Why All The False Negative Test Results In Lyme Disease Testing?

Current Lyme testing is very inaccurate, especially in those with a long-term chronic illness. Lyme disease has always been meant to be a clinical diagnosis, and not based upon blood tests. From their inception, the blood tests designed by the Center for Disease Control (CDC) were known to be very flawed (the CDC even states this on their site). The designer of the Lyme blood tests has said in interviews that he knew the Western Blot was a terribly flawed test for Lyme disease and that when he tried to get funding for a more sensitive and specific test, he was declined by the CDC.

What many people do not know is that when you are tested for Lyme disease through a hospital or commercial lab throughout the country, there is a 2-step process (most doctors do not tell this to their patients). First, the lab will perform the Lyme enzyme-linked immunosorbent assay (ELISA) to screen for Lyme disease. If you test positive on the ELISA test, they will then perform the Western Blot test. Now, why this 2-step process is so flawed is that the ELISA blood test is known to miss 50% of the cases due to the assay’s lack of sensitivity and variability with antibiotic treatment. So, if you don’t test positive on the ELISA, then they will not perform the Western Blot test. But it gets better! The Western Blot test itself is flawed as well:

“The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease…

“…Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.”(ILADS.com)

You should be aware that many people with Lyme disease are actually asymptomatic and Lyme can have a long latency period where symptoms can present themselves many years later after the initial infection or bite.

I was first tested for Lyme disease in 2005 – about 9 months after falling ill. The results came back with my having 3 positive bands on the Western Blot and was told it was not significant as this did not meet the CDC’s requirement of 5 positive bands; therefore, “I could not have Lyme disease”. I was retested for Lyme disease 4 years later – in the summer of 2009 – and this time I had 7 positive bands on the Western Blot (I had 5 bands that the CDC considers as being counted toward a positive Lyme test). I was retested through IGeneX, a lab in California that has more sensitive and specific tests for Lyme disease. Now, the Lyme disinformation group, a la IDSA, would like people to think that somehow IGeneX is messing with the tests as “too many people test positive” through IGeneX. Well, the IGeneX tests for Lyme disease and other tick-borne diseases were designed differently than the inferior tests used predominantly throughout the world, such as IGeneX’s use of more than one strain of Borrelia burgdorferi to prepare their Western Blot strips. They also designed their tests to pick up not just early Lyme, but all stages of the disease. IGeneX is not some fringe lab that is evading the watchful eye of the government, rather, as they state clearly on their website, “Our laboratory is regularly inspected and recertified to perform high complexity testing. To further monitor our effectiveness, we have frequent inspections by outside consultants who were former state and federal laboratory inspectors or laboratory directors.” Even though IGeneX is the preferred lab for Lyme disease testing for most Lyme Literate doctors(LLMDs), no test for Lyme disease is 100% reliable and they can still miss cases of Lyme (see “Lyme Testing” on my toolbar above for more reasons why some people will never test positive on current Lyme disease tests even if they have Lyme disease).

Pamela Weintraub, author of Cure Unknown: Inside the Lyme Epidemic (amazing book), wrote a wonderfully thorough article on why current tests for Lyme disease produce so many false negatives. Here is a snippet from the article:

“The answers won’t be found in the twentieth-century technology of the Western blot, by today’s standards crude yet still trotted out by IDSA as evidence absolute that they are right. (The Western blot for Lyme is so flawed that even its major manufacturer says he has found numerous “band” patterns more accurate than the one in use today.) Instead of relying on flawed 20th century technology, we must look to the science of the twenty-first century, including state-of-the-art genomics and proteomics that allows for the sequencing of every gene and protein involved in every stage of Lyme. With evidence of this calibre we won’t have to fight over the truth: We will know what’s going on.

“What we will find,” says Ben Luft of Stony Brook, “are proteins we never tested for on our ELISAs and Western blots—proteins we were never even aware of. But they will be the critical markers for invasive, infectious Lyme disease. Perhaps people who test negative on the old tests will become positive when we look for the right markers,” he adds.”

To read the entire article, click here.

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9 comments for “Why All The False Negative Test Results In Lyme Disease Testing?

  1. alex j clark
    July 23, 2012 at 9:10 pm

    Im in virginia and cant get a doctor to look at me serious for my disease. But when my symptoms get so bad like meningitis symptoms they give me the doxy i dont get it. Then blood test thats a way to get paid more its always negative. If its in my head then why give me a medicine for lymes . Is it insurance or is lymes the new cancer?

