OpenHealth Q&A

Navigating Ongoing Health Issues After Autoimmune Diagnosis and EBV Infection

**Patient Profile:** 33-year-old transgender male, Caucasian, Canadian **Medical History:** Hypothyroidism (normal TSH), Gender Dysphoria, Binge Eating Disorder **Surgical History:** Hysterectomy (December 2022), Double Mastectomy (June 2023) **Medications:** - Synthroid 175 mcg - Vyvanse 30 mg (discontinued due to severe fatigue) - Testosterone Enanthate 50 mg weekly (testosterone levels are normal) **Vitamins/Supplements:** None **Substance Use:** None Over the past year, I’ve been facing some minor issues related to my vision and bowel function. However, everything escalated in late April when I contracted Epstein-Barr Virus (EBV) for the first time. Despite not knowing it was EBV at the outset, I sensed that something was off, and my body felt unreliable. Night after night, I would awaken drenched in sweat, and while my fever peaked at 100.4°F, it typically hovered around 99°F. I felt achy, exhausted to my core, and my body ached inside and out. This state lasted for nine days of intense night sweats. On my scheduled visit to the doctor, my general practitioner advised me to head to the emergency room for quicker testing. Upon visiting the ER, I was mostly dismissed, being assessed simply for abdominal pain and with my fever having resolved. However, a series of tests commenced, including a liver panel, and when the results emerged, it raised significant concerns: - ALT - 489 u/L - ALP - 603 u/L - AST - 180 u/L - Bilirubin, Total - 49 umol/L Given that I lead a sober lifestyle and had normal liver function results just a year ago, these findings were alarming. To rule out contagious conditions, I was placed in isolation, while further blood tests followed, querying recent travel, unusual foods, or chemical exposure, none of which applied to me. Many vials of blood were drawn, showing elevated white blood cell counts amongst other abnormalities, but tests for common viral infections like COVID or measles returned negative. This led to imaging of my abdomen through a CT scan, which revealed an enlarged liver and spleen, dimensions measuring 21 cm and 16 cm respectively, but no significant damage was noted. An endoscopic ultrasound to check for gallstones yielded only signs of pancreatic fibrosis and prior gastritis without any acute concerns. With no clear diagnosis, the prospect of a liver biopsy loomed. Fortunately, a hepatologist queried about recent illnesses, leading to mention of my spouse's mild sore throat a couple of months back, which had cleared without serious issues. This prompted additional blood tests, uncovering crucial insights. **Epstein-Barr Virus Serology Panel Results:** - EBV VCA IgM - Reactive - EBV VCA IgG - Reactive - EBV anti-EBNA-1 IgG - Nonreactive Later, an **EBV NAT Panel** revealed: - EBV (DNA) NAT, Blood - Detected - EBV (DNA) Viral Load, Blood - 625,618 IU/mL - EBV (DNA) Log Viral Load, Blood - 5.80 Log10 IU/mL This warranted the cancellation of the liver biopsy unless my liver condition deteriorated (happily, after 4.5 months, my levels have normalized). Yet, my post-viral recovery has been troubling. Constant fatigue plagues me; I awaken feeling drained (having tested negative for sleep apnea previously) and now find myself exhausted after even the lightest tasks—reading, chores, or simply sitting and standing. This exhaustion manifests itself two to three days after exertion. I still experience night sweats, albeit they are milder now, and dizziness when bending over. I frequently need to rest, struggling to sustain any upright position for long due to weakness in my hands and tremors in my left hand when grasping objects. My previous level of physical activity has significantly declined; walking 20 kilometers daily is now reduced to a struggle to manage even 5 without feeling utterly drained afterward. Recently, I've also noticed increased visual disturbances that we ruled out as structural eye issues, and an MRI is on the horizon. Despite having encountered surgeries before, my recovery from this episode feels far less manageable. I understand that it hasn’t yet been six months since my EBV diagnosis, but my doctor remains perplexed by my ongoing challenges and has referred me to an internal medicine specialist. I am uncertain about the future or what this could imply for my health, though my desire to improve is strong. There has been speculation regarding the potential of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Additionally, I had already experienced bladder and bowel issues, along with vision problems that warranted the MRI, prior to this EBV event. Could these conditions be interconnected? With a family history of autoimmune diseases—my mother has multiple sclerosis and various relatives have autoimmune conditions—it adds to my anxiety regarding my health. I've urged my family doctor to permit my return to work, though he is cautious, clearly thinking it best for my wellbeing not to rush back into things. This caution frustrates me. Mental health concerns like anxiety and depression have been evaluated and deemed not to apply at this juncture. Despite everything, I maintain a positive outlook supported by a network of friends and family. **Next Steps:** What should I prioritize during my consultations with the internal medicine physician? Should I gradually push myself with exercise? What further tests should I consider requesting? Previously, I had an autoimmune panel that mostly returned negative results, only revealing a slight positivity in one. Recently, I also tested positive for celiac disease, but it was suggested that this could be due to the acute EBV incident, necessitating a follow-up test in six months. Would it be prudent to wait and observe until that timeframe?

