Biotech firm tests?

Science
#1

Has anyone else come across this medical testing company that crunches data to help people with chronic illnesses find the cause and fix it?

https://www.washingtonpost.com/business/economy/her-biotech-firm-solves-medical-mysteries-and-no-its-not-theranos/2019/02/22/3eb25b58-3554-11e9-af5b-b51b7ff322e9_story.html

The website for the company is here: https://aperiomics.com/

It seems reputable and small enough to be approached directly, especially if several of us with similar symptoms submit to the same tests for results comparison. Even though they identify “known” issues, perhaps among the thousands out there, our condition may be caused by one of them.

I’m sending them my insurance information today, and regardless of whether or not any of $700 charge is covered, I’m going to proceed, but suspect we’d have better luck in numbers.

Could someone from the foundation reach out to them, to see if they would consider a group study?

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#2

I wrote them a few months ago because i believe that many of us carry a hidden infection that impairs our ability to recover. The price is quite high however and you may need to test different samples (stool, urine, blood). I paste their reply:

Thanks for reaching out… I’m really sorry you are suffering. We are particularly strong identifying the root cause of infection where other labs/tests fail. We would want to collect from the closest suspected source of infection. What are your symptoms? What are you experiencing?

We can ship in and out of Italy or anywhere in Europe via DHL. Cost of the testing would be $1000 US per sample plus $200 roundtrip international shipping (pre-paid). I can do a bit of discounting if multiple samples need testing. Reports take roughly 2 weeks once we receive the samples. From there, your doctors can put you on a targeted treatment plan to wipe out the exact pathogens that may be causing infection…

If you’d like to get tested, you may request a kit here: https://aperiomics.com/patients-collection-kit/ From there I can have Billing send you an invoice via Quickbooks where you can pay securely online, then I can get the kit(s) sent out to you. Please no antibiotics, anti-infectives or herbal supplements at least 3 days prior to collection and no probiotics at least two weeks prior to collection.

Please let me know if you have any further questions…

Aperiomics is the only company identifying every bacteria, DNA virus, fungi and parasite in one test. Clinicians and patients call on Aperiomics to identify infectious diseases that other tests cannot identify. The only company of its kind and scope in the world, Aperiomics identifies every known pathogen (bacteria, virus, fungi or parasite) in a single test through deep shotgun metagenomic sequencing of the DNA or RNA in any sample (patient, environmental, etc.). The complete genetic fingerprint of that sample is then compared to the Aperiomics Microbial Database™- the most comprehensive database of microorganisms, including the world’s largest collection of pathogens. This breakthrough is only possible through Aperiomics and can be used to identify unknown/chronic infections, limit the use of antibiotics and solve difficult medical cases. Patients and their families often contact Aperiomics directly after hearing about our successes in helping others. Aperiomics is supported by the National Science Foundation and was named Life Sciences Innovators of the Year in 2016 and a finalist in the 2017 & 2018 Greater Washington Innovation Awards.

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#3

I’ve written to them, and hope my insurance is acceptable, leaving me with a $200 co-payment. I’ve stopped all supplements, probiotics, etc…to get a “clean” test sample. At this point, 10 years into PFS, even the full $1000 change would be worth it, even if it’s just to eliminate potential causes.

I do think if several of us, or the foundation got together with them, they could do something interesting, in terms of findings. After all, waiting on meaningful research from Italy or Texas has taken years, and hasn’t produced anything tangible or actionable, at least that I’m aware of.

#4

I totally agree with you. What sample are you going give them?
I’m in contact with Prof. Melcangi and he asked me to partecipate in study of the microbiome, but unfortunately my endless attempts to manipulate the gut with diet and supplements disqualify myself as a candidate.
Keep us posted

#5

I’m going to do all the tests available. I’ve previously done “ubiome” and didn’t find the results meaningful. With that said, I do believe the gut situation is a byproduct of our condition, not the cause, but not ruling anything out.

I’d love to get involved in any research, like Melcangi’s, that can help us, and think if meaningful numbers of us had our DNA and other tests analyzed, we’d see patterns that may point to something treatable.

#6

The point is how reliable are these tests, because i still have some doubts.
I myself did the GI Map by Diagnostic Solutions and didn’t show up anything special, except for low beneficial bacteria and Staph overgrowth.
I can’t imagine living this hell for 10 years, did you improve over time? What’s your residual symptoms?

#7

No real improvement over time, except a bit when I work out and keep body fat very low, which is difficult as I age. Supplements have given temporary “3 day” relief. Gingo seems to help a little bit with memory related issues. Still very little to no feeling down there, and next to zero pleasure.

It was once the “new normal”, but now it’s just normal.

#8

The testing company contacted me back, and with my insurance deductible, co-payment, etc…it’s almost $2500 for this test. I still will be taking it, but now need a few more weeks to pay for it. With better insurance, this could have been as little as $200, but regardless, if there is a successful determination of something, it’s absolutely worth it. If it’s inconclusive, I’d ask the foundation to reach out to them on anything that could drive a conclusion. If nothing is found, we’ve at least elimated a few things.

And after a couple of days of no supplements, I’m (so far) still feeling the same.

#9

Hi NewYorker, any updates on this tests?

#10

I actually just paid them and received the kits for all their tests, of almost every body fluid, including nasal fluid, etc… I expect to have them in 2nd week of January with results back by the end of the month. I’ll gladly share the results once they’re back.

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#11

Thanks! I will definitely follow the ethread.