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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45 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

    • Dr. Manuel R. Lazo
      September 17, 2014 at 12:58 am

      Maybe you don’t have Lyme, you can have LEPTOSPIROSIS, is the sister of Lyme Disease and Sifilis, try to talk with your Doctor to make the MAT test for Leptospirosis.
      Please see the page spirochaetes.us
      Dr. Lazo

  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
    <http://picturesofherpes.covs

    • August 2, 2014 at 12:12 pm

      It absolutely is, Nick. Good qetusion. Lyme Disease has been endemic in parts of Massachusetts for over 20 years, and is quickly becoming so in New Hampshire and Maine.Unfortunately, most of the doctors in Maine are not Lyme Literate. The latest spread maps show the primary spread up along the coast, but that also happens to be where most people in Maine live.Since *many* doctors refuse to even test for Lyme, and then often use sub-standard tests which are highly inaccurate, reported cases are lower than they should be.Insurance companies and hospitals are claiming that Lyme is not a chronic disease and are punishing doctors who treat people for Lyme, which is another reason reporting of cases is low. Some doctors are treating Lyme, but under the table so to speak, saying a patient has another need for long-term antibiotics so that the insurance company will cover treatment and medication.

    • August 3, 2014 at 10:08 am

      You have got to be kidding me! CDC can go stgariht to hell! It’s not Lyme disease people, it’s nano tech poisoning. You get it by breathing the air, which is filled with this shit via chemtrails/geoengineering. Come on, wake the hell up! The CDC, with the help of the Rothchilds and the Rockefellers, the Bilderberg Group, Trilateral, Committee of 300, Committee of 100 and the rest of these NWO pricks are spending billions to cover up their crimes and blame little ticks for their sick bioweapon programs. It’s all a matter of public record, but screw that, just look up. Buy a microscope and check out the crap that’s falling from the sky. The author of this article is either a puppet dumb ass or paid by them as well.

  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.

    • August 3, 2014 at 1:06 pm

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    • August 4, 2014 at 7:20 pm

      HAHAH I know why the caged hoe sings sounds like a trehat..But Beautiful Nightmare is ominous too! LOL Love your articles and Pics (with props) Big up to Scott “Past Tense” Williams and Big up to you beautiful Vashtie.

    • Laura
      April 28, 2015 at 12:53 am

      Sounds like you have Lyme Disease. I had practically all of the symptoms you have. PLUS as the disease progressed I started getting really bad headaches, after which it affected how my brain worked. It started to literally drive me crazy. REALLY bad mood swings. One moment I’d have an outburst of rage, another moment I wouldn’t be able to stop crying… so, look out for mental changes. A Lyme doctor prescribed Lamictal and Celexa for the mental symptoms. If you can find a sympathetic doctor – one who will ignore the negative test results (my test came back negative, too) – see if you can get them to prescribe antibiotics. Tell them to please give it a try for 3 or 4 months to see what happens. If you have Lyme, your symptoms will start to go away. If not – he can take you off them, no harm done! The doctor I found has been treating Lyme for many years. He says doxycycline isn’t strong enough and uses different combinations, depending on what works best for each patient. I’m taking a combination of Biaxin XL ( generic: Clarithromycin ER) 500mg twice a day and Flagyl (generic: Metronidazole) 250mg 3 times a day. After a few months I could tell they were starting to work and I stayed on them for 18 months, so you might have to pay for them out of pocket if insurance won’t cover it.

      To get re tested – Go to the IGeneX lab website. I think they have forms you can print out that your doctor can use to order the tests. (my doctor already had forms for IGeneX) Take the script wherever you go to have your blood drawn. I think the order forms have specific instructions on how to draw the blood. After they take your blood, have them box up the vials. Take that box to the nearest FedEx and have it shipped to the IGeneX lab. Note: I don’t think any insurance will cover the testing. My tests cost about $900 dollars. It was worth it. I got the positive result I needed to FINALLY get put on antibiotics.
      (Also, if blood tests come back negative, I think there is a way to run tests on your spinal fluid.)
      I hope this helps. I’m not “cured”. The symptoms crept back after a year or so, but I’m back on antibiotics and feeling much better again.
      Best Wishes to you.

      • Bonnie
        June 8, 2015 at 6:00 pm

        Laura where are you? We are in N.J. My husband was just told today that he only has two lines positive on the Western Blot and therefore can’t have Lyme disease even though he exhibits all symptoms for late stage Lyme

  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.

    • August 3, 2014 at 7:44 am

      I’m so sorry. I was infected when I was 2yrs old and had svreee allergies/asthma for years. However, from what I’ve heard kids can bounce back and Dr. Jones in CT has been able to completely CURE kids in the course of a few years.I really hope he doesn’t have Lyme, but if he does his prospects are incredibly good.

