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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. undiagnosed

    Undiagnosed Immunosuppression

    @cheeseater I suspect some type of malabsorbtion is likely. Working on more sequencing, should have an update in the next few months.
  2. undiagnosed

    Undiagnosed Immunosuppression

    @cheeseater I also have an igG1 subclass deficiency but never determined whether there was clinical significance or not. I'd like to do a vaccine challenge but haven't been able to yet.
  3. undiagnosed

    Undiagnosed Immunosuppression

    Hi @Onezk, currently working on getting some more sequencing done. Still working on the logistics but I'll update here when I get some data back and analyzed. Other than that, hanging in there. How about you?
  4. undiagnosed

    Peer-to-peer metagenomics investigation

    @Jammy88 I found a new place to do sequencing and I'm currently figuring out the logistics for getting blood drawn and plasma separation. Once I get everything figured out and get some data back and if things seems good I'll post an update with more information. Also it looks like the commerical...
  5. undiagnosed

    Undiagnosed Immunosuppression

    @Onezk yes. @Jammy88 Sort of, I'll know more in a few weeks if anything will come of it.
  6. undiagnosed

    Undiagnosed Immunosuppression

    @Onezk I'm still around, still trying to get answers and still not getting anywhere with no improvements in any of my symptoms.
  7. undiagnosed

    Peer-to-peer metagenomics investigation

    It's been a while. Looks like Aperiomics may have gone out of business? The website and twitter account is gone. Not sure what options there are for sequencing anymore.
  8. undiagnosed

    Undiagnosed Immunosuppression

    @georgina699 In the US there are online lab services that work with Labcorp or Quest Diagnostics that you can use. You won't be able to order anything you want, just what they offer unless they can get something added for you. You pick the test and they'll provide you a lab order from a doctor...
  9. undiagnosed

    Undiagnosed Immunosuppression

    In case anyone is interested, I recently had a CD4/CD8 ratio done. It had been around 3 years since the last one. I stopped bothering because it wasn't getting me anywhere but I was curious. Don't think there's really anything actionable based on the new results and history but some trends seem...
  10. undiagnosed

    Undiagnosed Immunosuppression

    @Jammy88 I've had noticeable fat loss on my face particularly around the nasolabial folds and temple/outer eye area. It's something I'm self-conscious about.
  11. undiagnosed

    Undiagnosed Immunosuppression

    @helios I haven't had any NK function of cytotoxicity tests. I did have a flow cytometry and peripheral blood film years ago. Remarks from the flow cytometry was high normal NK cells, likely reactive, and high normal polyclonal B-cells. From the blood film, a few lymphocytes with irregular...
  12. undiagnosed

    Undiagnosed Immunosuppression

    @Mrunknown Don't have any definitive plans for tests or anything at the moment. Might try to find a doctor since I haven't been to one in a long time and do the standard physical/CBC and go from there. I'm not in direct contact with anyone else. I tried working with researchers years ago but it...
  13. undiagnosed

    Undiagnosed Immunosuppression

    Hey @Jammy88, I'm doing ok, how about you? Health status hasn't really changed. I'm able to do everything I need to do to live an independent life. However, I am being held back a number of ways by not having a resolution to all of this. Just living day to day and uncertain about the future.
  14. undiagnosed

    Undiagnosed Immunosuppression

    @Mrunknown I've seen the Human RNA Rumor Viruses paper before, good reference and interesting. As far as autoimmune, was tested for a number of things but symptom wise, Sjogren's fit because of dry mouth but more rare in males and test was negative. No other autoimmune disease was diagnosed...
  15. undiagnosed

    Undiagnosed Immunosuppression

    @Mrunknown, So far symptoms haven't progressed much but haven't improved either. Regarding neutrophils, looking at a couple old labs, nothing below the reference range for absolute count but towards the lower end. I'll get occasional swollen lymph nodes in my neck but they've always gone back to...
  16. undiagnosed

    Undiagnosed Immunosuppression

    Thanks @pattismith, I'll keep that in mind.
  17. undiagnosed

    Peer-to-peer metagenomics investigation

    Hi @mirta, sorry for the delay. I haven't had any labs or been to a doctor in years so I don't have any updates on biomarkers. I still have all the same symptoms and just try to get by the best I can.
  18. undiagnosed

    Undiagnosed Immunosuppression

    Hi @Mrunknown, sorry for the delay. I haven't visited here in quite a while. I haven't had any testing or been to a doctor in years. I had no money for most of that time and was fed up with the medical system. I decided to just live life the best I could because I didn't see a path forward. I...
  19. undiagnosed

    Peer-to-peer metagenomics investigation

    I recently had RNA and DNA sequenced from plasma samples. Nucleotide alignment searching hasn't resulted in an obvious answer. I am working on more advanced pathogen searches to see if I can find anything. I have done a little work on biomarkers including characterizing the plasma microbiome and...
  20. undiagnosed

    Peer-to-peer metagenomics investigation

    I put together a procedure for determining whether classifications from the Taxonomer metagenomics classifier are correct or not. @Omar88 has expressed interest in doing this and some others were curious how it was done.
  21. undiagnosed

    Undiagnosed Immunosuppression

    @Chocolove, I'll check it next time I go in for labs.
  22. undiagnosed

    Undiagnosed Immunosuppression

    @TenuousGrip, I respectfully disagree. If you have a chance to read the more recent posts I think you'll see that most of your points have been addressed. I'm not discounting possible co-infections, but I am confident that I am on the right path. I am currently working on a metagenomics...
  23. undiagnosed

    Undiagnosed Immunosuppression

    @waif, what tests specifically are you interested in? I've had to get most of these tests on my own through sites like Walk-In Lab and pay out-of-pocket.
  24. undiagnosed

    Peer-to-peer metagenomics investigation

    @Cheesus, I saw you had some sequencing done a while back. Raw data would be preferable, but I could add a link to your report.
  25. undiagnosed

    Peer-to-peer metagenomics investigation

    It's possible that there could be something related. I've done some analysis with blastn and blastx on some limited reference databases that I constructed. If you want to check the taxonomer classifications, you'd need to download the raw taxonomer output file. You would then need to extract the...
  26. undiagnosed

    Peer-to-peer metagenomics investigation

    I haven't looked at the items you mentioned closely, but since most of them infect non-human hosts, I am skeptical that there is anything there. I have looked at lentiviridae and herpesviridae classifications from Taxonomer that all ended up blasting to human RNA/DNA. So far I haven't found the...
  27. undiagnosed

    Peer-to-peer metagenomics investigation

    @Omar88, what data? I have been investigating various virus detection techniques. I am also working to ensure that the sequencing sensitivity will be adequate for detecting low viral load RNA viruses on upcoming plasma runs. I only have zzz's data besides mine at this time.
  28. undiagnosed

    Peer-to-peer metagenomics investigation

    I created a tool for estimating how many total sequencing reads will be needed to get at least the specified number of on-target reads at the specified probability level. The image below shows a screenshot. The tool is available for use here. You can also download the source code and run the...
  29. undiagnosed

    DNA exome, independent researcher

    Hey @parpar, I'm doing a similar thing but with metagenomics looking for pathogens. I started a thread here about it. Just wanted to let you know in case you want to chat or collaborate.
  30. undiagnosed

    Peer-to-peer metagenomics investigation

    There are many people posting on multiple internet forums with persistent symptoms following an exposure to various body fluids. This thread is the new home of a conversation started here. Available clinical tests have not found an explanation. Those affected are contributing metagenomic...