HealingWell
Search Close Search
☰

DNA Connexions Results... All NEGATIVE??

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/8/2018 3:46 PM (GMT 0)
I was just wondering if this new language is due to them seeking fda approval. I posted on that the other day. I got the info from this recent podcast:

betterhealthguy.com/episode59
Posted 2/8/2018 4:34 PM (GMT 0)

k07 said...

NicHostetler said...

k07 said...
I had called DNA Connexions too and I'm retesting this week. Honestly, I would NOT be upset if I don't have lyme disease. I recently had a neuroquant MRI which indicated my brain has been impacted in areas that are consistent with Mold and none of the areas usually effected by Lyme showed up. Also, my LLMD (dr. h) has been leaning away from lyme for me based on how I react to treatment. So for ME, it would make me more comfortable with going in the mold/multiple chemical sensitivity (MCS) direction. I feel the most comfortable with MCS since I most certainly am chemically sensitive now. I also have no detectable level of VIP which Dr. H said was mold.

I do have a positive c6 elisa for borrelia. If that can cross-react with something else I am not sure. My llmd told me that we can look at it from the other angle that my immune system has taken care of the borrelia. I will post my DNA Connexions results when I get them. Looks like the new turnaround time is 5 days.

BUT, you seemed to have a good response to ABX. Have you looked into mycoplasma as well? There are other coinfections and strains of Borrelia that are not on the DNA test. Go with your gut!

Please come back and post your retest results! 5 days? That's with a new sample? I thought it was like 2 weeks.

I am thinking about doing an MRI, but not sure. Are you seeing THE Dr. H??? How did you ever get in to see him?

I had a bad mycoplasma infection and CPN but those are both clear now just IgG positive, so past infection. I think I should try treating bartonella next.

Yes, Dr. H. Although lately been speaking more to his NP. I got in to the practice a few years ago. Just kept calling and calling!

My local doc is more versed in mold than Dr. H. He's the one who ordered the neuroquant mri and tested me for MARCoNS.

Also, if you are thinking of doing MRI, I would call around and find someone who does the neuroquant mri. It is actually just a regular brain mri (no contrast) ran in a particular sequence and sent to Cortech to run through the neuroquant software. I think the cost is $100 for the software analysis. You also get the standard radiologist report from wherever the MRI was done.

I have a lab that does neurquant 5 minutes from my apartment apparently! I live in a city so not surprising but exciting none the less.

Will my LLMD still have order the test? I just have to tell her I want it done there? What is the total cost?

Post Edited (NicHostetler) : 2/8/2018 10:19:39 AM (GMT-7)

Posted 2/8/2018 5:24 PM (GMT 0)
Any doc can order the MRI - just make sure they run it in the right sequence for neuroquant. My insurance paid for the mri, I had to pay for the additional software analysis. Good luck!
Posted 2/8/2018 5:26 PM (GMT 0)
Also, when you get your neuroquant report you can plug your values in the spreadsheet found on this page.

/www.biotoxinhelp.com/cirs-and-the-brain.html
Posted 2/8/2018 5:41 PM (GMT 0)

WalkingbyFaith said...
One thing you need to consider about the labs is they use different methods of testing. Comparing Igenex with DNA Connexions and labeling one or the other as "inaccurate" based on your test results is flawed thinking and amounts to comparing apples to oranges.

Igenex uses an antibody test. Downside is your immune system may or may not produce the antibodies needed for a positive test result depending on how long ago you were infected and the state of your immune system. Some folks will test highly positive on antibody tests such as this and the Western blot, while others will have only a few positive bands or none and will therefore get a negative test result.

DNA Connexions is a PCR analysis. I assume yours was a urine sample, as was mine. A positive result with PCR means the lab found DNA of the bacteria (Lyme or coinfections) in your sample. Getting a negative test result only means they did not find any bacterial DNA in the sample received. It does not mean you don't have any infections. It is NOT proof that you do not have Lyme or coinfections.

ALL of your data - every test you've had, every symptom you've had, every treatment you've tried and your response to those treatments - ALL of this should be looked at collectively through the eyes of a knowledgeable Lyme literate doctor before drawing conclusions about what infections you do or don't have.


Just wanted to mention that Igenex also has PCR tests available, and now two new tests that appear to be similar to Armin Labs tests (Immunoblot/Ispot)
Posted 2/8/2018 5:44 PM (GMT 0)

NicHostetler said...



I completely agree with everything you said, but I'd like to share what DNA Connexions ended up tell me AND my LLMD.

