I finally went to the ER Tuesday night. My WBC was high, so we knew I had an infection… but, the ER docs couldn’t find the source. So, they let me go home Tuesday night. But, Wednesday afternoon, I got the call that I had Pseudomonas in my blood cultures. So, I had to come back to the ER Wednesday night to get evaluated and admitted to the hospital. My Hickman was removed this morning, so I’m now just waiting a couple days to get a PICC line placed. I’ll have to do IV antibiotics at home when I leave the hospital. The oral antibiotics are contraindicated for people with EDS. (And I didn’t say anything, my ID doc just knew that. 👏 I love how much docs are learning about EDS 🥰 - this is the same ID doc I worked with in 2023) ❤️‍🩹

2025/11/28 Edited to

... Read moreLiving with Ehlers-Danlos Syndrome (EDS) can make recognizing and managing infections particularly challenging, as symptoms often overlap with chronic condition flare-ups. Bloodstream infections caused by bacteria like Pseudomonas aeruginosa require rapid and targeted treatment to prevent serious complications. This bacteria is known for being opportunistic and resistant to many antibiotics, so intravenous (IV) antibiotic therapy is critical for effective treatment. Patients with EDS have special considerations when it comes to antibiotic use. Oral antibiotics may be contraindicated due to side effects or interactions specific to their connective tissue disorder. This makes timely placement of a PICC (Peripherally Inserted Central Catheter) line essential, allowing long-term IV antibiotic administration at home safely and conveniently. Removing previously placed devices like a Hickman line helps reduce infection risk. It’s important for patients and caregivers to closely monitor symptoms such as fever, elevated white blood cell counts, and changes in fatigue or pain levels, distinguishing between infection signs and EDS flare symptoms. Collaboration with infectious disease specialists who understand the unique needs of EDS patients can significantly enhance outcomes, as seen by the proactive care coordination and knowledge shared by the involved medical team. If you or a loved one with EDS experience unexplained symptoms, don’t hesitate to seek emergency care for prompt evaluation and diagnosis. Early detection of bloodstream infections and adapting antibiotic treatments to the patient’s specific condition can save lives and improve quality of life. Educating yourself about infection risks and treatment options empowers better communication with healthcare providers and supports a smoother recovery process. Supporting those with chronic illnesses like EDS means acknowledging how infections can mimic their symptoms and appreciating the specialized care required to manage these complex health challenges.

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