MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Can you have a negative test from Igenex even when you have a lot of Lyme symptoms?
Posts: 2118 | From USA | Registered: Aug 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6454 | From Louisville, Ky | Registered: Jan 2002
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posted
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.
Posts: 41 | From CA | Registered: May 2017
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A negative test cannot rule out the possibility of infection. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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:
. . . 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. . . .
06 May 2016 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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:
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.
A Very Brief Look at Treating Simultaneous Mycoplasma and Bartonella Coinfections: pages 358 - 364
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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)
Posts: 9931 | From Maryland | Registered: Dec 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
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.
Posts: 2831 | From Florida | Registered: Nov 2016
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posted
Manna .. If it's for your hubby it's rather useless. A test will not measure how one is doing as far as recovery.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96115 | From Texas | Registered: Feb 2001
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
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.
Posts: 2118 | From USA | Registered: Aug 2011
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posted
Do you know if it was totally negative. Or were there some positive bands. Curious mostly.
Posts: 61 | From Lees Summit, MO | Registered: Jun 2017
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
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!
Posts: 2118 | From USA | Registered: Aug 2011
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posted
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.
Posts: 30 | From Las Vegas | Registered: Mar 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
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.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
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?
Posts: 2118 | From USA | Registered: Aug 2011
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
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.
Posts: 2118 | From USA | Registered: Aug 2011
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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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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