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» LymeNet Flash » Questions and Discussion » Medical Questions » Need help with our IGenex results

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Author Topic: Need help with our IGenex results
sstone
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Member # 11236

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Hello all,
I just received the results for my two daughters and myself's. they are all negative even for IGenex's criteria.

I was confused and need some help to decide what to do next.

I post there and hope some gurus can help me to read them before I see my LLMD.

Many thanks,

Shara

My 5yrs old
HLA test from Quest:
HLA-DR4 Detected
HLA-DRB1 04(DR4)
HLA-DRB1 -(DR-)
HLA-DQB1 03(DR?)
HLA-DQB1 04(DQ4)
HLA-DR15 Negative
HLA-DQ6 Negative


Western Blot from IGenex:

Igenex Western Blot IGM result: NEGATIVE
18 kDa. -
22 kDa. -
**23-35 kDa. -
28 kDa. -
30 kDa. +
**31 kDa. IND
**34 kDa. -
**39 kDa. IND
**41 kDa. +++
45 kDa. -
58 kDa. -
66 kDa. -
73 kDa. -
**83-93 kDa. -

IGenex Western Blot IGG Result: Negative
18 kDa. -
22 kDa. -
**23-35 kDa. -
28 kDa. -
30 kDa. -
**31 kDa. -
**34 kDa. -
**39 kDa. -
**41 kDa. +
45 kDa. -
58 kDa. -
66 kDa. -
73 kDa. -
**83-93 kDa. -

My 2 yr old:
Igenex Western Blot IGM result: Negative
18 kDa. -
22 kDa. -
**23-35 kDa. -
28 kDa. -
30 kDa. ++
**31 kDa. -
**34 kDa. IND
**39 kDa. -
**41 kDa. IND
45 kDa. -
58 kDa. -
66 kDa. -
73 kDa. -
**83-93 kDa. -

IGENEX Western Blot IGG Result: Negative
18 kDa. -
22 kDa. -
**23-35 kDa. -
28 kDa. -
30 kDa. -
**31 kDa. IND
**34 kDa. -
**39 kDa. -
**41 kDa. ++
45 kDa. -
58 kDa. -
66 kDa. -
73 kDa. -
**83-93 kDa. -


Myself's
Igenex Western Blot IGM result: NEGATIVE
18 kDa. -
22 kDa. -
**23-35 kDa. -
28 kDa. -
30 kDa. -
**31 kDa. IND
**34 kDa. -
**39 kDa. -
**41 kDa. +
45 kDa. -
58 kDa. -
66 kDa. -
73 kDa. -
**83-93 kDa. -

IGenex Western Blot IGG Result: Negative
18 kDa. -
22 kDa. -
**23-35 kDa. -
28 kDa. -
30 kDa. -
**31 kDa. -
**34 kDa. -
**39 kDa. -
**41 kDa. +
45 kDa. -
58 kDa. +
66 kDa. -
73 kDa. -
**83-93 kDa. -

Posts: 32 | From MA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Penn92
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Member # 9207

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Originally posted by sstone:
My 5yrs old
30 kDa. +
**31 kDa. IND
**34 kDa. -
**39 kDa. IND
**41 kDa. +++

IGenex Western Blot IGG Result: Negative
**41 kDa. +

This looks like it needs to be treated. Even those IND results indicate a reactivity, so if the child is symptomatic/has a history of a bite and has these results, I'd get treatment.

My 2 yr old:
Igenex Western Blot IGM result: Negative
30 kDa. ++
**31 kDa. -
**34 kDa. IND
**39 kDa. -
**41 kDa. IND

IGENEX Western Blot IGG Result: Negative
**31 kDa. IND
**34 kDa. -
**39 kDa. -
**41 kDa. ++

Same thing here. IND means reactive and should be treated if symptomatic.

Myself's
Igenex Western Blot IGM result: NEGATIVE
**31 kDa. IND
**41 kDa. +

IGenex Western Blot IGG Result: Negative
**41 kDa. +
45 kDa. -
58 kDa. +

See inserted comments above. I think you all need to be seen by an LLMD. If you're symptomatic/have a bite history and show these results, I'd treat.

We are all IGeneX negative, but with similar results to yours and have all improved a lot on abx.

I'm sure others will post similar responses, maybe with quotes from those great "interpreting the WB" commentaries.

[ 15. March 2007, 10:13 AM: Message edited by: Penn92 ]

--------------------
Getting older is when we would rather not have a good time
than have to get over it. - Oscar Wilde

Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Member # 11141

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I would see an LLMD. Your children's blots look very suspicious because they have Lyme specific bands that are positive.

Yours is weaker, but that's not uncommon in someone who's had it longer.

I'd see and LLMD if you are symptomatic.

--------------------
sixgoofykids.blogspot.com

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bettyg
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up for more help...
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sstone
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Thank you very much for your help.