    • August 4, 2014 at 7:13 pm

      that you haven’t really met many peolpe here yet. Then, of course, I got sidetracked before making it over to you to introduce myself. Welcome to Atlanta! Feel free to email me if you ever want to connect.

  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.

    • Kathy
      May 2, 2014 at 3:58 pm

      You have Lymes Disease. I could have written the same list 10 years ago. Get to a Lyme Literate Doctor as fast as humanly possible.

    • Laura
      April 28, 2015 at 1:35 am

      Sounds like you have Lyme Disease. I had practically all of the symptoms you have. They even came and went, like yours do. Some weird symptom would appear and by the time I made an appointment and got to the doctor – it would be gone! PLUS as the disease progressed I started getting really bad headaches, after which it affected how my brain worked. It started to literally drive me crazy. REALLY bad mood swings. One moment I’d have an outburst of rage, another moment I wouldn’t be able to stop crying, next thing I know I’d be having a panic attack… so, look out for mental/personality changes. A Lyme doctor prescribed Lamictal (mood swings) and Celexa (antidepressant) for the mental symptoms. (Another doctor had me on Xanax for the panic attacks, Adderall for ADHD-like symptoms – but those are controlled substances. Another doctor put me on Risperdal (mood swings) and that seemed to help with the panic attacks, so I could go off the Xanax… but what helped THE MOST was getting on ANTIBIOTICS.)
      If you can find a sympathetic doctor – one who would set aside the negative test results (my test came back negative, too) – see if you can get them to prescribe antibiotics. Tell them to please give it a try for 3 or 4 months to see what happens. If you have Lyme, your symptoms will start to go away. If not – he can take you off them, no harm done! The doctor I found has been treating Lyme for many years. He says doxycycline isn’t strong enough and uses different combinations, depending on what works best for each patient. I’m taking a combination of Biaxin XL ( generic: Clarithromycin ER) 500mg twice a day and Flagyl (generic: Metronidazole) 250mg 3 times a day. After a few months I could tell they were starting to work and I stayed on them for 18 months (you might have to pay for them out of pocket if insurance won’t cover that type of long term treatment)

      To get re tested – Go to the IGeneX lab website. I think they have forms you can print out that your doctor can use to order the tests. (my doctor already had forms for IGeneX) Take the script wherever you go to have your blood drawn. I think the order forms have specific instructions on how to draw the blood. After they take your blood, have them box up the vials. Take that box to the nearest FedEx and have it shipped to the IGeneX lab. Note: I don’t think any insurance will cover the testing. My tests cost about $900 dollars. It was worth it. I got the positive result I needed to FINALLY get put on antibiotics.
      (If blood tests come back negative, I think there is a way to run tests on your spinal fluid.)
      I hope this helps. I’m not “cured”. The symptoms crept back after a year or so, but I’m back on antibiotics again and feeling much better.
      Best Wishes to you (and congratulations on the baby! – I can’t imagine trying to care for an infant when you have Lyme.)
      Keep trying. I thought I was dying too. Get a blood pressure monitor. I had blood pressure readings of 53/37, pulse rates at 190 bpm and the muscles in my intestines seemed so weak that they could hardly move the food along. After years, I finally got to the doctor that correctly diagnosed me and I told her it felt like my body was shutting down. And she said “that’s what it was doing!” Geez.

    • Mandy
      June 1, 2015 at 6:15 pm

      Kay,
      I was just wondering what and if you were ever diagnosed with or if you were able to get help.
      I was reading through these posts and my symptoms and pains sound almost identical to yours.
      I did have an ELISA test come back positive, however the Western blog test just came back negative. My doctor has just referred me to a neurotologist and a rheumatologist and had ordered more spine x-rays to be done, as the first showed some curves and he wants to look more into that.
      However, my symptoms started very similar to yours and blood tests did not show anything, except for a deficiency in Vitamin D. After taking supplements for Vitamin D, my symptoms did seem to get better, however, came back weeks to a month later and seemed much worse. This is when my doctor started testing for other things.
      I too have a young child, a 2 1/2 year old son, plus a 10 year old daughter. This has affected me in every aspect of my life. I have had to take leave from work and my parenting is being greatly affected. I thought I would reach out, in hopes for any help in getting my life back, as well.
      Thanks,
      Mandy

