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Sunday, January 22, 2012

Definition of insanity

One patient with chronic Lyme called NIH hoping for acceptance into a new study. More research. Great. At least someone with gravitas thinks the jury is still out. The questionnaire sounds promising: tick bite, EM rash, joint problems, facial palsy, fever or chill, muscle pain, stiff neck, headache, heart problems, swollen lymph nodes, shooting pains in the hands/feet, cognitive problems, trouble finding words. This is the telephone screening questionnaire.

Patient's Western blot pattern: IgMs, 23,41,18,58,66 and 93. IgGs, only 41,64 and 68 A bust. Entry into the study requires a positive ELISA and 5/10 specific IgG bands. Rare findings.

Patients with long-standing Lyme disease have variable antibody responses. New IgM reactions can develop in late Lyme disease. IgM antibodies correlate with active infection, not IgG antibodies which tend to be protective.

Patients with strong persistent IgG bands may on average be healthier than other groups.

My patient complains she is very sick while a neighbor with 8/10 bands is very well.

A prospective study of antibody patterns seen in acute Lyme patients with persistent symptoms over time could help settle the issue and be relatively easy to do.

The unproven "CDC criteria" proposed by Dressler one weekend in 1994 has remained the unchallenged law of the land.

This same patient selection criteria has been used over and over again in NIH sponsored studies.

A definitions of insanity is repeating the same thing over and over expecting a different result.


T9im said...

Hi Doc:

I can't put my fingers on it right now but the CDC had Alan Steere do a study on the 2 tier screening for Lyme and he had a paper in 2005.

What I really remember is it was a catch 22 situation, the lyme clinics required one had to be positive on the elisa to be considered for the WB and it was from these two clinics Steere took his sample from.

Alan Steere was one of the authors with Dressler.

So the CDC feels thie 2 tier is a fine method for testing and the IDSA (I assume Steere assists the Lyme committee of the IDSA) follows the CDC.

Some cracks are starting to show, the new test and the Rhesus Monkey study should help.

Camp Other said...

Didn't Dr. Willy Burgdorfer give an interview where he said the serology for Lyme disease needed to be started over again from scratch?

I'm wondering what he knows. I mean, REALLY knows...

Pearl said...

LymeMD: I was reading the abstract on the Rhesus monkey study, and then scrolled down to a study done at Gunderson Lutheran Health System in WI. They compared 15 patients with facial nerve palsy who were treated with 7-30 days of oral doxy to controls of people treated with early Lyme. After 4.6 years, 60% of facial palsy patients had fatigue as compared to 27% of controls. 1 facial palsy patient had not recovered nerve function. To me, this represents failure rates of 60% and 27%, and yet they conclude that oral doxy Is "an effective theuraputic strategy." HUNH??

Are these non-cure rates standard fare for "effective" therapies" in medicine?

I'd love to hear your thoughts on both of these studies.

Thank you for taking the time to share your thoughts and experiences. Many of your posts have validated my experience, which is very comforting after being dismissed by multiple specialists.

Pearl said...

I tested negative for Lyme on a screening test and in my CSF. When I ended up in the hospital with severe URQ abdominal pain, digestive problems, and rib pain (not to mention all my neurological symptoms and brain lesions), I couldn't convince a neuro, a GI doc, or the internist I had Lyme. The latter said that my CSF test is considered highly accurate. When I tried to say, "But I read...", the internist cut me off and said, "It doesn't matter what you've read! None of us think you have Lyme." (He was definitely irritated.)

They had no diagnoses to offer and discharged me with an Rx for Vicodin and told me o go to a prestigious university hospital where I already had a referral to the MS clinic. My request for a consult with an ID doc was ignored (or perhaps requested and refused).

Since then, I found on the CDC's Lyme testing page where they say that the serology in the CSF must be higher than in the blood to diagnose Lyme. But I can find no basis whatsoever for this belief. I subsequently went to a well known ILADS doctor's office where they told me that they rarely see a positive CSF for Lyme, even in neuroborrelliosis patients like me, and they never order it.

Do you know where this belief came from, that a negative CSF excludes Lyme?

P.S. My only non-negative test results on the full panel at IGeneX were a 40 (lowest cutoff for equivocal) on the screen, bands 18, 31, & 41 on the IgM WBmand a "non-negative" for Bartonella. My IgG WB only had 31 (IND) and 41. I believe I got them 6 years ago, and took 7 days of Augmentin 875 at acute onset (not knowing what I had).

T9im said...

Hi Doc:

Below is the link to Alan Steere's "Prospective Study of Serological Tests for Lyme Disease". Looks like it was published in 2008.

A catch 22 supporting the Dearborn CDC standard.