    • hellen
      October 18, 2013 at 10:57 pm

      This is a late posting but if you didn’t find any good doctors until now you can take a look at this practice.I have just started but they seem that they know what they are talking about .

      https://secure.intmednova.com/portal/default.aspx

  2. Hoyt Androes
    June 24, 2013 at 10:07 pm

    Lyme disease can affect multiple body systems and produce a range of symptoms. Not all patients with Lyme disease will have all symptoms, and many of the symptoms are not specific to Lyme disease, but can occur with other diseases as well. The incubation period from infection to the onset of symptoms is usually one to two weeks, but can be much shorter (days), or much longer (months to years).*::`

    Remember to look out for our own internet site
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  3. john t neisworth
    July 25, 2013 at 2:44 pm

    My son was recently bitten by a tick, …then developed the characteristic rash and related symptoms/signs. One clinic was mystified, and sent him away (after billing him $106 for nothing but 15 minutes of time.
    I was also bitten by ticks about 18 months ago, thought nothing abut it (at that time, Lymes was not so prevalent here in central Pennsylvania). Over that period of 18 months, I have been suffering from blurred vision, stiff neck, motor coordination issues, peripheral neuropathy,.and feeling very lethargic. MY neurologist just now had me screened for Lymes: negative. I will tell him at my next appointment, in two weeks, that I don’t believe the screen. Your website gives me some of the material I need to show him.
    CAN YOU SUGGEST ANY OTHER COMPELLING INFORMATION THAT MAY PERSUADE THE DOCTOR (WHO SEEMS SYMPATHETIC) TO ORDER BETTER TESTING?
    THANKS SO MUCH.

  4. Gene B.
    August 15, 2013 at 6:52 pm

    The Western Blot is worthless because lines 31, and 34 are omitted. This automatically flaws the test. People’s lives are on the line, and the CDC does not care.

  5. Kay
    April 8, 2014 at 2:54 pm

    I am (was) a healthy, extremely active, “outsoorsy”, 29 year old female. I had a baby in November 2012.
    All blood work is coming back normal (other than EBV positive from past virus). I’ve had three blood tests done ELISA twice and Western Blot once, and so far negative for lyme.
    I lived just outside of Milwaukee WI until Feb. had deer in my backyard daily and three large dogs who sleep in my bed when my husband is away. I was outside daily during the summer of 2013. My problems began in October 2013 with tingling in legs, headaches, and insomnia, and has gotten progressively worse. I’m now living in South FL (husband was transferred with his company in Feb) After establishibg a new PP and doing all the blood work – he referred me to a neurologist and a rheumatologist. So far tests are coming back normal. Although, back xray showed I have scoliosis (which I was unaware of), and I had a reading on the nerve conduction test that showed three “pinched nerves”… Neuro said it looked like readings from someone who had a whiplash injury. I’ve had no accidents so this doesn’t make sense to me. I’m waiting on results from my MRI of my spine regarding this. Rheumatologist is doing a bunch of blood work of his own, but mentioned Fibro during my consultation. I’m so frustrated!
    I’m hoping that someone might be able to help me!?!
    I have tons of strange symptoms: Twitching muscles, aching muscles, sore joints (worse on left leg and left hand/arm – knee and hand are the worst), joints popping all the time (including spine), cramping in calves, occasional muscle weakness in left arm/hand/leg, tooth pain- like I’m biting into an ice cream cone for hours at a time — this is HORRIBLE, jaw pain, parathesia in legs (left leg worse), pain that moves around, swollen & tender lymph nodes (they are always a bit swollen but they get larger and smaller throughout the day) headaches, lightheadedness, insomnia, fatigue, left side chest pain, anxiety, brain fog, and more everyday it seems to be something new. Some symptoms linger, some go away and come back. I never have all of them at once (Thank God!) But, I’m so tired. I have a 17 month old baby and I need help!! I feel like I’m dying. I was a totally heathy, “normal”, happy mother until October and things seem to be spiraling. I used to work out and run (outside mostly) 5 days a week, and run marathons. Now I’m having a hard time walking a mile. I never had ANY of these issues before. Not one! And I slept like a baby.
    EMG – normal
    Tons of blood work – normal other than thyroid a bit off (hypo), and EBV (in the past) positive
    Lower back X-ray- scoliosis (otherwise normal)
    Nerve conduction – 3 delays (one cervical and two lumbar) no history of accidents and negative for neuropathy
    Cervical and Lumbar MRI – waiting to hear
    Rheumatologist – waiting to hear
    Neuro gas me taking my temps in the AM and I haven’t had one reading over 97.6 (even later in the day)
    Hypothyroid
    Asthma
    Allergies

    Any help/advice/personal experiences you could give me would be appreciated. I want my life back.

  6. Kay
    April 8, 2014 at 3:16 pm

    ^^ I forgot to mention, I also had shingles and a UTI in December 2013

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