Stanford wants to talks to Lyme patients for a study

I don’t know if I have even been diagnosed as having Lyme disease by a doctor. The doctor who ordered the tests said she didn’t know if it was “active” Lyme or not but did agree to trial treatment with minocycline to see what would happen.

She had no interest in discussing coinfections and let me know she did not want to be a “Lyme doctor.”

Basically all I have is a positive DNA Connexions test, which I understand many Lyme doctors don’t even support.

borrelioburgdorferii said...
Yeah WalkingbyFaith I hear you, and Lapis_29 thanks for the info... tell me about the DNA connexions test...is it more accurate, does it pick up the persister, chronic, relapsing form..?

It detects bacterial DNA in a urine sample.

I had this test done. The lab found both borrelia and bartonella DNA.

awesome, filling this out, thanks for posting

borrelioburgdorferii said...
Yeah WalkingbyFaith I hear you, and Lapis_29 thanks for the info... tell me about the DNA connexions test...is it more accurate, does it pick up the persister, chronic, relapsing form..?

but I'm wondering do they mean I would guess they mean CDC-positive?? which is a mostly useless measure unless you are a big insurance co. trying to NOT treat legit patients...

Ok say...I'm saying (and I haven't emailed or called yet) they will probably only allow CDC-positives into the test... (faulty and antiquated, missing essential bands)

or

IGenex Western Blot positive? (better, but still not 100%)

or

clinical (Horowtiz-based clinical questionaire symptoms say off-the-charts with at least one "Lyme-bingo" Lyme-specific band, 23, 31, 34, 39, 83/93 and say 58 for Euro-specific strain...)

We will never get anywhere while these tests are suppressed on us to yield nil results...

and by the way, are there better tests for tbd and coinfections?

I've only heard of ArminLabs in Germany, a place in Stonybrook I think also, and Galaxy for Bartonella, Quest and Labcorp are useless as they still use the get-out-of-treating-tbd-patients-free card (ie. CDC "approved") test

sorry for my salty tone but I'm just looking for some relief at this point : [

I tested positive for Lyme disease by Western blot at Igenex. I know doctors are wary of DNA Connexions for testing, And I tested positive for Bart on it, but yeah, it’s super frustrating that we don’t know what’s a reliable manufacturer of lab tests for these diseases. It took a few years for C. pneumoniae to show up on a LabCorp panel. It doesn’t help that these organisms are crafty and hide very well.

I’ve contacted ArminLabs, and they’re very helpful. I think Germany has a pulse on acceptable and more accurate lab testing for these diseases. I’ve heard great things about Galaxy Labs for Bart. Many Bart patients agree they are the Gold Standard for testing for it. There is very little information about the operating methods at DNA Connexions, at least the last time I looked into them.

Your tone is not “salty” at all. It’s past time for there to be reliable testing for Lyme and Co. A research budget of only $28 (2017) million isn’t going to bring about revelations, and that’s purposeful.

Bb,

For what it’s worth, my first Labcorp Western blot was IGG positive for bands 41 and 66.

Igenix:
IGG: 39 Ind, 41++, 58+
IGM: 39 Ind, 41+, 45+, 58+

DNA Connexions:
Positive Borrelia burgdorferi, Ehrlichia chaffeensis. Footnotes stated, “Species specific target microbial DNA was detected but amplification product was not of expected size. More commonly detected in individuals with long-term infections. Product size differential possibly due to: degraded DNA, mutation of species, unspecified subspecies, other.”

I was tested in this order. I felt the DNA Connexions positives and comments were accurate and fit with the other test results as well as my medical history. I did not test positive for bartonella or babesia, although I have had signs and symptoms in line with those infections since early childhood.

My DNA Connexions test was ordered by a Functional MD I was seeing at the time. It was done in Dec 2016.

Since that time, DNA Connexions has changed in some ways and have made statements to patients on this forum (from what I recall) that conflict with the statements published on their website (at least at the time). Basically someone there (possibly a misinformed technician who should not have been discussing results at all) was telling people if they didn’t test positive for something that it meant they couldn’t have that infection. That is not true. If you don’t test positive, it cannot rule out an infection. It only indicates they did not find the DNA in your test sample.

My current Lyme doctor doesn’t use DNA Connexions. Personally, I am thankful for that lab and the type of testing they do. They are the only lab I’m aware of that looks for microbial DNA. It was the confirmation that I needed to know that I indeed am dealing with Lyme and coinfections.

borrelioburgdorferii said...

Fade2Blonde said...


I tested positive for Lyme disease by Western blot at Igenex. I know doctors are wary of DNA Connexions for testing, And I tested positive for Bart on it, but yeah, it’s super frustrating that we don’t know what’s a reliable manufacturer of lab tests for these diseases. It took a few years for C. pneumoniae to show up on a LabCorp panel. It doesn’t help that these organisms are crafty and hide very well.

I’ve contacted ArminLabs, and they’re very helpful. I think Germany has a pulse on acceptable and more accurate lab testing for these diseases. I’ve heard great things about Galaxy Labs for Bart. Many Bart patients agree they are the Gold Standard for testing for it. There is very little information about the operating methods at DNA Connexions, at least the last time I looked into them.

Your tone is not “salty” at all. It’s past time for there to be reliable testing for Lyme and Co. A research budget of only $28 (2017) million isn’t going to bring about revelations, and that’s purposeful.

Fade2Blonde I appreciate your thoughtful reply. And I agree with what you say about a purposeful skimping on the budget for TBDs and cos!

about the Connexions DNA test and the ArminLabs although I can't afford it right now but for future reference... I think Klinghardt does something to make the kidneys excrete spirochetes, (localized rife vibrations machine) or was it exercise intensely before the test? to have a better chance of it showing up....? Is ArminLab and Connexion, are they both urine tests or both blood and urine? Getting spinal fluid is more dicey, maybe synovial fluid will be the better measure.

That's cool that you do (or did) medical lab work. I'm guessing the injustice of the testing fiasco situation must be frustratingly clear to you as well!

You’re welcome. 🙂 I believe it’s exercise before the test, but only for about 5-15 minutes (?), usually on a trampoline, which is a good way to detox too. I don’t know if it helps the spirochetes to come out. I have not looked up the data on that, if there is any. I believe Armin is blood and DNA Connexions is definitely urine. I’ve read spinal fluid is a good measure of finding spirochetes in the fluid in pathology.

I miss my job very much. It gave me purpose. To be out of work for as long as I have doesn’t feel right or good. You’re right about being utterly frustrated and disgusted by the shoddy testing methods.