DNA Connexions Results... All NEGATIVE??

Seriously? After having a POSITIVE western blot of IgG bands 41, 66, and 18 and IgM bands 41 and 23 now a NEGATIVE result from a lab that is thought to be overly positive?

So now I feel like I either 1. am not dealing with Lyme or 2. just wasted $500 on an inaccurate test.

This is a nightmare. Worst case scenario for me.

Is it time for me to start maybe looking at other diagnoses? Should I try to hit parasites? Get an MRI to rule out things like MS, tumors, etc?

By a microscope ,do your own testing and check progress...find a good kinesiologist ...they too only test for 2 types of borrelia ...there are hundreds of species ....whats your chief complaint ...go big to small like dr k ...parasites ,protozoa, fungus mold ,bacteria, myco, viruses ....did you treat bart for 2 to 6 years ? Have looked into cpn or proto1953....dont chelate til u are done ....i have a skype guy or if your in the sw ? Dont let your imagination strike fear and doubt ...

Girlie said...

NicHostetler said...
Seriously? After having a POSITIVE western blot of IgG bands 41, 66, and 18 and IgM bands 41 and 23 now a NEGATIVE result from a lab that is thought to be overly positive?

So now I feel like I either 1. am not dealing with Lyme or 2. just wasted $500 on an inaccurate test.

This is a nightmare. Worst case scenario for me.

Is it time for me to start maybe looking at other diagnoses? Should I try to hit parasites? Get an MRI to rule out things like MS, tumors, etc?

Nich - you have an Igenex positive - and IgM 41 and 23 - I believe are CDC positive? I'd have to check.


You are dealing with lyme.

I really don't know why the DNA connexions is negative - other than the same reason that other PCR's can have false negatives - is they are positive if they identify the dna of the bacteria in the relatively small sample they have...
If they don't see it...doesn't mean it's not there - just not in that sample.

Yes, antibiotics can provoke the lyme spirochetes to form biofilms...and cyst forms...but that doesn't explain the co-infections.


Did you exercise and/or have a massage prior to the test?

I actually have never done Igenex.. maybe I should? My Western Blot was done through LabCorp and was positive with those bands. Band 23 is specific to ONLY borrelia right? Nothing else?

It could be possible that I may not have any co-infections though, right? Or do you think that probably is not the case?

I really would assume that if I do have lyme (not saying that I do not) that SOMETHING would've come back though.. That is what is worrying me.. making me wonder if I should start searching for another answer to my symptoms..

Co infections testing, no matter what lab, is super unreliable.

I had negative dna connexions too.

I have chosen to treat herbally at this point and look at all other things that could be causing symptoms. Those being mold, yeast, genetics and now also intracranial hypertension ( as noted on my mri’s). I personally think most will test somewhat positive for lyme but there’s no way to know it is driving your symptoms unless you get a positive response from treatment. Have you had response from treatment?

Dizzy/brainfog may be a lot of things (yeast, mold, POTS, maybe even food allergies).

k07 said...
I had negative dna connexions too.

I have chosen to treat herbally at this point and look at all other things that could be causing symptoms. Those being mold, yeast, genetics and now also intracranial hypertension ( as noted on my mri’s). I personally think most will test somewhat positive for lyme but there’s no way to know it is driving your symptoms unless you get a positive response from treatment. Have you had response from treatment?

Dizzy/brainfog may be a lot of things (yeast, mold, POTS, maybe even food allergies).

I saw tons of improvement when I first started treatment a year ago. After the first three months my fatigue improved so much and brain fog actually was better (I think) and then I plateaued so I switched meds and never really got better, maybe slightly worse. Dizzyness/lightheadedness persisted through it all and brain fog is back. Heart palpitations also improved and now are back slightly but not as severe as they were before treatment.

I have lots of issues with my heart too so sometimes I think POTS but my blood pressure is usually high, not low. I think with POTS it's usually low..

Yeast, I have hit pretty hard in the past with Nystatin and Diflucan and never really felt better.

I've tested for food allergies and nothing came back. My gut health is pretty bad but I am taking a supplement now that has L-Glutamine, Aloe and Licorice that is supposed to heal the gut wall..

I have never ever been tested for mold. I asked two different doctors and they both just kind of shrugged it off. Is that an easy thing to test for? I have also never had an MRI, is that something I should do?

In my opinion, DNA Connections is very inaccurate. It tested me negative for everything and I’m CDC positive for Lyme, Bartonella and Borrelia Hermsii. Also positive for all these infections plus Babesia through Igenex. So I would not rely on DNA Connections.

Igenex was the most accurate. Quest or Labcorp picked up on some of the infections but not all.

k07 said...

NicHostetler said...

k07 said...
I had negative dna connexions too.

I have chosen to treat herbally at this point and look at all other things that could be causing symptoms. Those being mold, yeast, genetics and now also intracranial hypertension ( as noted on my mri’s). I personally think most will test somewhat positive for lyme but there’s no way to know it is driving your symptoms unless you get a positive response from treatment. Have you had response from treatment?

Dizzy/brainfog may be a lot of things (yeast, mold, POTS, maybe even food allergies).

I saw tons of improvement when I first started treatment a year ago. After the first three months my fatigue improved so much and brain fog actually was better (I think) and then I plateaued so I switched meds and never really got better, maybe slightly worse. Dizzyness/lightheadedness persisted through it all and brain fog is back. Heart palpitations also improved and now are back slightly but not as severe as they were before treatment.

