OpenHealth Q&A

Enduring Chronic Chest Discomfort for 3.5 Years - Seeking Solutions

For the past 3.5 years, I have been grappling with persistent chest pain. This all began after a significant health crisis I experienced four years ago, just two weeks following a booster vaccination. Please refrain from discussing vaccine politics; the event dramatically altered my life. The incident occurred while I was performing calisthenics in December 2021, at which point I was in excellent physical shape. Four months later, in March 2022, I believed I was recovering. I resumed my training, only to encounter a severe relapse—marking a turning point in my health journey. This episode kicked off my **chest pain and a severe dry cough** that persisted for four months, coinciding with the onset of ME/CFS symptoms (like group intolerance, overwhelming brain fog, extreme fatigue, POTS, post-exertional malaise, and a Bell's palsy-like experience). It took me quite some time to comprehend my condition despite dismissing several symptoms initially. During that period, my exhaustion was intrinsically linked to my chest pain; any overexertion left me waking up at night with sensations akin to my heart missing beats while lying on my side. I also experienced a burning sensation in my chest. Nowadays, I lead a relatively sedentary lifestyle, spending around 90% of my time at home, yet I have seen some improvements. The chest pain remains, albeit less severe, but I am hesitant to engage in long walks as they previously exacerbated my discomfort and brought on cramping sensations alongside irregular heartbeats. I sense that overcoming this chest pain could be crucial to my recovery. I have explored various treatments, and I will summarize my experiences in bullet points. * A 39-year-old male residing in Germany, working as an engineer with a PhD in physics. I have a pre-existing condition of asthma, but it does not require medication. * Summer 2021: Post-second Moderna vaccination, I felt a **bloated sensation in my heart** and experienced darkened vision for three days, but thankfully, no chest pain at that time. I unknowingly developed histamine intolerance and suffered my significant health crash two weeks after the third dose. * 2021-2022: I did not receive any treatment initially, as both my doctors and I were unaware of my condition. Tests revealed elevated **Borrelia IgM, IgG**, and **EBV IgG** levels. Delving deeper, I discovered the presence of **GPCR-Autoantibodies** (both in terms of abnormal levels and function) and **ACE2 antibodies**. I was ultimately diagnosed with **PostVac syndrome** and **ME/CFS**, alongside **HLA-B27**. I began treating my histamine intolerance but noted very low ATP and concerning lactate/pyruvate values. My chest pain began alongside the dry cough in March 2022. Later that spring, I contracted COVID-19, which aggravated both my chest pain and cognitive fog. * 2022: Relevant tests indicated significant **Borrelia LTT** results, although a neurologist concluded it was not Lyme disease. Short courses of cyclosporine provided minimal relief from crash severity. A four-week regime of doxycycline substantially improved my daily fatigue and mental clarity, but my neurologist insisted it wasn't Lyme-related. In the summer of 2022, I underwent **seven immunoadsorptions** targeting GPCR AAbs, which provided immediate relief from brain fog after the first treatment. Following a mild COVID infection post-third immunoadsorption, I paused for two and a half weeks before continuing. A major crash occurred after my seventh treatment, resulting in persistent tinnitus. Brief relief from my chest pain followed the immunoadsorptions but only lasted a few weeks. Attempting to increase daily activities led to a resurgence in irregular heartbeats at night. I also developed **low-key HPV**, which diminished my sexual activity, compounding the fatigue and chest pain issues. GPCR AABs resurfaced weeks after the last immunoadsorption. * **Seven HELP Apheresis sessions** at the end of 2022 to early 2023 revealed significant **micro-clots**, likely contributing to my cold, painful legs. Notably, a regimen of three blood thinners offered more improvement than the HELP procedures. * 2023-2024: A year spent on **triple antibiotics**, managed by a Lyme specialist, has been transformative. Conditions like burning sensations in my brain, memory problems, and POTS have significantly improved, particularly when taking hot showers, and I've no longer been bothered by cold, painful legs. I later started taking Valaciclovir due to a significant positive CMV Elispot. During a period when I experienced lower CMV Elispot values, I was pain-free for two weeks—though this could have been coincidental, the reliability of Elispots remains uncertain. Additionally, I have been diagnosed with **glaucoma** in both eyes, though it has yet to affect my vision. The antibiotics did not relieve my chest pain. * 2025-present: I have discontinued antibiotics and am now focusing on regular infusions of Vitamin C, Lysine, and Glutathione. At the beginning of the year, I recorded significant EBV saliva replication. CMV Elispot and CMV LTT tests remain substantially positive, leading me to question whether false positives are related to autoimmune issues. Trusting Elispots poses a dilemma for me. * Other diagnostics include: Cardio MRI (1.5T), Cardio CT, Cardio Echo, gastroscopy, lung CT (noting a shrinking thymus), and tests for Troponin and CRP—all of which yielded no alarming results. A 3D Cardio ECQ reading was mildly suspicious once while orthopedic evaluations appeared benign. * Current medications include 4mg Guanfacine (ongoing for two years), Ketotifen, and bi-weekly infusions of Vitamin C and Lysine. Previously, I also trialed Colchicine and Sartans, which did not impact my chest pain. I have accumulated a wealth of test results and would be happy to share them upon request. The expenditures on treatments and diagnostics have been considerable. I never anticipated my chest pain would persist for such an extended period. My goal is to regain my health, yet I find myself at a loss regarding the next steps. Could the discomfort stem from slight, ongoing inflammation of GPCRs—potentially warranting immunosuppressive therapy? Alternatively, might the issue be structural despite prior orthopedic evaluations? I worry that increasing my physical activity may intensify my chest pain or provoke another severe episode, potentially hindering my recovery efforts. I welcome any suggestions or recommendations, particularly individuals who specialize in these matters. **Thank you for taking the time to read my lengthy account!**

