You want the Good News or the Bad News?

In today's post, I won't bemoan my symptoms other than to say my shortness of breath, brain fog, and chest "madness" all seem worse than they were three months ago and certainly one year ago. With all that, I haven't had the energy to write or draw/illustrate of late as my energy is low, I'm dealing with the loss of parents, and working on my latest disability review. I've mainly been updating on my Twitter and Instagram.

As someone with Long Covid; internet groups, reddit channels, and social media can be a labyrinth of confusing information with sometimes more depression and lunacy than hope. There are some "glimpses" of good news and few cases of some people "pulling out of" Long Covid but those are few and far between. This doesn't count continuous "well meaning" individuals that constantly send me articles and remedies. The craziest being Russian anti-biotics. 

Sifting through all that, honestly my best researcher is my wife. I can't thank her and love her enough for the patience she's exhibited throughout this journey as she continues to find worthwhile "nuggets" of information that have helped steer my healing journey. I'd like to say I'm healing but that would be inaccurate, but have to frame my journey with hope.

One of the more promising theories that has surfaced has been around microclots as a culprit for the myriad of symptoms that Long Covid patients endure. Resia Pretorius (in South Africa) and Professor Doug Kell are among the seemingly handful of people around the world with focus on this but up to this point, it's largely been outside the U.S. 

Not to digress but microclots took a giant "punch in the gut" and NIH has a "black eye" over last week's  White House hearing on Long Covid. Putrino Labs from Mount Sinai had requested grant money to research microclots but alas were turned down--my twitter feed was on fire just as my chest was.

I am used to meandering thoughts on these pages but brain fog makes it worse. I'll tie it all together shortly. Please be patient. 

Getting back to the crack research team of Seeking Boston, (Mrs. Seeking Boston) found an article on microclots and lo and behold, there is a clinic in the United States that emerged from this barren wasteland focused on Long Covid out of Redwood City, CA called RTHM (pronounced "rhythm.")

I had a couple initial consults with RTHM prior to last week's visit to Portland, Oregon (one of five States they operate in thus far) that laid out a game plan starting with testing from Innovative Bioanalysis* that's developed a biomarker Long Covid "panel" including cytokine testing. This gets to the "do you want the good news or the bad news" part of this post. Most of us that have Long Covid want answers but some of them are hard to digest.

Along with 16 vials of blood on top of the Innovative Bioanalysis panel, Dr. Stuart Malcolm of RTHM found a few "smoking guns" in the results. Good that he found this, but the bad news is they found there were two markers that indicated vascular inflammation. Timing was not great as I got this news a day before a new decade birthday. As I googled, "vascular inflammation," the results were more than a bit alarming; can lead to thrombosis, stroke, and heart attack. Happy Birthday Seeking Boston! Like many nights, my mind raced with thoughts of mortality and potential life events I could miss.

I'd note that I found RTHM to be the first clinic I've found that combines "start-up," research, and clinician care specializing in Long Covid. Talking to Dr. Malcolm, it's refreshing to talk to a "Long Covid Doctor" (yes, that's a thing!) that understand symptoms and potentially root cause treatment vs. throwing prescriptions at some of the symptoms. To-date (not faulting any of the exemplary care I've received thus far,)  it's been a bit of "trial and error" as we're clearly still in research phase of this monster.

If you've been keeping track, I've had virtually every blood test, scan, EKG, heart cath, PET scan, and have been injected with nuclear agents 3-4 times for  imaging to try and identify what's going on. Over 150 Dr. appointments including those tests haven't revealed anything wrong with my lungs or heart--this is a common thread for people with Long Covid; especially those infected early on when there were no swabs. In fact, I had one cardiac specialist tell me that there was nothing wrong with my heart--get out there and exercise. Sorry, but this is potentially deadly advise and I've suffered setbacks (notably with PEM; post exertion malaise) trying these debacle plans.

Again, I don't fault these recommendations as the medical field has tried to use the "playbook" used with other post viral illnesses (such as previous SARS, Lyme, and Ebola.)

So back to the results. Those two markers were specifically VEGF and sCDL40L (see image) and were 3-4x + out of normal ranges. Mayo Clinic describes, "Vasculitis involves inflammation of the blood vessels. The inflammation can cause the walls of the blood vessels to thicken, which reduces the width of the passageway through the vessel. If blood flow is restricted, it can result in organ and tissue damage."

Happy birthday (again.)

This is the beginning of a new chapter in my Long Covid journey. Despite the bad news there's hope. In 30 months since getting sick, doctors early on had no answers or perplexed looks and moved on to simpler symptoms to discuss when I'd tell them that it "feels like organs are cooking inside my chest."  Theories around small fibers in the chest seemed viable, but my previous diagnosis of small fiber polyneuropathy plus vascular inflammation begins to explain the full breadth of my body's madness.

In the dearth landscape of Long Covid, RTHM is an oasis for all those suffering from Long Covid in the United States. I am fortunate as prior to getting sick, I had a high-functioning brain as a sales executive and fragments of that brain have helped me advocate for answers and care. 

Many lack financial resources as they have lost their jobs (like I have) or haven't been approved for disability to help pay day-to-day bills as this care journey has been anything but free. Personally, my super expensive COBRA runs out in five months and my disability payments are on pause due to yet another review. My point is this exacerbates the availability of care for those suffering from Long Covid even further.

But alas again, there's hope.

* Trying to confirm, but I believe another start-up IncellDx (CEO Bruce Patterson) does the reporting component of Innovative Bioanalysis as noted in the footnote of the report image posted.