DR. MR says DNA Connexions test may not be accurate

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k07
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   Posted 2/15/2017 12:58 PM (GMT -7)   
Have you guys seen this? You have to have subscription to watch (2.99 a month). Basically, Dr. MR has called and talked to DNA Connexions and found that they have not done any validation studies to prove that their test is accurate. The validation study entails taking proven cdc criteria lyme cases and doing test on those people. Apparently most labs - he cites Advanced Laboratories - do the validation study.

He said he may be wrong about the test, but it's up to them to prove him wrong with a validation study.

I did this test in December and came up fully negative.

www.treatlyme.net/treat-lyme-book/dna-connexions-tests/

mm57553
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   Posted 2/15/2017 1:23 PM (GMT -7)   
I did the regular CDC test, and it was negative. I did DNA Connexions, and it was positive. I didn't watch what he said, but I'm not so sure I agree with him. Most LLMDs agree that PCR testing (like DNA Connexions does) is the most accurate available right now, including Dr. H. I know people who have had negative Igenex tests and then tested positive on DNA Connexions.

mm57553
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   Posted 2/15/2017 1:26 PM (GMT -7)   
Just curious, when you did your DNA Conneions test, did you exercise vigorously for 30 minutes (at least) or get a deep tissue massage first? They recommend doing one of those to get a more accurate result.

julymorning
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Date Joined Jul 2015
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   Posted 2/15/2017 1:26 PM (GMT -7)   
I think the importance of the accuracy of the test is for people or their Doctors that are on the fence about their infection.

If someone has the symptoms, and gets a positive connexions test, I wouldn't argue with it.
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme (false)positive '92 untreated,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, Cong. Heart Failure, osteoarthritis. Treating PHY. an Internist, LLMD out of the question. Used Doxy, Zithro and Flagyl since June '15, self pulsed.Current treatment with JK, Milk Thistle, kudzu, beginning Hout. shortly.

Rikky1
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Date Joined Jun 2015
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   Posted 2/15/2017 1:43 PM (GMT -7)   
i did intense exercising 1 hour before my DNA Connexions test back in Dec 2016. I came up positive for Lyme (which i did twice before via Igenex) but negative for everything else (I tested positive twice for Babesia Duncani via Igenex as well last test Apr 2016).

Girlie
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Date Joined May 2014
Total Posts : 27961
   Posted 2/15/2017 2:09 PM (GMT -7)   
Why don't they do the validation studies if they are wanting to be used for lyme and co's testing?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

k07
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Date Joined Sep 2015
Total Posts : 2196
   Posted 2/15/2017 3:19 PM (GMT -7)   
mm57553 said...
Just curious, when you did your DNA Conneions test, did you exercise vigorously for 30 minutes (at least) or get a deep tissue massage first? They recommend doing one of those to get a more accurate result.


Yes, I exercised for 30 min but was not able to wait an hour for collection. I see Dr. H, and he does not recognize the DNA connexions test and didn't pay any attention to my results. I did it on my own.

I agree, PCR is a definitive test, I think the questions lie in the lab itself. Dr. MR says he is seeing people come in with positives that he does not see a match in their symptoms clinically. I don't know who's right, but I thought BlueLyme also said he knew someone that visited the lab and may have been unimpressed? I can't remember exactly.

Oh, and I was negative through Labcorp too. My IGeneX was IND, with a positive epitope on band 31. Dr. H did a c6 ELISA and it came back 5x the upper limit. I also had and IGG + for RMSF and still trying to figure out if my + for Brucella is a true positive.

Post Edited (k07) : 2/15/2017 3:27:07 PM (GMT-7)


k07
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   Posted 2/15/2017 3:23 PM (GMT -7)   
Girlie said...
Why don't they do the validation studies if they are wanting to be used for lyme and co's testing?


I wondered the same thing. I learn something new every day. Now I know to check this stuff out before I jump into testing with the latest hot lab! Maybe they will do the studies now and prove their test is accurate. I hope so. But it does make me question them.

Girlie
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Date Joined May 2014
Total Posts : 27961
   Posted 2/15/2017 3:53 PM (GMT -7)   
k07 said...
Girlie said...
Why don't they do the validation studies if they are wanting to be used for lyme and co's testing?


