If you haven't already try to find an LLMD, and I would personally recommend avoiding infectious disease specialists like the plague.

Best of luck to you. I know it's both frustrating and depressing waiting for treatment- especially when you know what's wrong but the doctors seem more interested in ping ponging you back and forth than treating the problem. Hang in there, you'll get better.

Lyme is a clinical diagnosis based on symptoms.

Are you seeing an LLMD? If you are symptomatic you need treatment and testing through Igenex tick borne specialty lab.

I had 2 negative tests too...I thought I was dying and no doctor could diagnose me.

Get to a Lyme literate Md, save your time and money and don't waste another dollar on mainstream Md's who have ZERO knowledge of Lyme disease.

I was told to see a 'shrink' for my symptoms. My 'FM' was getting worse (of course.... because I had Lyme). I left that rheumie and internist in the dust. I found a doc in the southeast that helped me recover from Lyme. We can recover from this disease.

Feel free to ask any questions that you may have.

Peace,

connie

Need: IgeneX WB, C6 peptide antibody, co-infection panel and other tests. You also need a specific Lyme physical exam.

http://www.anapsid.org/lyme/lymeseroneg.html

Nine Reasons for False Negative Lyme Disease Blood Test Results

From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

*******************************************

Reasons Why A Seronegative Test Result Might Occur

Tom Grier, Lyme Alliance

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 are deep in host tissue

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 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

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

and even the lab that does it states you need to follow it with a Lyme immunoblot aka western blot for it to be validated--and yet I dont see that mentioned by lymemd

http://www.specialtylabs.com/education/download_PDF/ TN_1172.pdf

according to the NIH about c6 ELISA ( which it is)

[Of great importance is the fact that decreases in the titer of antibodies against C6 can be used as an indicator of the efficacy of antibiotic therapy for patients with localized or disseminated Lyme disease, but not for chronic Lyme disease (Eur J. Clin Microbiol Infect Dis 23: 615, 2004).]

I note the very last sentence--NOT for CHRONIC Lyme

and finally I have to agree with Cave on the fact that all tests have a LOT of holes and we still have a clinical diagnosis being needed regardless of any neg tests.

F