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:
- You have a history of Lyme disease and other tick-borne illnesses, which can lead to a variety of persistent and overlapping symptoms.
- The symptoms you describe—including cognitive issues, fatigue, and joint pain—could suggest multiple potential diagnoses.
- 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:
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
Related Questions
Assessing My Health Concerns: How Anxious Should I Be?
I’m a 32-year-old woman, weighing 124 pounds and standing at 5 feet 6 inches tall. For over a year, I have been experiencing bright red rectal bleeding. Initially, I attributed this issue to hemorrhoids that developed during my pregnancy two years ago. The bleeding occurs with most of my bowel movements, sometimes happens without one, and on a few occasions, has been enough to stain the toilet bowl significantly. The color of the blood is typically darker than what I observe during a hemorrhoid flare-up. There is a notable family history of bowel cancer on both sides; one family member was diagnosed at age 45, and another at 60. In the past six months, I have encountered several episodes of severe abdominal pain—3 to 4 instances—intense enough to consider a trip to the emergency room. However, the pain usually subsides within about an hour. It’s unusual for me to experience such acute pain, given my high tolerance for discomfort; for example, I once played rugby shortly after dislocating and fracturing my finger. Recently, I mustered the courage to consult with my doctor, who recommended a FIT test, which returned a positive result (30.1). Additionally, I underwent a complete blood test, and aside from having low ferritin levels (7 µg/L), all other results were normal. I have since been referred for a colonoscopy on a two-week waiting list to rule out any possible bowel cancer. Given these circumstances, how concerned should I be? Thank you for your input.
Understanding Possible Seizure Triggers and Recurrence Risks
Health Background: I am a 21-year-old female, standing at 169 cm and weighing 65 kg. Over the past three years, I have been using oral contraceptives. As of this morning, I started taking 25 mcg of levothyroxine along with a weekly vitamin D supplement of 0.266 mg. Recently, I was diagnosed with hypothyroidism and found to have a vitamin D deficiency that I suspect has existed for the last three years. I do not consume alcohol or smoke, and I can confirm I am not pregnant. Two years ago, I experienced a mild concussion. I currently reside in Spain. A couple of months back, in mid-December, I blacked out twice. The second occurrence took place while I was at the doctor’s office after seeking urgent medical care for the initial incident. Following the second episode, I underwent a CT scan and an EKG, both of which returned normal results. Further tests, as directed by my physician, revealed a critical vitamin D deficiency and hypothyroidism; however, he expressed doubt that either of these conditions led to my loss of consciousness. I was then referred to a neurologist, and I am presently awaiting an appointment. Although the waiting period is lengthy, my doctor indicated that I should receive priority for scheduling, although the exact timeframe remains uncertain. The referral document summarized my events, labeling the second episode (which the physician witnessed) as a potential seizure devoid of tonic-clonic movements—a revelation that took me by surprise. After regaining consciousness, I felt extremely disoriented and terrified, struggling to process what was happening. I have no prior history of seizures, epilepsy, or any related conditions, and there is no known family history of these issues. If this indeed was a seizure, what might have triggered it? Additionally, what is the likelihood of experiencing another one? Since that time, I have not had any further incidents, but I have experienced moments where I felt a sense of impending doom, which I managed to overcome. I intend to wait for the neurologist's evaluation, but the uncertainty surrounding a possible neurological condition is quite distressing. Thank you for any insight you can provide!
