*** MAJOR UPDATE BEYOND MY CONTROL & URGENT ASSISTANCE NEEDED, PLEASE SCROLL DOWN, i am leaving original text for transparency***
I was disabled by SARS-CoV-2 in February 2020, and have been struggling to survive in a tent since that time. I hate to keep asking for help all the time, but the TLDR here is I need your help to keep fighting this horrible illness that has no treatments and doesn't qualify for financial assistance in most cases.
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So, this is a long shot, but I'm going to basically try to crowdfund a one-person research project to see if I can pin down any better options for all of us. I can't promise to learn anything useful, but I do promise to share whatever I learn (as I have been doing all along on X, formerly Twitter, @Froglet80)
I never fully recovered from that first Covid infection, early in the pandemic. Unable to work or make rent, I ended up on the street. Now I live with immune deficiency, dysautonomia, neurocognitive impairment, reactivated & opportunistic infections, GERD, hypertension, and a multitude of daily symptoms including muscle and joint pain, headaches, random fevers, rashes, hair loss, swollen glands, fatigue, vision and hearing changes, balance and coordination difficulties, Gi issues, and more.
I take several prescription medications, including an off-label hiv antiviral, antibiotic prophylaxis, and meds for my blood pressure & digestive issues. I also take several OTC medications and supplements, including those for anti-inflammatory & pain control, immune support, and digestive issues. Insurance does not cover a lot of this, and even what it does requires copays.
You may remember, about this time last year, I asked for assistance with a battery of tests to help determine if there were any symptoms or secondary issues that could be treated and hopefully at least stabilize my health a bit. It took until January, and then I was delayed by an ice storm, but thru the generosity of folks like you I was able to determine that I had an iron deficiency & CMV reactivation.
Both of these issues have simple, safe, long-recognized treatments and while neither is a magic cure for Long Covid, it did improve my quality of life significantly to address them. Even more importantly, doing so slowed the downhill progression of this poorly understood condition.
Unfortunately, it isn't slowing it enough. We still don't even have a test for Long Covid, let alone any validated metrics to judge efficacy and monitor treatment. And 40 million of us in the US alone, desperately need that.
I've been trying - in conjunction with a doctor who is a specialist in this field - to find an effective way to manage this for literally years now. We can't do it without adequate tests. I have theories that can only be tested if I can pay out of pocket for specialized, unvalidated testing - and hope that will lead to standard protocols for us all. The thing is, I need your help to do it. Because, obviously, who can even begin to afford this on their own?
These are the tests I’m currently looking into. Many of these are part of ongoing research towards finding treatments for not only Long Covid but other Chronic Illness as well, and my results will contribute valuable data to that end even if it doesn’t end up helping me directly right now.
Set 1
31 Marker Chronic Illness Profile
$1475
RNA Sequencing Immune Profile
$1098
Cytokine Profile & Spike Testing
$460
$540
Set 2
Full Lymphocyte Subset Panel
$172.95
WBC with Differentials
$19.95
CBC with Differentials
$21.95
Inflammation Lab Panel
$145.95
Total Immunoglobulin Panel
$99.95
I grouped them into two sets because, ideally, they’d all be done at or around the same time, but that may be impossible for Set 1. The panels in Set 2, however, have to be done the same day in order to accurately interpret the results across them.
There will be additional costs for lab fees, etc., that will depend on how much I am able to do in one visit. Insurance might cover some of this so the numbers are subject to change. Depending on results, more tests may be added & I’ll use the Updates tab to report on the outcome of completed tests.
I also still need to meet basic needs including food, hygiene, and current medications along the way. The current goal factors all of this in, and will be increased to reflect those ongoing needs on a monthly basis.
If you’re able to contribute to this admittedly rather ambitious project, I would greatly appreciate it. I understand that not everyone is able to give financially, but you can still help by sharing this fundraiser on your social media pages and with your email contacts
If you want to automatically receive updates via email, be sure to check that box when you donate!
Thank you, and blessed be.
Organizer
Froglet Taylor
Organizer
Houston, TX