April

Considering Japan for Vx injury or LC? Update on my journey: I wanted to share an update because quite a bit has changed since I returned from Japan. Unfortunately, my health has continued to decline. Recent immune testing has shown that my immunodeficiency is more significant than we originally understood, including inadequate protective antibody responses to pneumococcal bacteria. My autoimmune markers remain elevated, and more recent testing also shows increasing inflammatory activity. At the same time, the neuropathy has continued to worsen. The burning pain and numbness are spreading, and my headaches have become significantly worse. Because of the headaches and my existing cervical instability and vascular issues, further vascular imaging of my neck and brain may be needed to evaluate for additional compression. This week I am traveling back to Utah, where much of my specialty medical team is located, for my first two IVIG (intravenous immunoglobulin, made from pooled donor plasma) infusions on back-to-back days. These treatments will be given in an infusion center. My physicians hope IVIG may help address the antibody deficiency and potentially some of the immune-mediated inflammation and neuropathy as well. I have also connected with members of the React19 community who have experienced substantial improvement with IVIG. Their experiences give me some hope while also reminding me that everyone responds differently. Travel adds another layer of expense—gas, food, medical costs and the trip itself—but thankfully I will be able to stay with family, so lodging is covered. Another big change has been accepting that I need a motorized wheelchair. I fought that reality for a long time. I can no longer make the short distance to our mailbox or walk through a grocery store. Buying the chair felt like admitting something I wasn't ready to admit. But it has also given something back to me. Special thanks to Kelsey for helping me see this and allow me to test drive your wheel;) I can be outside with Brew, Greg and Kai. I was able to accompany Kai on his first day of school. Those moments matter more than I can explain. The chair represents loss, but it has also allowed me to participate in pieces of my family's life again. I also want to give a very honest and objective update about the treatment I underwent in Japan, particularly for people who may currently be considering going. Before I left, Dr. Jordan Vaughn, my naturopath Dr. Costa, and my immunologist Dr. Jones intentionally ordered extensive laboratory testing so that we would have objective data to compare before and after treatment. Relevant testing was performed before Japan on March 18 and July 15, 2026. Post-treatment testing was performed after my return on August 25, with additional redraws on September 10 when several specimens—including MMP-9—could not be adequately processed from the earlier draws. One of my goals in going to Japan was not only to get better, but to determine whether the treatment produced measurable changes that might help validate the program and potentially help other people with Long COVID. So far, the opposite of what I hoped to document has occurred. My post-treatment testing has not shown the objective improvement I hoped to see. Instead, several inflammatory markers we were following before treatment have increased, and several cytokines that had previously been below the laboratory cutoff are now elevated. For example, comparing the most recent valid pre-treatment values from July with my September 10 post-treatment testing: • IL-12 increased from 4.7 to 9.9 pg/mL. • IL-5 increased from <2.1 to 3.3 pg/mL and is now elevated. • IL-17 increased from <1.4 to 1.7 pg/mL and is now elevated. • TNF-alpha increased from 6.0 to 16.0 pg/mL and is now elevated. • TGF-β1 increased from 12,367 to 33,676 pg/mL and is now above the laboratory reference range. • MMP-9, which was already elevated at 1,283 ng/mL before Japan, increased further to 1,519 ng/mL. Some of the planned July 15 and August 25 specimens were insufficient for certain tests, which is why the September 10 redraws were necessary. For those markers, I am comparing the September results with the most recent valid pre-Japan measurements rather than pretending we have data points that we do not. These are not simply changes in how I feel. They are measurable laboratory findings that my medical team and I intentionally tracked before and after treatment. At the same time, clinically, my neuropathy, burning pain, numbness, headaches and overall function have continued to decline. I want to be equally clear about what these results do NOT prove. They do not establish that the treatments in Japan caused these changes. Long COVID is complicated, laboratory values can fluctuate, and there are many potential variables. What I can say is that my own objective pre- and post-treatment data have not demonstrated the improvement I went to Japan hoping to document. In several areas, the measurable trend has instead moved in the opposite direction. The treatment itself was also not without significant risk. My central-line placement resulted in a pneumothorax requiring hospitalization and a chest tube. Since August, I have personally spoken with several patients who initially experienced improvement after treatment and later experienced relapsing symptoms, in some cases within only a few months of completing treatment. This is information I wish I had understood more clearly before making my decision. Knowing what I know now—including my clinical course, the complication I experienced, the pre- and post-treatment laboratory findings, and what I have since learned from other patients—I would NOT make the same decision to go. I feel a responsibility to say that clearly for anyone currently considering this experiment. I believe patients deserve to understand not only the possibility of improvement, but also the procedural risks, the uncertainty surrounding durability of response, and the possibility that symptoms may return even after an initial improvement. I went to Japan hoping not only to improve my own health, but also to gather information that might help other people suffering from Long COVID. I genuinely hoped my pre- and post-treatment testing would help validate the program. Being transparent when the results do not support what I hoped to find is part of that responsibility too. Meanwhile, Greg is still unemployed following the layoffs that affected him and his team. He is looking for work every day—networking, contacting leads, applying, and doing everything he can to find the right opportunity. It has made an already difficult financial situation even harder. I know these are difficult economic times for so many people. I never take a donation, share, message, prayer, or offer of help for granted. We are deeply grateful. I certainly don't want anyone to suffer hardship because of me. If anyone has unused airline miles or travel points and would be willing to use them toward one of my medical trips, that could also be tremendously helpful as travel to specialists continues. For anyone who prefers Venmo: @april-amber-theisen Go Fund Me: gofundme.com/f/help-april-ac… gofund.me/b7f2c2cb6 Thank you for continuing to stand beside our family. I am still searching for answers, still following the data—even when it isn't the answer I hoped for—and still hoping that some combination of science, persistence and time will give me more of my life back. @TheRebelPatient @DrMaryBowden @Burning_mama47 @kelseyshields08 @evanfgeorge @EdogawaPatients @KenCaptn20114

☠️💉 Long COVID & Vax Injury Update ❤️ Grateful to Dr. Jordan Vaughn, who's investigating neuroinflammation & possible venous outflow issues. His medications are helping my headaches! Neuroimmune testing & neurosurgical imaging review are pending. ❤️ Dr. Douglas Jones is helping me transition to home IVIG at lower, slower doses after serious infusion setbacks. Their dedication to treating complex spike-injured patients means so much.

