"Borrelioosi on brutaali sairaus. Ihmisillä ei ole minkäänlaista käsitystä siitä mitä tauti voi tehdä. En edes muista enää minkälaista oli silloin kun voin hyvin."
Russo sai pureman käteensä vuonna 2003. Puremakohtaan imestyi borrelioosille tyypillinen ihomuutos. Kahden päivän kuluttua hän ei kyennyt liikuttamaan kättään. Ensiavun lääkärin diagnoosi: shingles. Hoidoksi kortisonia. Hän voi jonkin aikaa paremin ja unohti asian.
Vähitellen hänelle alkoi kuitenkin ilmaantua outoja toistuvia tulehduksia virtsarakossa, poskionteloissa, haavaumia suuhun, uupumusta, lihas/nivelkipuja jne.
Vuonna 2004 hän kaatui lattialle ollessaan yksin työpaikallaan eikä kyennyt nousemaan ylös. Sairaalassa hänellä epäiltiin lupusta ja reumaa. Hoidoksi oireidenmukaista lääkitystä. Russon oireet pahenivat vähitellen. Hän sai jalkakramppeja ja lopulta hänen alaraajansa halvaantuivat vyötäröstä alaspäin.
Hänelle tehtiin kaikkia mahdollisia testejä. Lisää diagnooseja: MS, ALS, Parkinson, psyykkiset syyt. Äidin kehotuksesta hänelle tehtiin myös borreliatestit (ELISA) mutta ne olivat aina negatiiviset. Tarkempaa Western Blot -testiä ei negatiivisen ELISAn vuoksi tehty ennenkuin viime tammikuussa. Testitulos oli positiivinen. Diagnoosi: kroonisen borrelioosin aiheuttama aivotulehdus.
Russo tapasi infektiotauteihin erikoistuneen lääkärin Sam Dontan joka aloitti antibioottihoidot. Hoitojen aikana hän sai vakavia huononemiskausia (Herxheimer-reaktio). 10 kuukauden hoitojen jälkeen hän lopetti hoidot vähäksi aikaa. WB-tulosten jälkeen hän aloitti toisen lääkärin kehotuksesta suonensisäiset antibioottihoidot. Niistä hän sai edellisiä hoitoja voimakkaammat reaktiot. Tällä hetkellä Russo tekee kevyttä fysioterapiaa. Lääkärit eivät osaa sanoa tuleeko hän tai milloin hän tulee parempaan kuntoon.
http://www2.townonline.com/barnstable/l ... al/view.bg?
By Laurie Higgins
Thursday, May 18, 2006
When Sally Russo graduated from Dennis-Yarmouth Regional High School
eight years ago, she thought she had her life perfectly planned out.
With a full field hockey scholarship to UMass-Amherst, the three-
sport athlete was strong, in shape and on top of her game. The
reality of that life is now just a distant memory, but one that
gives her hope.
Propped up on her bed for a recent interview, with the hood of
her sweatshirt pulled up to cover the multiple electrodes attached
to her head for a 48-hour EEG, the petite 26-year-old from Yarmouth
explained that she can now only walk with the help of Loftstrand
crutches. The reason? Undiagnosed Lyme disease.
"It is a brutal, brutal disease and I think people just don't
have any idea what it can do," she said. "I don't even know what it
would feel like to feel good again."
Russo ended up leaving UMass after one semester for personal
reasons, but after working for a year and a half, decided to go back
to school. She received a full scholarship from Miami University in
Ohio in the fall of 1999. Unfortunately, her field hockey days were
numbered. Ten days after arriving in Ohio, she blew out her back and
had to have the first of three eventual surgeries to repair ruptured
But she continued her education, taking classes in summer school
to make up lost time from her surgeries. During her final summer
semester in 2003, Russo noticed a weird bite on her arm.
"I thought it was a spider bite," she said. "I really wasn't
familiar with Lyme disease and I did have the bite with the ring
around it, so I should have known, but I didn't."
Two days later, she was unable to move her arm and went to the
emergency room, where a doctor diagnosed her with shingles and gave
her prednisone. She felt better, and in the excitement of graduation
a month later, she forgot all about the bite. Soon a confusing and
debilitating array of symptoms and illnesses erupted, including
mouth sores and bladder and sinus infections that wouldn't go away.
"Finally, I was coming home one day from work and I just lost
it. I came in the door and I said to my mother, 'This is not a sinus
infection. Something is wrong. I don't know what it is. I'm
exhausted and have all this muscle and joint pain.' I was just tired
in a way that wasn't like I needed a nap. It was a physical tired."
Then in February 2004, while alone at work, she collapsed on the
floor and couldn't get up. Luckily her mother stopped by for a visit
and called an ambulance. After spending a week in Cape Cod Hospital,
doctors suspected she might have lupus or rheumatoid arthritis, but
without a real diagnosis they continued to treat symptoms instead of
That summer Russo began to have severe cramping in her foot and
painful charley horses that quickly turned into spasms, first in her
legs and eventually throughout her whole body. Both her primary care
physician and a muscle specialist in Worcester referred her to UMass
Memorial in Worcester.
