Concerns Over Health Diagnosis: Chronic Lyme or HSD/hEDS?
My girlfriend, who is 22 years old, and her parents firmly believe that she is suffering from chronic Lyme disease, accompanied by co-infections like bartonella and babesia. Initially, I supported this belief, but with my growing doubts after researching, I find myself questioning it. For the past five years, she has dedicated significant time and financial resources toward treatments that seem to be detrimental to her well-being, including prolonged antibiotic use. She often attributes her discomfort to "herxing", claiming it signifies the die-off of harmful bacteria. When she experiences relief, it’s a sign of progress, but when she feels ill, it’s brushed off as merely a part of the process. Her current regimen, prescribed by her Lyme-literate doctor, includes: - Methylene Blue - Ivermectin - Tafenoquine - Various oral antibiotics - Herbal supplements - Craniosacral therapy (results vary significantly for her) - Chiropractic adjustments One thing to note is that she has never had a classic symptom like a tick bite or the distinct red bullseye but has suffered from migraines since middle school. As I delve deeper into her symptoms, I’ve stumbled upon hypermobile spectrum disorders, specifically hypermobile Ehlers-Danlos syndrome (hEDS), which may explain her condition more accurately. Here is a summary of her symptoms: - **Gastrointestinal Issues**: Diagnosed with celiac disease, she has difficulty consuming red meat and dairy due to bloating and cramping, which surprisingly occur even with restrictions in place. - **Easy Bruising**: She frequently discovers unexplained bruises on her legs and has mentioned struggling with anemia, which might be contributing to this issue. Despite some stretch marks around her hips and a slight atrophic scar from a childhood injury, her skin appears quite normal. - **Joint Problems**: At only 22, she has undergone surgery for a peroneal tendon subluxation following a sports injury and a subsequent procedure to reposition her kneecap. Post-surgery, she reported feeling worse, which might be linked to her POTS symptoms, though she has not experienced dislocations. Though she was quite active in her youth, there is a silver lining that she does not have widespread joint pain, rather stiffness in her neck and traps, which is common with POTS. - **Mild Hypermobility**: While never overly flexible as a child, physical therapists noted some hypermobility during her recovery from surgeries. Curiously, she insists that her hypermobility only emerged after her Lyme diagnosis. - **POTS**: She has struggled with POTS since her high school years, which has significantly affected her life, rendering her bedridden for over a year. - **Chronic Migraines**: Frequent migraines have plagued her since her early teens. - **TMJ Issues**: She uses a nightguard for teeth grinding and had braces during her high school years. Remarkably, she has never had cavities. - **Mild Sleep Apnea**: She's undergone some symptoms of sleep apnea. - **Mast Cell Activation Syndrome (MCAS)**: She claims to have this condition, but I haven't observed much evidence apart from occasional elevated temperatures. To me, her profile aligns more closely with HSD or hEDS, yet she remains steadfast in her conviction that chronic Lyme is the root of her struggles. I am urging her to consult a specialist who can provide a different perspective and possibly initiate physical therapy; however, breaking through her mindset is proving a challenge. I'm genuinely concerned about the implications of hEDS, especially as it is a progressive condition with potential complications in pregnancy and possible inheritance in future children. Does her situation resonate with signs of HSD or hEDS? Are there any rational approaches or arguments I might employ to help her and her family reconsider the effectiveness of their current treatments and the validity of LLMD practices? Given that she has tests returning positive results from LLMDs, I'm seeking ways to refute that standpoint convincingly.
Answers (1)
3/25/2025, 11:41:05 PM
OpenHealth AI
Your concerns about your girlfriend's health are valid and reflect a deep care for her well-being. It appears that her medical journey has been complex, with both physical and emotional challenges related to her symptoms and treatments. Let's break down the key points to consider regarding her condition and possible approaches moving forward.
Summary of Key Points:
- Consideration of Diagnoses: Your girlfriend may exhibit symptoms more consistent with hypermobile spectrum disorders (HSD) or hypermobile Ehlers-Danlos syndrome (hEDS), rather than chronic Lyme disease.
- Current Treatment Concerns: The extensive treatment regimen she is following raises concerns, especially given her lack of classic Lyme symptoms and the possible ineffectiveness of her current approach.
