.
On a visit to Martha’s Vineyard Hospital,
Dr. Nevena Zubcevik challenged conventional diagnosis and treatment of
tick-borne diseases.
-Jul 13, 2016
Dr. Nevena Zubcevik described her findings
on Lyme disease diagnosis and treatment, and its effect on the brain, to Martha's Vineyard Hospital physicians and members of the
public last week. — Barry Stringfellow
This past Friday, Dr. Nevena Zubcevik, attending physician at
Harvard Medical School and co-director of Dean Center for Tick Borne Illness at
Spaulding Rehabilitation Hospital in Charlestown (SRH) traveled to one of the
nation’s front lines in the public health battle against Lyme disease to speak
to a group of Martha’s Vineyard Hospital physicians. “I wanted to do this
presentation by Skype because of all the ticks you have here,” she joked.
Dr. Zubcevik was at Martha’s
Vineyard Hospital
(MVH) to speak at grand rounds, a weekly meeting of clinicians, which on this
day was open to the public, resulting in an overflow crowd at the Community
Room just off the hospital lobby.
Over the course of the hour, she shared the most recent findings
that she and her colleagues have made on the diagnosis and treatment of Lyme
disease, in particular on the 10 to 15 percent of patients who suffer long-term
symptoms, defined by Centers for Disease Control (CDC) as post-treatment
Lyme disease syndrome (PTLDS).
She discussed the protean nature of tick-borne diseases, the importance of
public awareness, and the urgent need for the medical community to step up its
game.
“Graduating medical students and doctors really aren’t educated
about the gravity of this epidemic,” she said. “There’s a gap there that needs
to be filled. We’re all responsible to educate our young doctors about what
this entails.”
Dr. Zubcevic said the recent revelation that actor, singer, and
songwriter Kris Kristofferson was cured of dementia once he was properly
diagnosed with Lyme disease should be a lesson for medical professionals on how
pervasive the disease is, and how often it is overlooked.
“Sudden-onset dementia should really be a red flag for Lyme
[disease], especially in people with compromised immune systems,” she said.
“Everyone over 50 has a compromised immune system.”
Dr. Zubcevik said that doctors and parents should know that Lyme
presents differently in children than it does in adults. “71 percent of the
time, headache is the most common symptom in children,” she said. “Mood disturbance,
fatigue, and irritability are also frequent symptoms in children. If they are
acting out in school all of a sudden, get them tested.”
Dr. Zubcevik cited a particularly compelling example of
undiagnosed Lyme disease where a 29-year-old male had been institutionalized
four times for schizophrenia. After a series of tests, and in concert with a
psychiatrist, Dr. Zubcevik began a course of daily antibiotics on him. “The
first month he could remember what he had for breakfast,” she said. “The second
month he could read a chapter of a book, and after six months he was back to
normal. He could tolerate light and sound again, which he couldn’t before.”
Tick truths challenged
Dr. Zubcevik said recent research debunks several commonly held
beliefs about the transmission and treatment of tick-borne diseases.
“The conception that the tick has to be attached for 48 hours to
inject the bacteria is completely outdated,” she said. “There are studies that
show that an attachment of 15 minutes can give you anaplasmosis,10 minutes for
the Powassan virus, and for the different strains of Borrelia burgdorferi, we
have no idea.”
Dr. Zubcevic said the notion that children, infants, or pregnant
women should not be given doxycycline is also outdated. “Dermatologists have
prescribed doxycycline to kids for years to treat acne; why not for such a
debilitating disease?”
She also said the two-day course of doxycycline, often
prescribed for people who find a tick embedded on their body, has little or no
prophylactic value. “It should be 100 to 200 milligrams of doxycycline twice a
day for 20 days, regardless of the time of engorgement,” she said. “It is not a
two-day thing.”
The blood tests currently used to detect the presence of the
Borrelia burgdorferi bacterium are the enzyme-linked immunosorbent assay
(ELISA) and the Western blot test.
Dr. Zubcevik said research has shown there are 10 different
strains of Lyme disease in the United
States, and many of them do not test
positive on the traditional Western blot or ELISA tests. In a previous email to
The Times, she wrote that with current testing, 69 out of 100 patients who have
Lyme disease may go untreated.
“The bull’s-eye rash only happens 20 percent of the time,” she
said. “It can often look like a spider bite or a bruise. If you get a
bull’s-eye it’s like winning the lottery. Borrelia miyamotoi, which we have a
lot in Massachusetts,
will not test positive on either test. That’s a huge problem, so the CDC is
moving toward a different kind of test.”
Borrelia miyamotoi also has the potential to spread rapidly,
since it’s transmitted directly from mother to offspring. Nymphal deer ticks
need to feed on a mammal, most likely the white-footed mouse, to contract the
virulent Borrelia burgdorferi bacterium.
In addition to Lyme disease, Islanders are also vulnerable to
coinfections such as babesiosis, anaplasmosis, ehrlichiosis, and tularemia,
which can also go undetected. “Babesiosis is a malaria-like disease that can
persist for months or even years,” she said. “Patients who can’t catch their
breath are a red flag for babesiosis.”