Answers (1)

9/7/2025, 4:31:16 PM

OpenHealth AI

Thank you for sharing your complex and detailed health journey. It’s understandable to feel overwhelmed when facing chronic discomfort, especially with such a lengthy history of symptoms.

Main Points:

1. Chest Pain Management: Given your extensive medical history, it’s crucial to develop a tailored approach to managing your persistent chest pain.
2. Focus on Inflammation and Activity Levels: Continued assessment of potential inflammatory sources and careful gradual increase in physical activity may be key.
3. Regular Monitoring and symptom awareness: Keeping track of symptoms during any treatment adjustments or activity levels is important.

Explanation:

Your chest pain can arise from several factors, including inflammation, structural issues, or even sensitivities related to your conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and histamine intolerance. Since previous tests did not indicate an urgent structural problem, ongoing inflammation might indeed play a role — especially in relation to your GPCR autoantibodies and potential underlying hyperimmune responses.

Next Steps:

1. Consider Anti-inflammatory Approaches:

   • Diet Adjustments: Integrate anti-inflammatory foods like fatty fish, leafy greens, nuts, and seeds while eliminating processed foods and known allergens.
   • Over-the-counter medications: Nonsteroidal anti-inflammatory drugs (NSAIDs), if safe for you, can help manage inflammation temporarily but should be used sparingly.
   • Consultation about Immunosuppressive Therapy: Since you raised the possibility of continued inflammation affecting your GPCRs, it may be worthwhile to discuss this option with a healthcare provider familiar with your unique situation.

2. Gentle Physical Activity:

   • Gradually reintroduce low-intensity exercises such as walking or stretching based on tolerability. Start with very short durations (5–10 minutes) and monitor how your body reacts. Use a log to track your pain levels and other symptoms post-activity. This may help you identify specific triggers or tolerable activity levels.

3. Ensure Regular Monitoring of Symptoms:

   • Keep a diary of your chest pain, noting triggers, duration, intensity, and any associated symptoms. This can provide valuable information for you and healthcare providers in guiding treatment adjustments.

4. Explore Further Investigations:

   • If feasible, consider consulting a pain specialist or an immunologist to explore any advanced treatment options specifically for autoimmunity or chronic pain management.

5. Stay Engaged with Support Services:

   • Given the psychological toll chronic illness can have, consider joining a support group for individuals with ME/CFS or chronic pain. Sharing experiences can be therapeutic.

Lastly, remember that recovery can be non-linear, with periods of improvement and setbacks. You are doing a tremendous job navigating a complicated journey; taking small, manageable steps will help you regain control over your health. If you need further details on any step or have additional questions, feel free to ask.