linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Has anyone out there had a false positive for lyme? It is my understanding from Dr. C's research on 700 pts. that he only found 3% had a false positive. He says false negatives are much more common.
The reason I ask is, at a recent llmd appt. the doc said he thinks my son's test ( pos. for both IgG and IgM from Igenex ) is a false positive. His CD-57 was also low - 45. He says treat the pt. not the test.
He says my son's symptoms are more bartonella- related. So he's now being treated for bart. I have been tested for lyme and have a positive diagnosis - the doc seems sure about mine.
We have thought my son was born with it. I've had it 20 years and doc also thinks I have bart. Is it possible for a mom with co-infections to pass on one tick-borne disease to a baby, but not another, ie. bart but not lyme?
I just can't get past the 'false positive' test, the low CD-57, and the fact that I gave birth to him.
Has anyone had a similar experience where the tests were so far off, and didn't validate the symptoms you were having?
I would be so grateful if my son was part of the 3% of false positives, but it all doesn't seem to fit. Thanks for any info.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
That's a little strange. I'd say a positiive IgG AND IgM isn't false positive!!! But I'm not a doctor...
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
If he believes it is a false positive, then test for C6 Antibodies... if you're positive for this you have an active lyme infection, period.
Posts: 80 | From Canada | Registered: Mar 2009
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bettyg
Unregistered
posted
this link may help you; not sure ... betty
Tick Specialty Labs: Too Many Positive Findings? They Save Lives By James S., MD, MAR, PA, DABPN, DABFM
I asked Dr. Harris, from the internationally respected, IGeneX labs, to reply to the dubious comment that IGeneX "only has positive findings."
This is not valid for many reasons. First, many physicians using IGeneX get negative results. Further, IGenex has done quality assurance studies with appropriate negative findings in uninfected controls. And the company, as you can see below, has done a great deal to be certified and licensed.
The "all results are positive comment" is lazy, sloppy and uninformed. Lyme is the leading vector illness in the USA. A positive result should not be rare. ********* IGeneX, Inc. is a reference laboratory located in Palo Alto, California specializing in Lyme disease and other tick-borne diseases. We take pride in the quality and diversity of the testing that we perform on samples from around the world.
IGeneX is licensed by CMS (Centers for Medicare and Medicaid Services) and is strictly regulated by CLIA. We are licensed in all states, including California, New York, Pennsylvania, Maryland, and Florida where special licensing is required.
The laboratory is inspected by these state and federal agencies on a regular basis. A Ph.D. consultant is also used to ensure that our laboratory is current with all the compliance regulations.
IGeneX participates in all proficiency programs required, such as New York State. Independent specialty laboratories, such as IGeneX, who have a narrow focus in testing, typically are not certified by CAP, but we do participate in the CAP Proficiency programs.
IGeneX has been testing clinical samples for over 11 years. The staff consists of a Laboratory Director, an MD Clinical Consultant, and several other MDs who also are licensed Clinical Laboratory Scientists who manufacture and perform tests. The personnel responsible for the test quality and performance are all licensed Clinical Laboratory Scientists, most of whom have been with IGeneX for many years. Our Research team is comprised of qualified PhDs and MDs and experienced Research Associates.
Customer Service is our main goal and the office staff is always willing to assist our patients and physicians. We take pride in our trained personnel that have worked together for years.
IGeneX is continually working on the advancement of existing tests. In addition, IGeneX is committed to designing and researching new technologies and opportunities. Our goal is to give Lyme patients and their physicians state-of-the-art tools for diagnosis of Lyme and other tick-related diseases. -------------- [Steve Andison Comment] The Federal Center for Disease Control periodically ships identified samples of what they know to be positive and negative samples to IGeneX to determine the accuracy of their testing procedures.
Their accuracy rate for both positives and negatives is unsurpassed by any facility in the United States and with their state-of-the-art techniques and equipment, they may be the most accurate lab for diseases carried by ticks.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"I just can't get past the 'false positive' test,"
I normally wouldn't question a LLMD.. but if the LLMD has seen 1,000 Lyme tests, I've seen 5,000. I am not kidding.
I've yet to see a false positive.
I've seen doctors THINK it could be... but have not seen a patient that had a positive test, NOT have Lyme.
I wouldn't give up on your gut feeling.
I might even.. if this were MY situation...
Give the child an antibiotic challenge- like when being treated for bartonella...
And do an IgeneX urine test.
In MY mind this would be confirmatory IF positive. If negative, just another test that didn't detect it.
BTW- I am NOT a doctor. I am not a lab tech.
But I do have a little bit of experience with Lyme stuff fro a patient's perspective.
I hope you find answers.
And mostly, I hope your child is feeling better soon.
posted
My 18 year old daughter tested positive for Lyme IGM through Quest. I wanted confirmation so we did an Igenex test and it was negative (although LLMD said it is suggestive of Lyme).
