OpenHealth Q&A

Seeking Guidance on Unexplained Interstitial Lung Disease

I’m in search of assistance regarding a perplexing health issue affecting my mother. If this forum isn’t suitable for this topic, I would greatly appreciate guidance on where else to post this. My mother, who is 55 years old and previously healthy, has recently been diagnosed with Interstitial Lung Disease. Her symptoms emerged suddenly in August 2022, without any preceding health problems. Since that time, she has been under the care of pulmonologists. Currently, she exhibits ground-glass opacities in her lungs and suffers from persistent, severe coughing. Despite undergoing a biopsy, the pathology report did not reveal any definitive conclusions about her condition, and tests showed no evidence of fungal or mold growth. Unfortunately, treatments with steroids have not yielded positive results, and after two years of various interventions, her health remains unchanged. Blood tests, brain scans, CT scans, and X-rays have all returned normal results. Recently, she has been hospitalized for a week, receiving IV steroids but continues to experience very low oxygen levels, with no improvement to show from the steroid therapy; her oxygen saturation has only stabilized with supplemental oxygen. There are days where she feels relatively better, only to wake up the following morning struggling to breathe. Simple tasks such as walking to another room or engaging in conversation can lead her into severe coughing spells. She frequently experiences bouts of pneumonia and exhibits random wheezing, resembling gasp-like breaths, on a regular basis. The medical team has categorized her condition as interstitial lung disease but remains uncertain about the source of the inflammation or how to address her symptoms effectively. Their primary approach has been to prescribe steroids, alongside a non-effective inhaler. Progress has been elusive; she is not showing signs of recovery, and no clear answers have emerged. Interestingly, her symptoms began just one week after receiving the COVID-19 booster shot, and there are reports suggesting that others may have developed similar conditions within days after the vaccination. Additionally, these symptoms manifested shortly after we relocated to a new home. Initially, her symptoms were sporadic, rather than constant. I live in the same house with my brother, and neither of us are experiencing any related symptoms, making it difficult to determine if this could be linked to environmental factors, such as mold or fungi. We are reaching out for assistance; we are exploring all potential explanations, including whether the COVID vaccine could have any relevance to her condition. If you know of any medical professionals involved in research regarding Interstitial Lung Disease or possible side effects related to the COVID vaccine, or if you have encountered a similar case, we would be grateful for any information or leads that could aid us in finding help for her situation.

Answers (1)

8/29/2025, 12:06:14 AM

OpenHealth AI

I'm sorry to hear about the challenges your mother is facing with her diagnosis of Interstitial Lung Disease (ILD). It sounds like a difficult situation for both her and your family. While I cannot provide a definitive diagnosis or treatment plan, I can suggest some steps and considerations that might help you navigate this situation effectively.

Main Points:

1. Ongoing Evaluation by Specialists is Crucial.
2. Consider Environmental Factors.
3. Explore Multidisciplinary Approaches.

Explanation:

Interstitial Lung Disease encompasses a wide range of lung disorders that cause scarring (fibrosis) in the lungs, leading to breathing difficulties and low oxygen levels. Given that your mother's case is complicated by unclear results from tests and ineffective treatments, it’s important to continue seeking answers and management strategies.

The symptoms appearing shortly after the COVID-19 booster and your recent relocation might warrant investigation into environmental exposures. However, establishing causation can be challenging, especially since you mentioned that no other family members are experiencing symptoms.

Next Steps:

1. Consult with a Pulmonary Specialist with Focus on ILD:

   • Seek out specialists at reputable medical centers or universities that have dedicated ILD programs. They may have access to clinical trials or advanced diagnostic tests that could yield useful insights.

2. Environmental Evaluation:

   • Consider having the new home thoroughly evaluated for mold, allergens, or other irritants. Professional environmental assessments may help identify potential triggers.

3. Research Relevant Conditions:

   • Investigate the latest studies and resources regarding vaccine side effects in relation to lung issues. The CDC and WHO periodically update their guidelines; keeping abreast of this information might provide leads.

4. Adaptive Measures for Daily Living:

   • To manage her symptoms, ensure she is using supplemental oxygen as prescribed, and consider respiratory physiotherapy or breathing exercises to improve her lung function and manage cough.

5. Symptom and Care Diary:

   • Keep a detailed record of her symptoms, including timings, triggers, and any potential correlations with activities or environments. Sharing this with her healthcare team could help in tailoring her treatment plan.

6. Seek Support Groups:

   • Connecting with support groups for individuals with ILD might provide emotional support as well as practical tips from others facing similar challenges.

As you navigate these steps, please remember that you are not alone in this. It's important for you and your mother to advocate for her health and seek comprehensive care. If there's anything else you need, feel free to reach out.