So like the subject says one of my LLMD's wants to do another Igenex test to see the progress of lyme. Currently on 400mg Doxy, 500mg Alinia 2xDay, 3 Tab's Bactrim.
Will another test show anything or is it more likely to be a false negative while I'm on abx.
Any one with any experience with it?
Posted by Keebler (Member # 12673) on :
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Is your doctor a LLMD who follows the ILADS treatment guidelines?
From all the lectures I've watched and the literature on this - you can't check progress of lyme from a test. It just does not work that way as it does for other infections. If you are feeling better - that is the key.
If you've been treating for many months and are not feeling better, have you been evaluated for co-infections and for Chlamydia Pneumonia (Cpn) and HHV-6 and other chronic stealth infections such as mycoplasma? A good LLMD will know how to proceed with that.
I'm pretty much toast so can't offer the citations to back this up - but I'll post some links that may help.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
===================== =====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
ILADS also has many other articles and presentations and DVDs of seminars available. (Some are through the LDA site below.)
Tests are not good indications of progress for lyme like they are for some other infections. Most LLMD's wait to stop treatment until 2 months after symptoms are gone.
You have more than one lyme doctor? Are they members of ILADS? www.ilads.org
Perhaps they are taking another test to confirm your diagnosis if they are LLMD's. It is not unusual for the tests to become more positive after an abx challenge.
Terry
Posted by webmeg (Member # 13647) on :
My LLMD says once you are treated and think you are "cured" (symptom free for several months) do a Western Blot. Your IgM should be completely negative to confirm that you no longer have lyme, and it should stay negative...
If you still have symptoms then I don't know what a WB would really tell you.
~webmeg
Posted by lymemommy (Member # 12495) on :
For what it is worth,
my son was initially tested through quest, had a positive elisa and was IgM positive, in addition to arthritis and confirmed EM (thus CDC positive).
Three months later, a WB through Igenex was done (to confirm dx). At that time he was IgG and IgM positive, still CDC positive.
Almost a year after the original test, yet another test was done through Igenex, IgM only. At that time he was almost symptom free. This test was also positve, thus indicating that he still had an active infection.
So despite the lack of overt symptoms that are clearly lyme, his testing tells us that we still aren't out of the woods.
So in that aspect, I see the repeat testing as a good thing, because the idea of stopping the tx because we think he's in the clear, just to have everything come back, possibly worse than before, is just down right frightening.