Double whammy
Dr. Zubcevik described deer tick nymphs as “the perfect vector”
because of their diminutive size — the size of the “D” on a dime — and because
of the analgesic in their saliva that often makes their bite almost
undetectable.
The bacteria they inject are equally crafty.
“Borrelia burgdorferi is an amazing organism; I have a lot of
respect for it,” she said. “It is a spirochete, meaning it can corkscrew into
tissue as well as travel in the bloodstream. It can do whatever it wants. It’s
twice the speed of a [white blood cell], which is our fastest cell. It’s so
strong it can swim against the flow of the bloodstream.”
Dr. Zubcevik said there are videos that show a white blood cell
pursuing a spirochete, which evades capture by drilling into tissue.
“It’s really easy to see why this adaptive bug can avoid the
immune system,” she said.
Dr. Zubcevik said doxycycline stops the bacteria from
replicating, but it doesn’t kill them. The rest is up to the body’s immune
system, which is the reason some people suffer for so long.
“There’s a lot of neurotoxicity, which is why people feel so bad
all over. It’s like a toxic warfare going on inside the patient’s body.”
Controversy continues
Last week, Governor Charlie Baker rejected the legislature’s
controversial budget amendment that would have required insurance companies to
cover the cost of long-term antibiotic treatment which chronic Lyme Disease
(CLD) advocates maintain is the most effective treatment for their symptoms. The Massachusetts Infectious Disease
Society, representing more than 500 infectious disease specialists, does not
recognize CLD, and urged the governor to reject the amendment, asserting that
long-term intravenous antibiotic therapy can be dangerous and possibly lead to
“superbugs” that are immune to current treatments.
The CDC also
does not recognize CLD or the use of long-term antibiotics for PTLDS.
“Regardless of the cause of PTLDS, studies have
not shown that patients who received prolonged courses of antibiotics do better
in the long run than patients treated with placebo,” the CDC website states.
“Furthermore, long-term antibiotic treatment for Lyme disease has been
associated with serious complications.”
However, the website also says, “Recent animal studies have
given rise to questions that require further research.”
Dr. Zubcevik diagnoses
the condition with a different name — “persistent symptoms related to Lyme
disease.”
“I’m new to this field,” she said. “For me there’s no
controversy. We have to innovate, we have to find solutions. [SRH] has
connected with top scientists from all around the country. Studies show that
after treatment in mice, dogs, and monkeys, Borrelia burgdorferi bacteria are
still there. This has also been shown in human tests.”
Citing the work of Dr. Ying Zhang at Johns Hopkins
Lyme Center,
she said the most likely effective remedy will be a combination of several
antibiotics. In a previous interview with The Times, Dr. Zhang said he
has worked on an effective PTLDS treatment for six years, and that current Lyme
disease treatments may not clear bacterial debris, or “persisters,” which may
be one of the possible causes of PTLDS. Dr. Zhang said that his work on
tuberculosis (TB) is his primary focus; however, advances in fighting TB, e.g.
using new combinations of drugs already approved by the Food and Drug
Administration (FDA), have yielded promising results in the fight against
“persisters.”
“There’s also a need to develop a more sensitive test,” he said.
Patient advocate
Although she started out at Spaulding Rehabilitation
Hospital focusing on the
neuropathy of concussions, Dr. Zubcevik branched out into treating people with
Lyme disease in part because both maladies can cause similar cognitive
impairment. “I heard Lyme disease patients say they can’t remember what they
had for breakfast, or they get lost driving home,” she said. “It sounded the
same as concussion symptoms, so we started doing PET scans.”
Positron emission tomography, or PET scan, is an imaging test
that uses a radioactive substance that shows brain functioning. Dr. Zubcevik
said PET scan of a patient with persistent Lyme disease symptoms showed a brain
colored in blue and purple hues, where a healthy brain presented with shades of
yellow and green. She showed an image of the patient’s brain after six months
of intravenous antibiotics, which was dominated by shades of yellow and green.
Dr. Zubcevik told the hospital gathering that many patients she
sees have been suffering the
physical, mental, and emotional effects of the disease for so long, they have
lost the will to live. “I literally have patients who were just done,” she
said. “They couldn’t go on. The first thing I do is validate their experience,
and tell them, ‘I believe you.’ Sometimes they start crying because somebody
finally listened. Some patients show symptoms of post-traumatic stress disorder
because they’ve been ignored for so long. Marriages dissolve all the time
because one spouse thinks the other is being lazy. Many chronically ill
patients end up alone.”
Treatment at SRH borrows from many different disciplines. In
addition to medication, it can include nutrition counseling, physical
therapy, occupational therapy, speech language therapy, mental health
counseling, and referrals to infectious disease and other specialists as
necessary.
Dr. Zubcevik said that the program was initially funded by
a donation from a patient who was treated shortly after the clinic opened.
“We’re always looking for more funding,” she said.
The current wait list at Spaulding is about four months.