Answers (1)

8/18/2025, 1:31:18 AM

OpenHealth AI

It's understandable to feel overwhelmed given your health concerns, especially after the challenges posed by your recent EBV infection and ongoing symptoms. Here's a summary of key points and actionable steps to take as you navigate your care with the internal medicine physician.

Summary of Main Points:

1. Current Health Status: You are experiencing significant fatigue, weakness, night sweats, and visual disturbances following your EBV infection.
2. Connection to Autoimmune Conditions: Given your family history and the possibility of ME/CFS, it's important to investigate these links further.
3. Next Steps with Healthcare Professional: Prepare for your upcoming consultation with actionable questions and considerations.

Explanation:

After an EBV infection, some individuals experience prolonged symptoms, sometimes resembling those seen in chronic fatigue syndromes or autoimmune conditions. Your elevated liver enzymes and other symptoms may have indicated an acute response to the virus; fortunately, normalization of those levels is a positive outcome. However, the fatigue you're experiencing, especially after exerting yourself, may indicate a need for further investigation into your overall health.

It's also worth noting that your family history of autoimmune diseases could provide insight and prompt further screening for conditions that run in families.

Prioritized Next Steps:

1. Consultation Preparation:

   • Prepare a symptom diary. Document your symptoms, their frequency, and triggers. Highlight episodes of fatigue, visual disturbances, and any bowel issues.
   • Compile your medical records and previous test results, especially those related to the EBV infection and thyroid tests.

2. Specific Topics to Discuss:

   • Possibility of ME/CFS: Ask about the criteria for diagnosing ME/CFS and if a referral to a specialist in fatigue syndromes is appropriate.
   • Connection to Autoimmune Diseases: Inquire about further autoimmune screening, considering your family history. It may be worthwhile to discuss previous test results in light of your current symptoms.

3. Testing Considerations:

   • Request follow-up tests for celiac disease as it may need confirmation. If there's uncertainty surrounding the acute nature of this result, further testing can help clarify.
   • Consider tests for other autoimmune markers, or even an MRI, to investigate your visual disturbances in relation to potential neurological causes.

4. Managing Fatigue:

   • Gradually resume physical activity based on how your body feels. Start with very light exercises such as walking for short durations (5-10 minutes) and increase as tolerated.
   • Ensure to balance rest and activity; pushing through exhaustion can be counterproductive. Implement rest days and focus on gentle stretches or yoga if energy permits.

5. Support Mechanisms:

   • Utilize your support system, sharing your experiences with trusted friends and family, who may provide comfort and encouragement.
   • Since mental health concerns were ruled out, keep in touch with your doctor if you notice changes in mood or anxiety levels as you navigate this challenging period.

While you await your referral and further testing, be gentle with yourself during this recovery phase. Understand that it’s common to have fluctuating symptoms after viral infections like EBV. Approach your health team with curiosity and openness, advocating for your well-being as you pursue a clearer path forward. Don’t hesitate to reach out with updates or further questions about your health journey.