LymeNet Newsletter vol#2 #02 
Author Message
 LymeNet Newsletter vol#2 #02

*                  The National Lyme Disease Network                  *
*                         LymeNet Newsletter                          *

IDX#                Volume 2 - Number 02 - 2/15/94
IDX#                            INDEX
IDX#  I.    ANN NEUROL: The Polymerase Chain Reaction In The Diagnosis
IDX#        of Lyme Neuroborreliosis
IDX#  II.   NEJM: Detection of Borrelia burgdorferi DNA By Polymerase
IDX#        Chain Reaction In Synovial Fluid From Patients With Lyme
IDX#        Arthritis
IDX#  III.  SF EXAMINER: Dr. Paul Lavoie, LD Specialist, Dead at Age 60
IDX#  IV.   NY TIMES: (Letter) We Minimize Lyme Disease at Our Peril;
IDX#        Cooperation Needed
IDX#  V.    TIMES-PICAYUNE: Officials Won't Aid Inmate Who Needs New
IDX#        Heart
IDX#  VI.   Q&A: Roxithromycin and Lyme
IDX#  VII.  Q&A: Seronegative Lyme?
IDX#  VIII. Q&A: Lyme Vaccine Testing
IDX#  IX.   Q&A: Support Group Listings
IDX#  X.    How to Subscribe, Contribute, and Get Back Issues

     "It is ironic that many of those doctors who criticize other
      members of their profession for allegedly overdiagnosing Lyme
      disease and mistreating patients are the same doctors whose
      treatment failures fill the patient ranks of the doctors they

      -- BRUCE S. COLEMAN  (see section IV)


I.    ANN NEUROL: The Polymerase Chain Reaction In The Diagnosis of
      Lyme Neuroborreliosis
AUTHORS: Pachner AR; Delaney E
REFERENCE: Ann Neurol 1993 Oct; 34 (4): 544-50

The polymerase chain reaction is sensitive and specific in the
detection of defined DNA sequences and holds promise for diagnosing the
presence of fastidious microorganisms in human infectious diseases.  We
developed a methodology for nested polymerase chain reaction and
hybridization analysis of the cerebrospinal fluid using primers from a
genomic Borrelia burgdorferi sequence and applied it to the
cerebrospinal fluid (CSF) of patients suspected of having Lyme
neuroborreliosis and other diseases.  Polymerase chain reaction and
hybridization demonstrated extremely high sensitivity for spirochetal
DNA, and was highly specific, with a false-positivity rate of less than
3%.  However, the results were negative or indeterminate in 54% of CSF
samples from patients with definite or probable disease, indicating an
absence, or extremely low level, of spirochetes or spirochetal DNA in
a significant percentage of patients with Lyme neuroborreliosis.
Polymerase chain reaction and hybridization of the CSF can thus be
considered a useful adjunct in diagnosis, but its negativity does not
rule out Lyme neuroborreliosis.


II.   NEJM: Detection of Borrelia burgdorferi DNA By Polymerase Chain
      Reaction In Synovial Fluid From Patients With Lyme Arthritis
AUTHORS: Nocton JJ; Dressler F; Rutledge BJ; Rys PN; Persing DH;
         Steere AC
REFERENCE: N Engl J Med 1994;330:229-34.

Background: Borrelia Burgdorferi is difficult to detect in synovial
fluid, which limits our understanding of the pathogenesis of Lyme
arthritis, particularly when arthritis persists despite antibiotic

Methods: Using the polymerase chain reaction (PCR), we attempted to
detect B. burgdorferi DNA in joint fluid samples obtained over a 17-
year period.  The samples were tested in two separate laboratories with
four sets of primers and probes, three of which target plasmid DNA that
encodes outer-surface protein A (OspA).

