One of my comrades in chronic pain reached out and recommended I see a neuroimmunologist for a closer look at what I’d been experiencing since 2012 but also now, the new array of symptoms that started post-COVID infection.
Genius! I love science and so, the thought of someone who incorporates the trio of neurology, neuroscience and immunology intrigued me. To be sure I wasn’t going down a worm-hole (literally, I once had a medical practice “diagnose” me by placing bugs on me to see which reacted to determine what vector-borne infections I was contending with), I consulted my primary care doc. She immediately signed off after researching his credentials and various areas of investigative research.
As always, the phase of my journey starts with tests – lots and lots of bloodwork, spit tests, oh – you name it. I am diagnosed with Severe Hyperinflammatory Macrophage Disorders – essentially the “cytokine storm” we’ve been reading about in COVID long-haulers and Mast Cell Activation Syndrome. What’s this you ask (me too)? It’s where the mast cells in the body are triggered by something like infections and wreak havoc on the body with a myriad of symptoms including muscle pain, extreme itching and cognitive issues (which I was now experience post-COVID).
We started a rigorous protocol of first, antibiotics to wipe out any lingering infections and then, gobs of supplements to strengthen the system. The protocol involved infusions of Vitamin C and Glutathione every week or two, daily Peptide injections at home (Tom and the girls are now experts in giving me shots), drinks and dietary restrictions.
After a few months, we did a check-in and nothing significant that I could tell had changed for me. My pain was worse than ever – a solid seven or eight round-the-clock. I was hospitalized – yep, yet again – this time, for severe spinal cord pain, migraines and these odd cognitive issues that were new to me.
The doctor explained that our first approach was “conservative” and wanted to go deeper with the testing to determine what’s next.
More blood work, of course, and a small fiber neuropathy biopsy. Now, I am usually an advocate of “test for anything, let’s rule it in or out,” but this was the first test I pushed back on. All of my previous nerve testing was normal. I had no numbness or pins and needles sensations associated with nerve issues. The doctor insisted and wouldn’t you know it, the biopsy came back positive for small fiber neuropathy. We now need to determine what’s causing it.
The blood work came back positive for high inflammation levels – despite the protocol. My ANA panel that hadn’t been positive in a while was positive after all these years. When my symptoms first started years ago, I had several positive ANA panels in a “speckled” pattern. This one was “peripheral.” I’m still trying to figure out the significance of that. The results were also strong positives for Anti-Cerebellum (brain auto-immunity) and HHV-6 and moderate positives for Epstein Barr Virus, HHV- 7 and Lyme Disease.
It’s no wonder I’m feeling more sick than I ever have in my life. It turns out that COVID can reactivate these viral infections from that past. Double-triple whammy.
My horrible rashes are back. So, I’m now a painful, itchy, exhausted mess of a human. I’ve been invited to be tested for a post-COVID research study that my doctor is heading up. I’ll go through that initial work-up in late June.
But first… I finally got to the point where I could not “positive or happy my way” through the pain anymore. Because I’ve refused to take pain medications for fear of addiction, which is the last thing I or my family need… I have just suffered for years with the pain only intensifying year after year.
And so, after much research, I found an intensive inpatient pain rehabilitation program. It will also help address my depression, which you can imagine has worsened with each new blow to my body. I start this three-week adventure June 7th.
They call it “a health retreat for those who’ve lost hope.”
It’s medically-based. In fact, my room is next to the medical team on-site. Yes! It a whole-person approach with therapy, meditation and gratitude, massage, acupuncture, reiki, equine therapy, nutrition, brain-based pain management techniques. This is exactly what I’ve been needing. Three weeks to focus on me with the guidance of medical experts in an environment that’s peaceful – rather than punishing like so many that I’ve looked in to.
It is not covered by insurance, so I could really use your prayers that this investment in time and money (and stress, I’m sure for Tom and the girls) results in even a reduction of pain to a solid four (I’d be happy with four) and a rebuilding of “me” again.
From Invisible Illness to Progressive Disability 