatal case of babesia
only last year in Rhode Island.
#“The
deniers say that just because those bacteria and parasites are in the
gut of the tick doesn’t imply that the person they bite is going to get
them,” he said. “My response to that is, ‘You can play Russian roulette
with three bullets in the chamber. Go ahead and pull the trigger. How
long are you going to leave that tick on there and treat it for borrelia
and forget the other co-infections?”
#Paucity of support
#Mr.
Poor said those infected with Lyme disease need to reach out for
support. The disease is not only misunderstood by the medical community
but by friends and family members as well, he said. “Often families who
are not physically close to the person who has Lyme have no idea what
that person is going through,” he said, adding that some believe there
are pills that can cure the disease. “There is no silver bullet for
Lyme.”
#Ms.
Lynch knows that all too well. Some family members and friends have
even accused her of faking her illness. “They don’t understand. I’m not
getting treated for Lyme — it’s the other stuff,” she said, adding that
well-meaning loved ones have told her she’d feel better if she just
“worked out” more.
#“No
I won’t. I’ll feel worse,” said Ms. Lynch, who takes medication
intravenously at home and plans her schedule around proper rest. “I was
going out with friends Saturday, so I stayed home Thursday and Friday.”
#Unfortunately,
there’s a general lack of support systems for Lyme. Mr. Poor once
attended gatherings of the Westport Lyme Support Group because it was
the only one in the area, but that group has since disbanded. “There’s a
real paucity of support for this,” he said.
#Even
if there were local support groups, Ms. Lynch’s not sure how successful
they’d be. “Most people aren’t feeling well enough to go to a support
group,” said Ms. Lynch, who seeks online support and often gets calls
from strangers who were referred to her. “It makes me feel better to
talk to people who are looking for advice.”
#Gaining ground on awareness front
#Despite
their frustrations with the medical establishment, however, some people
touched by the disease say progress is being made on increasing
awareness. Barbara Smith of Westport is one Lyme sufferer who gets the
word out whenever she can.
#“The
mindset of the medical community in this area is a travesty. It’s more
than an epidemic, it’s a pandemic,” said Ms. Smith, adding that there
are people who are bankrupt because they don’t have a diagnosis.
“Doctors are just pooh-poohing this.”
#In
May she partnered with Janie Day, another woman who has battled Lyme,
to launch the “Paint Westport Green” project in which they asked
residents to display green ribbons to bring attention to the disease
which has taken a terrible toll in their area.
#“It
was great. The whole town of Westport was green and people from other
towns contacted me,” said Ms. Smith, a clinical social worker who’s
organized a Sept. 9 talk about Lyme disease (see related story).
#She
and others are heartened to see signs of a bigger national discussion
about Lyme. Mr. Poor credits U.S. Sen. Richard Blumenthal — the former
Connecticut attorney general who sued IDS over its Lyme disease
guidelines — and U.S. Rep. Jack Reed for holding hearings on Lyme to
bring more attention to the epidemic. “The more light we can shed upon
this the better,” he said.
#“It’s
all about politics, big pharma. But mostly it’s about closed minds,”
said Ms. Smith. “We have to keep up with the education and the political
action. Some people are too sick to fight.”
#Author recounts story
#Katina
Makris, a veteran homeopath and author, will share her 10-year healing
journey from misdiagnosed Lyme disease when she appears in Westport
Sunday, Sept. 9, for an event hosted by Southcoast Lyme.
#The
program will be held from 6-8 p.m. at the Westport Grange, 937 Main
Road, Westport. Admission is $5, although no one will be refused
admission if they cannot afford to pay.
#Ms.
Makris is author of “Out of the Woods: Healing Lyme Disease — Body Mind
& Spirit,” written by a health care practitioner from the vantage
point of a patient. Ms. Makris lends personal and professional
experience on mending the body, mind and spirit from the ravages of
chronic Lyme disease. She’ll share insights into the Lyme paradox and
tools for regaining one’s health.
#Ms.
Makris has worked in natural health care for 27 years, as a classical
homeopath and intuitive healer. She’s a former newspaper health
columnist and a past board member of The Council for Homeopathic
Certification. She is a graduate of Duke University and The Stillpoint
School of Integrative Life Healing.
#Ms.
Makris was stricken with a mysterious “flu” at the peak of her career.
Only after five years of torment — two completely bedridden — and
devastating blows to her professional and family life was her illness
finally diagnosed as Lyme disease.
#For more information contact Barbara Smith at sanctuarysmith@charter.net.
#For information on the symptoms of Lyme disease and steps you can take to prevent the infection, visit www.aldf.com. Lane Poor’s “3 Bs of Lyme” Facebook page is at www.facebook.com/The3BsOfLyme.
