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» LymeNet Flash » Questions and Discussion » Medical Questions » Clongen

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Author Topic: Clongen
SForsgren
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Has anyone done any of their panels? What were your thoughts? Did you find the lab more helpful than others?

I recently ran their Brucella panel, Rickettsia panel, and their WB. Waiting for results now, but I feel at this point like the lab is definitely on the leading edge in terms of what they are offering in their assays.

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Be well,
Scott

Posts: 4617 | From San Jose, CA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
feelfit
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I had a blood smear only. I spoke to Dr. K in person and he drew my blood. I was impressed with his knowledge and agree that he is on the leading edge as far as what is being offered.

He also has some somewhat novel treatment ideas.

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jenny76
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I had a Babesia and Bartonella panel from them and my Babesia came back positive. My LLMD said that he has been extremely impressed with them and that he is confident in my results.

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Never, Never, Never give up!

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Doomer
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Feelfit,

I would be interested in knowing what his novel treatment ideas are.

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seibertneurolyme
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Hubby had a blood smear and a mycoplasma panel. Mycoplasma was negative. Have discussed the blood smear here many times.

One problem with the lab is that Dr K does all the blood smears himself. Good in some respects, but bad from the standpoint of severely limiting the number of samples the lab can examine.

Also, the good doc is not good at delegating clerical details -- any questions about billing and sample collection etc are routed to him rather than a secretary or other lab tech. The guy is overextending himself as do many small business people.

Do feel he is very knowledgeable.

In theory the babesia and bartonella panels sound good -- test for many species etc, but I have read conflicting reports on whether some accuracy is sacrificed by this testing method. Would love to see some solid scientific evidence showing accuracy of testing results. Have been told that the lab includes negative controls which is very good lab practice.

But the real problem is that many of the panels or maybe all? are PCR panels. And PCR tests are extremely subject to false negative results -- no one can tell me what the actual percentages are for bart or babs etc.

From everything I have read a person would need to do about 20 PCR tests to rule out a false negative Lyme PCR. Just don't know how that compares to other tickborne diseases.

And yes, Dr K will admit that PCR tests give lots of false negatives, but he couldn't tell me any percentages.

Bea Seibert

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jenny76
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Bea,

Are there also false positives with the PCR testing here or just false negatives??

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Never, Never, Never give up!

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seibertneurolyme
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Jenny,

I have always been told that a positive PCR test is reliable since they are so hard to get. Only false negatives -- no false positives.

For just about every other infection except Lyme a positive PCR test is considered the gold standard of testing. But of course the IDSA says PCR is not a valid test for Lyme.

And yes, hubby does have one positive PCR Lyme test although he only had one of probably 10 or 15 Western blot tests show only one positive band one time.

Bea Seibert

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SForsgren
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I'd have to find the number for PCR that he mentioned at the conference, but in blood for Borrelia, PCR was very low - maybe 20% sensitive.

--------------------
Be well,
Scott

Posts: 4617 | From San Jose, CA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
   

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