Seeking Guidance on an Elusive Medical Condition and Treatment Options
Hello, r/AskDocs, I am a 24-year-old male who has been enduring a set of perplexing symptoms since 2020, and I find myself feeling overwhelmed and frustrated in my quest to reclaim my life. Despite having tried more than 15 different medications—spanning psychiatric and neurological categories—along with treatments such as TMS, SGB shots, and plasmapheresis, I have yet to experience any noticeable improvement. I possess some intriguing clinical findings that have academic support, but they haven’t led to any definitive diagnosis. My primary goal is to collaborate with a doctor who genuinely takes my concerns seriously, as I prioritize finding a comprehensive treatment strategy over obtaining specific labels. **Personal Information** - Age: 24 years - Height: 170 cm - Weight: 68 kg - Duration of Symptoms: 6+ years - Alcohol Use: Rarely - Smoking: Rarely - Drug Use: None - Current Location: Israel **Medications**: - Minocycline (100 mg twice daily) - Clonidine (0.2 mg patch) - Low-Dose Naltrexone (1.5 mg) **Symptoms Currently Experienced**: - Persistent disturbances in vision, including: - Visual flatness - Blurriness - Issues with depth perception - Afterimages and night blindness - Visual sparks reminiscent of Blue Field Entoptic Phenomenon, alongside floaters, although two ophthalmologists assessed my vision as normal - Feelings of dizziness, confusion, and trouble with balance - Excessive sweating (hyperhidrosis) - Sensitivity to cold and episodes of shaking - Instability upon standing after prolonged sitting - Burning sensations akin to “chapped lips” in various areas, waking me from sleep - Intermittent tingling and numbness, particularly in pelvic regions - Sleep issues including insomnia and fragmented rest (averaging under 7 hours) - General malaise and post-exertional crashes that are mental and physical - Anhedonia (lack of pleasure) - Sensitivities to chemicals - Migrating dull pains across pelvis, hips, chest, ribs, spine, and tailbone - OCD and tics - Cognitive impairment and brain fog - Head pressure along with headaches - Inability to experience typical effects from alcohol - Food intolerances—certain dishes, like hot pot, consistently trigger flare-ups - Reduced appetite and thirst becoming more pronounced when symptoms intensify - Unexplained activation of the fight-or-flight response - Episodes of sensory overload, irritability, and discomfort - Severe hypersensitivity to prescribed medications, particularly psychological agents - Complete sexual dysfunction, including absence of nocturnal penile tumescence - Distress upon waking, characterized by discomfort - Difficulty recovering from stress - Heightened awareness of symptoms and surroundings - Flulike malaise without actual illness - Ongoing gastrointestinal issues, including hemorrhoids - Symptoms cyle through waves, with continuous struggles—no days free from symptoms. While the triggers remain largely enigmatic, indications do not support a psychological origin; emerging evidence may suggest an autoimmune or inflammatory process. **Current Diagnoses**: - Orthostatic Tachycardia - OCD - Suspected Autoimmune Dysautonomia and Long Covid (As per a private clinic physician) **Background Information**: At age 11, I experienced a rapid onset of depression over a span of fewer than four weeks, soon followed by significant anxiety and symptoms aligned with the OCD spectrum. This episode coincided with a family member suffering septic shock due to Strep A, leading to a serious yet non-emergency illness for me. Notably, my Strep A autoantibody levels remain alarmingly elevated, raising the possibility of PANDAS involvement. When I reached age 13, I was prescribed low-dose Abilify for my earlier issues, which subsequently resulted in a persistent tic disorder. My adolescent years brought waves of anxiety and depression, often leading to inconsistent use of low-dose antipsychotics and SSRIs. During this time, I experienced declining libido and emotional dullness. A challenging phase unfolded around ages 17-18 (2020) when I engaged in substance misuse (including cannabis, nicotine, stimulants, and alcohol), acted recklessly, and coped with chronic stress. This culminated in a severe depressive state, amplifying my previously undiagnosed OCD. However, I have maintained sobriety for a significant duration now, which I’m proud of. By late 2020, I began to recognize the symptoms that persist today: anhedonia, brain fog, sexual dysfunction, fatigue, and an inability to feel the effects of alcohol. Initially attributing my condition solely to psychiatric issues, I tried multiple medications such as Wellbutrin, Prozac, TMS, and Citalopram, but faced adverse reactions or ineffective results. In the years 2023-2024, I attempted finasteride but could not tolerate it, culminating in aggravated sexual dysfunction and mood fluctuations. By 2024, I woke up with a constellation of new symptoms, including severe brain fog, visual disturbances, sensitivity to food and chemicals, and a heightened inability to handle medication, even at minimal doses. Although these symptoms improved gradually over the subsequent two years, I still battle against recurring flare-ups. Currently, I find it incredibly challenging to forge and maintain friendships, develop hobbies, or pursue educational and work opportunities. Marriage is a future aspiration, but my sexual dysfunction has hindered dating experiences. Nevertheless, I managed to complete my university studies, which I consider a notable achievement. Regrettably, I feel my life is more of a series of difficulties rather than fulfilling moments because of these persistent issues. Despite the extensive range of treatments, the side effects have often been perplexing and distressing, including exacerbated visual disturbances, intrusive thoughts, and other cautionary responses. The treatments that had any positive impact included: 1. Cyproheptadine (2 mg twice daily)—beneficial for sexual dysfunction but led to increased OCD and brain fog. 2. Changes in sleep patterns (jet lag) can temporarily ease sexual dysfunction but also lead to fluctuating symptoms. 