She arrived in a wheelchair, paralyzed from the waist down and
stayed a week as the spasms turned into full-blown seizures lasting
from 10 minutes to an hour. "They did every test under the sun from
a spinal tap to brain MRIs. They even checked my back again because
they thought something was up with my nerves," she said.
Tests and second opinions
At that point doctors were considering Parkinson's disease, MS
and ALS, but still did not have a real diagnosis. At her mother's
urging, Russo was tested several times for Lyme disease, but the
results all came back negative with one test indeterminate. The
Centers for Disease Control recommends that a second, more specific
and reliable test, the Western blot test, be performed in the case
of a positive or equivocal result, but that wouldn't be done on
Russo until this past January.
After Russo left UMass Memorial, she spent two weeks at RHCI
rehabilitation hospital in Sandwich doing physical therapy. Without
a real diagnosis, doctors were beginning to suspect a conversion
disorder, where psychological problems manifest themselves with
"I was fine with that," Russo said. She said three psychiatrists
agreed she did not have conversion disorder.
In the meantime, Russo continued to seek opinions from doctors.
A specialist from the Lahey Clinic diagnosed a possible dopamine
disorder and prescribed a medicine that would treat the dopamine
levels in her body. The same week she saw Dr. Sam Donta, a
specialist in infectious diseases who has an office in Falmouth.
"I was literally in his office for five minutes and he
said, 'You have Lyme disease,'" she recalled. He immediately put her
on antibiotics. Russo began to feel better but wasn't sure which
medication or diagnosis was the right one, so she tapered off the
dopamine medication and realized the antibiotics were helping.
Even though she felt better, that summer she hit a plateau where
she wasn't getting better or worse, a condition Donta assured her
was typical of people with Lyme disease whose bodies had become
accustomed to the antibiotics. He put her on another antibiotic and
within a week she had a spasm that lasted 12 hours that landed her
back in the hospital for a week.
"When you go on the medicine it pulls the [Lyme] spirochetes out
and as they die off they produce a toxin. That's what causes the
body to not feel well and everybody has different symptoms," she
said. "No two Lyme patients are the same."
The problem intensified last November when she went into a spasm
that lasted for 22 hours and things got even scarier. During another
week-long stay at the hospital, her heart stopped for close to a
minute. Truly frightened, Russo decided to stop taking the medicine
to let her body recover.
"I had been on the medicine for 10 months and physically I was
just too tired and I just wanted to give my body a break," she said.
While she was off the meds, she made an appointment to see Dr.
Carolyn Britton at Columbia-Presbyterian Medical Center in New York,
who ordered the Western blot tests that finally gave Russo a true
diagnosis of stage three chronic Lyme encephalitis.
With that knowledge, Russo decided to have a port put into her
arm so that the antibiotic rocephin could be delivered
faster. "Literally within 12 hours my body went out of control," she
said. "I have never been so sick in all my life. On March 7, I went
in [to Cape Cod Hospital] to have that port put in and I was
supposed to be home within four hours. I stayed for five weeks."
Now home again, Russo is doing light physical therapy and trying
not to overdo it. "It's kind of a waiting game, that's the hardest
part," she said. When she recently asked her doctor when she would
get better the answer was, "We don't know. You'll be better when you
feel better and we can't tell you when that's going to be."
In the meantime Russo feels the need to share her story. "If
even one person reads this article and says, 'I'm going to be more
careful. I'm going to get checked because I got bit by a tick,' I'll
be happy. If I could help one person, that would be unbelievable to
Lyme disease information
The highest incidence of Lyme disease in Massachusetts occurs on
Cape Cod, Southeastern Massachusetts, the islands of Nantucket and
Martha's Vineyard, in areas north of Boston, and along the Quabbin
Reservoir watershed and the Connecticut River Valley in Western
In 2004, 192 cases were reported on Cape Cod, the highest number
in the state. Currently, no vaccine is available to protect humans
against Lyme disease.
The Cape Cod and Islands Tick and Lyme Disease field program
includes education, surveillance and intervention on Cape Cod and
The surveillance project calculates deer tick abundance and
infection by Lyme disease in the region, and the intervention
project is a multi-year attempt to limit ticks by placement and
maintenance of a novel device known as a 4-poster.
A monthly publication called Tick Talk lists updates on the
Barnstable County program. To subscribe, call: Kalliope Egloff, 508-
375-6698, or e-mail her at firstname.lastname@example.org
Carefully remove any attached tick as soon as possible. The
longer an infected tick remains attached to your body, the higher
the likelihood of disease transmission. Favorite places ticks like
to go on your body include areas between the toes, back of the
knees, groin, armpits, neck, along the hairline and behind the ears.
Use fine point tweezers to grip the mouth parts of the tick as close
to the skin as possible. The tick should not be squeezed or twisted,
but pulled straight outward with steady, gentle pressure.
