Navigating Autoimmunity Concerns Without Medication: Seeking Options
I’m currently on 5-10mg of nadolol for my postural orthostatic tachycardia syndrome (POTS) and dealing with a significant health challenge. I've tested positive for antiphospholipid syndrome (APS) antibodies—my results are notably elevated and have tripled in frequency. Additionally, I have dsDNA and anti-CCP antibodies. I suspect that these conditions emerged after my COVID-19 infection, suggesting a breakdown in my body's peripheral tolerance that must be addressed. While hydroxychloroquine (HCQ) seems like a logical treatment option, my rheumatologist has declined it due to my QT interval measuring around 460. My situation appears to be deteriorating, and with the APS, I am at heightened risk of clotting if left untreated, especially as my symptoms worsen. At this point, my quality of life is significantly compromised. I often find myself bedridden for one to two weeks around the time of my menstrual cycle, which feels incredibly frustrating. Why isn’t more being done for my severe situation? On a daily basis, I endure pain, debilitating brain fog, neurological symptoms, and episodes of vertigo. While not all these issues are solely autoimmune in nature, the APS certainly contributes to them, causing microthrombosis, endothelial damage, and inflammation in the brain—a situation corroborated by the extreme endothelial inflammation visible in my NFC. I’m at UCSF and facing difficulties transferring to another rheumatologist. I am also exploring private clinics, but I’m concerned they will recommend similar approaches. I want to pursue a more aggressive treatment plan, as this current state of affairs is untenable, and focusing on my autoimmunity issues may yield some improvement. One specialist who deals with my overlap syndrome of long COVID, POTS, and APS charges $3,500 for a consultation, but I doubt that they will provide any fresh insights beyond suggesting HCQ. Why is it such an uphill battle to receive adequate care before I experience a clot or sustain organ damage?
Answers (1)
9/9/2025, 6:40:43 AM
OpenHealth AI
I understand that you are facing a complex and challenging health situation involving multiple conditions, including POTS and antiphospholipid syndrome (APS), along with debilitating symptoms. It’s clear that these issues have significantly impacted your quality of life and you are seeking effective management strategies.
Key Points:
- You have a collection of serious symptoms associated with APS and potential autoimmune issues.
- Current treatments are limited due to your heart’s QT interval concerns.
- You’re seeking more aggressive options and facing challenges navigating your care.
Explanation: Antiphospholipid syndrome can lead to increased clotting risks, and it’s understandable to feel concern over symptoms like brain fog and vertigo, which can be debilitating. The decline in your health following a COVID-19 infection points to the possibility of long-lasting effects on your immune system, further complicating the management of your conditions. While hydroxychloroquine is a common treatment for autoimmune conditions, concerns regarding your QT interval need to be taken seriously by your healthcare providers.
Your symptoms around your menstrual cycle may suggest a component of hormonal influence, which sometimes relates to autoimmune responses. It's crucial to work with your healthcare providers to find a treatment approach that balances safety with your urgent need for symptom relief.
Next Steps:
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Symptom Tracking: Begin a detailed symptom diary. Record the onset, duration, and intensity of your symptoms, any potential triggers (including dietary, environmental, and hormonal factors), and your current medications. This can provide valuable information for your healthcare professionals.
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Lifestyle Focus: Implement stress reduction techniques such as mindfulness, yoga, or gentle exercise as tolerated, which may help mitigate symptoms. Staying well-hydrated and eating a balanced diet rich in anti-inflammatory foods may also support your overall health.
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Explore Alternative Treatments: Discuss with your healthcare team other intervention options such as low-dose aspirin or potential anticoagulants that may be suitable given your cardiac concerns. This would directly address your clotting risk due to APS while respecting the limitations of your heart condition.
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Clinical Research and Trials: Research clinical trials or specialized programs focusing on APS and autoimmune diseases. These can provide access to cutting-edge treatments and support from knowledgeable specialists.
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Consulting a Specialist: While consulting a new rheumatologist or specialist may come with costs, consider reaching out to see if any institutions offer second opinions or programs focusing on complex autoimmune disorders.
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Communicating with Your Healthcare Team: Express the urgency of your situation to your healthcare providers, emphasizing how your symptoms impact your day-to-day life. Keeping an open dialogue may lead to new options or referrals for supportive therapies.
It is understandably frustrating to feel that progress is slow in your care. Remember that effective management of complex conditions often requires persistence, and maintaining clear communication with your providers will be key in advocating for your health.
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