They called me and said I 100% certainly do NOT have Lyme disease. A man literally told me on the phone "I spoke with your LLMD and you need to start looking elsewhere for your symptoms because you do not have Lyme disease or any co-infections. I have been working in this lab for awhile and I know a positive test when I see one and it is black and white."

I asked him about the possibility it wasn't it my sample and he said "Listen, you did a deep tissue massage before the test right? Then I am telling you that you definitely do not have Lyme."

I then asked him why I have a positive LabCorp Western Blot with Lyme specific bands - 18, and 23. Plus 41 and 66. He responded saying "Our testing is far more accurate and precise than an antibody test. The western blot probably showed you a past infection that you had and no longer have."

I then said "Then why do I still show symptoms of Lyme, bartonella and babesia?" He had no response other than "Sir, you do not have Lyme."

He called my LLMD about this and my LLMD now doubts I have Lyme. What a mess I am in because of this. Never knew that a lab tech could ever make such a claim. Especially when on their website it states that even though the sample is negative it doesn't mean you don't have it, it just means it wasn't in the sample. I even brought that up to him and he laughed.

He offered to retest at half price , I told him I'm not wasting any more money.

Maybe he is right? Who knows, but I do know that I have many classic signs of Lyme and Co-infections.

I'm very surprised that the lab tech would say you definitely don't have lyme because it didn't show up in a PCR test. All that I've read says it can be missed.

LLMD MR won't accept that testing facility yet... Hopefully they will get the validation studies done.
BUT, that still doesn't mean they are 100% accurate.
Posted 2/8/2018 7:32 PM (GMT 0)
Yes, it was ridiculous. I don't doubt that it is an accurate lab, because it does show results for so many people, but the fact that the lab tech said the things he did, makes me cautious. I guess we cant blame the entire company for one lab tech. Although he did reference his manager several times..

I checked with LabCorp and they have PCR tests as well which was interesting to me.

Girlie - I know right?? One thing he did also make a point of though is that if I "did" have Lyme then one of then the chances of Lyme AND co-infections not showing up is very slim. Which I can see.. but ugh, who knows.

Post Edited (NicHostetler) : 2/8/2018 12:35:19 PM (GMT-7)

Posted 2/9/2018 9:47 PM (GMT 0)
Nic - question about your test. Did you discard first urine after massage and collect the next one? I had collected my first one after exercise, which is not what they recommend now. They did offer a discounted rate to me as well since the sample was not done right.
Posted 2/10/2018 12:09 PM (GMT 0)

k07 said...
Nic - question about your test. Did you discard first urine after massage and collect the next one? I had collected my first one after exercise, which is not what they recommend now. They did offer a discounted rate to me as well since the sample was not done right.

Actually.. I didn't (I don't think). I thought I did, but now that I think about it, I think I did the one hour massage and then just waited about an hour and a half and then did it..

They offered me a discount too. Half off, but I don't want to do it again and put $750 into the test. That is ridiculous.. Unless you have results come back, then I probably will.

So please let me know!
Posted 6/4/2018 5:01 AM (GMT 0)
Hi - I know that this post is several months old, but I want to weigh in and say that my daughter got all negative results with DNA Connexions, after having CDC + results for Lyme, Bartonella and Babesia. Now, she has been on antibiotics for over a year, and, she did infrared sauna instead of exercising (what person with LD can do 30 minutes of "vigorous exercise"??) Our LLMD said negative result not necessarily accurate, given that my daughter's symptoms had mostly gone away, and then recently resurfaced. He went ahead and treated her on the assumption that she has Rocky mountain spotted fever (based on new symptoms). I feel that we wasted $500. And, these days the test results take 5-6 weeks to come back! Clearly, the word is out there....
Posted 6/4/2018 12:41 PM (GMT 0)

UCSDMom said...
Hi - I know that this post is several months old, but I want to weigh in and say that my daughter got all negative results with DNA Connexions, after having CDC + results for Lyme, Bartonella and Babesia. Now, she has been on antibiotics for over a year, and, she did infrared sauna instead of exercising (what person with LD can do 30 minutes of "vigorous exercise"??) Our LLMD said negative result not necessarily accurate, given that my daughter's symptoms had mostly gone away, and then recently resurfaced. He went ahead and treated her on the assumption that she has Rocky mountain spotted fever (based on new symptoms). I feel that we wasted $500. And, these days the test results take 5-6 weeks to come back! Clearly, the word is out there....

