Shown: posts 1 to 6 of 6. This is the beginning of the thread.
Posted by Phillipa on November 20, 2005, at 21:22:29
Just had bloodwork at my new internist's. My ANA is slightly elevated at l:l60 but my lymes western blot was positive again. Do you think this means more IV antibiotics again. No more pic line please. And to boot the lymes had been treated in the past by an Infection Control Specialist. The new doctor worked in a lyme's clinis in Westchester County and the only other one is in CT at Yale New Haven Hospital. He said a rheumatologist should have been treating me they crossover . Anyone know anything about lymes and tx? Fondly, Phillipa
Posted by Ilene on November 21, 2005, at 0:19:49
In reply to Lymes Titer Is Positive Again, posted by Phillipa on November 20, 2005, at 21:22:29
You might be interested in this:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5405a6.htmThis discusses Lyme treatment:
http://www.cdc.gov/ncidod/dvbid/lyme/IDSA2000.pdfI.
Posted by Phillipa on November 21, 2005, at 19:39:54
In reply to Re: Lymes Titer Is Positive Again » Phillipa, posted by Ilene on November 21, 2005, at 0:19:49
llene, Thanks so much for the links. I was treated with Biaxin and never appropriately treated. I do have osteoarthritis not rheumatoid and am always tired. And wonder if anxiety and depression are from this. I did get a lumbar puncture spinal fluid was okay. I've always wondered why I wasn't treated with penacillin. Guess I have to wait and see what the rheumatologist says. Thanks again. Fondly, Phillipa
Posted by lunesta on November 24, 2005, at 16:07:44
In reply to Lymes Titer Is Positive Again, posted by Phillipa on November 20, 2005, at 21:22:29
A lot of CFS-Fibromyalgia patients have Lyme disease as well. There is 2 sides of the argument : some people think they are opportunistic like mycoplasma , and some same Lyme is the cause of the others. Based on my research, I think it is opportunistic due to a dysregulated immune system. I am getting the PCR tests done by the best labs, since my previous tests were just Elisa with western blot if positive which is the worst idicator of chronic lyme.
Do you have a LLMD, doctor where you live? Many are in the northeast but i know where to get the list of some. lyme is pandemic despite what doctors say. Its pleomorphic, similar to mycoplasma, chylmidas and most of the bugs that CFS/FM/MCS/Gulf War Syndrome/ have.
It comes down to immune system dysfunction in the end. What kind of lyme test did you get>> Western blot? Was it by Igenex or Bowen?
Posted by lunesta on November 24, 2005, at 16:14:27
In reply to Re: Lymes Titer Is Positive Again » Phillipa, posted by Ilene on November 21, 2005, at 0:19:49
Quoted from co-cure list, the founder of Igenex, the best lyme tester out there, was audited and passed everything perfectly. The claims by the government are just not right. They know lyme is pandemic, but it only strikes people with weakened cellular immunity from what I have researched.
If its chronic, many sessions of antibiotics, IV, oral etc.. rotated may be needed. need a good LLMD, and pref. a CFS/FM specilist since all these diseases overlap to the point that there is probably a common immune variable at play.
Now the New York State Department of Health has opened an
investigation of the California laboratory, IGeneX Inc., that issued
Mr. Courcier's positive result, after receiving eight complaints from
doctors and patients who said its Lyme tests also gave them positive
results not confirmed by other labs' results.Concern about Lyme testing goes beyond New York State. This year the
Food and Drug Administration and the Centers for Disease Control and
Prevention released a warning about Lyme tests "whose accuracy and
clinical usefulness have not been adequately established."The warning did not mention IGeneX or any other lab by name. But Dr.
Paul Mead, a C.D.C. scientist who helped write it, said in a
telephone interview, "Quite simply, we're concerned that patients are
being misdiagnosed through the use of inaccurate laboratory tests."
He added that some of the tests and techniques used by IGeneX were
among those the agencies were concerned about.Nick Harris, the founder and chief executive of IGeneX, defended his
company's testing, saying that the federal guidelines miss many
patients who have Lyme disease.Guidelines from the disease control agency recommend Lyme testing
only when patients have symptoms and live in an area of the United
States where ticks are known to be infected with Borrelia
burgdorferi, the organism that causes the disease. Under the
guidelines, laboratories should first conduct a test called Elisa.