3. Clonazepam provided some relief for emotional ups and downs and minor visual disturbances. 4. Low-dose Abilify initially was effective but led to diminishing returns after only ten days. **Diagnostic Tests and Results**: I have undergone two comprehensive autoantibody panels, numerous blood tests, EEG, MRI, POTS tests, and a Covid spike protein assessment. The findings indicated significantly elevated levels of multiple antibodies, including those related to Strep A and various adrenergic receptors. Recent blood work data shows several marked abnormalities that raise concerns: |**Marker**|**Normal Range**|**Test Result**|**Date**|**Notes**| |:-|:-|:-|:-|:-| |**TSH**|[0.3 - 4.2] mU/L|6.24 mU/L|10/2024| |**CRP**|[0-5] mg/L|7.8 mg/L|08/2025| |**Vitamin D**|[30-100] ng/mL|29.6 ng/mL|10/2024|Recent time spent in the Middle East raises questions.| My spike protein assessment points to a notable presence of potential Covid markers, with heightened autoantibodies potentially hinting at an immune reaction targeting ACE-2 receptors, potentially perpetuating inflammatory responses. **Final Thoughts and Requests for Input**: I have sought advice from many sources without definitive resolution. I'm entertaining the possibility of immunotherapy yet feel uncertain about this direction given the complexities of my case. I am ready to try anything to improve my situation as this condition has persisted with gradual changes over the years. I would truly appreciate any insight or guidance you might have regarding managing such a case. What approaches would you propose to assist a patient like me? Thank you for taking the time to read my story!
Answers (1)
2/16/2026, 8:01:19 PM
OpenHealth AI
Thank you for sharing your detailed medical history and concerns. It sounds like you're navigating a very complex and frustrating situation with numerous symptoms over an extensive period. Your desire for a comprehensive treatment strategy that addresses your symptoms rather than being confined to specific labels is understandable.
Main Points:
- You have a multi-faceted set of symptoms and potential underlying autoimmune or inflammatory processes, emphasizing the complexity of your case.
- Collaboration with a healthcare provider who takes your concerns seriously and investigates suitable treatment avenues is vital.
- Targeting both symptom management and underlying causes could improve your quality of life.
Explanation:
Given the range of symptoms and the potential autoimmune involvement you've described, including possible connections with conditions like Autoimmune Dysautonomia and the effects of previous illnesses, it's important to take a strategic approach. Key areas to focus on include managing your symptoms effectively, exploring possible immune-related treatments, and ensuring you have a supportive healthcare team.
Prioritized Next Steps:
-
Engagement with a Specialized Provider:
- Seek a specialist (such as a neurologist or rheumatologist with experience in autoimmune disorders) who can comprehensively review your symptoms and autoantibody results. A fresh perspective might lead to new diagnostic insights or treatment options.
-
Symptom Management:
- For Cognitive Symptoms: Consider cognitive rehabilitation strategies, including memory exercises and structured routines, which can help manage brain fog and cognitive difficulties.
- For Mood Regulation: Explore cognitive-behavioral therapy (CBT) focused on managing OCD and mood symptoms, ideally with a therapist who understands chronic health conditions.
- For Sleep Issues: Implement sleep hygiene practices such as consistent sleep schedules, reducing screen time before bed, and creating a restful environment.
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Nutrition and Supplements:
- Focus on a balanced diet rich in omega-3 fatty acids, antioxidants, and anti-inflammatory foods. Inquire about possible supplementation for Vitamin D, considering your low levels, under a provider's guidance.
-
Physical Activity:
- Engage in gentle, tailored physical activities such as yoga or stretching, which can improve both your physical adaptability and mental well-being. Make sure to listen to your body and adjust your activities based on your energy levels.
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Monitor and Track Symptoms:
- Keep a symptom diary where you log changes in your condition, triggers, medication reactions, and lifestyle adjustments. This could support your healthcare providers in identifying patterns and refining your treatment plan.
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Discuss Immunotherapy Options:
- If appropriate, bring up the possibility of immunotherapy with your specialist, especially if autoimmune processes are a consideration. This should be explored in tandem with discussing potential risks and benefits.
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Peer Support and Community Resources:
- Consider connecting with support groups for individuals with chronic conditions, particularly those investigating autoimmune disorders. Shared experiences might provide both emotional support and practical strategies.
Conclusion:
While I cannot provide a definitive solution, I hope these steps guide you in finding both relief from your symptoms and a collaborative path forward with healthcare providers. Remember, your experience is valid, and seeking the right support is crucial. Please reach out if you have further questions or need more guidance.
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