This is topic anyone with sero negative lymes?? in forum Medical Questions at LymeNet Flash.


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Posted by kumba (Member # 7733) on :
 
Hi,
I'm just becoming a bit more informed about sero neg lymes. read 2 posts now w/people who always tested neg and then sero converted after rx. anyone else?? I'm convinced I have late/chronic lyme bhut tests came back neg yesterday.
 
Posted by agszafran979 (Member # 7069) on :
 

Hi,
I'm just becoming a bit more informed about sero neg lymes. read 2 posts now w/people who always tested neg and then sero converted after rx. anyone else?? I'm convinced I have late/chronic lyme bhut tests came back neg yesterday.

What kind of tests did you have? The Lyme tests ordered by many doctors (IFA or ELISA) are notoriously unreliable and get many false negatives. Western Blot testing through IGenex (or even other labs) is better but still not 100%. The problem is that all of these tests look for antibodies to certain strains of Lyme, and not everyone produces detectable levels of antibodies.


There are also other tests that claim to detect the spirochete directly, and things like the Stricker panel that measure levels of a certain kind of white cell whose quantity is supposedly diminished by Lyme.


What are your symptoms, BTW?


-DS

[This message has been edited by agszafran979 (edited 13 August 2005).]
 


Posted by Lymetoo (Member # 743) on :
 
Did your dr use Igenex Labs?? If not, you're very likely to come up negative. Other labs do not test for all the bands. Igenex labs specializes in Lyme testing.

Going to a dr who doesn't specialize in Lyme gets you nowhere......testing thru a lab that doesn't specialize in Lyme gets you nowhere.

REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochetes are deep in host tissue
5. Only 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

FDA bulletin on testing: http://www.fda.gov/medbull/summer99/Lyme.html

For what it's worth......I also was sero-negative....even thru Igenex. I believe it is because I had been given steroids [alot] a few yrs before my testing...also I've had Lyme for over 46 yrs....I think that affected my test results.

My first WB was neg......then I took abx for several wks, then off for 2 wks and took it again........More bands showed up and I was one band away from CDC positive.

I had bands which were specific to Lyme, so what else could it be???????

Be sure to read this carefully. You'll see what I'm talking about.

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html


------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 


Posted by kumba (Member # 7733) on :
 
Hi DS. In response to what are your sx ready:
too many to list, affecting almost all systmes, neuro/cognitive increasing last few months. Joint pain for 20 +yrs. Have 31 of 36 listed sx from DR. B checklist. used quest dx for labs. I did call igenex cant afford the 390.00 and then cost of labv draw. thankkyou also lymetoo..I have the list and printed it out. confirms I am not insane. for now will take doxy form dr. dduck who only ordered 200mg daily. I am going to dbl it myself accordeing to dr. b gguidelines. Nothing else I can do for now.
 
Posted by agszafran979 (Member # 7069) on :
 
quote:
Originally posted by kumba:
Hi DS. In response to what are your sx ready:
too many to list, affecting almost all systmes, neuro/cognitive increasing last few months. Joint pain for 20 +yrs. Have 31 of 36 listed sx from DR. B checklist. used quest dx for labs. I did call igenex cant afford the 390.00 and then cost of labv draw. thankkyou also lymetoo..I have the list and printed it out. confirms I am not insane. for now will take doxy form dr. dduck who only ordered 200mg daily. I am going to dbl it myself accordeing to dr. b gguidelines. Nothing else I can do for now.

AFAIK, Western Blot tests from IGenex cost $95 a piece. There are two tests, IgG Blot and IgM Blot which detect antibodies in two different kinds of immunoglobulin.

-DS
 


Posted by groovy2 (Member # 6304) on :
 
Hi Kumba
I found that doxicycline can be
gotten from 1-800-Pet Meds-
No doc needed--Jay--
 
Posted by kumba (Member # 7733) on :
 
Hi DS,
I'll have to call ignenex again. they7 told me the intial panel was 390.00 far cry form 95. thanks
 
Posted by agszafran979 (Member # 7069) on :
 

Hi DS,
I'll have to call ignenex again. they7 told me the intial panel was 390.00 far cry form 95. thanks


Ask about the cost of the IgG and IgM western blots. Maybe the initial panel has more than that, so ask what's included in the panel.


-DS

[This message has been edited by agszafran979 (edited 13 August 2005).]
 




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