I wondered the same thing. I learn something new every day. Now I know to check this stuff out before I jump into testing with the latest hot lab! Maybe they will do the studies now and prove their test is accurate. I hope so. But it does make me question them.


Are you seeing THE Dr. H.?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Krimpet 🍔
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Date Joined Apr 2016
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   Posted 2/15/2017 4:00 PM (GMT -7)   
Well this is the only test that came back positive for me and one of my doctors has a lot of trust in their work.

I will be sharing this with doctor #2 because he spoke with them recently (interrogating) them to a certain extent about how they do what they do. He said he will accept the results, but he still has some outstanding technical issues with them.

Do we know that all the other labs have performed a validation study? But just because they haven't done a validation study doesn't necessarily mean that they are perpetuating false results.
Lyme Moderator

Quest/labcorp test 3/2016=negative Lyme, pos EBV, myco p
Quest/labcorp 6/2016= pos EBV, HHV6, myco p, negative Lyme and co's
Igenex test 7/7016=negative 31-IND, 41-+++
DNA connexions 01/2017= Lyme (NSA) & ehrlichia
________________________________________________
February words of encouragement: "Use your eyes to see the POSSIBILITIES, not the PROBLEMS"

mm57553
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Date Joined Jan 2017
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   Posted 2/15/2017 4:26 PM (GMT -7)   
k07 said...
mm57553 said...
Just curious, when you did your DNA Conneions test, did you exercise vigorously for 30 minutes (at least) or get a deep tissue massage first? They recommend doing one of those to get a more accurate result.


Yes, I exercised for 30 min but was not able to wait an hour for collection. I see Dr. H, and he does not recognize the DNA connexions test and didn't pay any attention to my results. I did it on my own.

I agree, PCR is a definitive test, I think the questions lie in the lab itself. Dr. MR says he is seeing people come in with positives that he does not see a match in their symptoms clinically. I don't know who's right, but I thought BlueLyme also said he knew someone that visited the lab and may have been unimpressed? I can't remember exactly.

Oh, and I was negative through Labcorp too. My IGeneX was IND, with a positive epitope on band 31. Dr. H did a c6 ELISA and it came back 5x the upper limit. I also had and IGG + for RMSF and still trying to figure out if my + for Brucella is a true positive.


I think Dr. MR sees a lot of people with positive tests without matching symptoms because I think most of the population probably is infected but are just asymptomatic. Kind of like Epstein Barr. My LLMD has gone to seminar and training with Dr. H and said Dr. H is the one who told him about and recommended he start using the DNA Connexions test.

Girlie
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Date Joined May 2014
Total Posts : 27961
   Posted 2/15/2017 4:58 PM (GMT -7)   
Krimpet 🍔 said...
Well this is the only test that came back positive for me and one of my doctors has a lot of trust in their work.

I will be sharing this with doctor #2 because he spoke with them recently (interrogating) them to a certain extent about how they do what they do. He said he will accept the results, but he still has some outstanding technical issues with them.

Do we know that all the other labs have performed a validation study? But just because they haven't done a validation study doesn't necessarily mean that they are perpetuating false results.


Igenex does. But, not sure about others'.

The lab I recently tested bartonella positive via pcr probably doesn't...not sure.

Igenex website:

"..... hands on and develop our testing criteria in-house based on years of evidence and validation studies."
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 2/15/2017 5:10:10 PM (GMT-7)


Rikky1
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Date Joined Jun 2015
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   Posted 2/15/2017 5:04 PM (GMT -7)   
i got 2 positive babesia fish tests from igenex but dna connexions showed negative 5 months later yet i haven't treated babesia during that time. makes me wonder if dna is all that its cracked up to be but this is purely anecdotal based on my experience. would love as many stories of people doing this test to further opinion.

Girlie
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Date Joined May 2014
Total Posts : 27961
   Posted 2/15/2017 5:13 PM (GMT -7)   
Maybe bluelyme will have some information about this....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

k07
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Date Joined Sep 2015
Total Posts : 2196
   Posted 2/15/2017 7:32 PM (GMT -7)   
Girlie said...
k07 said...
Girlie said...
Why don't they do the validation studies if they are wanting to be used for lyme and co's testing?


I wondered the same thing. I learn something new every day. Now I know to check this stuff out before I jump into testing with the latest hot lab! Maybe they will do the studies now and prove their test is accurate. I hope so. But it does make me question them.


Are you seeing THE Dr. H.?

Yes

k07
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Date Joined Sep 2015
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   Posted 2/15/2017 7:36 PM (GMT -7)   
mm57553 said...
k07 said...
mm57553 said...
Just curious, when you did your DNA Conneions test, did you exercise vigorously for 30 minutes (at least) or get a deep tissue massage first? They recommend doing one of those to get a more accurate result.


Yes, I exercised for 30 min but was not able to wait an hour for collection. I see Dr. H, and he does not recognize the DNA connexions test and didn't pay any attention to my results. I did it on my own.

I agree, PCR is a definitive test, I think the questions lie in the lab itself. Dr. MR says he is seeing people come in with positives that he does not see a match in their symptoms clinically. I don't know who's right, but I thought BlueLyme also said he knew someone that visited the lab and may have been unimpressed? I can't remember exactly.

Oh, and I was negative through Labcorp too. My IGeneX was IND, with a positive epitope on band 31. Dr. H did a c6 ELISA and it came back 5x the upper limit. I also had and IGG + for RMSF and still trying to figure out if my + for Brucella is a true positive.


I think Dr. MR sees a lot of people with positive tests without matching symptoms because I think most of the population probably is infected but are just asymptomatic. Kind of like Epstein Barr. My LLMD has gone to seminar and training with Dr. H and said Dr. H is the one who told him about and recommended he start using the DNA Connexions test.


That's really weird! When i asked his NP about the test he said he had never heard of it. Then when I sent my results to staff they responded with "this is a test we don't use." I see him the end of March so if I can remember I will ask him.

bluelyme
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Date Joined Nov 2015
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   Posted 2/15/2017 7:57 PM (GMT -7)   
Wb neg
igx pos
Absolute pos
dna connex positive

i did it for coinfections and they typed my bartonella as the super fun bacciliformis..

worth every penny
dr k endorses it ..
my friend in colorado said she visited it and its facility is rinky deaky but they are up grading soon

mm57553
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Date Joined Jan 2017
Total Posts : 523
   Posted 2/16/2017 10:30 AM (GMT -7)   
k07 said...
mm57553 said...
k07 said...
mm57553 said...
Just curious, when you did your DNA Conneions test, did you exercise vigorously for 30 minutes (at least) or get a deep tissue massage first? They recommend doing one of those to get a more accurate result.


Yes, I exercised for 30 min but was not able to wait an hour for collection. I see Dr. H, and he does not recognize the DNA connexions test and didn't pay any attention to my results. I did it on my own.

I agree, PCR is a definitive test, I think the questions lie in the lab itself. Dr. MR says he is seeing people come in with positives that he does not see a match in their symptoms clinically. I don't know who's right, but I thought BlueLyme also said he knew someone that visited the lab and may have been unimpressed? I can't remember exactly.

Oh, and I was negative through Labcorp too. My IGeneX was IND, with a positive epitope on band 31. Dr. H did a c6 ELISA and it came back 5x the upper limit. I also had and IGG + for RMSF and still trying to figure out if my + for Brucella is a true positive.


I think Dr. MR sees a lot of people with positive tests without matching symptoms because I think most of the population probably is infected but are just asymptomatic. Kind of like Epstein Barr. My LLMD has gone to seminar and training with Dr. H and said Dr. H is the one who told him about and recommended he start using the DNA Connexions test.


That's really weird! When i asked his NP about the test he said he had never heard of it. Then when I sent my results to staff they responded with "this is a test we don't use." I see him the end of March so if I can remember I will ask him.


Weird. I don't know how long ago it was. It seems like my LLMD ends up at a lot of the same seminars and training sessions as Dr. H. He also uses very similar protocols. I would absolutely trust Dr. H though. If funds were unlimited, and I could see anyone, he would be my choice. I had good results with DNA Connexions and know others who have as well. But there are certainly other reliable labs out there.

Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 2/16/2017 10:40 AM (GMT -7)   
k07 said...

I agree, PCR is a definitive test, I think the questions lie in the lab itself.


