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What’s the meaning of this?


Could it be that they are making their tests prone to positive results?

(I'm not gonna go as far as question if they're altering the results, but if you follow the money then you can't deny the fact that there is reason to suspect that they might be making biased tests.

And the people who do have they're tests done at igenex are usually those that anyway know that they have lymes, they have all the symptoms and are already feeling sick. All they're trying to do is confirm with a blood test -- which as we know is highly inaccurate. So could it be that igenex is cashing out on desperate people, or do they really have the magic formula for testing Lymes? [I guess you might be able to say the same for LLMD’s what's so good about a LLMD? it all depends on the blood test! if its positive take med. if not, then not! i'm not quite getting it. what can the "LLMD" do that another doctor can't do besides perscribe antibiotics?
or is that it. the LLMD will perscribe, and the reg. doctor will not?

where is the info that the LLMD apparantly knows that the reg. dr. doesn't? is it that you don't have to study Lyme in order to get your dr. license, so many doctors don't study it and therefore don't know about it?
its not like lyme disease is some kind of situation that requires a procedure for which you would need a professional. from what i understand there's 2 things that have to be done. 1) Diagnosis. 2) Treatment.
How does the LLMD know how much med. to prescribe, and when to stop? from the blood tests! sodo i have to go to a LLMD for a blood test? Technically speaking all i need to do is go to my dr. take the blood tests for all those tick-borne bacteria, and if i test positive to any of them take medication until my blood tests come back negative. so in essence there is nothing here that the LLMD knows that i don't already know.
just trying to understand. please excuse my dragging.])
Hi 1Q- i do not have all the knowledge of people like it'smylife but I will say that I found a HUGE difference between the 'usual' docs and the LLMD. I wrote a paper to help others understand what I wish they had looked for. I agree with others- the difference for me is in the treatment. But if a doc cannot recognize the illness, they cannot even begin to treat! Here it is.

What I wish my doctors knew about Persistent Lyme Disease


The intent of this paper is not to complain about the medical professionals who have sincerely applied their efforts on my behalf. I have done many hours of layman’s research on Lyme and have found that Lyme Disease is a very misunderstood and controversial disease. It is now obvious that I have experienced medical professionals who do not believe Persistent Lyme Disease(LD) exists and some who are open to the idea but are unaware of what it can look like. “Hindsight is 20-20”. My intent is to let medical professionals know what clues were present during my diagnostic process that should point them in the LD direction for others with similar presentations. Lyme patient boards on the internet are overflowing with pleas for better understanding in the healthcare community about this disease. This is my small effort to help.

LD is called ‘the great imitator’. It has many faces and has been mistaken for CFS, Fibromyalgia, MS, serious psychological diseases and more. It is a complex, multi symptom disease that can (and does) affect every part of the body. The symptoms I have are common and indicative but there are many symptoms of LD that I do not have or developed later so my earlier doctors were not made aware of them. Lyme often comes with co-infections that present a different appearance. LD affected me mostly and firstly in my neural system rather than my joints, which is a more commonly recognized LD symptom.

It is most like MS but….

MS seemed to be the first disease my doctors thought of. In addition to clean MRI’s, I was told that my problems were “most like MS but not quite” and thus received a diagnosis of Conversion Disorder. Here are some quotes from my doctors about my symptoms that actually indicated LD.

“Your symptoms jump around too much to be MS” LD symptoms DO jump around a lot.
“Your symptoms do not peak in the afternoon which is usual in MS” It is common for LD symptoms to be at their worst in bed late at night and in the am.
“People with MS cannot target the day they became ill” No, but people with LD can. It is common to hit hard and suddenly.
“Your symptoms should not be presenting in every area of your body “ Unlike MS which generally affects specific locations were the Myelin has been compromised, LD affects the entire body.


It all adds up…..

