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:
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
Related Questions
Seeking Insights: My Journey with Undiagnosed Neurological Symptoms
Hello everyone, I'm a 34-year-old female grappling with neurological symptoms that first appeared in October, and I’m eager to hear from anyone who might have faced similar challenges. My journey began with unexpected migraines, blurred vision, and an ongoing sensation of being off-balance or intoxicated. Gradually, I began experiencing mainly sensory-related symptoms, such as tingling and burning sensations, feelings of extreme heat and cold, sharp pains radiating in my arms and back, as well as discomfort in my hands and toes, alongside intermittent numbness. I also endure varying degrees of weakness and heaviness in my right side, specifically my arm and leg, although I haven’t suffered complete functional loss. The nature of my symptoms is erratic; they fluctuate rather than consistently deteriorate. An MRI revealed mild, scattered lesions in the white matter, which were deemed nonspecific. Further tests from a lumbar puncture returned normal results, showing no markers of inflammation, and the oligoclonal bands were not present. A thorough range of lab tests yielded no significant findings. After evaluating my case, the neurology team suggested a possible diagnosis of MS and administered a three-day course of intravenous steroids. While I noticed a slight improvement in some sensory pain, my symptoms persist and continue to vary day by day. I still experience headaches and pressure in my head along with episodes of blurred vision, but there have been no new deficits since treatment. I am reaching out to connect with others who have had similar experiences. I would like to learn about the insights or diagnoses you encountered and what treatments proved beneficial (such as those related to migraine disorders, dysautonomia, or sensory neuropathy, for example). If you have navigated a similar path, I would greatly appreciate your sharing your story. Thank you!
Should I Seek Medical Attention for Left Ear Pulsatile Tinnitus?
A 31-year-old woman reports an ongoing issue with pulsatile tinnitus, which she is currently experiencing solely in her left ear. Although she's noticed this condition intermittently before, she hadn’t paid it much mind due to the absence of pain. Recently, however, her curiosity piqued her interest in researching the condition, where she stumbled upon information suggesting it could be serious. Usually, she avoids searching online for health worries, but now she is contemplating whether a visit to the doctor might be warranted. Can anyone advise on the need for a medical evaluation in this case?
Concerns About Angular Cheilitis
I’m a 23-year-old woman with no history of smoking, and I’m seeking assistance regarding a health issue. Back in January, I experienced angular cheilitis three times, each episode involving a minor crack at the corner of my mouth that healed within a few days. Following the last occurrence, I became quite anxious due to saliva accumulation in that area. I found myself frequently brushing my finger along that spot. After a few days, I observed a small area forming that appeared white and had a rough texture. Eventually, I realized it was not just a coincidence, and I started taking action, but only after it became noticeably larger. To address it, I cleaned the area with a mix of alcohol and apple cider vinegar. I’m uncertain about what this issue could be, but I’ve recently begun using over-the-counter Clotrimazole cream while also keeping the area moisturized with either lanolin or petroleum jelly. Unfortunately, I haven’t noticed any improvement, and I’m concerned as it seems to be expanding. The patch continues to be rough and excessively dry. Although I can open my mouth wide without any cracks forming, I do feel tension in the skin, similar to having a bandage over that location. At times, I experience a burning sensation after thorough washing, and I’ve noticed tiny red spots appearing on the outer edges of the patch sporadically.
Unusual Heart Sensation
I’m an 18-year-old, weighing 50 kilograms and standing at 170 centimeters (and yes, I’m aware that I’m quite slender). For the past couple of years, I’ve developed a habit of smoking about half a pack of cigarettes each day. So, the other day I was lying on my left side, relaxing, when I stumbled upon an unusual sensation. It felt as though my heart was pulsating so intensely that it was almost outside my body. Out of curiosity, I pressed a bit on the area and was instantly hit with a rush; my head started to tingle, my vision momentarily blurred, and it felt as though my heart dropped. It was as if my entire system had malfunctioned. Just for context, I’ve experienced something similar before after a ketamine overdose, and it persisted for about a month afterward, occurring occasionally while trying to sleep or during random moments in bed. This current episode has me quite anxious, especially since it hasn’t happened in a while, but this time felt particularly alarming.
Mass on the Glottis
Patient Details: 63-year-old male, height 165 cm, weight 66 kg, Asian descent. Lifestyle Factors: No history of smoking or alcohol consumption. Medical History: Diagnosed with asthma and angina. Current Medications: Uses a Symbicort inhaler and takes Concor tablets. Main Concern: A mass was detected during a gastroendoscopy carried out a year ago. There is no report of pain, but the patient experiences mild hoarseness. What might be the diagnosis?