My old daughter is seeing a wonderful LLMD. And my Youngest will also be taken cared by the the same Duck. I will go to see my LLMD for the first time on this coming monday.

I'm the sickest one in my house, So you are right, I may have it longer. I may passs it to my kids by pregnacies. But what I recalled is we were all bitten back to last May. We all have been sick since then.

It's a hard war to protect the whole family.

But I'm glad I found this forum and met all kind people here.

Take care,

Shara

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Lymetoo
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Read this link thoroughly:

Western Blot explanation:
http://tinyurl.com/ffn3x

From the above link, written by Dr C of MO:

"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.

And many drs do consider 41 to be significant.

Are you on abx?? I would suggest trying abx for several weeks or months to see what happens. [herx, feel better, etc] .. Then retest thru Igenex if a test is important to you.

Remember that Lyme is a clinical diagnosis. Have you had a tick bite? Do you have a lot of the symptoms?? Those questions are important in making a clinical diagnosis.

My own test looked about like yours......and I did the above. Took abx, and retested. About 6 more bands showed up!!

And be aware that Quest is worthless.

--------------------
--Lymetutu--
Opinions, not medical advice!

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sstone
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Yes, We all have symptoms and had tick bite histroy. My husband's tests even from quest was positive.

I'm also sure we all have lyme.

My husband and my old one are on Abx for about 3 weeks. My husband had the prex just from PCP for 100mg Doxy twice a day for 6 weeks before finding a LLMD. My daughter is taken care by Dr J.

My husband seems has no bad herxing. I let him have hot bath and only he complains muscle pain.

My daughter had sleep problem(woke up at night and kept awake) in Sep. She is on Abx and she has the sleep problem again now. Also she has rash on the but and back. I don't know is it herxing or yeast infection. She is taking Theralac 1 pill once a day.

Also just some updates from my new PCP,


Yesterday I went to see my new PCP, she seemed to be nice and took the papers I printed and ask me to send her one info. She knows few about lyme disease but seems to be willing to learn. I tried to find a good PCP while I go to see a LLMD. I mentioned that LD is a clinical disgnosis disease and I saw a statement from FDA says so and no single test should be solely used to diagnose LD. She asked me to send to her.
I'm trying to find it in my bookmark and I could not find it. Could anybody throw a link?

Thanks for caring,

Shara

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timaca
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I would suggest that you also get tested at MDL lab (www.mdlab.com) and Stonybrook lab (www.path.sunysb.edu/labs/ticklab/TICKLAB.htm)

Each lab test result seems to shed a bit more light on the situation.

Timaca

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bettyg
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shara, try this 1 or the other should state this!:


Print & read Dr. Burrascono's 2005 lyme treatment guideline info first; you will come back to this often ....long-term antibiotics.
http://www.ilads.org/files/burrascano_0905.pdf

11-1-06 ILADS ``EVIDENCE-BASED'' GUIDELINES FOR MANAGEMENT OF LYME DISEASE !
http://www.ilads.org/files/ILADS_Guidelines.pdf

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Lymetoo
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I mentioned that LD is a clinical disgnosis disease and I saw a statement from FDA says so and no single test should be solely used to diagnose LD. She asked me to send to her.
I'm trying to find it in my bookmark and I could not find it. Could anybody throw a link?

I think it is stated at the bottom of your Igenex test.

--------------------
--Lymetutu--
Opinions, not medical advice!

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bettyg
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tutu, thanks for taking the words from my mouth that my fingers wouldn't cooperate on typing!

i know it's there definitely!! on igenex! [Wink]

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sstone
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Yes, I saw two lines on the bottom of Igenex. But the doctor may not trust this because it comes from igenex.

These trust FDA and CDC more.

I found the warning from FDA in
http://www.fda.gov/medbull/summer99/Lyme.html and sent to my pcp.


FDA Medical Bulletin * Summer 1999 * Final Issue

Lyme Disease Test Kits: Potential for Misdiagnosis
By S. Lori Brown, Ph.D., M.P.H., Sharon L. Hansen, Ph.D., John J. Langone, Ph.D., Nancy Lowe, M.A., and Nancy Pressly, B.S. Engr., Center for Devices and Radiological Health

The Food and Drug Administration (FDA) is concerned about the potential for misdiagnosis of Lyme disease based on the results of commonly marketed tests for detecting antibodies to Borrelia burgdorferi, the organism that causes Lyme disease. It is important that clinicians understand that a positive test result does not necessarily indicate current infection with B. burgdorferi, and a patient with active Lyme disease may have a negative test result. (1-5)

The tests should be used only to support a clinical diagnosis of Lyme disease and should never be the primary basis for making diagnostic or treatment decisions. Diagnosis should be based on a patient history, which includes symptoms and exposure to the tick vector and physical findings. The most definitive diagnostic procedure is biopsy and isolation of B. burgdorferi in culture.

