Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I went to new primary care MD today and he asked for history of my lyme testing: two positive ELISAs in 1993/94, positve Igenex Igm in 2006 and even told him about DNA Connexions positive--he asked if it was CLIA certified and I just found it is.
So they took blood for Mayo WB. I've read that no one gets a positive from them (????}
He told me he had lyme this summer but got treated right away. And his sister had it with meningitis and still has headache.
I went to him for my headaches and possibly to switch to him for primary care. But I'm expecting test to be negative and he'll deny lyme.
Has anyone heard of anyone testing positive with Mayo?
Posts: 1292 | From USA | Registered: Dec 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Marz,
I did. I did! ONE person out of thousands who were tested! And they came here to report it and ask what to do next.
Of course they were also told no treatment needed by the Hold the Mayo Clinic, but at least ONE person we know got a positive test.
In my opinion they are the worst of the worst tests. Always have been. Don't know exactly why, but they are horrible.
Just for curiosity sake, might want to ask your new doc if they treat anyone for Lyme at the Hold the Mayo Clinic.
Head's up for you- they don't.
Not one treating doctor will take chronic Lyme patients at any of the three Hold the Mayo Clinics!
My guess is they've been sued too many times already.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96063 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Western Blot
Posts: 9931 | From Maryland | Registered: Dec 2007
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
He only uses Mayo's lab otherwise not at all associated with them thank goodness!
So were you tested at a Mayo Clinic TF? And what did you mean by "they came here"?
Do you know how many bands they test for?
Since I was there for pain, I'm wondering if he's only testing out of curiosity.
Posts: 1292 | From USA | Registered: Dec 2002
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Marz, I think you mean Tincup, not TF.
Tincup is the one saying she was tested there.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, Marz. I was tested there (my blood was actually) as were many, many others who have been members here, and those who aren't members here.
My comment earlier... "They came here"... meant that the only person I've ever heard of that had a positive Lyme test came to Lymenet and talked about it. He was a new member at the time.
It's been years ago, but I do remember the discussion.
As far as WB bands... from the latest I've heard and it has been a while...
Unless your first test (ELISA/IFA) is positive or borderline, they won't do a Western Blot.
And from the latest I've heard... and again it may have changed so don't hold me to it...
Hold the Mayo does not report bands. They only give you a positive or negative result.
Hopkins does that also, promoted by Paul Auwaerter- the 2006 IDSA guideline author/idiot.
I wouldn't concern myself about it. Most likely it will be negative and if the doc mentions it you can shake it off by saying...
"I figured it would be. They are famous for having the worst lab for Borrelia testing."
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I tested positive on Quest IgM WB. After 6 months of treatment and testing CDC positive on Igenex.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 80% +/- most days. Posts: 3130 | From Massachusetts | Registered: May 2010
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Thanks Tincup. I'll have your line ready or some version of it: "I figured it would be. They are famous for having the worst lab for Borrelia testing."
I'll let everyone know if I'm the second person here who gets a positive!!!
But I'm betting I won't be!
Posts: 1292 | From USA | Registered: Dec 2002
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posted
I tested positive through Mayo a couple of times, but my understanding is this is difficult to do.
I'm not sure why this would be because I would think Mayo uses a standard B31 kit, but I'm not sure about that.
ETA: I may be wrong about the standard B31 kit since the NIH outsources to Mayo for many of its Bb tests, and on a common sense level, outsourcing to a basic B31 kit user seems counter-intuitive.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96063 | From Texas | Registered: Feb 2001
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I missed that it was an antibody cascade and I read results wrong . It's totally negative with a .03 result.
Don't know why person who called said it shows I had lyme but don't now. I tested positive ELISA twice in 1993/94 back when I got sick.
Don't know why I was told it was mayo lab and western blot when its not either one.
And DNA Connexions by PCR this summer found ospB and ospC in urine so guess they're not to be trusted.
Posts: 1292 | From USA | Registered: Dec 2002
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Oh, and I just found the note at the bottom which is why she told me that:
"shows no level of current infection, minimal level of old antibodies"
result was only .03.
Very disappointed in DNA Connexions. Do they make stuff up?
Posts: 1292 | From USA | Registered: Dec 2002
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posted
I have no idea about DNA Connexions or whatever it is.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96063 | From Texas | Registered: Feb 2001
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I did the DNA Connexions test out of pocket. They did do a presentation at ILADS I've read.
Posts: 1292 | From USA | Registered: Dec 2002
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