For now we are treating with Cumanda and will add Quina soon since Babesia is suspected.
She basically feels fine but had a very swollen pinky finger and had not had an injury.
--Judy
Posts: 67 | From Maryland | Registered: Jun 2003
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
It is my understanding that to get a false-positive Western Blot, you need to have another spirochetal disease (syphylis, leptospirosis, or advanced gum disease) and/or another disease that cross-reacts with some of the non-species-specific WB bands.
So your son's LLMD would be able to differentially diagnose for those other diseases to determine what would cause this so-called "false positive". According to the studies I have read, the illnesses that can cause cross-reactivity can be easily recognized through clinical evaluation and testing.
Personally, it sounds to me that the LLMD doesn't fully understand the concept behind false-positive Lyme Western Blots.
Also, the odds of having one tick-borne disease and not having the most common tick-borne-disease (Lyme) along with it, are extremely, extremely, slim.
Oh - If your son had ANY Lyme-specific bands come up positive, nothing else can cause that. In that case, it is most definitely NOT a false-positive.
I am not a Doctor or an expert, but this is my understanding based on what I have read from LLMDs and medical studies. Hopefully others can speak to this as well.
posted
I'd see about finding a new LLMD. Pretty much the only way to get a false positive is with another another spirochete (e.g. another relapsing fever, a syphils, or leptospirosis), and, according to what I've read, a low CD57 is Lyme-specific.
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posted
You mention that he is lyme-literate... it suggests that he does have a specific reason for suspecting a false positive.
Can you tell us what bands came up positive in your son's test? Also, what was his ELISA result, and what symptoms does he have?
While a false positive is very rare, it is not unheard of. Can you fill us in on more background as to *why* your LLMD would think this?
I am not an immunologist, but if you believe that you may have been infected with lyme while you were pregnant with him, is it possible that he could have received antibodies from you without necessarily getting the lyme bacteria? That would be one way to account for the presence of antibodies in the absence of disease. (I'm not sure that it works that way, though!)
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Is there a chance that the medical board in your state is pressuring your doctor and he may feel that the only way to treat is to step to the side and treat another tick-borne infection.
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
The llmd, who is highly respected, and follows Dr. J's protocol has many patients in remission. He believes my son doesn't present like most lyme patients.
He did not herx on the antibiotic challenge. One day on high doses of flagyl, and two days on high doses of biaxin.
The day after the challenge, almost 24 hours later, he got an upset stomach and threw up, then was fine. Other than that, he had no worsening of symptoms.
The doc didn't think he had a herx. He and the nurse both said, if they're gonna herx, they usually do so during the three-day challenge.
Our doc says most pts. who have lyme are much 'sicker' than my son. He is fairly 'high-functioning.'
He has awful sleep patterns, a recent sleep study showed no rem sleep at all, difficulty getting to sleep, and staying asleep. So he is extememly sleep-deprived.
He has cognitive difficulties, lack of focus, poor memory, oppositional behavior, and tremors. He is very pale and thin, and has no appetite.
He has low energy, but can still function. He will crash and burn after a long weekend, sleep over etc., and sleep for hours. I understand that bartonella causes lots of sleep problems, and cognitive difficulties.
He got into a bunch of seed ticks a few years ago at camp and got three bulls-eye rashes on his ankles. They came up almost immediatley-in a couple of days.
The pediatrician, not llmd, at the time put him on doxy for a couple of weeks. Maybe it wasn't long enough?
As a mom, I have always believed there was something physiologically wrong, but the docs always wanted to tag him as adhd. The stimulants just make him 10x worse, can't tolerate them at all.
The doc said some pts. do have mild cases of lyme, so I don't think he has ruled it out completely. He says the bactrim, which he prescibed with the rifampin, works on lyme too.
He is taking both meds without too much trouble , with the exception of feeling rotten the first two days he took them.
No herxes yet, for which we are grateful. Is herxing a necessary evil with this disease, or do some improve without them?
Also no improvement in symptoms, however he's just been on meds a few weeks.
He was on zithromax for 5 weeks before current treatment with no improvement at all.
I know Igenex is a very reputable lab, so I hesitate to question results. We did not get an Elisa test and only used Igenex.
I do not know which bands tested positive, I am fairly new at this and didn't think to ask. I will definately ask at the next appt.
Will also ask about the urine test and the C6 antibody test. Didn't know about any of that either!
I had the disease before I got pregnant with him, so I didn't get it while pregnant. Don't know if that makes a difference. Also didn't know it was possible to pass antibodies, but not the bacteria to the baby?
Guess I'm still pretty clueless. This is so complicated. I am grateful for all of you and your feedback! Thanks so much. God bless.
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