Assays for anti-Borrelia burgdorferi (anti-Bb) can provide evidence of previous or current infection, but to improve reliability FDA supports the Centers for Disease Control and Prevention (CDC) recommendation for two-step testing and interpretation of results (1).

The first step is to perform an assay that detects either total or class-specific antibodies (IgM or IgG) by using enzyme-linked immunosorbent technology ("ELISA" or "EIA") or indirect immunofluorescence microscopy ("IFA"). IgM levels usually peak 3 to 6 weeks after infection. IgG antibodies begin to be detectable several weeks after infection and may continue to develop for several months and generally persist for years.

A negative result indicates only that there was no serologic evidence of infection with B. burgdorferi. It should not be used as the basis for excluding B. burgdorferi as the cause of illness, especially if the blood was collected within 2 weeks of when symptoms began.
A positive or equivocal result is presumptive evidence of the presence of anti-Bb. It should always be followed by second-step testing and should not be reported until the second step testing is completed.

The second step is to perform a Western-blot (immunoblot) assay, a more specific assay than that used for the first step

A negative result indicates that no reliable serologic evidence of B. burgdorferi infection was present. A negative result should not be used as the sole basis for excluding B. burgdorferi as the cause of illness. If Lyme disease is suspected, a second specimen collected 2 to 4 weeks after the first specimen should be tested. If retesting, do the first step and if the result is positive or equivocal, do the second step.
A positive result provides serologic evidence of past or current infection with B. burgdorferi. Because the presence of even specific antibodies to B. burgdorferi does not always indicate current infection, a positive result can support, but not establish, a clinical diagnosis of Lyme disease.
Even using the two-step approach, the sensitivity and specificity of the combined test results are inadequate. Because assays for anti-Bb should be used only for supporting a clinical diagnosis of Lyme disease and not for "screening" asymptomatic individuals, the result of the first-step assay is best described as "initial" rather than "screening." Likewise, the second-step Western-blot assay is best described as "supplemental" rather than "confirmatory", because of the low specificity for detecting IgM anti-Bb. Thus, a positive IgM anti-Bb result alone is not adequate for supporting a diagnosis of Lyme disease in persons with illness of greater than one-month duration.

Several factors contribute to the limitations of using ELISA, IFA, or Western blot tests for supporting a diagnosis of Lyme disease. The stage of disease in which the specimen was taken is critical. Many patients with active or recent infections do not have detectable anti-Bb in a single specimen. This happens because such antibodies often develop after manifestations of early infection or because detectable anti-Bb may diminish or never develop in patients treated with antibiotics. Further, a positive test result can be true evidence of previous infection with B. burgdorferi and unrelated to a current illness. Assays for anti-Bb may yield false-positive results, because antibodies to B. burgdorferiantigens may cross react with antigens associated with autoimmune diseases or from infection with other spirochetes, rickettsia, ehrlichia, or other bacteria such as Helicobacter pylori. (6,7)

In summary, serologic testing is not useful early in the course of Lyme disease, because of the low sensitivity of tests in early disease. Serologic testing may be more useful in later disease at which time sensitivity and specificity of the test is improved.

References

Center for Disease Control and Prevention. Recommendations for test performance and interpretation from the second national conference on serologic diagnosis of Lyme Disease. MMWR 1995; 44:590-591.
Association of State and Territorial Public Health Laboratory Directors and the Centers for Disease Control and Prevention. Recommendations. In: Proceedings of the Second National Conference on Serologic Diagnosis of Lyme Disease (Dearborn, Michigan). Washington, DC: Association of State and Territorial Public Health Laboratory Directors 1995; 1-5.
Craven RB, Quan TJ, Bailey RE, Dattwyler RJ, Ryan RW, Sigal LH, Steere AC, Sullivan B, Johnson BJB, Dennis DT, Gubler DJ. Improved serodiagnostic testing for Lyme disease; results of a multi center serologic evaluation. Emerging Infect Dis 1996; 136-140.
Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State Laboratory of Hygiene/College of American Pathologists proficiency testing program. J Clin Microbiol 1997; 35:537-543.
Johnson RC, Johnson BJB. Lyme disease: serodiagnosis of Borrelia burgdorferi sensu lato infection. In: Rose NR, Macario EC, Fahey JL, Freidman H, Penn GM, eds. Manual of Clinical Laboratory Immunology, 5th ed. Washington, DC: American Society for Microbiology, 1997: 526-533.
Magnarelli LA, Miller JN, Anderson JF, Riviere GR. Cross-reactivity of nonspecific treponemal antibody in serologic tests for Lyme disease. J Clin Microbiol 1990;28:1276-1279.
Schwan TG, Burgdorfer W, Rosa PA. Borrelia. In: Murray PR, Baron EJ, Pfaller MA, Tenover FC, Yolken RH, eds. Manual of Clinical Microbiology, 6th ed. Washington, DC: American Society for Microbiology, 1995:626-635.

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