Taken separately, the symptoms and factors below may be indicative of nothing or indicative of a different problem. However, taken together, they paint a picture of LD. These items were dismissed or not asked about except by my LLMD.
Factors
• I belong to the Audobon Society and live next to a field on a wooded lot.
• 3 other members of my family have presented with the classic ‘Bullseye’ rash and have been treated for Lyme.
• My symptoms started 1 month after I stopped taking antibiotics for 9 years for acne.
• My original ELISA was equivocal
Symptom Hints not recognized
• I went to a naturopath who identified a potential adrenal problem. My cortisol test resulted in very depressed numbers.
• Night sweats, overreaction to alcohol, total body engagement
• My symptoms would spike roughly every 4 weeks and then plateau at a new level. I told 2 of my doctors that I felt like I was being increasingly poisoned. The Bb reproduction cycle is 4 weeks.

Controversy surrounding Lyme tests
Again, quotes from my doctors that demonstrate common understanding about Lyme test results. I found extensive information on the web that indicates significant confusion and controversy on this. I focus on IgG.

“With the degree of your symptoms, your Lyme tests should be through the roof”
“It’s not Lyme, your western Blot is negative

• No matter what is believed about persistent LD, it is agreed throughout the Lyme community, the government and in general medical circles that the current Lyme tests are far from 100% accurate. The CDC recognizes this but for some reason, doctors trust the tests.
• The longer a person has had Lyme, the more likely the IgG will be negative. In it’s non walled form, the Bb has ‘hidden’ itself inside normal cells and the immune system is not aware that it is there. In some cases, a negative Western Blot will turn positive during intensive LD antibiotic treatment.
• For some reason, people who have had prior antibiotic therapy (like mine for acne) that did not eradicate the Lyme are more likely to have false negative Western Blots.
• There is significant controversy as to which antibody bands indicate Lyme. LLMDs recognize a different band configuration than most labs do for a positive result.

Thank you for taking the time to read this information.
[QUOTE]It is important to consider that information being in print does not necessarily mean the information is always reliable.[/QUOTE]

Agreed.

This article is from the San Francisco Chronicle, Dec. 10 2001.
By Sabin Russel

[B]Agency could shut lab tied to S.F. medical examiner
-- Lyme disease tests called unreliable[/B]

