Struggles with E. Coli Infections and Medical Challenges
Greetings Redditors, I'm reaching out to this community because I'm feeling utterly perplexed, and I haven’t received much assistance from traditional medical avenues. As a 37-year-old female weighing 79 kg from Australia, I’m currently facing a series of health complications that are deeply troubling. For the past two years, I’ve been grappling with malnutrition and vitamin deficiencies, despite high-dose oral supplementation yielding no results. Furthermore, my kidney function has been declining, evidenced by worsening eGFR levels. I’ve been experiencing significant bloating in my abdomen and coagulation issues, indicated by abnormally high APPT levels. Notably, testing suggests the presence of lupus anticoagulant; however, this was dismissed by the hospital as a potential error related to heparin, even when a light blue container was meticulously employed. My history includes frequent hemolysis of blood samples, which has increased notably in recent times. Additionally, I have suffered two miscarriages linked to gestational sac hematomas occurring at around three weeks of pregnancy. Recently, it was suggested that I might be dealing with an overlap syndrome related to my conditions. Autoimmune markers have been concerning too, with an ANA level of 1:1260 and a positive HLA-B25 variant after extensive investigations, yet no definitive conclusions have been reached. I have also dealt with elevated levels of WBC, SCRP, BUN, urea, creatinine, ALT, and fibrinogen. These fluctuations remain unexplained despite various tests. Recently, I completed a course of Nitrofurantoin, but over the last three months, I’ve been prescribed multiple antibiotics including trimethoprim, cefalexin, and vancomycin, among others. My battle with a long-standing E. coli infection—ongoing for around three years—has made me increasingly unwell, leading to gastrointestinal issues that have evolved into digestive distress, persistent epigastric pain post-meals, and now, troubling visual disturbances. Worryingly, this infection appears to be affecting my kidneys, resulting in noticeable declines in their function. I’ve been hospitalized 37 times since this E. coli infection began, aggravating my existing chronic connective tissue ailment and mast cell disease. Recent tests have confirmed a substantial E. coli infection, yet the hospital tends to misinterpret this as a urinary tract issue, although I don’t exhibit urinary symptoms like pain or frequency. I suspect this infection might originate from an oral fistula linking my maxillary sinus to my mouth, due to an unfinished root canal that has developed an abscess above the tooth. This formation is asymptomatic and has not prompted me to seek treatment, but I have learned that oral bacteria can enter the bloodstream and lead to such complications. My health is deteriorating; the E. coli strain now shows dual resistance to AMCB and ESBL. I feel trapped as my primary care physician has done what she can, but continual courses of antibiotics have failed to resolve the situation. My eGFR has fallen to nearly 60 from over 90, and there are additional concerns regarding an unidentified autoimmune disease—potentially stifled by this ongoing infection. I’m reaching out for guidance regarding infectious disease management. What steps should I take next? The hospital has informed me about the resistant strain but merely suggested further oral antibiotics, which I have been on incessantly for months, alongside several IV treatments. Unfortunately, these interventions don’t address the core issue, which is consistently misrepresented as a urinary infection. Additionally, my underlying mast cell disorder complicates my treatment, as I’ve become resistant to antibiotics. It would be beneficial to connect with a specialist who can adequately address this issue, especially since the bacterium was detected in my urine, where it may be thriving. Given that there’s also evidence of bladder infection, it feels as though the E. coli is permeating throughout my body. As a 37-year-old, I find myself bedridden and feeling worse than I ever have. How can I advocate for myself effectively to receive the appropriate treatment? The hospital appears to overlook the gravity of my situation, allowing me to live with this infection for years while treating only its superficial aspects. I desperately need assistance and support to address this critical matter.
Answers (1)
3/4/2026, 3:10:48 AM
OpenHealth AI
I'm truly sorry to hear about the complex and challenging health situation you're facing. It’s understandable that you're feeling overwhelmed, given the multitude of symptoms and concerns regarding your health. Let's focus on your immediate needs and prioritize actionable steps you can take to advocate for yourself effectively.
Summary of Main Points
- Persistent E. coli infection is complicating your health, with resistance to multiple antibiotics.
- You’re experiencing various symptoms, including malnutrition, declining kidney function, and possible autoimmune issues.
- Effective self-advocacy and engagement with specialists are crucial for addressing your ongoing health problems.
Explanation
Your situation involves a resistant E. coli infection and a potential autoimmune overlap syndrome, which is further complicated by malnutrition and declining kidney function. It sounds like your current treatment plan hasn't been effective, and that’s understandably frustrating. It's essential to focus on strategies to improve your care pathway, considering your unique circumstances, including the potential abscess from your incomplete dental work that might be a source of ongoing infection.
Next Steps
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Document Everything:
- Keep a detailed log of your symptoms, medications, and any changes in your health. This can include daily notes on your energy levels, pain, gastrointestinal issues, and any visual disturbances. This record will be a powerful tool when speaking with healthcare professionals.
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Engage with a Specialist:
- Seek out an Infectious Disease specialist who has experience with resistant infections and autoimmune diseases. Request a referral from your primary care physician explicitly stating your long history and current complications with antibiotic resistance.
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Dental Evaluation:
- Schedule an evaluation with a dentist experienced in treating complex dental issues. Discuss your concerns regarding the possible oral fistula and abscess, as addressing this could be crucial in resolving your E. coli infection.
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Advocate for Comprehensive Tests:
- Ask for comprehensive lab tests to evaluate your kidney function more closely and to look for any underlying autoimmunity. Since your autoimmune markers are concerning, consider discussing potential treatments that can help manage both your autoimmune symptoms and chronic infection.
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Nutritional Support:
- Given your malnutrition and vitamin deficiencies, consult with a registered dietitian who can help you develop an appropriate diet plan that meets your nutritional needs. This support can also complement any supplementation you're currently taking.
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Seek a Multidisciplinary Approach:
- Consider advocating for a multi-specialty team approach involving an infectious disease expert, a nephrologist for kidney management, and a rheumatologist for autoimmune issues. Having a coordinated effort can lead to a more comprehensive treatment plan.
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Communicate Your Concerns Clearly:
- When speaking with your healthcare providers, clearly express your overall concerns about both your physical health and quality of life. Use the logs you’ve kept to illustrate the impact of your symptoms on your daily life.
In Closing
It's crucial to remain proactive and persistent in advocating for yourself. By taking these steps, you can foster more effective communication with healthcare providers and hopefully lead to a more tailored and effective treatment plan. Remember, you're not alone in this, and seeking support from friends, family, or support groups can also be beneficial for your emotional wellbeing during such a challenging time.
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