This is topic Negative Igenex test? in forum Medical Questions at LymeNet Flash.


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Posted by MannaMe (Member # 33330) on :
 
Can you have a negative test from Igenex even when you have a lot of Lyme symptoms?
 
Posted by map1131 (Member # 2022) on :
 
I have a Lyme friend that never tested positive for Lyme and by golly she did have Lyme. She did test positive on bart & babs.

So yes, I've heard it and read it time after time in all the years around Lyme world.

Do you happen to have a Lyme WB that was positive in the past?

Pam
 
Posted by bullmastiffluvr (Member # 50250) on :
 
I just had negative tests from Igenix and still extremely fatigued. From 3-5 pm each day I feel like I am dying most of the time.
 
Posted by Keebler (Member # 12673) on :
 
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A negative test cannot rule out the possibility of infection.
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Posted by Keebler (Member # 12673) on :
 
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http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease


The way a lyme test is determined to be positive or negative is not by science but by politics of the IDSA. The ELISA test is a very poor test. A Western Blot, both IgM and IgG matter.

The way the IDSA decide the way the numbers must line up is just odd. Here's what matters most:

lyme is not to be diagnosed by a test. The test helps but what matters most is the clinical presentation, history, etc. Then, take into account what ILADS LLMDs look at:

http://drcharlescrist.net/testing-for-borreliosis.html

Testing for Borreliosis

Excerpts:

. . . The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons.

The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 59, 66 and 83-93. . . .

[Explains that there are various strains of borellia, so testing often misses the mark. Even if you have not traveled to various states, birds that fly - and can carry ticks and drop them off - have and they often land in NYC, too.]

. . . The same is true for co-infections. The babesia in Missouri is called MO-1. It is a different babesia. There are different ehrlichia.

It would appear there is a different bartonella. When you have different strains of germs, the test results may be falsely negative. . . .

[lots more detail here]

&

http://www.betterhealthguy.com/lyme/testing

Testing Detail Overview for Tick-Borne Infections

06 May 2016
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Posted by Keebler (Member # 12673) on :
 
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MannaMe,

As you've been here for a while (and likely you've already been diagnosed so retesting after diagnosis not very helpful). So, I'm thinking you must be asking for someone new to lyme. Please share with them, or for others to refresh:


For anyone new to lyme or other tick-borne disease, these are among the top patient education, advocacy and public awareness organizations:


http://www.ilads.org

ILADS - International Lyme & Associated Diseases Society


https://www.lymedisease.org/

Lyme Disease.org


http://www.lymediseaseassociation.org

Lyme Disease ASSOCIATION


https://globallymealliance.org/

Global Lyme Alliance
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Posted by Keebler (Member # 12673) on :
 
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Also consider Chlamydia pneumonia, in a chronic state:

http://www.cpnhelp.org/

Chlamydia Pneumoniae Help and Treatment.

&

Prof. Garth Nicholson's research in Mycoplasma is to be commended. He does not treat. Still, he is THE top expert researcher in this field (although that does not mean others don't have some good insight, too).

He has been a presenter at various ILADS conference on this topic.

http://www.immed.org/

MYCOPLASMAS discussed here - Institute for Molecular Medicine


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/134246?#000000

MYCOPLASMAS - INFORMATIONAL LINKS SET


https://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

May 5, 2013 - $13.

by Stephen Harrod Buhner

Mycoplasma: Pages 17 - 266 [protocol: pages 108-266]

Bartonella: Pages 267 - 357

A Very Brief Look at Treating Simultaneous Mycoplasma and Bartonella Coinfections: pages 358 - 364
 
Posted by Keebler (Member # 12673) on :
 
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bullmastiffluvr,

in addition to finding a good LLMD, be sure to take adrenal support

[Cordyceps; Ashwaghanda; Eleuthero; Rhodiola if it is not too stimulating. The first two are best to start with.)

That kind of fatigue, I found to be a real medical emergency & should be treated as such by assertive and disciplined, determined REST

-- lie down flat in a dark & quiet room BEFORE you feel like melting into the floor - if you can . . .

and also be sure to avoid gluten & all processed foods. These things can help as you figure out the next steps to assessing / addressing the causes.
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Posted by TF (Member # 14183) on :
 
bullmastiffluvr, this is a classic symptom of lyme disease. See this quote from Burrascano:

"There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance, alcohol use, and sleep deprivation. Advise them to take a break when (or ideally before) the inevitable mid afternoon fatigue sets in (napping is encouraged)." (p. 17)
 
Posted by Bartenderbonnie (Member # 49177) on :
 
MannaMe,

I have Common Variable Immune Disorder (CVID).

It's an immune system disorder where as your body doesn't produce antibodies.

A lot of Lyme patients are diagnosised with this.

Lyme disease hijacks your immune system and renders it disfunctional.

As you know, Lyme tests look for antibodies, not the DNA of the bacteria.

I could take Lyme tests every day, all day, until the sun don't shine, and NEVER test positive.

We need new and better Lyme tests, no doubt about it.
 
Posted by Lymetoo (Member # 743) on :
 
Manna .. If it's for your hubby it's rather useless. A test will not measure how one is doing as far as recovery.
 
Posted by MannaMe (Member # 33330) on :
 
No, its not my hubby. It was my teenager with a lot of symptoms and known tick bites. So we were sure that it is Lyme. The negative test surprised me.
 
Posted by Mashieniblick (Member # 50588) on :
 
Do you know if it was totally negative. Or were there some positive bands. Curious mostly.
 
Posted by MannaMe (Member # 33330) on :
 
I need to go pick up a copy of the test so I can see for myself if it was truly negative.

I'm positive its a false negative! LOL!
 
Posted by johnny_broadway (Member # 14854) on :
 
I've been positive on some Igenex tests but usually am indeterminate/negative. I've never been positive by CDC standards because my immune system is too depressed to make antibodies.

I just did a urine PCR test by DNA Connexions and was actually positive (along with Babs), which was a big surprise. I guess Dr. K recommends having a rolfing session done before the urine collection. My doctor had me exercise beforehand.

Anyways, it was nice to see something definitive finally, even though I didn't doubt I had Lyme.
 
Posted by t9im (Member # 25489) on :
 
My daughter had negative Western Blot's but positive Advanced Lab culture and positive DNA tests.

Blood draw was at the same time so there can be plenty of false negatives from a WB.
 
Posted by MannaMe (Member # 33330) on :
 
Johnny Broadway, what did the PCR test by DNA Connections cost? Is it one you can order by yourself or must you go through a doctor?
 
Posted by MannaMe (Member # 33330) on :
 
Okay, I got a copy of the test results today:

IgG
28 +
31 I
41 ++

IgM
41 I

So is this a totally negative test or not?

We started with Byron White's A-L and A-BAB.

The Babesia symptoms increased with treatment.
 
Posted by Mashieniblick (Member # 50588) on :
 
Hmmm it's not totally negative. Obviously with some bands lighting up. I think I read somewhere band 28 and 31 can only be lit up by Lyme.

Was that an Igenex test or another lab?
 
Posted by MannaMe (Member # 33330) on :
 
Igenex
 
Posted by TF (Member # 14183) on :
 
It is not a negative test!

Read Dr. C's explanation of the Western Blot here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

He considers bands 28 and 31 significant, and 41 is usually considered worth a little also. Here is a quote from him:

"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

[---- from DR C's update from 2005 ---
----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]

This is true regardless of whether it is IgG or IgM.. "

The "I" on band 31 indicates a weak positive.

Burrascano gives his take on the which bands are relevant at page 7 of his Guidelines.
 


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