D Bergy
Posts: 2924 | From Minnesota | Registered: Aug 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I am going to do it later this month. The kit is on the way...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Scott or anyone else in the know,
I was very pleased and surprised that Medicare is covering this new test. That is good news for those who have never been able to afford any testing.
Do you have any opinion on whether the QRiBb results should still be considered valid? I wonder since I was dx'd with it, and now it is no longer being used.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I don't think it changes that validity (or lack of validity depending on what your previous opinion was) of the Q-RiBb.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Scott, I was never sure how valid the QRiBb was. I had two of them, one before tx with herbs, and one after 8 months on herbs. My serial dilution had dropped from 1:128 to 1:32 in 8 mos. I could not afford it again, and decided to gauge my improvement by my symptoms. Judging by my symptoms, I've got one foot in the grave, and the other on a banana peel.
After 2 yrs. on Samento, I suddenly developed 3 EM rashes in a row, all in the same place, over a period of 4 months. One of them was even confirmed by my duck PCP. Those are what I consider to be my smoking gun!
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Reading the link...
"The antibody may not be present."
Boy, is that an understatement!
EM rashes (allergic "signal" as we react to foreign proteins)
"Histamine released into the synapses is broken down by acetaldehyde dehydrogenase, the same enzyme used in the processing of alcohol and acetaldehyde gas produced during combustion.
It is the deficiency of this enzyme
that triggers an allergic reaction as histamines
pool in the synapses."
Bb's zinc fingers contain histidine...which converts to histamine.
MAYBE...the "cloak" (Salp 15) is off and you are finally reacting to Bb's actual proteins.
Mg is an anti-histamine. I've often wondered about Benadryl. (Thinking out loud.) I gotta research HOW it works.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Hi All, The new test gets my approval.... Took me ages to get a clinical diagnosis, and now I have a confirmation with the test from central florida research. POSITIVE! Amazing, after years of suffering with dozen of diagnosed illnesses. Rocker
Posts: 9 | From NJ | Registered: Mar 2007
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posted
I have a test kit from these guys sitting here. I'm thinking about running the flow cytometry test. I'm a little wary, as one of the LLMDs I consult with says that he believes that Bowen (who evolved into Central Florida) generally practice bad science, and just about everything comes back positive.
I probably won't get the Western Blot through them, as I have my previous WBs from IgeneX and would like to compare apples to apples, so to speak.
Reading the test description I'm a little wary of this "Antibody test that detects antigen", way of describing it... anyone have more info on this?
Posts: 691 | From East coast, USA | Registered: Jun 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Klutzo, from reading Sandi B's previous posts about the Q-RIBb and this new test, it appears that the only thing ``wrong'' with the Q-RIBb test was that it picked up fragments of Borrelia b., not just whole organisms, which sometimes gave an inaccurate ``count'' of organisms. The Flow Cytometry test is supposed to fix all that.
If I'm wrong about that, hopefully Sandi will post and correct me.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hey, Rocker - that is great news (well, not really, but you know what I mean).
Blackstone, how did you get a test kit? I thought the kits had to be ordered by medical practitioners?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I got a positive 1:132 QRIBb, and a negative flow cytometry two months later.
Edited. Sorry, that's 1:128. I was being dyslexic.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
bejoy- were you on antibiotics at the time you tested with the flow cytometry? What was your western blot results? I'm just curious...my 13-year old niece [diagnosed with motor neuron syndrome] had the highest QRIBb test result at 1:128.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Dug this up in response to a recent post, and noticed there was an unanswered question to me.
I was on some herbal antibiotics for about a month, but no prescriptions.
Also, I had been using the Soda SP lite for about a week. It is supposed to clean bacteria out of the blood.
So I have no way of knowing if the Q-RIBb was wrong, flow cytometry was wrong, the Q-RIBb was picking up another organism, I have a lyme borellia strain that flow cytometry doesn't test for, the Sota lite actually works and gave me a clean blood test...
My hunch is that 1)I have a lyme borrelia strain that doesn't show up on most tests, and 2)the Sota pulser did clear some infection from my blood.
In any case, I actually have more faith in CFR flow cytometry because my test came back negative, while some other people have gotten positives.
Then again, it's only testing specifically for Borrelia Bergdorferi. If you have a different strain like I may have, you're still looking at a clinical diagnosis!
And no blood test is going to pick up the neuro lyme that may be lurking in the closed nervous system of the CSF.
Best to all in your testing adventures!
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
OK So has anybody else used this test yet and what are the results.... Posts: 408 | From NY | Registered: Jan 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
My CFR came back negative which seems consistent with some other testing and my CD57 jump from 65 to 161 over the last year. I doubt it is really gone, but doesn't appear to be rampant in the blood at least....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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