A Peninsula company with close ties to San Francisco Medical Examiner Boyd Stephens is being threatened with closure by federal regulators in the wake of long-standing complaints about unreliable tests for Lyme disease and other illnesses.
The federal agency that monitors the quality of medical testing labs had ordered Igenex Inc., of Palo Alto, to cease all testing as of last Friday. But that deadline has been lifted to give the company time to appeal. Igenex already had been cited this year for deficiencies in its testing and a lack of training among lab staffers.
The probe against Igenex could pose problems for Stephens, who serves as the company's medical director. Under sanctions proposed by the federal Centers for Medicare and Medicaid Services, he would be barred for two years from serving as director of any commercial laboratory.
As county medical examiner, Stephens is also in charge of San Francisco's forensics laboratory, which performs medical tests in criminal cases -- including blood alcohol tests for suspected drunken drivers.
Federal and state authorities responsible for monitoring the quality of commercial labs have no jurisdiction over crime labs. But sanctions on Stephens' moonlighting career could be used to challenge the results of the lab he runs by day.
"It isn't going to affect my work here as medical examiner," Stephens said yesterday. "But any time an organization is found not to be in compliance, it casts a pall. . . . I'm sure it will come up in court."
Igenex president Nick Harris would also be forbidden to own a clinical lab for the same period. The company could face fines of $3,000 a day, and its permission to bill Medicare and Medicaid for services would be revoked.
Igenex is one of the only private providers of Lyme disease tests. It is caught in a roiling national controversy that pits patients against medical authorities who contend that faulty Lyme disease tests are prompting thousands to seek costly antibiotic treatments for a disease they don't have.
The company has been in hot water for more than two years, since the New York state health department charged that its Lyme disease tests had failed a series of experimental challenges. California regulators also have been watching the company, citing it for inadequate training and quality control.
Harris said the effect of the latest regulatory actions would put him out of business.
"They are still salivating, trying to shut us down by the end of the year," said Harris, who contends his company has been the target of harassment by government and academic researchers who deny the scope of the Lyme disease epidemic.
"If they admit they are wrong, they'd have to admit they've mistreated an awful lot of patients," Harris said. "We give honest, sensitive answers, and we help a lot of people."
Igenex is staunchly supported by patient groups, many of them linked on the Internet, who are convinced that only 10 percent of the nation's Lyme disease cases are recognized and reported. Caused by a tick-borne bacteria, Lyme disease can cause serious arthritis-like symptoms as well as neurological and heart disorders.
Harris maintains that Igenex has never failed a proficiency test -- a controlled experiment in which the company runs its screens on samples known by monitors to be either positive or negative.
But documents obtained by The Chronicle show that, in the view of New York state health regulators, Igenex performed terribly on proficiency tests for both Lyme disease and babesiosis, a rare, malaria-like illness carried by the same ticks.
In April 2000, the New York Department of Health wrote Stephens that Igenex had failed a "proficiency challenge" involving 20 samples. The test failed to find two samples that had been "spiked" with Borrelia burgdorferi, the bacteria that cause Lyme disease. The tests incorrectly reported as positive four of 14 negative samples.
Similarly, the New York department had Igenex perform tests for Babesia microti, the bacteria that cause babesiosis. One type of test had a false positive rate of 80 percent, another of 50 percent. A third test using microscopic analysis had a 90 percent overall error rate.
"Igenex's results were clearly unsatisfactory and failed to meet even minimal standards for diagnostic testing," wrote Richard Jenny, acting director of the state's clinical laboratory evalution program.
In the ensuing period, Igenex was engaged in an ongoing battle with inspectors from California's Laboratory Field Services Unit, which monitors the safety and effectiveness of medical testing labs -- and works as an agent for federal regulators.
In April, federal regulators formally threatened to impose sanctions on Igenex for repeatedly failing to measure up after inspections found deficiencies -- many involving paperwork errors or lack of training among lab staffers. Payments from the Medicare program were suspended.
But in June, the Centers for Medicare and Medicaid Services dropped its case and reinstated Medicare payments, declaring that the lab was then "in minimal compliance" with federal rules. However, Igenex officials were also warned, "Your laboratory will not again be afforded such an excessively protracted time period to make corrections," should further inspections yield problems.
In September, another federal inspection uncovered new deficiencies, this time in quality control documentation. Just before Thanksgiving, the agency issued its order that all testing stop on Dec. 7 -- an order now on hold while the company attempts again to comply.
Word of the possible closure of Igenex is circulating in the Internet community of patients who support the company and believe their illnesses are being underdiagnosed across the country.
"We have concerns that this is the beginning of a witch hunt," said Pat Smith, a mother of two daughters who have been treated for Lyme disease for more than 13 years. She is president of the Lyme Disease Association, based in Jackson Township, N.J.
Smith feels that Igenex had finally been cleared of a raft of technical violations -- and then was slammed again. "It looks like double jeopardy to me, " she said.
San Francisco Medical Examiner Stephens, who has been medical director at Igenex and its predecessors for 20 years, also stood up for the company.
"This is a good laboratory. I have a great deal of faith in it," he said.
Stephens said the quality control issues leveled against the lab only came up with the controversy over Lyme disease diagnosis. He said the failed tests involving New York's health department were unfair because they were presented as research samples and thus were treated differently from a typical proficiency test.
"So much of this, I'm afraid to say, is largely political, rather than science," Stephens said.
Janice Caldwell, associate regional administrator for the Centers for Medicare and Medicaid Services, defends the federal action. The federal inspection, she said, found "too many of the same things" that state inspectors had previously found wrong with the laboratory.
"People advocating on their behalf do not know there is a long history of noncompliance. We are finally drawing a line in the sand," she said.





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