The brochure "Preventing Disease Spread By Ticks" is available
by calling the Division of Epidemiology and Immunization at 617-983-
Russo sairastui valmistuttuaan Miamin yliopistosta. Hän ei tiedä tarkkaan milloin on saanut tartunnan, mutta hänellä oli vuonna 1997 kädessä ihomuutos, joka lääkärin mukaan oli shingles. Sitä seuraavien kolmen kuukauden aikana hänellä oli haavaumia suussa, 6 rakkotulehdusta, nivelkipuja ja fatiikkia - kaikki tyypillisiä borrelioosioireita.
"Tuntui kuin joku olisi kaatanut sementtiä ruumiiseeni." Erään kerran hänen pyörryttyään hänet otettiin sairaalaan. Siellä diagnoosit vaihtelivat autoimmuunisairaudesta lupuksesta, lihassairauteen ja MS-tautiin.
Halloweeninä vuonna 2004 hän ei pystynyt enää kävelemään. Borrelioositestit olivat negatiiviset. Russon äiti oli sitä mieltä, että tytärtä tulisi hoitaa antibiooteilla, koska borreliatartunta ei välttämättä näy testeissä.
Viimein vuonna 2005, kun hän oli pyörätuolissa ja sai voimakkaita lihasspasmeja, hän otti yhteyttä lääkäri S. Dontaan Bostonissa. Donta teki borrelioosidiagnoosin ja aloitti antibioottihoidot.
Hän meni myös toisen erikoislääkärin luokse, joka epäili hänen sairastavan Parkinsonin tautia ja aloitti dopamiinin. Kolmessa viikossa antibioottien ja dopamiinin aloittamisesta Russo pystyi jälleen kävelemään. Kukaan ei osannut sanoa kumpi diagnoosi oli oikea ja mikä lääke auttoi kunnes hän vuonna 2006 meni tapaamaan Columbian yliopiston neurologia. "Kaksi viikkoa myöhemmin hän soitti ja kertoi minun olevan aivan 'täynnä borrelioosia'. Puhelu oli paras mitä olin koskaan saanut", Russo kertoo.
Russon urheilutausta on auttanut häntä selviämään epätoivosta. Hänen terveytensä paranee edelleen ja hän odottaa näkevänsä päivän jolloin voi aloittaa uransa kirjailijana. "Minulla oli koko elämä edessäni ja nyt olen tilanteessa jossa joudun taistelemaan selviytyäkseni päivästä toiseen."
(Suom. huom. S. Dontan hoitoprotokolla on luettavissa kotisivuillamme "Borrelioosin hoito". Donta lähetti ohjeen yhdistyksemme jäsenelle aikoinaan.)
March 13, 2007
Living with Lyme
By ROBIN LORD
Sally Russo was a standout athlete at Dennis-Yarmouth Regional High School who won field hockey scholarships to the University of Massachusetts in Amherst and, later, Miami University in Ohio.
Sally Russo of South Yarmouth is the author of "While I Was Walking," about living with Lyme disease and her struggle to have it correctly diagnosed.
(Staff photo by Kevin Mingora)
But the 27-year-old South Yarmouth resident is the first to say that the playing field was not where she fought her toughest battle.
In 2002, Russo was struck with an illness that baffled doctors, and left her crippled, enduring seizures that lasted up to 22 hours.
She was finally diagnosed with Lyme disease last year and has written a book about her long road to diagnosis and treatment.
''While I Was Walking,'' published by PublishAmerica, is expected to be in bookstores next month, she said.
''I felt somebody has to paint the picture of what Lyme can do to someone's body, especially a young healthy body,'' she said in a telephone interview last week.
Russo became ill after she graduated from Miami University in 2003. She's not sure when her Lyme disease started. Perhaps it was even a rash on her foot in 1997, or one on her arm that an Ohio doctor diagnosed as shingles.
Over the next three months, she had mouth sores, six bladder infections, several sinus infections, joint pain and fatigue - all classic Lyme disease symptoms.
''I felt like someone had poured cement through my whole body,'' she said.
But it was a mysterious convulsive disorder that left her disabled and in a wheelchair, she said. After collapsing at work one day, she was taken to Cape Cod Hospital. The diagnosis ranged from lupus, an autoimmune disease, to a muscular disease such as multiple sclerosis.
By Halloween 2004, she could not walk, she said.
Despite a negative Lyme test early on in her illness, Russo's mother, Ruth, argued to have her daughter treated for Lyme, since the disease does not always show up in blood tests.
Finally, in January 2005, confined to a wheelchair and enduring muscle spasms that had become longer and more intense, she turned to Dr. Sam Donta of Falmouth and Boston. He diagnosed Lyme disease and began antibiotic therapy.
But she also went to a movement specialist in Boston, who suspected Parkinson's and prescribed the drug dopamine. Within three weeks, she was walking again. No one could say which medication had done the trick, or which diagnosis was accurate.
In January 2006, she saw a neurologist at Columbia University.
''She called me two weeks later and said, 'You are so loaded with Lyme disease, I can't believe it,''' Russo said. ''It was the best phone call I've ever gotten.''
Russo's athlete's determination has helped her push through her despair, she said. She continues to make progress, and sees a day when she will be able to focus full time on her future as a writer.
''I had this whole life ahead of me, and now I'm fighting through one day at a time.''
Robin Lord can be reached at email@example.com.
(Published: March 13, 2007)