Persistent Pain in Right Shoulder and Arm After Lifting
Hello, everyone! I’m a 23-year-old male and have been engaged in weightlifting for several years now. Recently, I’ve been struggling with ongoing discomfort in my right shoulder and arm, which I haven’t been able to accurately identify. The pain manifests during particular movements, especially with lateral raises or when my arm is raised to shoulder level while rotating my wrist. Certain pressing and pulling activities can also provoke this discomfort. Rather than feeling sharp, it’s a deep, nagging sensation that sometimes seems localized in the front area of the shoulder or at the biceps tendon, and at other times it feels more like it’s situated between the shoulder and upper arm. Fortunately, there’s no numbness or tingling involved. This issue began while I was working out. I decided to take a break for around two months, but when I returned, the pain persisted. After consulting a physician, I was diagnosed with bicipital tendinitis. Since then, I’ve reduced my upper-body workouts, completely steering clear of shoulder exercises and heavy lifting, and have begun a gentle rehabilitation regimen focusing on external rotations, pendulum movements, and scapular exercises. Despite adhering to this routine for about a week, I haven’t experienced any noticeable improvement. Is it typical for this type of tendon injury to require an extended period for recovery? At what point should I consider diagnostic imaging, such as an ultrasound or MRI? Additionally, are there frequent rehabilitation errors that might impede the healing process? I appreciate your insights in advance!
Understanding EEG Results for My 22-Month-Old Son: Insights Needed
Could someone help clarify this for me? My son, who is just 22 months old, hasn’t started walking yet, becomes tired easily, and has been experiencing behavioral outbursts. He had a febrile seizure in February 2025, followed by another unexplained seizure in April 2025, which led us to consult a neurologist. Since he was 3 months old, he has been receiving therapy from a physical therapist for torticollis. At birth, he spent five days in the NICU due to issues with meconium aspiration. A recent MRI showed normal results, and he also had a follow-up EEG after one conducted in July 2025. The results from this recent EEG were abnormal for a pediatric patient in awake, drowsy, and sleeping states. Notably, there were brief episodes of left frontotemporal delta slowing, which occurred mainly when he was awake and drowsy. There were no signs of epileptiform activity detected. In contrast, the EEG performed back on July 3, 2025, was deemed normal for both awake and drowsy states, again with no evidence of epileptiform irregularities, although it did not capture any sleep data. This examination was prompted by the child's existing history of febrile seizures. Importantly, he is not currently on any anti-seizure medications. The EEG procedure used standard electrode placements per the 10-20 system, conducted a single-lead EKG, and included continuous video monitoring. During the analysis, the background activity was symmetric, indicating some anterior-posterior (AP) organization, with a dominant rhythm of 50-80 microvolts at 7 Hz. His drowsy state was marked by a reduced amount of eye blink activity, less breathing motion interference, and a generalized slowing in theta/delta frequencies. Stage II sleep exhibited spindles and vertex waves patterns. Additionally, there were intermittent bursts of 250-300 microvolts in the left frontotemporal region with semi-rhythmic activity of 2-4 Hz, mostly observed during wakefulness and drowsiness. No definitive epileptiform discharge was noted. Photic stimulation during the test did not elicit a strong response, and hyperventilation was not conducted during this session.
28-Year-Old Male Experiencing Scalp Sensations Post-Amitriptyline Treatment
I am a 28-year-old man in generally good health, without any cardiac concerns. Approximately a month ago, I encountered intense pain localized to one side of my head, which was unresponsive to paracetamol. However, a single dose of a migraine treatment provided substantial relief. Following that, I began a regimen of amitriptyline, starting at a nightly dose of 10 to 25 mg. While my head pain has diminished significantly—by about 90 to 95%—I now experience occasional uncomfortable sensations on my scalp. These feelings include pins and needles, a cooling sensation, and some crawling feelings near my hairline and ears. There are fleeting moments where I feel brief throbs lasting a second, but I do not have any persistent headaches. To clarify, I do not experience any of the following: - Nausea - Weakness in my limbs - Numbness - Changes in my vision - Coordination difficulties - Seizures The symptoms I have are transient, shifting around and often intensifying when I become conscious of them or as the day progresses. I would like to know: Is it common to experience these sensations during the recovery stage following episodes of neuralgia or migraine-like discomfort? Additionally, could the amitriptyline potentially be causing these temporary paresthetic sensations? I am seeking some reassurance or advice on what is typically observed during this healing process. Thank you.