Exploring Diagnostic Options for an Unexplained Illness
I am a 32-year-old woman, standing at 5 foot 7 inches and weighing 120 pounds. Currently, I am on medications including Vyvanse, Loryna, bupropion, and Xanax. My medical journey includes consultations with an oncologist to rule out lymphoma and visits to a rheumatologist. In July 2024, I began experiencing persistent low-grade fevers averaging around 99.7°F, along with night sweats and itching in my armpits and groin during the night. By December 2024, I encountered an acute illness that lasted approximately a week. During this time, all of my lymph nodes swelled simultaneously, accompanied by symptoms such as extreme fatigue, headaches, eye discomfort, vertigo, nausea, and postural orthostatic tachycardia. About eight days in, I developed a flat rash covering my arms, legs, and trunk, as well as nerve pain in my legs, reminiscent of the sensation of ants crawling. On the tenth day of my illness, I also experienced joint and muscle pain, particularly affecting my fingers. Testing showed negative results for flu, COVID-19, and Epstein-Barr virus (EBV). However, my liver enzymes were elevated, and the urgent care facility suggested that roseola might be the cause. A Lyme disease test ordered later yielded negative results. Despite treatment, my lymph nodes have not reduced in size; instead, they have become larger and harder. For the past two months, I have been experiencing consistent low-grade fevers daily. I continue to deal with postural orthostatic tachycardia, night sweats, and persistent itching. The rash has intensified, and a dermatologist identified it as livedo reticularis. Additionally, a new skin issue developed on my forehead, which the dermatologist speculated could be en coup de Sabre. Having textured breast implants, I sought the opinion of an oncologist to eliminate the risk of Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA ALCL). Imaging revealed metabolically active lymph nodes located in my armpit, groin, and inguinal area, along with some activity noted in the hilum of my right lung. A lymph node biopsy indicated I have hyperplasia in the follicular, sinusoidal, and paracortical areas. I consulted a rheumatologist who conducted an AVISE test, which returned negative results, as did my other examinations. The only notable irregularity in my recent blood work was a high mean corpuscular volume (MCV) and low prothrombin time. Following this, my rheumatologist recommended I see a cardiologist to evaluate for POTS, and my primary care physician suggested that I consult an infectious disease specialist next. Additionally, I was residing in an older apartment that had rat issues and experienced water damage from a hurricane shortly before my acute illness began. I'm considering whether it would be beneficial to see an allergist as well. I am reaching out for any suggestions regarding additional tests that might be helpful in uncovering the cause of my symptoms.
Answers (1)
6/21/2025, 2:21:06 PM
OpenHealth AI
It's understandable to feel overwhelmed with your complex symptoms and medical history. Given your persistent low-grade fevers, night sweats, lymph node issues, and various other troubling symptoms, it's crucial to approach this systematically to uncover the root cause.
Main Points:
- Ongoing Symptoms: Your symptoms have persisted and include fever, swelling of lymph nodes, joint and muscle pain, and skin issues.
- Current Specialists: You are already consulting various specialists including an oncologist, rheumatologist, and they have suggested further evaluations (infectious disease and cardiologist).
- Potential Considerations: Given your history and environmental factors, there may be underlying infectious, autoimmune, or allergenic causes that still need exploration.
Explanation:
Your symptoms could potentially link to several conditions, including an autoimmune disorder, chronic infection, or environmental exposures (like mold from the water damage). The swelling in your lymph nodes and ongoing fevers are particularly concerning and warrant further investigation.
What you described—persistent fevers, increased lymph node size, and skin issues—suggest there may still be unrecognized conditions such as:
- Infectious Diseases: Some infections can cause prolonged symptoms and may not have shown up in initial tests.
- Autoimmune Diseases: Conditions like lupus or other connective tissue diseases could explain systemic symptoms and skin manifestations.
- Allergic Reactions: Reactions from exposure to potentially harmful environmental factors could be a concern, especially considering your living conditions.
Next Steps:
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Infectious Disease Specialist: Prioritize this referral. Bring all your previous test results and details about your acute illness history. They might recommend specific tests for uncommon infections (e.g., viral loads, specific serologies).
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Cardiology Evaluation for POTS: Ensure this assessment is completed, as POTS can significantly impact your quality of life and may relate to other underlying issues.
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Consider an Allergist: If signs of allergies are present or suspected (especially with your living conditions), an allergist can help rule out or confirm any environmental allergens contributing to your symptoms.
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Comprehensive Blood Work: Discuss the possibility of broader tests, such as:
- Autoimmune Panel: This can help identify any autoimmune conditions.
- Thyroid Function Tests: To evaluate for any endocrine issues.
- Specific Infectious Disease Panels: Shifting focus to uncommon pathogens or chronic infections.
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Keep a Symptom Diary: Document all symptoms, changes over time, and potential triggers you observe, including any reactions to medications and environmental factors.
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Support System: Engage with a support network either through online forums or local groups for ongoing concerns. It can be helpful to connect with others who have similar experiences.
Please keep communication open with your healthcare team, and ensure you advocate for further investigations if needed. Understanding the root cause of your symptoms is essential in finding appropriate treatment and relief. I wish you all the best in your journey toward health.
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