OpenHealth Q&A

Seeking Answers for Ongoing Health Struggles

I find myself in urgent need of a proper diagnosis to achieve true relief rather than merely addressing symptoms. I’m unsure of the process, so I’ll outline my symptoms in hopes that someone might offer assistance. My health began to decline after experiencing a bullseye rash from a tick bite at the age of 17. I am a 36-year-old woman, standing 5 feet 8 inches tall and weighing 190 pounds. My medical history includes diagnoses of fibromyalgia, chronic Lyme disease, and migraines. Currently, I am taking several medications, including Emgality, Maxalt, Frovatriptan, Ambien, Benadryl, Midol, Zofran, and Phenergan, as needed. I experience daily headaches interspersed with occasional migraines. Additionally, I suffer from stomach cramps that might be related to IBS and persistent joint pain. Heat sensitivity has led to the emergence of a butterfly rash, which may trigger seizures that are not classified as epilepsy. Muscle weakness and sensations resembling growing pains are common, alongside the peculiar feeling of muscles vibrating or twitching simultaneously. I may be dealing with POTS, as I have an elevated heart rate believed to contribute to my seizures. Cognitive issues are increasingly concerning; I’m faced with memory lapses and persistent brain fog. I produce an excess of histamines and contend with debilitating fatigue. My neck’s range of motion is severely restricted, and I sometimes experience sharp, burning pain at the base of my skull. Typically, my body temperature hovers around 96.7 degrees Fahrenheit. My pupils are uneven and have unusual reactions to light. A spinal tap indicated the presence of MS, yet no lesions were found on my brain. Other findings include an empty sella, inflammation in the vein of my left temple and mastoid, and abnormal menstrual cycles often accompanied by ovarian cysts. Cognitive decline is a significant concern, and I might be facing Addison’s disease. My sleep patterns fluctuate between insomnia and excessive sleep. I have undergone treatment for Lyme and Rocky Mountain spotted fever, diagnosed seven years apart. The Lyme disease test was conducted several years after the appearance of my bullseye rash, while the RMSF diagnosis was incidental; although the infectious disease doctor stated it was caught early. I am acutely aware that I may be missing other symptoms, mainly due to memory challenges, and many of my issues tend to wax and wane. The neurological symptoms are particularly distressing and frequent, followed closely by joint pain. Unfortunately, my doctors seem to dismiss the possibility of any condition beyond migraines, despite my history of trials with multiple preventative and acute migraine medications. Most have adverse effects, but Maxalt occasionally provides relief, and I'm scheduled to start Botox treatments in three weeks. I long for my life to return to normal and seek to address the underlying causes rather than merely coping with symptoms. Currently, the only explanation offered is post-Lyme syndrome, with little hope for further action. Thank you in advance for any guidance or insights you can provide.

Answers (1)

6/28/2025, 5:01:16 AM

OpenHealth AI

It sounds like you are facing a complex array of symptoms that are deeply impacting your daily life, and it's understandable that you seek a path towards better diagnosis and relief. Your history of tick-borne diseases, combined with symptoms like cognitive issues, joint pain, and other neurological signs, indeed paints a challenging picture.

Key Points:

1. You have a history of Lyme disease and other tick-borne illnesses, which can lead to a variety of persistent and overlapping symptoms.
2. The symptoms you describe—including cognitive issues, fatigue, and joint pain—could suggest multiple potential diagnoses.
3. Your healthcare providers have attributed some of your issues to post-Lyme syndrome, but a broader investigation may still be warranted.

Explanation:

Your symptoms may stem from various overlapping conditions. Chronic Lyme disease, fibromyalgia, and potential complications such as POTS or even autoimmune disorders can manifest in similar ways. Cognitive problems (brain fog), unexplained fatigue, and unusual neurological signs (like muscle twitches and sensitivity to heat) can complicate your overall clinical picture.

Next Steps:

1. Symptom Tracking: Start keeping a detailed diary of your symptoms, noting their frequency, severity, and any potential triggers. This will be invaluable when discussing your case with specialists.

2. Consult a Specialist: While you have seen various doctors, it may be beneficial to seek a second opinion from healthcare providers who specialize in chronic diseases or complex cases—consider rheumatologists or neurologists with experience in post-infectious syndromes.

3. Comprehensive Testing: Beyond Lyme disease, ask about comprehensive autoimmune tests (like ANA, anti-dsDNA, and others) to rule out conditions such as lupus or other connective tissue diseases. Given your symptoms, it might also be worth discussing hormonal evaluations due to your menstrual irregularities and other related symptoms.

4. Lifestyle Modifications:

   • Hydration: Ensure you are well-hydrated, which can help with symptoms of POTS and reduce brain fog.
   • Diet Management: Given potential IBS symptoms, consider a food diary to identify any dietary triggers that worsen your gastrointestinal issues.
   • Gentle Exercise: Engage in gentle physical activity or physical therapy to help manage joint pain and muscle weakness while avoiding overexertion.

5. Mental Health Support: Given the emotional toll of chronic illness, consider incorporating stress-management techniques like mindfulness, therapy, or support groups, which can help with cognitive issues and emotional wellbeing.

6. Medication Review: Review your current medications with a pharmacist or a specialist to explore any potential interactions or side effects that could be contributing to your fatigue or cognitive issues.

Follow-Up:

As you navigate these steps, remember that you’re not alone, and it’s okay to seek out the support you need—both emotionally and medically. Regularly assess how your symptoms change with these approaches, and adjust your strategies accordingly. I truly hope you find a way to better health and peace.