Results: B. burgdorferi DNA was detected in 75 of the 88 patients with
Lyme arthritis (85 percent) and in none of 64 control patients.  Each
of the three OspA primer-probe sets was sensitive, and the results were
moderately concordant in the two laboratories (kappa = 0.54 to 0.73).
Of 73 patients with Lyme arthritis that was untreated or treated
with only short courses of {*filter*}antibiotics, 70 (96 percent) had
positive PCR results.  In contrast, of 19 patients who received either
parenteral antibiotics or long courses of {*filter*}antibiotics (>=1 month),
only 7 (37 percent) had positive tests (P<0.001).  None of these seven
patients had received more than two months of {*filter*}antibiotic treatment
or more than three weeks of intravenous antibiotic treatment.  Of 10
patients with chronic arthritis (continuous joint inflammation for one
year or more) despite multiple courses of antibiotics, 7 had
consistently negative tests in samples obtained three months to two
years after treatment.

Conclusions: PCR testing can detect B. burgdorferi DNA in synovial
fluid.  This test may be able to show whether Lyme arthritis that
persists after antibiotic treatment is due to persistence of the

Table 3: Clinical Data and PCR Results in Patients with Lyme Arthritis
[1]                               Positive        Negative
                                  PCR Test        PCR Test
                                  (N = 75)        (N = 13)     P Value
Age (yr)                       29  (8 - 67)    38 (3 - 62)        NS
Sex (M/F)                           53/22           6/7           NS
Months before PCR
 First symptoms of illness     19  (1.5-76)    38  (2-222)      <0.02
 Onset of Arthritis            14  (0.25-74)   26  (0.25-153)   <0.03
 Current episode of arthritis  0.75 (0.03-18)  1   (0.25-35)      NS
Months after PCR
 Resolution of current         0.25 (0.03-6)   0.2 (0.03-2.5)     NS
   episode [2]
 Resolution of last episode[2]  18 (0.1-113)   2  (0.1-58)       0.03
 Last follow-up                 114 (0-198)     18 (2-179)      <0.008
Synovial fluid [3]
 White-cell count              16.7 (0.05-110)  5.1 (0.44-16.9) <0.003
 Protein (g/dl)                5.0  (1.7-9.6)   4.1 (3.3-5.3)      NS
Antibiotic therapy (no. of
 None                                58               3    )
 Short {*filter*}courses (<1 mo)          12               0    )->   <0.001
 Long {*filter*}courses (>=1 mo)           5              10    )
     or parenteral
[1] Correlation is with the test results from each patient's initial
    sample only.  Unless otherwise indicated, values are medians, with
    ranges in parentheses.  NS denotes not significant.
[2] Four PCR-positive patients and five PCR-negative patients who
    still had active arthritis at the time of our analysis were
[3] Synovial-fluid data were available for 73 PCR-positive patients and
    10 PCR-negative patients.


III.  SF EXAMINER: Dr. Paul Lavoie, LD Specialist, Dead at Age 60
DATE: January 26, 1994, Wednesday
HEADLINE: Dr. Paul Lavoie; Lyme disease specialist

Dr. Paul Emile Lavoie, a prominent figure in the research and treatment
of Lyme disease, died Sunday of pancreatic cancer in his Mill Valley

Dr. Lavoie, 60, was a clinical professor of medicine at UCSF and a
founding fellow of the American Rheumatology Association.

In 1977, he was credited with diagnosing the first two cases of the
tick-transmitted Lyme disease in the Far West. His honors included the
Distinguished Physician Award from the Lyme Disease Resource Center and
the Lyme Disease Foundation.  The latter established an annual award
in his name.

Dr. Lavoie, a native of Fall River, Mass., earned his bachelor's degree
in electrical engineering from the University of Colorado and his
medical degree from Hahneman Medical College in Philadelphia in 1969.
He completed his postgraduate training in internal medicine and
rheumatology at UCSF.

An Air Force veteran, Dr. Lavoie was chief of hospital services at
Moffitt Field, and in Operation Desert Storm he commanded the non-
deployed hospital contingent. He retired as a colonel in the Air
National Guard.

