My 19 year old daughter has had at least 3 positive lyme tests in the past (since age 5). She has been treated, but insufficiently.
Recently, she spent 5 days in the hospital for head pain so severe that she could not stop vomiting.
Turns out her spinal fluid pressure was so high that it was off the charts.
Sent her blood to Igenex in the hope that we could finally get insurance on board so that she could have a picc line.
Results only show the following: bands 18, 45 and 23 - all "IND" band 41 - positive
To me, this is more evidence of a long standing infection.
Thoughts?
Posted by hiker53 (Member # 6046) on :
I agree that the results show infection.
Hope the doctor and insurance also agree but it may not meet CDC standards.
Praying for your daughter!
Posted by Robin123 (Member # 9197) on :
Yes, indicative of infection.
Posted by Bartenderbonnie (Member # 49177) on :
canaanbites, agree with you on a long standing infection.
Previous antibiotic treatments can alter results in chronic Lyme patients. A LLMD would consider your daughter’s test positive and would initiate treatment promptly.
Any other Doctor would not provide treatment OR would not provide enough treatment. You will need a LLMD.
Here’s other reasons why Lyme testing can be skewed;
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
Lyme Disease is and will always be a clinical diagnosis based on symptoms, patient history and epidemiology (exposure to tick areas) Lyme testing can be used to confirm clinical diagnosis but not to eliminate said diagnosis. There is no blood test to confirm chronic Lyme.
Posted by marie (Member # 3980) on :
which igenex tests to order & how to get a dr to sign & a lab to draw. also-dr miller had on a site-tests for neuro degenerative issues
Posted by hopingandpraying (Member # 9256) on :
PM sent for NY.
Your daughter needs to be treated by a LLMD. My son had one band (41) on the unreliable Elisa test then tested positive for several more with IGeneX. He has been ill now for 23 years.
The top pediatric Lyme specialist told us all is required to have Lyme is ONE band!
I don't know what part of NY you are in, but contact the NY Lyme Support Groups - maybe they can help you. They would know better about NY.
When calling for an appointment, ask if they have any cancellations or a waiting list (call every day if you have to!). Patients have been able to get in sooner by doing this.