I was bitten by a tick in August of last year, had a large rash on my right shin, and have been experiencing a multitude of lyme-like symptoms ever since. After visiting GPs and ID Specialists on three occasions, being tested by Labcorp and QuestnLabs, and being told I didn't have LD, I decided to visit an ILADS LLMD. She was convinced that I had LD. She requested a WB and tests for coinfections through Labcorp and again the results came back inconclusive. All IgG bands were negative. One out of three IgM bands (#23) was positive/reactive. I am currently on a regimen of antibiotics. Although I am grateful for my LD and the treatment I am now receiving, I am still a little disappointed and frustrated that my tests were still inconclusive. I guess I was hoping for definitive answers. I just needed to vent. And I am grateful for this forum which enables folks like me to do so. Thanks for all of the help and support.
Posted by merrygirl (Member # 12041) on :
Hello. Sorry you are dealing with this. It is all to familliar for a lot of us. I believe 23 is a specific Lyme band, so chances are you have it based on that combined with symptoms. Lyme is a clinical diagnosis. That means its based on your history combined with exposure and symptoms. But with that said, You may want to consider using Igenex lab next time. Their tests are a lot better.
The other thing I wanted to mention is that if you had the EM rash, that in itself is DIAGNOSTIC for Lyme disease. you do not need any testing. You have Lyme period, end of story.
Hope this helps?
Posted by lou (Member # 81) on :
People put too much faith in testing when it comes to lyme disease. It is fallible. Read the newby link about why testing can be false negative.
As merrygirl says, the EM rash is diagnostic and the CDC accepted that alone, without any test results, for its very strict surveillance case reporting.
Posted by Lymetoo (Member # 743) on :
Reasons for Sero-negativity -- the reasons why you can test negative and still have Lyme disease.
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e.: lymphocytic cell walls) 4. Spirochete is deep in host tissue (i.e.: fibroblasts, neurons, etc.) 5. Blebs in body fluid, no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains, 100 in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10. Utilization of host protease instead of microbial protease 11. Spirochete in dormancy phase (L-form) with no cell walls 12. Recent antibiotic treatment 13. Recent anti-inflammatory treatment 14. Concomitant infection with babesia may cause immunosuppression 15. Other causes of immunosuppression 16. Lab with poor technical capability for Lyme disease 17. Lab tests not standardized for late stage disease 18. Lab tests labeled "for investigational use only" 19. CDC criteria is epidemiological not a diagnostic criteria 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S"- layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens
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and YES.. the EM rash is diagnostic of lyme
Posted by cfaisonjr (Member # 30646) on :
To merrygirl, lou, and lymetoo:
Thank you for sharing your knowledge. My LLMD recommended some reading for me as well. I will most certainly continue to increase my knowledge of the disease I now have by continuing to ask questions and reading as much as I can. This site is an invaluable resource. Again, I am deeply appreciative.