One reason why Lyme is usually undiagnosed or misdiagnosed is because the testing is inaccurate. If you go to a regular doctor they will probably do the ELISA blood test which is a huge problem because it produces so many false negative (more than half). It’s not even worth running that test. If the ELISA is positive your doctor may do the Western Blot . But mostly likely will still tell you it’s a false positive. LMAO! So if you don’t see a Lyme Literate MD (LLMD) your doctor will rely on this test and assume you do not have Lyme. You regular doctor also will not test for co-infections. Everyone with Lyme unfortunately has co-inffections. Then the medical community will come up with a label to give you and call it a diagnosis. A label is a name for symptoms and not a diagnosis. These labels are commonly given, Fibromyalgia, MS, ALS, Alzheimers, Parkinsons, Chronic Fatigue Syndrome, Chronic Migraine, Bipolar, Depression, Anxiety and more. A true diagnosis is when you know the cause of your symptoms. Don’t believe any doctor beside that says you do not have Lyme. An LLMD is the only doctor that can say you do not have Lyme.
A NEGATIVE TEST DOES NOT MEAN YOU DO NOT HAVE LYME
Doctors that are lyme literate will use different labs to test patients. In the USA some use Igenex. Igenix is consider the top lab for Lyme and Co-infections in the world. Another option is DNA Connextions. Great thing about both is you can order them yourself. Igenix is a blood draw and DNA Connextions is a urine test.
The Igenex lab is in Palo Alto, California. It is considered the gold standard in lyme testing. They will usually run the Western Blot and tests for co-infections because most everyone with Lyme Disease also has co-infections. You can order test kits yourself.
Western Blot: The results will be shown as IgM and IgG,. It is an antibody test. Here is the breakdown of the Bands from mdjunction.com:
IgM is a sign of a current infection.
IgG can be a sign of a current infection if symptomatic, or of a past exposure to or past infection by the organism.”
“Only one of these Borrelia burgdorferi (Bb) genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
9 cross-reactive for Borrellia
12 specific for Bb
18 highly specific to Lyme (LLMD’s say if this band alone is positive, you have lyme )
20 cross-reactive for Borrellia
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
30 unknown; probably an outer surface protein; common in European and one California strain – Has cross-reactivity with several different types of viruses
31 outer surface protein A (OspA), specific for Bb – Has cross-reactivity with several different types of viruses
34 outer surface protein B (Osp; specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas)
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients”
The CDC positive is different than LLMD’s positive. The CDC changed the case definition so less people test positive for Lyme. It’s shocking the fraud that was committed. All to make money on a vaccine. See Truth Cures.
The CDC requires at least 5 of these bands (18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93) be positive to say someone has Lyme Disease. LLMD’s look at the specific bands. Here is a great article about the Western Blot.
DNA Connexions uses Polymerase Chain Reaction (PCR) technology. The Lyme panel is a urine test testing for the actual DNA of the organisms. According to their website they test for the following.
- Anaplasma phagocytophilium
- Borrelia burgdorferi
- Babesia divergens
- Bartonella bacilliformis
- Ehrlichia chaffeensis
- Borrelia recurrentis
- Borrelia miyamotoi
- Babesia duncani
- Bartonella henselae
- Babesia microti
- Bartonella quintana
That’s a pretty good list. It is a $50 deposit and $425 when you mail in the sample. Doubtful your insurance would cover it but that is A LOT cheaper than the first IGENEX testing I did through my Lyme Literate MD. If you decide to do this you have to exercise for 30 minutes before or get a deep tissue massage. That’s hard for us Lymies to do that but exercise and deep massage can cause herxing, which means we will feel sicker after. However, it was the only test that confirmed Bartonella and Borellia in me.
Here is a great interview of Dr. Douglas at DNA Connections by The Better Health Guy According to Dr. Douglas the testing is showing 83% positive for some infection and 17% negatives. The reason I like this is because it’s testing DNA not an antibody test. If you don’t produce antibodies to these infections then you can get a false negative.
I think either test you do you definitely should follow up with a lyme literate doctor (LLMD) to discuss. Since the testing is so inaccurate you can be diagnosed with Lyme with a clinical diagnosis based on symptoms and medical history.
LYME IS A CLINICAL DIAGNOSIS
I think DNA Connexions is a great option if you know someone that you suspect has Lyme. Many of us know people who we highly suspect have it. So it’s a good option because it’s easy to do home testing and it’s cheaper if they can’t afford to see an LLMD.
But remember none of these tests are not 100% accurate and a negative result does not mean you do not have Lyme Disease. Lyme is a clinical diagnosis so to rule it out you need to see an LLMD.
A LYME LITERATE DOCTOR IS THE ONLY PERSON THAT CAN SAY YOU DO NOT HAVE LYME. DO NOT BELIEVE ANY OTHER DOCTOR THAT SAYS YOU DO NOT HAVE LYME DISEASE. THEY ARE NOT EDUCATED IN LYME.
I tested negative on the ELISA through my primary doctor. Positive for Lyme and Babesia through my LLMD using Igenix Lab and positive for Bartonella bacilliformis and Borrelia recurrentis through DNA Connextions on my own. I am not a science person nor an expert on Lyme. I share my story to help other Migraine Warriors! I also did not treat with LLMD’s. I tried 3 and they did not work for me. Luckily, I healed using natural treatments.
Here are a few links: