DR. MR says DNA Connexions test may not be accurate

Hi Bachgirl - welcome!

Good for you - looking deeper into your daughter's symptoms.

Do you have the results of the lyme test? If you could post them here, we could look at them.
Even if a test isn't 'positive' - there can be indications that it is lyme.
Was it a Western Blot she had done? There can be lyme 'specific' bands that show up - even though not enough bands for a positive test result.

I suggest you do a test with Igenex Lab in California. This facility specializes in tick-borne disease testing. I don't know if it's CDC approved...but it is a lab that many Lyme Literate MD's use.
Although, maybe hold off until we see what the other test results were.

Maybe do this Questionnaire - The answer shows the probability/possibility that it is lyme.
Sometimes there are overlooked symptoms...

lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

its weird that almost EVERYBODY tests positive for lyme with DNA connexions.

Does everybody carry around this bug and maybe only 1% of the population actually reacts to it?

very strange. thinking about doing this test myself

WalkingbyFaith said...

Lapis_29 said...
its weird that almost EVERYBODY tests positive for lyme with DNA connexions.

Does everybody carry around this bug and maybe only 1% of the population actually reacts to it?

very strange. thinking about doing this test myself

Have you had any positive test for borrelia?

I was Elisa negative.

Western blot was IGM negative and IGG positive only on 41 and 66.

Igenex was negative. Bands were:
IGM: 41, 45, and 58 positive; 39 Indeterminate
IGG: 41++, 58+, 39 Indeterminate

DNA Connexions was positive for Borrelia burgdorferi F7 and Ehrlichia chafeensis. I did not get a positive on babesia or bartonella, even though I've had lifelong signs and symptoms of bartonella (definitely) and babesia (possibly). The lab notes stated the findings were indicative of long-term infections.

The doctor who ordered the tests told me Ehrlichia was endemic in our area (southern US). The DNA Connexions results made perfect sense to me in light of my symptoms, life history, and WB and Igenex results, and I've never had any reason to doubt the validity of the DNA Connexions test. My current Lyme doctor doesn't use that lab and was not familiar with them.

ok, thanks for the feedback.

its just weird that everyone test pos specifically for lyme through connexions, dont think I have heard of one person testing neg yet.

actually thinkinig of getting their other test which tests for a whole bunch of other stuff, cant remember the name of it. here

Somebody said...
The Full View Test identifies bacteria, viruses, fungi and parasites in removed teeth, blood, tissue, implants, bone grafts or other biological samples. It tests for 88 different pathogens, including tetanus, botulism, diphtheria, HPV 16 and HPV 18, Candida albicans and more. Using PCR, one of the most advanced tools in molecular biology today, specificity of this test is one in a trillion or greater and the sensitivity of the test is the ability to detect the DNA of between 1 and 10 microbes.

TxBart said...
I'm one of the ones who tested negative for borrelia through DNA Connexions; however, I tested positive for bartonella bacilliformis. I talked to Dr. B (bart specialist) about the odds of me having that species. He said there's no way if I haven't been to the Andes and suggested I retest with Galaxy. He said everyone is wondering what DNA Connexions is doing to get that result. After researching I found out he's with Galaxy AND of the 14 (I think) bart species they test for, baccilliformis isn't one of them. That didn't give me much confidence in his opinion. There isn't another lab that I could find that would test for that species. So I have no way of confirming DNA Connexions results. But I don't doubt that I have bart given my symptoms. I also have responded quite favorably to bart treatment. My LLMD and LLND still suspect Lyme not because of symptoms so much as a solid (not bulls-eye) rash I had about a month before my first symptoms appeared.

thanks, can i ask what your bart protocol is?

totally understand what everyone is saying would be good if more folks who did this test would post if they got a negative lyme test.

in terms of the 'andes' comment i would throw that in the garbage these bugs are no longer constrained to any particular geography when i got a positive for Babesia Duncani one LLMD said when have you been to the west coast I'm like i haven't.

Lapis - my bart protocol isn't very impressive, but I've been lucky in that: 1) we figured out the problem in just under a year of minor symptoms and 8 months of major onset and 2) it's working (at least for now). My first step was diet (the typical no-anything-good-tasting diet). I then started the smattering of vitamins and supplements that most seem to take to boost overall immune health, and I started acupuncture. Next came herbs: samento, banderol (discontinued this one because it wasn't doing anything), and Beyond Balance MC-BAR1 and TOX-EASE-GL. Detox started in earnest at this point in the game. NIR sauna has been huge in knocking back head inflammation (I'm not sure what's behind this as typically cold helps with head pressure, but I've learned not to question what works). Next came twice a week IV ozone for 8 weeks. At week 4 I added in UVLRx. After that I went to once a week ozone for 6 weeks (I'm on week 5 now). I've added in a phospholipid push with the ozone and will continue that until I'm completely done with ozone in February (I go to every other week mid-December). I've had two 5 day rounds of Alinia. It was given to me for parasites (which I don't know why the LLMD thinks I need this as I don't have any complaints/symptoms that would suggest this), but it definitely hit the bart. I have tried LDN but had a bad experience. I'm going to try again with a lower dose at the end of this month. Other than that, nasal glutathione has been very helpful with sinus pressure. And I've been able to maintain a light walking/stretching daily regimen.

good information Nick thanks for sharing that should boost confidence in this lab.

i think the PCR type test is the only way to go it doesn't look for indirect response but actual DNA of the pathogen in question and its either there or not. the fact that so many test positive shouldn't lead one to assume there's a flaw in the testing but why and could such information lead us further on the journey to understanding how to control and ultimately eliminate these invaders?

With DNA Connecions, I tested negative for Lyme/B. burgdorferi but + B. divergens, Bart henselae and E chaffeensis -

I had bulls eye in ‘91 or ‘92, and while B. divergens is considered EU-based, lived there growing up... waiting to see what Dr. says to explain.

This is the first testing I’ve done, aside from ELISA in ‘13 that was negative. I was illiterate.

In the past 7 years(after 15+ prior or pain/fatigue/illness) I’ve been diagnosed with:

IC, pelvic muscle hypertonicity, joint hypermobility, Fibromyalgia, gastroparesis, IBS, Ménière’s. Each condition has appeared and then come “under control” significantly in 1-2 year’s time, aside from joint instability and joint/muscle pain throughout body.

For some reason before I got sick I thought all test a doctor did we 100% positive or negative.
Now with some education I know almost all are not. Doctors speak with certainty that the science simply doesn't have.
I find I need to understand the test results-which means a little reading not it simply not that hard. Blind faith in a test or a doc is not good

Hi Girlie -

Yes, thank you - fortunately I have a LLMD. I made too many mistakes over the past 25 years, and am hopefully on the right track now.

I felt compelled to post to the statement “all results from DNA Connexions are positive.” That’s not the case. I think I very likely should have a positive result for the Lyme bacteria, but am grateful for possibly pointing at the other bugs.

One doctor stated that the DNA Connexions test is very, “sensitive, though not specific.”

Thanks!

Thanks for all who posted to this thread. Yesterday my LLMD suggested I consider the DNA Conex Lyme panel since I'm still struggling to improve. She has been using the lab/panel for 6 months and feels it is another tool for helping diagnose chronically ill patients. I am considering it but need to save up for the panel and the prep. Sorry to hear Dr H dismiss it as an option but he has his own methodology that is helping people. IMO I would not rule out another testing option for those trying to find out what they are fighting since we have so few good testing options available.

Also suggest people read their FAQ. Just like IGENIX `negative does not always mean negative`. If it can help some patients get more information to help aid treatment direction I'm not going to judge. Also I've come to trust my llmd s judgement which is significant since I had lost all confidence in the 30 or so Dr's I consulted for 10 years prior to seeing my llmd who actually probably saved my life with 17 months of treatment.

Actually she looked at the records and said we did not specifically target Babs or Bart but some of the abx used for Lyme she said was overlap for Bart and Babs.

This thread is a great example of why so many Lyme docs treat based on clinical diagnoses - our testing options simply are not good enough. For me, the DNA Connexions test was helpful only in the sense that it provided me with something to show disbelieving docs who are unfamiliar with Lyme testing's inaccuracies that I see for other reasons (cardiologist, neurologist, retinal specialist, etc.). I did not exercise or massage beforehand, but I got positive results. IgeneX and other serological tests always had been negative for all tick-borne infections except for borrelia hermsii and Epstein-Barr virus. While those two are enough to mess a person up plenty badly, they were not the full picture, I was sure.

The benefit of the urine-based PCR test, as far as I was told, is that it will detect active infection anywhere in the body because everywhere sends its cellular waste (e.g. shed DNA from pathogens) out through the urine. Whereas testing the blood only will detect cellular waste from places the blood stream actively reaches (so not inside hollow organs, deep tissue, parts of the brain, etc.). Biologists, please correct me if any of that is false!

For me, DNA Connextions showed positivity for borrelia bergdorferi, babesia divergens, and bartonella bacilliformis. The last two are rare and respond slightly differently to treatments, which was good to know. It also explained a lot of bizarre symptoms I'd had twelve years prior that one doesn't find with more common forms of babesia and bartonella. I also read that bartonella bacilliformis has an 80% fatality rate, worse than Ebola, and I survived it untreated 14 years ago when doctor after doctor dismissed me as anxious with the flu! So while that stuff is all well and good, I think I would have done equally well saving my money and seeing doctors who know to use a multi-pronged approach, to rotate treatments, and to trust clinical assessments over testing when it comes to this stuff.

Good luck, and don't get too hung up on testing.
Sara (Lyme, ME, POTS, HPA axis dysfunction....)