He leaves his wife of 39 years, Margaret, and three children, Suzanne
Lavoie of Oakland, John-Paul Emile Lavoie of San Rafael and Elizabeth
Valerie of Los Angeles.



IV.   NY TIMES: (Letter) We Minimize Lyme Disease at Our Peril;
      Cooperation Needed
DATE: January 19, 1994, Wednesday
SECTION: Section A; Page 20; Column 5; Editorial Desk

To the Editor:

Now that the controversy within the medical profession about Lyme
disease and the dilemma facing patients concerning its diagnosis and
treatment have been aired on your Jan. 4 front page, perhaps something
constructive can come of all this.

Unfortunately, you omit an important piece of information.  The
situation among Lyme disease patients is often desperate.  Parents
knowingly expose their children to the risk of serious complications
from prolonged courses of intravenous antibiotics because all other
treatments have been exhausted and still their children are very ill.
Despite thorough medical testing, no diagnosis other than Lyme disease
has been found to explain the debilitating physical conditions of their

The regrettable yet simple explanation for this medical quagmire is
that in certain areas of the country where Lyme disease is endemic,
such as the Northeast, a significant number of individuals of all ages
have been afflicted with a disease that is often difficult to diagnose
and difficult to treat.  If not treated properly, Lyme disease can
result in severe disabilities and even death.  It is ironic that many
of those doctors who criticize other members of their profession for
allegedly overdiagnosing Lyme disease and mistreating patients are the
same doctors whose treatment failures fill the patient ranks of the
doctors they criticize.

As a parent who has lived through a four-and-a-half-year nightmare
called Lyme disease and whose daughter appears to be on the mend under
the care of Dr. Dorothy Pietrucha, I urge the competing medical camps
to work together, not at cross purposes.  Lyme disease is too serious
a public health threat to allow professional rivalries to retard the
advance of medical science.  Doctors should share treatment data and
work together to enlist the much-needed research funds.  Their patients
deserve nothing less.

New York, Jan. 6, 1994


V.    TIMES-PICAYUNE: Officials Won't Aid Inmate Who Needs New Heart
DATE: January 30, 1994 Sunday

DeWayne Murphy needs a heart transplant.

Everyone says so.  Doctors, lawyers, his family - even the warden at
the Federal Medical Center in Rochester, Minn., where Murphy is locked
up - say the Clay County man will die unless he gets a new heart.

But Murphy, 33, who has congestive heart failure caused by Lyme
disease, is not even on a list of transplant candidates.  Although
doctors report his condition is worsening, authorities oppose all
attempts to get him the operation.

Warden William Hedrick says the Bureau of Prisons does not provide
heart transplants to inmates.

But some people familiar with the case say it comes down to this: Few
hearts are available for transplants. Law-abiding citizens and children
come first.

There's no room in the lifeboat for Murphy.

He was caught three times with large amounts of methamphetamine - the
last time after he had pleaded guilty to possession with intent to
distribute.  He could have gotten 40 years but was sentenced to four -
leniency from the judge because of his health.

Now the drug history and defiant behavior appear to have slammed the
door on pleas from Murphy's mother and his attorneys.

Murphy's release is scheduled Aug. 1, 1996.  If doctors are correct,
he will be dead before then.

"No question, this is a tragic case," said Chris Whitley, spokesman for
the U.S. attorney's office in Kansas City, Mo., which prosecuted
Murphy.  "But does he deserve our sympathy?  Given his behavior, he's
exhausted our sympathy."

The case is out of the Kansas City office's hands, Whitley said.



VI.   Q&A: Roxithromycin and Lyme

My wife and I appreciate the efforts behind the LymeNet newsletter
and have found many interesting bits of information in them.  We have
some comments with respect to the treatment of lyme with roxithromycin.

The facts:

1) We contracted Lyme in 1980 while working at Long Point, Ontario (a
   known Lyme hot spot in Canada) during the summer.