      • Jennifer
        July 13, 2015 at 3:46 pm

        Wow, I thought I had ms for years but no spots on brain. Everyone keeps telling me it’s migraines but my heart knows it’s not. All I can tell my doctors is I feel as though my body is shutting down. Everyone calls it anxiety and migraines.
        Severe lightheadednes
        insomnia
        tingling on mainly left side of body
        daily headaches
        extreme fatigued

        Does this sound like lyme? ???
        Been getting worse for years

    • Brianm
      June 14, 2015 at 3:38 pm

      Kay, Your story is exactly the same as my wifes. The Dr’s claim it Multiple Sclerosis but I believe its lyme disease

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

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

  7. chad
    June 1, 2014 at 9:41 pm

    Kay,

    I too have most of the symptoms you mentioned. And up until 5 years ago I too was healthy and very active. Then came a serious of autoimmune diagnosis. I had experienced prior anxiety and memory concerns, but otherwise, was healthy. It’s all so surreal.

    Anyhow, after MANY failed lyme tests and numerous practitioners telling me I did not have lyme disease, I decided to go to a lyme specialist. The specialist conducted a series of tests thru IGENEX and confirmed that I had lyme, even by the CDC standards, as well as a bunch of co-infections. I don’t know what to make of it all, but am now on antibiotics and was told that given the disease duration, would likely be on abx for the next year. I’ll do anything to get my life back.

    Be well,
    Chad

    • Colleen
      June 22, 2014 at 6:29 pm

      Sure enough… Ignenex confirmed Lyme Disease. I’ve been seeing an LLMD and receiving treatment since April. Hoping to get well.

      Thank you for the comments.

      I wish you all the best.

      • Kay
        June 22, 2014 at 6:30 pm

        (I used the wrong name…) Colleen and Kay — both me :)

    • August 3, 2014 at 3:44 am

      Hi Macracadabra, I’m still not sure whether I have btleonarla. I had a test that came up negative, though I know that’s not conclusive, so I didn’t change my abx at all and just continued on the minocycline, clarithromycin, hydroxychloroquine combination I was already on. I’m off the mino and the clarithromycin now and am still feeling well (touch wood) so hopefully taking them for 2 years straight did the trick. The thing that’s working for me right now is osteopathy and a paleo diet. HTH!

    • August 4, 2014 at 7:02 pm

      It is indeed a great rcrsaeeh and a good effort towards mankind. I have seen that patients of Thalesemia are general poor/lower middle class people who cannot afford the costly treatment. One request is that the people who contact for the treatment should be responded on merit and at the earliest as well.Once again a great effort. Well done! Allah will give them Jaza in both the lives; here and hereinafter. Insha Allah

  8. August 2, 2014 at 4:15 pm

    I saw your video on the hole story of it. man, what a trip with all the abx. have you ever looked into alniatrteve treatments ? I have been on the Saltc protocol, it seems to be working. salt/c is almost so simple it seems like it cant work against such a complicated thing that has our medical comnunity so incapable to cure it. it can also be done as maintenence to keep things in check, google it, read about it. read about it before you dismiss it.

  9. August 5, 2014 at 10:19 am

    think there are some jobs that carry some prestige witohut money .Yes, and the true definition of prestige in American jargon usually means a very respectable and highly exclusionary craft or entity, taken up/patronized mostly by the White bourgeois.Your mentioning of prestigious sports, such as boxing, doesn’t hold much weight or significance, BECAUSE it is not what the White urbanites would usually consider as prestigious. It’s a sport whose active participants are usually comprised of racial minorities, and the majority of its passive participants, are also of the same group. It’s not all about White people, but in American society, they usually set the standards. The fact that many Asians and some upwardly mobile non-Asian minorities, who aspire and cater to their standards is a testament to this.Not taking consideration if the food is good, a Chinese restaurant in an upper middle class White neighborhood is consider more prestigious than a restaurant in Chinatown, and definitely a Chinese takeout in a Black neighborhood.

  10. Jeff
    February 8, 2015 at 1:50 pm

    Here is some good news on the lyme disease testing front.

    http://investors.t2biosystems.com/phoenix.zhtml?c=253528&p=irol-newsArticle&ID=2012950

  11. Keith
    March 23, 2015 at 9:56 pm

    Need a LLMD near Long Island new york

  12. April 4, 2015 at 10:04 pm

    She hooked me up with a Lyme LIterate Doctor in Maine and
    my son is a contented boy now, but we’re nonetheless treating
    it holistically.

  13. Beth
    July 12, 2015 at 2:51 pm

    My symptoms are dizziness, migrating joint and muscle pain, visual disturbances, tingling, palpitations and nausea to name a few.
    Igenex IGG results:
    31kDa IND
    39kDa IND
    41kDa ++
    Does this look like Lyme?

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