- Need for Re-evaluation: A comprehensive re-evaluation of her symptoms by a specialist could be beneficial and may provide a clearer understanding of her health.
Explanation:
- Chronic Lyme Disease vs. hEDS: Chronic Lyme disease is typically associated with a history of tick exposure and characteristic symptoms (like the bullseye rash) that are not present in your girlfriend’s case. hEDS encompasses various issues, including joint problems, easy bruising, gastrointestinal issues, and fatigue—many of which she experiences. Fibromyalgia and POTS are also common in individuals with hEDS.
- Treatment Impact: The long-term use of antibiotics and various treatments without significant improvement can often lead to frustration and may have long-term health implications. The "herxing" phenomenon (temporary worsening of symptoms during treatment) is often debated and can mislead patients about the effectiveness of treatment.
Next Steps:
-
Encourage a Specialist Consultation: Suggesting a consultation with a rheumatologist or geneticist specializing in connective tissue disorders could provide clarity. These specialists can assess her symptoms through a different lens, potentially validating your concerns about hEDS.
-
Gather Information Together: Offer to research together about hEDS and its implications. Presenting information from reputable sources (e.g., Ehlers-Danlos Society, Mayo Clinic) might help bridge the understanding gap. Including success stories of patients treated under hEDS frameworks could resonate with her.
-
Symptom Tracking: Encourage her to keep a detailed diary of her symptoms, treatments, and responses over a few weeks. This record can be beneficial in discussions with a new healthcare provider. It may highlight trends that align more with hEDS than chronic Lyme.
-
Discussing Treatment Regimen: Raise questions about her current treatments. Encourage her to thoughtfully consider their efficacy and the lack of significant improvement over the years. It may be helpful to compare her current regimen against guidelines for hEDS management, which often includes physical therapy, pain management, and lifestyle modifications.
-
Address Emotional Health: Acknowledge the emotional aspect of being firm in her beliefs about Lyme disease. Discussing her feelings and fears related to her health may help her open up about the prospect of exploring new ideas regarding her diagnosis and treatment direction.
This conversation may be challenging, but approaching it with empathy and understanding will be crucial. Emphasize that your intentions stem from care and love for her well-being.
Related Questions
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.
INTENSE Spine Discomfort, Breathing Difficulties, Muscle Twitches, and Sweating
To elaborate on the situation mentioned in the title, I’ve been experiencing unusual muscle twitches and spasms for the past few days, along with some discomfort in my back. However, today, I felt an unexpected sharp pain shoot through my spine, which has left my legs feeling numb and made it impossible for me to sit up straight. Additionally, I’ve been dealing with cold sweats for the last hour and struggling to breathe properly. Perhaps I’m just overanalyzing things and it’s a common occurrence, but the intensity of the pain is overwhelming—it's truly unbearable. I’m shaking quite a bit, and unfortunately, my parents aren’t responding to my attempts to reach them for help. I have a history of a chronic heart condition and arthritis, yet I’ve never experienced pain this severe, especially in my spine. For context, I am nearly 15 years old and female. My current medications include pain relievers, anxiety medication, beta blockers, and some vitamins, though those specifics may not be particularly relevant. I don’t smoke; however, I have tried vaping a few times, which might not matter much, but I thought it was worth mentioning as it was requested.
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.
Concerns About My Toes
Age: 30, Female Currently, I am on the lookout for a reputable podiatrist in my vicinity. However, I've encountered a perplexing issue with my foot. Just last night, I noticed a growth on the side of my toe, something entirely new to me. I maintain a nutritious diet and have a demanding job that requires me to be on my feet quite often. My footwear includes brands such as Brooks Ghost Runners, Hoka Bondi 9’s, and Nike Motiva’s, and I don’t opt for restrictive socks. I also apply Vick’s Vaporub to my feet, a practice handed down from my family, and stick with simple, non-fragrant lotions like Vanicream and CeraVe SA Cream for my skin. In addition, I am curious about the my big toenail's change in color. What might be the underlying reasons for this? Also, I have these persistent dark spots on my toes that I've struggled with since my days on the runway. Despite my efforts, nothing has succeeded in lightening or diminishing their appearance. I'm just looking to determine if there might have been a factor from the past that could have contributed to these issues. I’m not sure what else to include, but I’m open to answering any questions you might have. Thank you for your attention! Best wishes from a worried soul!