☠️💉 Long COVID & Vax Injury Update: I've unexpectedly been accepted into Mayo Clinic's Long COVID Clinic! No gatekeeping! I will share what i learn! Since Japan, my PEM, neuropathy & debilitating fatigue have worsened significantly. Despite setbacks, I'm cautiously optimistic about exploring another piece of this complex puzzle.

💙 Health update from Utah: IVIG was extremely difficult. I developed a severe, persistent headache clinically concerning for IVIG-associated aseptic meningitis—the worst headache of my life for 3 days. Thankfully, my Utah team treated it aggressively, and we avoided the ER. 💙 My Utah rheumatology team will continue coordinating with my Utah immunologist. Our goals are to transition IVIG to home infusions in Oregon, reduce the number of trips I must make to Utah and establish more reliable vascular access. 💙 Lymphedema following melanoma and lymph-node removal means my right arm cannot be used for IVs. Access in my left arm is becoming increasingly difficult. My last IV required 3 attempts, more than an hour and an NICU nurse. 💙 Rheumatology recommends a port-a-cath for ongoing treatment. I understand the medical rationale, but emotionally it feels like another acknowledgment that this illness is chronic. I haven’t been ready to admit how sick I may be. I hope the port can be removed when I recover. 💙 Endocrinology is evaluating progressive bone-density loss and fracture risk after 2 years of being unable to perform weight-bearing exercise. I went from competitive athlete, firefighter and triathlete to needing a walker or wheelchair and being unable to lift weights with my coach of a husband. 💙 Learning that my bones are weakening—and that I am again at risk for fractures—is additional evidence of the systemic effects of post-COVID illness. We travel from Oregon to the University of Utah because 4 Oregon endocrinology referrals were denied, while OHSU was scheduling through 2028. 💙 I also followed up with Dr. Jordan Vaughn, my Long COVID vascular specialist. He is reviewing my brain and cervical imaging with neurology and neurosurgery to determine whether cranial venous or lymphatic outflow dysfunction warrants further investigation. 💙 My headaches worsen as the day progresses and have features that raise concern for increased intracranial pressure. Venous and lymphatic outflow obstruction is an emerging area of research in ME/CFS and Long COVID. These systems have been seriously overlooked in modern medicine. 💙 Traveling from Oregon to Utah for specialty care brings significant costs—gas, food, appointments, medications, compounded prescriptions, insurance and copays. Donations help me access care that has not been available closer to home. This trip has been hard, but I’m deeply grateful for Greg, Mom, the pups, my specialists and quiet moments outside in the Utah rain and sunshine. Thank you for every message, prayer, share and donation. My sincere apologies if I haven’t returned a message recently. I’m trying to catch up, but brain fog and cognition have been especially challenging. Please tap me on the shoulder if you don’t hear from me soon. Your support helps me keep going. Please stay safe and love one another. Gentle hugs, April Venmo: @april-amber-theisen gofund.me/6f35eb3a6

I've been home from Japan for a few days, and I've struggled to find the words. My heart is full of gratitude for so many who helped make it possible. For the love, supportive words and prayers. I am beyond grateful. I left home with hope. I came home humbled and maybe a bit broken. My second filtration was complicated by a partially collapsed lung that required five days in the hospital with a chest tube. Because of that complication and funding, I was only able to complete two filtration treatments and sixteen stem cell growth factor infusions. The data to make a risk vs benefit decision could not be completed prior to my departure. I wish I could tell you I'm feeling better. I dont. I haven't noticed any improvement in my symptoms, and that has been incredibly hard to accept. I also don't want to take away anyones hope. One thing I do want to share is my personal perspective. While I was in Japan, I met people who experienced remarkable improvements, others who like me didn't respond, and a few who shared that some of their symptoms later returned. I can't speak for anyone else's outcome, but I wish I had better understood how variable patient experiences could be before making such a significant medical and financial commitment. I believe in transparency sometimes painful but honest conversations about the full range of possible outcomes. I tried to practice this with my patients and in my personal life. The last 5 years have brought me to my knees. But it hasn't taken away my hope. Hope just looks different now. I'll continue working with my physicians, I am looking into IVIG after seven insurance appeals, yes- SEVEN- that is the current state of our medical system! I am exploring a possible clinical trial in Florida. I will continue working with Dr Jordan Vaughn and will continue contributing my data if it helps move Long COVID and vaccine injury research forward. The hardest part over the past 2 wks has been that accepting that investing in a power wheelchair may actually give me more freedom. Maybe it means taking Brew down a trail again or enjoying a farmer's market with my husband without spending days recovering afterward. I'm grieving the life I miss, but I'm not giving up. I'm learning that sometimes moving forward means adapting, continuing to contribute to science, and finding moments of joy while the search for answers continues. I updated my GoFundMe today for anyone who'd like to read the full story. Thank you for staying beside me. gofund.me/5918ca767