I have lots of issues with my heart too so sometimes I think POTS but my blood pressure is usually high, not low. I think with POTS it's usually low..

Yeast, I have hit pretty hard in the past with Nystatin and Diflucan and never really felt better.

I've tested for food allergies and nothing came back. My gut health is pretty bad but I am taking a supplement now that has L-Glutamine, Aloe and Licorice that is supposed to heal the gut wall..

I have never ever been tested for mold. I asked two different doctors and they both just kind of shrugged it off. Is that an easy thing to test for? I have also never had an MRI, is that something I should do?

An MRI is always good to have - but I would go for no contrast (I am cautious with the dye used in contrast). I also had neuroquant software analysis used on my MRI which indicated the parts of my brain that have inflammation are related to mold and not lyme disease.

Some do find mold goes along with lyme disease. If you have treated for awhile and plateaued, it would be reasonable to explore (along with parasites, heavy metal testing). I think Shoemaker's protocol works for lyme (I'd say after a period of treatment) as well as mold. It does not kill bacteria, but is helpful in decreasing the toxins (binders), checking for MARCoNs, addressing other markers (adh, VEGF, TGF-beta, MMP 9, etc), and fixing hypothalamic dysfunction (mostly by using the VIP nasal spray). I am not to the point of VIP yet, so I can't give my personal experience.

Once you have lyme disease/coinfections, you will always test positive to antibody tests (like viruses). There's no way to know if the infection has cleared (probably never does, which is why we have the IGM & IGG positives). However, DNA Connexions didn't find DNA in your urine. I have no idea how accurate of a lab they are, but I do wish they would produce validation studies to put our minds at ease. If they end up being accurate, perhaps your bacteria load is low. I may repeat the test after I meet my deductible this year. I called and my insurance actually covers a large portion of the test - will cost my $150 instead of $500, or at least that is what they say now!

How do you test for mold? Could I do it through LabCorp?

That would be awesome if my insurance will somehow cover part of it but I doubt it. I have Cigna. I'll be surprised if they even count it as out of network. Did you just submit your invoice from DNA connexions to your insurance?

Just and update in case anyone is wondering..

I called the lab to tell them I was doubting the accuracy of the results. A lab tech called me back and said they think that the sample could have frozen during shipment (here in Indiana it was like -10 the day I shipped it out).

They said if it did freeze then that would 'definitely' throw off the results. Although, they said when they received it, it was fine.. so who knows.

Anyway, I am waiting to hear back on whether or not they will let me retest.

PS I dont know what happens during shipping but it looks like it sat in Indiana for a night or two (15th-16th) and it was below 0 those nights that it would've been shipping. Then even when it went through tennessee on the 17th it was 20 degrees there. I'm assuming the trucks would be cold enough to freeze my sample?

Post Edited (NicHostetler) : 1/31/2018 1:36:46 PM (GMT-7)

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.

WalkingbyFaith

Thank you so much for your thoughts.

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.

Post Edited (NicHostetler) : 2/8/2018 1:32:41 AM (GMT-7)

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.

NicHostetler said...


WalkingbyFaith

Thank you so much for your thoughts.

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.

Nic,

Thank you so much for clarifying what the lab tech told you. I find that shocking first of all that a lab tech would proclaim any diagnosis or "undiagnosis." I'm pretty sure that's a no-no for a lab tech. I came across a DNA Connexions sponsorship ad on IAOMT's site just the other day that I found disturbing. I posted the link here. In this ad, they are claiming their "urine-based Lyme Panel determines or rules out the presence of 3 different species of Borrelia and 7 different co-infectors."
/iaomt.org/about-iaomt/visit-our-sponsors/

This was the first time I'd ever heard they were claiming their test rules out anything. Before having the test, my doctor explained to me that a negative result would not rule out Lyme but a positive result was 100% accurate. The same rule should apply to any PCR testing. For them to declare that because no DNA for the bacteria tested on their panel was found in a small sample of urine seems highly suspect.

Then, when you go to the DNA Connexions website at this link dnaconnexions.com/Lyme-Panel-Test-DNA-connexions.html, they DO NOT state this. Instead, they state: "A negative result does not prove a patient is not infected with a tick borne infection, rather it indicates the absence of detectable Lyme and/or other tick borne co-infections. A patients ability to fight the disease, stage of infection, and timing of courses of antibiotics are only some of the factors that may affect the detectability of the spirochetes DNA." This statement sounds accurate to me.

They also have some interesting info in their FAQ section regarding negative findings. Apparently, they have further enhanced their quality control methods and are now claiming higher sensitivity.
dnaconnexions.com/frequently-asked-questions-FAQ-DNA-Connexions.html

Apparently, Dr. Blanche Grube is the owner of DNA Connexions lab. I find the wording in this blog regarding Lyme and their Lyme panel test very disturbing. This does not sound like someone who understands the truth about Lyme disease.
www.drblanchegrube.com/Blog/2017/07/29/blogpost-051-the-dna-connexions-difference/

I also believe I came across something the other day related to their seeking FDA approval and some new enhanced methods they are doing, but I can't find the link. Makes me wonder if they are going to end up helping or hurting. IF they get FDA approval and start claiming a negative result is 100% proof that a person does NOT have Lyme or coinfections, then the Lyme lies will only get worse.

VERY DISTURBING THAT THIS LAB IS PUBLICIZING INACCURATE AND CONFLICTING INFORMATION.