There are plenty of people that have a PCR test come back negative even though they have all the signs and symptoms of Lyme and respond well to treatments. So I don't believe that PCR is a good definitive test. It's really not much different than the antibody testing as far as accuracy.

This is because it can take only a small amount of bacteria to cause a great deal of symptoms for many people - and enough active bacteria may not be collected in the blood sample.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

ChickNorris
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Date Joined Jan 2012
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   Posted 2/16/2017 10:41 AM (GMT -7)   
bluelyme said...
Wb neg
igx pos
Absolute pos
dna connex positive

i did it for coinfections and they typed my bartonella as the super fun bacciliformis..

worth every penny
dr k endorses it ..
my friend in colorado said she visited it and its facility is rinky deaky but they are up grading soon


You know, in my opinion if a lab or clinic is rinky dink it's because they are spending their money on things other than a nice or new office building. These LLMD's and others with state of the art brand new fancy facilities make me think, AH, that's why it's so expensive. They got to pay their rent. Haha!
I don't know much about DNA connexions but I do know that my new LLMD does use them if Igenex is inconclusive. They said they will do a big boost of IM antibiotics the day before to push the microbes out of hiding. I think there is some merit to them. But TBI's are just difficult to test for. No testing is perfect.
Igenex 9/2016 31-I, 39-I, 41-++, 58-+
CD57: 28
Positive for early antigen EBV

11/22/16 started Doxy 100mg/2x a day, Samento and Banderol 10 drops/2x a day
1/10/17 stopped Doxy, abx break

Purrrsiankitty
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   Posted 2/16/2017 10:52 AM (GMT -7)   
Yes Blue, there will always be error. Clinical is key, which any llmd would use as a guide, but then I guess, I'm preaching to the choir. 😊
Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 6 mo of doxy, azith, ceftin. Finished 11/16. Cowden start 12/16.

k07
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   Posted 2/16/2017 11:01 AM (GMT -7)   
Traveler said...
k07 said...

I agree, PCR is a definitive test, I think the questions lie in the lab itself.


There are plenty of people that have a PCR test come back negative even though they have all the signs and symptoms of Lyme and respond well to treatments. So I don't believe that PCR is a good definitive test. It's really not much different than the antibody testing as far as accuracy.

This is because it can take only a small amount of bacteria to cause a great deal of symptoms for many people - and enough active bacteria may not be collected in the blood sample.


Yeah, I guess I should have stated that clearer. I meant definitive in if you get a positive it's 100%.

Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 2/16/2017 11:07 AM (GMT -7)   
I would definitely agree with that, K07! Any positive test should be taken very seriously though.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

1000Daisies
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   Posted 2/16/2017 11:29 AM (GMT -7)   
I don't jump to the hottest recommended things any more. Been there... done that. I also am not going to the big name doctors (I really value our functional medicine MD). Not going to the treatment centers either (although I do debate this with myself). And I'm not jumping on every treatment either.
I've been doing this for several years now, and I have gone down that road of being excited about the next doctor, next treatment... only to be severely let down and disappointed when it failed. Some day I should list out all of the things we've done (and failed at). Anyways... I openly admit to being much more cautious and critical of the paths I am choosing nowadays... especially with the cost and logistics of treating four people in my family now! It was much different when we were only treating one child.

As for this lab, I've said it before, but I'd love to test my family for this. But due to cost and high false negatives and that it likely wouldn't affect our treatment much anyways (doing herbals), we are skipping for now. However, if we were going down the antibiotic route AGAIN, then I'd definitely be doing a test like this instead. For the money, it's a good value for covering several different things. I'd be interested in the coinfections, but honestly, there are only a few strains it tests for though... so I'd have concerns about that.

My functional medicine MD doctor said that because it is PCR, it would have a high number of false negatives (that's the shortcoming). But if it's positive, then that tells you something. If it's negative, it doesn't necessarily tell you anything.

We have personally done Igenex, Advanced Labs, and iSpot so far.

Rikky1
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Date Joined Jun 2015
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   Posted 2/16/2017 11:50 AM (GMT -7)   
>>it can take only a small amount of bacteria to cause a great deal of symptoms for many people

I think this comment by Traveler needs to be highlighted. It explains in part the inaccuracy of testing as well as why some folks need to do immuno-modulation and not just killing the bacteria cause you may never be able to eradicate them 100%
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