2) I became very sick that fall, but the doctors failed to diagnose
   any disease.  After two months I 'completely' recovered.  Initially
   my wife didn't get as sick -- rather, she experienced (almost
   continual) low grade flus, fevers, etc. that, over time,
   progressively became more debilitating.

3) By 1986 the symptoms were such that my wife could not work at all.
   After reading an article in Equinox we recognized that she had Lyme
   disease.  After a specialist, who just moved to Vancouver from
   Harvard, confirmed the diagnosis, treatment began.

4) My symptoms, which had been very minor since the initial flare up,
   became more evident and rapidly progressively worse.  Around 1988
   I was diagnosed with Lyme.

5) For several years we went through just about EVERY antibiotic, both
   {*filter*}and IV. In every case we found that after some initial
   suppression, our symptoms flared up and then continued to progress.
   The only antibiotic which has continued to suppress the symptoms,
   and has continued to provide slow but steady overall improvement,
   has been Roxithromycin.

Under our doctors direction we take four (4) tablets a day, along with
some Bactrim.  The Roxi appears to have had no side affects, even after
taking it for several months.  The scientific literature gives the
impression that Roxi is not an effective antibiotic against lyme --
we definitely have a counter experience, one that suggests that Roxi
be given serious consideration by Lyme patients who find that other
antibiotics fail to provide relief.

PS: What is the current situation with respect to the usefulness of
heat therapy as an effective treatment for lyme?

Once again, many thanks for the LymeNnet and the efforts that those in
charge are putting into it.


VII.  Q&A: Seronegative Lyme?

I am a new subscriber who has not yet read all back issues of this
newsletter.  Forgive me if this has already been covered.

I am one of those people who has many of the symptoms of Lyme Disease,
but no rash and no positive test.  Consequently I have had some
trouble being taken seriously.  I respond well to antibiotics and am
now 11 days into a 28-day regimen of IV Rocephin.  I hope this will
take care of it once and for all.  My question is about the new test.
I've read that it is reliable, and my doctor wants me to have it done.
Will the fact that I've been taking antibiotics ({*filter*}and IV) for 3
months affect the result?  I've read that they take joint fluid from
the knee.  My knees don't hurt.  My hips and hands are the joints
affected.  Does this mean that the result could be negative even if I
have Lyme Disease?


VIII. Q&A: Lyme Vaccine Testing

This is a follow-up to article V; "Lyme Vaccine Ready for Testing" in
your last issue.

The West Chester County Medical Center, located in Valhalla NY, just
north of White Plains, is also participating in the current vaccine
study sponsored by Connaught.  They are planning to begin their program
between the end of February and the beginning of March, and are
currently seeking volunteers.  I believe that the study will involve
two visits to the center by volunteers; an initial screening/
vaccination and one follow-up visit.  If a participant is bitten by a
tick and develops Lyme disease, treatment will be provided by the
center free of charge. Residents of the surrounding areas interested
in participating in this study should call (914) 285-1783 for
additional information. (This is an answering machine; your call will
be returned at a time that is convenient for you.)

There is also a separate "Westchester County Lyme Disease Hotline" with
an informational message about how to avoid Lyme Disease, the symptoms
of Lyme Disease, and contact numbers for various New York counties. The
number for this hotline is (914) 593-5963.


IX.   Q&A: Support Group Listings

Would you be able to publish all of the Lyme disease support groups
that you are aware of nationwide?  Thanks

Ed. -- The Lyme Disease Network maintains a current listing of support
groups.  They can be reached at 908-390-5027.  In addition, Denise
Lang's recently published book entitled "Coping with Lyme Disease"
(reviewed in Newsletter vol#1 #20) provides readers with a list of
support groups in Appendix A.  However, The National LymeNet, the
Lyme Disease Network's new computer network, will provide a current
listing of support groups nationwide available 24 hours a day.
The National LymeNet will begin beta testing on Saturday, and is
expected to be widely available next month.

Anyone with an Internet address may subscribe.

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Sat, 03 Aug 1996 06:17:11 GMT
 [ 1 post ] 

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