But the Elisa test often gives a false positive result, so the agency
also calls for a second, more sensitive test, the Western blot.The recent warning by the two federal agencies named some tests they
said had not proved useful or accurate. They noted, for instance,
that some laboratories performed a test called polymerase chain
reaction "on inappropriate specimens such as blood and urine." IGeneX
offers such tests on both blood and urine. The alert also warned
against methods of interpreting Western blots "that have not been
validated and published in peer-reviewed scientific literature."Nationally, reported cases of Lyme disease have more than doubled in
a decade, to at least 23,963 in 2003 (the most recent year for which
statistics are available) from fewer than 9,000 in 1993. Infectious
disease experts agree that infections have been on the rise, but they
worry that part the increase may be due to overdiagnosis.A misdiagnosis can have serious consequences. In some cases, Dr. Mead
said, Lou Gehrig's disease was misdiagnosed as Lyme by unproved
tests. The patients in those cases, he said, wasted thousands of
dollars on ineffective treatment. The antibiotics used to treat Lyme
disease can also cause complications, including severe allergic
reactions.Some doctors and patients, however, have a different concern. They
believe Lyme is often missed by the traditional tests recommended in
C.D.C. guidelines.Dr. Harris, of IGeneX, estimated that his laboratory tested 50,000 to
75,000 patients each year. (Prices go up to $390 for a battery of
tests it recommends.) "These are patients who have been bounced
around," he said. "A lot of them were undertreated at some time, and
their disease came back."Still, he went on, IGeneX runs the traditional tests accurately and
gives doctors guidelines for interpreting them both by the C.D.C.'s
conservative standard and by IGeneX's more liberal standard - even
though he asserted that the conservative standard would miss many
cases of chronic Lyme infection.He provided a reporter with a document showing that in each year
since 2000, IGeneX had achieved scores of at least 97 percent
accuracy on the Western blot and Elisa tests, well above the minimum
80 percent required by the state.But Robert Kenny, a spokesman for the State Department of Health,
said the agency was not convinced that IGeneX was performing the
recommended tests for the public in the same manner as it has been
performing them to pass the state's proficiency review.Moreover, Mr. Kenny said IGeneX had not supplied requested proof that
its urine antigen test can be used to accurately diagnose Lyme
disease.Dr. Harris says IGeneX has been working for more than two years to
supply New York State with the proof it wants. "It's been an
exceedingly long process that's nearing completion," he said. Dr.
Mead at the C.D.C. also confirmed that another laboratory, Bowen
Research and Training Institute Inc. of Tarpon Springs, Fla., went
beyond the agency's recommended tests.The State of Florida denied its application last year for a license
to perform tests meant to diagnose Lyme, but its founder and
president, Dr. JoAnne Whitaker, asserts that the tests it continues
to perform are for research purposes only.Some patients insist that IGeneX's tests have been instrumental in
detecting the Lyme disease that other laboratories missed. One such
patient is Ronald Hamlen, 64, a plant biologist from Maryland who
worked at DuPont for 22 years before retiring recently. Tests run by
IGeneX, he said, detected Lyme disease that was missed by other
laboratories."If I had not had the positive result at IGeneX, I seriously question
whether I would have been alive at this point," he said in a
telephone interview. Before getting tested by IGeneX and going on
intravenous antibiotics for 10 weeks, he said, "all I could do at
that point was lie on the couch."In contrast, Mr. Courcier's odyssey into the Lyme testing labyrinth
began last year on the Sunday after Thanksgiving, when a severe pain
in his leg led him to seek care at a walk-in clinic. Preliminary
diagnoses of phlebitis and muscle strain proved inaccurate, and as
the pain increased and spread, he finally went to the Mayo Clinic.Doctors there told him that an initial test for Lyme disease came
back negative, but they could offer no other clear diagnosis for what
was ailing him.Back home in Texas, Mr. Courcier was referred to a neurologist
specializing in Lyme disease. The neurologist sent samples of his
blood to IGeneX, as well as to Quest Diagnostics, one of the
country's largest medical testing companies. Each lab followed the
two-step process recommended by the C.D.C.IGeneX and Quest Diagnostics performed the Elisa and the Western blot
tests on Mr. Courcier's samples. The Elisa came back positive from
both labs, suggesting that Mr. Courcier might have antibodies to B.
burgdorferi.On the Western blot tests, however, IGeneX sent back positive
results, while the Quest testing came back negative.Although his doctor started him on antibiotics to treat the possible
infection, Mr. Courcier was encouraged by a colleague to visit Dr.
Gary Wormser, chief of the division of infectious diseases at New
York Medical College in Valhalla, for another opinion. Dr. Wormser
repeated the Western blot test and told him in June that he did not
have Lyme disease.At first, Mr. Courcier did not know whom to trust, and he remained on
the antibiotics therapy prescribed by his doctor in Texas. But by
July he concluded that he did not have Lyme disease and stopped
taking the antibiotics, which he said were only making him feel
worse."It's been a hell of an emotional roller coaster," said Mr. Courcier,
who conceded that it was a comfort for a while to have a definite
explanation for the pain and exhaustion that continue to plague him.Dr. Mead of the C.D.C. said he sympathized with Mr. Courcier's
plight. But for now, he said, patients and physicians should rely on
the recommended two-step process. The tests, he said, are accurate in
more than 90 percent of cases of long-term Lyme infection.But he added that he was still troubled by the dispute. "We don't
want to be absolutely dogmatic that it's our way or the highway," he
said. "At the same time, it's clear there are tests out there for
which there is really precious little to support their accuracy."Copyright 2005 The New York Times Company Home
Posted by Phillipa on November 24, 2005, at 22:15:01
In reply to Re: Lymes Titer Is Positive Again » Ilene, posted by lunesta on November 24, 2005, at 16:14:27
My Western Blot was positive again. But I don't know what lab was used as it's sent out isn't it? They also ran an antiDNA. I have had an ANA as high as 2880? Over two thousand anyway. It's l:l60now. Which can be considered normal. Test negative to autoimmune diseases. The internist who is referring me to a rheumatologist said he worked at one of the only two lyme's clinics in the US. It was in Westchester County NY. Fondly, Phillipa
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