Thanks for the input! I'm still treating. How long did it take for her to get better on the Clindamycin & Rifampin? I was on that combo for about a month now I'm on minocycline and rifampin.
Posted 6/5/2018 5:06 AM (GMT 0)
Hi Nic,
She only started on the clindamyacin/rifampin about 10 days ago. She's getting lots of side effects/herxing, including some major dizziness. She had been on Bicillin and zithro for over a year - we think we got most of the borrelia; now trying to treat either bartonella or rocky mountain spotted fever - unclear as to which! I can certainly keep you posted.
Posted 7/17/2018 9:12 PM (GMT 0)
Nic, k07 and USCD:

Just got my results from DNA Connexions and am all negative as well which I do not believe for a second. I tested to see what co-infections would come up since I never did through IGeneX. Positive for Lyme with IGeneX and was bitten by ticks two different times with a swollen knee a week after the first time which is Lyme and really bad fatigue right after the second. Luckily I found this thread though or I may have doubted my diagnosis. Very frustrated though I must say as it was not the results I was looking for.
Posted 7/17/2018 10:11 PM (GMT 0)
Todd

Have you done extensive treatment for Lyme and co’s?
Posted 7/17/2018 11:54 PM (GMT 0)
Girlie, no I undertreated if anything. Only did a few months of Doxy and Rifampin then switched to the infamous synergy protocol (remember that one?) for 5 months both back in 2013.

I do have an appt. next week with my former LLMD to go back into treatment. I'm down to 125 lbs. and just more tired than ever. I don't want to doubt my diagnosis but sometimes think what if it's the Prevacid I'm taking now for 20 years but then I think of the tick bites and the herxing and all the positive key bands and then say to myself nah it's gotta be Lyme.
Posted 7/18/2018 1:15 PM (GMT 0)
ToddPaul,

I did DNA Connexions and only got a positive on borrelia and ehrlichia after testing negative on Labcorp WB and Igenix, with not the magic number of positive bands.

I'd had lifelong signs of bartonella and possibly babesia, but nothing was found on those. A negative doesn't rule out anything. Good that you're going back to see LLMD.
Posted 7/27/2018 9:41 AM (GMT 0)
I think girlie`s response good interpretation, as with Igenix and other testing `negative does not mean negative`.

It is baffling and frustrating but if you have been clinically dx and are responding to treatment then that is a good thing. It's disheartening to spend money trying to get confirmation and not get empirical evidence. For many years I was told I didn't have it so when clinically dx I was still looking for empirical evidence but after a few years and seeing some improvement I finally let go of that need(although I would still like to see evidence I'm just not emotionally driven anymore).

Also I think someone mentioned above that 2 Igenix positives would also be CDC positive....unless something has changed CDC requires 5 positive bands (which is a bunch of crap to me. In other countries one positive band is considered positive. No wonder so many are misdiagnosed).
Posted 7/27/2018 9:51 AM (GMT 0)
I think that lab tech was behaving irresponsibly....it is not their place to diagnose....it is your Dr's. That said if your llmd is uncertain due to what this lab tech said I would expect an llmd to be looking at many factors including symps. I understand the lab techs confidence in dba testing for these bugs but not his/her place to cause a patient more grief but making such a statement. If we have learned anything we know Dr's, govenrment agencies, academia and labs have been wrong when it comes to dx, testing for these bugs.

I have know doubt you know you are fighting symptoms. Getting tested, diagnosed is at best a bewildering, frustrating experience. Listen to all, follow none...you know your body and experience. If you have Lyme and c oinfections I would expect you to see some improvement in symps over time(not saying all resolved or irradicated).

Don't give up, it is a hard path sometimes, makes you want to scream, cry but in the end you have to fight for treatment....
Posted 7/27/2018 3:54 PM (GMT 0)

Roxie60 said...
Listen to all, follow none...you know your body and experience. If you have Lyme and c oinfections I would expect you to see some improvement in symps over time(not saying all resolved or irradicated).

Don't give up, it is a hard path sometimes, makes you want to scream, cry but in the end you have to fight for treatment....

Well said, Roxie. Good advice for all.
Posted 7/29/2018 3:09 AM (GMT 0)
For those still researching DNA Connections I found a you tube video by BetterHealthGuy who did very good interview of their lab manager. The interview was done in March or may of this year. I feel better about saving up for the test after watching that interview. I just have to get emotions under control cause I know after spending $$ it could be another result that comes back negative.

Also have to pay for deep tissue manage to provoke the little beasties out of their hiding places. I had to stop getting massages after getting infected because I found myself more sick for a few days after a massage this was before finding out that massage can stir up the bugs, guess that was another clue).
✚ New Topic ✚ Reply
12