Desperate Search for Answers in an Unidentified Infection
Basic Details: Male, 27 years old, 6’4”, 138 lbs. Greetings, medical professionals. For the past ten years, my life has drastically deteriorated. Despite consulting numerous physicians and visiting some of Europe's top hospitals, I find myself with limited choices. The only concrete information we have is the discovery of an infectious disease, which was detected through microscopic blood analysis and confirmed by two separate laboratories. Unfortunately, they were unable to specify the pathogen involved and merely concluded their investigations. Determined to pursue answers, I delved into the fundamentals of microscopy and acquired my own microscope. To my surprise, I was able to observe the same organism referenced in the laboratory reports. I have since presented my findings to every medical expert and facility I've consulted. Although they concur that something is amiss, they ultimately declare there’s nothing they can do because subsequent blood tests aimed at identifying the organism have returned negative results. I am eager to try various antimicrobial treatments in the hope that they may provide some relief, yet no physician seems willing to authorize such prescriptions. I continue to be referred to new specialists, but the journey yields no progress. I would greatly appreciate any advice on how to navigate this challenging circumstance. Thank you for taking the time to read my message. In summary: Long-term illness with an unidentified organism found in my blood, unsuccessful identification efforts, and a general reluctance from doctors to pursue treatment options have left me feeling hopeless and out of alternatives.
Answers (1)
7/14/2025, 9:40:37 PM
OpenHealth AI
I'm truly sorry to hear about your long struggle with an unidentified infection and the challenges you've faced in seeking help. It’s understandable to feel frustrated and hopeless in such circumstances, especially with the added uncertainty around your health. Let's focus on a few key points and steps you can take next.
Main Points
- You've discovered an organism in your blood but have not received a definitive identification.
- Medical professionals acknowledge the issue but seem hesitant to proceed with treatment.
- You seek effective approaches to manage your condition.
Explanation
Chronic, unidentified infections can be particularly vexing both for patients and healthcare providers. When a pathogen cannot be identified, it complicates treatment options significantly. It's also common for healthcare teams to be cautious about administering broad-spectrum antimicrobials without confirmed laboratory results due to potential resistance issues and side effects. Nevertheless, your determination to understand and seek relief is commendable.
Next Steps
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Document Your Findings:
- Continue to keep a detailed record of your symptoms, any changes you notice, and the organisms you observe under your microscope. This can be valuable information to bring to your next visits.
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Engage in Comprehensive Testing:
- While it's challenging, consider advocating for more specialized tests that can sometimes identify rare pathogens or atypical infections, such as PCR (Polymerase Chain Reaction) tests or cultures that target broader ranges of organisms.
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Seek a Specialist:
- Look for infectious disease specialists with a focus on chronic infections or those who have experience with complex cases. They may have access to treatment paths less frequently considered.
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Explore Functional Medicine:
- A doctor in the functional medicine field might take a different approach, focusing on your entire body systems rather than just the infection. They can often assess potential contributing factors like nutritional deficiencies, immune response, and gut health.
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Self-Care and Support:
- While awaiting clear answers, prioritize your overall health—focus on a balanced diet, adequate hydration, and gentle physical activity if you're able. Consider joining support groups where you can connect with others who may be experiencing similar medical challenges.
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Communicate with Your Provider:
- Clearly express your desire to explore treatment options and share your documented findings. If necessary, consider obtaining a second or third opinion from different medical institutions.
Remember, many patients experience a lengthy journey towards diagnosis and treatment, but your advocacy for your health is vital. Stay persistent and keep seeking answers; sometimes, the solutions emerge from unexpected places. Let me know if you need more information on any particular aspect.
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# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - 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7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - Cons: Surgical scar, longer recovery time (7-14 days in hospital) - Duration: 2-4 hours ### Option 3: **Liver Transplantation** - We have been advised this is not necessary as the portal vein is functional and liver health is improving. --- ## SPECIFIC QUESTIONS TO CONSIDER: 1. **With a functional portal vein (6.1 mm) and improving liver function (ALT normalized), is it advisable to pursue endovascular closure as the preferred treatment?** 2. **Despite ALT levels improving, the bilirubin remains consistently high (242). Should this be a cause for concern? Is there a prospect for it to normalize post shunt closure?** 3. **Are the hemangiomas/nodules (11.6×20.7 mm) linked to the shunt? Will they likely resolve following shunt repair?** 4. **How urgent is the proposed intervention? Is immediate action required, or is there flexibility to wait a few months?** 5. **What complications should we be vigilant for during the waiting period?** 6. **Regarding endovascular closure - what is the average success rate for infants aged 7 months? Are there concerns regarding the shunt size (9.9 mm)?** 7. **The measurement of the portal vein has shown improvement from 6.1 mm to 3.9 mm; should this be perceived as a positive sign or a reason for concern?** 8. **Are there special directives (diet modifications, medications) we should consider while awaiting the procedure?** 9. **Post-procedure, how long should we expect it might take for:** - Normalization of bilirubin levels? - Return of stool color to normal? - Resolution of jaundice? - Regression of hemangiomas? 10. **Can you recommend any specialized centers for pediatric Abernethy malformation treatments? We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. Seeking expert advice on optimal treatment strategy and timing.