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» LymeNet Flash » Questions and Discussion » Medical Questions » Igenex results - good enough??

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Author Topic: Igenex results - good enough??
canaanbites
LymeNet Contributor
Member # 32852

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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?

Posts: 114 | From NY | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

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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!

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 9162 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Robin123
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Yes, indicative of infection.
Posts: 13119 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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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.

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marie
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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
Posts: 545 | From southern new jersey | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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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.

https://whatislyme.com/lyme-in-new-york/

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.

Links about teenagers and Lyme Disease:
https://www.lymedisease.org/45/

http://www.livingwithlymedisease.org/teenagers-with-lyme-disease.html

http://www.lymefight.info/lyme-disease-general-information/children-teens-and-lyme-disease/

Posts: 8986 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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