About 6 weeks ago I had general malaise, low-grade fever, swollen and painful hands, migrating myalgia and arthralgia. Went to Primary care, tested sed rate, crp, lyme.
He said that Lyme was neg, but when I went in last week saying I still didn’t feel like myself, I learned that the ELISA was equivocal.
Retested Lyme. It’s now ELISA pos, but still (and I haven’t got the specific bands) “western blot negative.”
However, they’re starting me on doxy as I still have myalgia, numbness and pains in my hands, easily fatigued muscles, and I had a unilateral aura in my left eye two weeks ago.
I used to think that Lyme was overdiagnosed, then I read the article that connected the IDSA with the NEJM article.
http://www.medscape.com/viewarticle/586226

any comments?

Son was unwell for many years.

Diagnosed with Hashimoto’s thyroiditis and began treatment, but still was unwell

We live in Lyme Country, USA, so sought testing

Had one positive Elisa and one equivocal Elisa.

Only the 41 band on the IgG ever was prsesent over 4 years on many tests thru LabCorp and Quest. But it was present consistently.

Found to have high HHV6 (can’t remember if it was the A or B variant, but the one not associated with HIV)

lso had high EBV titers which increased dramatically over 4 years

Finally treated with anti-virals for CFS by renown NYC infectious disease md

However, then further cognitve decline necessitated neuropsych eval

Neuropsychologist suggested Lyme testing by IGENEX

Stunning, positive results from IGENEX on the IgG Western Blot

Has been seen by renown Boston LD specialist who highly respects the IGENEX IgG Western Blot in Boston

Treatment going very well. Steady improvement, but resurgence of arthritis-like symptoms about every 6 weeks but for shorter durations as treatment continues

Now into 2nd year of treatment

Have since read that HHV6 and E-B titers can be markedly elevated in people with LD

Now, daughter, who was diagnosed with Hashimoto’s thyroiditis about the same time as her older brother, is not feeling so well.

Hives. Chills. Memory problems, etc.

QUEST test for Lyme show both the IgM and IgG WB positive for the 41 band.

Awaiting results any day now from IGENEX!!!!

So, keep seeking!

I was diagnosed with Lymes by a new primary care Dr. who I went to see as a new patient.

The only reactive bands on my western blots were 41 kd IgG and 41 kd Igm.

She had me tested because:

1) I had a very large insect bite 1.5 years ago that was treated in the ER– it was not the typical bulls-eye, though.
2) 8 months ago I had a strange unexplained sore/cyst on my face that took 2 rounds of IV antibiotics followed by two different kinds of oral antibiotics to resolve.
3) I’ve had a chronic lower back ache for about a year.

I have no other symptoms, and, from what I’m reading, band 41 alone is not particularly determinate of Lyme. I’m not sure I have it but started the 1 mo. course of doxycilin anyway.

Any thoughts?

Thank you!

Forty-five labs correctly identified positive
samples using the ELISA only 55% of the time.
* SOURCE: Bakken et al., Performance of 45 laboratories participating in a proficiency
testing program for Lyme disease serology. JAMA
1992;268:891-5

Fifty two percent of patients with chronic Lyme disease are negative by ELISA but positive by western blot.
*SOURCE: Donta, Late and chronic Lyme disease. Med. Clin. N. Amer., 86, 341–349 (2002).

Between 20-30% of patients with confirmed Lyme disease are seronegative.
* SOURCES: Aguero-Rosenfeld, M.E., et al., Serodiagnosis in early Lyme disease. J Clin Microbiol, 1993. 31(12): p. 3090-5; Aguero-Rosenfeld, M.E., et al., Evolution of the serologic response to Borrelia burgdorferi in treated patients with culture-confirmed erythema migrans. J Clin Microbiol, 1996. 34(1): p. 1-9;
Donta, S.T., Tetracycline therapy for chronic Lyme disease. Clin Infect Dis, 1997. 25 Suppl 1: p. S52-6.

The presence of band 41 alone is an insufficient basis to conclude that exposure to Borrelia burgdorferi (B.b.) has occured. The 41 kDa antigen is common for most flagella-bearing organisms, although band 41 in combination with one of highly B.b.-specific bands indicates a very high likelihood of B.b. exposure (see below).

True, in his 1986 paper, Steere did state as follows:

“Although antibodies reactive against this antigen
[41-kD] may be present in patients with relapsing fever or syphilis, these diseases can be distinguished clinically from Lyme disease and therefore should not cause diagnostic confusion. The binding of this antigen by IgM from rheumatic disease controls was typically very weak and could potentially be blocked to avoid false-positive results in this group of patients.”

But this is classic Steere: overblown generalizations based on scanty evidence (only 18 patients), and deeply-flawed assumptions about Lyme disease symptomatology. Perhaps it’s understandable that Steere believed in 1986 that Lyme disease is clinically distinguishable from syphilis. We certainly know now that the two diseases share a remarkably similar range of symptoms.

The IGeneX criteria for IgG and/or IgM WB positivity for B.b. exposure are based on
the presence of at least two of the following bands: 23-25, 31, 34, 39, 41, and 83-93 kDa. According to a recent IGeneX study, the presence of two of these bands on the IgG WB or IgM WB – even in the absence of all other bands – indicates a 96% likelihood of exposure to B.b. It goes without saying that the presence of three or more of these bands indicates a 100% likelihood of exposure. Because IgM antibodies are known to be present about 25% of the time in chronic Lyme disease, both the IgM and IgG WB must be performed even after the first month of suspected infection.

The IGeneX IgG WB has a sensitivity of 68% (i.e., 32% false negative). The IGeneX IgM WB has a sensitivity of 81% (19% false negative). The combined senstivity of the two tests is 89% (i.e., 11% false negative).

SOURCE: Shah, et al., Comparison of specificity and sensitivity of IGeneX Western Blots using IGeneX criteria and CDC Criteria, Townsend Letter for Doctors and Patients (Apr. 2007).

My impression is that with a little bit of analysis – as opposed to the IDSA cookie cutter approach – the presence of just one of the highly-specific bands (23-25, 31, 34, 39, or 83-93) can be a very reliable indicator of B.b. exposure. This is because there are few other infections that would cause an antibody response corresponding to one of these bands. So it’s just a matter of ruling out the other possible causes.

A good overview on B.b. antibody testing was published in the summer 2004 issue of Lyme Times.

Anthony Murawski
Seattle, Washington
anthony@murawski-law.com
Diagnosed with chronic Lyme disease