At Lymedisease.org’s June board meeting, CEO Lorraine Johnson presented information on how different sources map Lyme disease.
The CDC is systematically under reporting Lyme in the South and West causing researchers and medical professionals to use circular reasoning and who quip, “There is no Lyme here because there are no reported cases and there are no reported cases because there isn’t any Lyme here.”
Please remember the little girls from Arkansas who could not get treatment because the head of infectious diseases claimed there were no reported cases in Arkansas and even admitted that they have the ticks that carry Lyme. https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/
Then they had to recant that statement thanks to the girls’ mother who wasn’t having it: https://madisonarealymesupportgroup.com/2017/03/02/hold-the-press-arkansas-has-lyme/
The next order of business is changing the surveillance criteria for reporting purposes. Currently, if someone makes the CDC’s stringent criteria, I tell them that they’ve won the Lyme Lotto. Few make the cut. I didn’t, my husband didn’t, nor has hardly anyone else I work with.
CDC Laboratory Evidence for surveillance includes: https://wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2017/ F
A positive culture for B. burgdorferi, OR
A positive two-tier test. (This is defined as a positive or equivocal enzyme immunoassay (EIA) or immunofluorescent assay (IFA) followed by a positive Immunoglobulin M1 (IgM) or Immunoglobulin G 2 (IgG) western immunoblot (WB) for Lyme disease) OR
A positive single-tier IgG2 WB test for Lyme disease3.
1. IgM WB is considered positive when at least two of the following three bands are present: 24 kilodalton (kDa) outer surface protein C (OspC)*, 39 kDa basic membrane protein A (BmpA), and 41 kDa (Fla). Disregard IgM results for specimens collected >30 days after symptom onset.
2. IgG WB is considered positive when at least five of the following 10 bands are present: 18 kDa, 24 kDa (OspC)*, 28 kDa, 30 kDa, 39 kDa (BmpA), 41 kDa flagellin (Fla), 45 kDa, 58 kDa (not GroEL), 66 kDa, and 93 kDa.
3. While a single IgG WB is adequate for surveillance purposes, a two-tier test is still recommended for patient diagnosis.
*Depending upon the assay, OspC could be indicated by a band of 21, 22, 23, 24 or 25 kDA.
A case of EM with exposure in a high incidence state (as defined above), OR
A case of EM with laboratory evidence of infection and a known exposure in a low incidence state, OR
Any case with at least one late manifestation that has laboratory evidence of infection.
In my case I had one positive band and an indeterminate in the IgM, and only 2 positive and 1 indeterminate for the IgG, yet I had migrating joint pain, severe fatigue, saw disco lights in my head, wild heart palpitations that would wake me up in the middle of the night (felt like a heart attack), chest pain, dizziness, horrific insomnia, pelvic pain, stiff and painful spine and neck, severe meningal headaches, confusion and memory loss, mood swings (rage, depression, couldn’t handle stress), and more.
My husband and I were both pictures of health prior to this.
Thankfully a LLMD used the IGeneX extended Western Blot which is far more sensitive than the CDC’s two-tiered tests and diagnosed us clinically based on symptoms as well as evidence through testing. For my story: https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/
The plot thickens when you understand that coinfections are often not reportable to the CDC in many states. There is absolutely no way the CDC is getting an accurate picture of Lyme/MSIDS land.
Time for things to change. And change they must.