Prevention, prevention, prevention
“Once patients are doing better, I will call harass them on the
weekend to check if they are taking the proper precautions,” Dr. Zubcevik said.
“Are they using repellant? Are they doing daily checks? Are they treating their
dogs? I don’t want to do another PICC line [intravenous drug access] or PET
scan.”
Dr. Zubcevik also said many people need to know proper tick
removal — using tweezers to grab the head of the tick, not at the body.
“Don’t don’t squeeze the belly of the tick, it will inject the
bacteria into your bloodstream. Do not use oils; it can make the tick vomit the
bacteria into the bloodstream. If the tick is deeply embedded, go to the
doctor.”
Numerous videos on Lyme disease prevention, including Dr.
Zubcevik’s presentation, are available on the MVTV website.
Comments
My daughter was
bitten by a tick on the Vineyard three years ago during our annual family
vacation at an up-island rental. Her husband removed it & we thought
nothing of it. She eventually developed flu-like symptoms, panic attacks, etc.
Six months later in South Carolina she had a miscarriage which triggered a
myriad of neurological symptoms which dozens of neurologists, ER doctors,
Cleveland Clinic Epilepsy doctors & surgeons, psychiatrists who told her it
was all in her head & tons of tests could not explain why she was
continually becoming sicker everyday! An ER doctor in the midst of this
questioned if she'd ever been bitten by a tick, to which we responded yes. But
The ELISA test was too late in the game & came back negative. She continued
to suffer tremendously. And any other doctor who questioned if she'd been
tested for Lyme was given our usual response: Yes she was tested & it was
negative. We were not Lyme literate. Well here we are 3 years after the bite.
She ended up with double stars on significant bands on a Western Blot. She was
treated in AZ by a clinic for 13 weeks with IV antibiotics and many other
methods to try and kill the bacteria, costing tens of thousands of dollars out
of pocket. She had to quit her successful job as a artistic director for an
advertising firm due to this devastating illness. Her husband's a 5th grade
teacher. She is still not well & struggling every day let alone every hour.
She's now been put on oral antibiotics & supplements. And a new DNA test
has recently revealed that she not only still has the Lyme Borrelia bacteria,
but also has the co-infections of Bartonella (which we suspected due to the
"cat scratches" she develops on her skin periodically), Babesia &
Ehrlichia! This has been a very traumatic road she's been down, along with
those supporting her. Her symptoms range from seizure-like shocks radiating
through her head to hearing fluctuation & sensitivity, tinnitus, visual
disturbances, facial paralysis, low grade fever, tingling & numbness to her
head & extremities, buzzing in her feet & hands, the list goes on. The
medical community through out this country must listen to doctors such as Dr.
Zubcevik and begin treatment to individuals asap. When it reaches a chronic
state its so difficult for the person to deal with. She struggles facing every
new day knowing what she has to battle! So thank you Dr. Zubcevik! I pray the
nation listens!
She is very fortunate to have you as her
cheerleader! Many others have families that deny there is anything wrong which
makes fighting this illness much harder. Thank you for standing by your
daughter and sharing with others!
You are very very kind. I honestly wished
she would've kept a journal. To have put this into a book would have been so
helpful to others suffering while feeling alone. But she is struggling so
horrendously that she's been unable to do so. Very hard to see someone suffer
day after day and know that you must kill the bacteria but the process makes
you unimaginably sicker when you're dealing with neuro Lyme. Thank you, again
for your kind words!
Not kindness, just simple decency to respond
to your trials. I completely agree with Sharon hansen, and salute you, until
all physicians admit how little we actually know about Lyme, more will suffer.
thank you for sharing your story it has educated me.
Thank you. I want the world to know the
devastation & debilitation this illness can cause. We need Dr. Zubcevik to
share her information with the masses! Again, thank you.
Each summer for several years I got bitten, but was diagnosed
and treated with Doxy, which remediated most of the symptoms . Three year ago,
however, it went undiagnosed and became disseminated. That's when all hell
broke loose. You and others here have described the life-altering changes,
neurological and otherwise, so all I'll say is that I'm grateful it didn't
happen during the years when I was responsible for supporting my family. That
would have been truly devastating for all concerned.
The article didn't really offer much hope for those of us whose
"barn door" was unknowingly left open too long, with the horse long
gone. Like many others others, I'm now trying to live productively under very
challenging circumstances.
As a side note, I have no patience for those
in my area who resist and condemn efforts to control the deer population. I
used to think the worst impact of having them grazing on my property was the
loss of shrubbery. I now know it's more about the loss of life as I knew it.
Its the rodents that bring the ticks so
close to us far more than the deer, thats why we needs Coyotes & foxes, 96%
of thr diet is rodents
I hear foxes in the backyard at night and
always wish them well in their hunting.
False negative Lyme tests are very common, doesn't mean anything...
Symptoms determine Lyme disease. Good natural treatments are more effective,
far less costly, I am cured after having 7 years of chronic Lyme disease! Come
join this non-profit group... JimJax: https://groups.yahoo.com/ne...
