Rediscovering Life: Taran's Journey with EDS, POTS, and Low-Dose Naltrexone

Taran from the United States shares her journey with Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS), which began in 2015 when she suddenly passed out at work, becoming bedridden for six months. Despite being very active beforehand, she was left confused and distressed. After researching online and consulting with a cardiologist, Taran received diagnoses for POTS and EDS. For several years, they underwent a trial-and-error approach to treatment. In September 2024, Taran's mother discovered low-dose naltrexone (LDN) as a potential treatment, leading Taran to a primary care physician specializing in EDS. Nervously, she started LDN at a low dose and experienced significant pain and fatigue relief within days. After finding their optimal dose at 4.5 mg, Taran described the medication as a life-changing experience.Reflecting on her childhood, Taran recalls having eczema, random rashes, and food sensitivities, which went unnoticed due to their active lifestyle. Overall, she express gratitude for LDN and its impact on managing her symptoms.

Barb from Canada shares her 26-year journey with fibromyalgia, which began with chronic pain and a lengthy struggle for a diagnosis. Initially, she explored various treatments, including conventional medications like Oxycontin and alternative therapies, but found limited relief. After learning about Low Dose Naltrexone (LDN) from the fibromyalgia community, she sought a doctor willing to prescribe it. After changing family doctors, Barb encountered a new physician who did not believe in fibromyalgia and refused to prescribe LDN. However, through the LDN Research Trust, she found a supportive doctor who offered remote consultations. Since starting LDN in April, Barb experienced remarkable improvements in energy and quality of life within three weeks, allowing her to engage in activities she had long avoided. Her transformation has surprised both her and her family, leading others to inquire about her treatment.

Deb from Australia shared her journey with rheumatoid arthritis, which she experienced for about four years before receiving a proper diagnosis. Initially, her GP attributed her chronic pain to other issues and suggested topical treatments. A physio at Nambbor General Hospital recognized her symptoms and referred her to a rheumatologist, who confirmed the diagnosis through blood tests and MRIs.Deb was prescribed methotrexate and folic acid but sought an alternative due to her desire for a healthier lifestyle. She turned to low-dose naltrexone (LDN) upon her integrative GP's recommendation. After starting on LDN, she experienced nausea and dizziness but persevered. Eventually, she reached a dose of 4.5 mg and became completely pain-free, significantly improving her quality of life.Deb expressed gratitude for LDN and noted feelings of euphoria and a boost in her overall health. Although her rheumatologist advised her to continue methotrexate for potential bone erosion, Deb felt fantastic on LDN and is looking forward to her next appointment. Additionally, she mentioned her background as a social worker, her previous burnout, and the possibility that autoimmune conditions run in her family.

Pamela from the United States shares her journey with hypermobile Ehlers-Danlos syndrome (hEDS) and mast cell activation syndrome (MCAS), detailing how Low Dose Naltrexone (LDN) transformed her quality of life.She recalls being frequently ill as a child with chronic sore throats, fevers, and unexplained rashes, treated repeatedly with antibiotics, which left her with long-term side effects. In adulthood, she experienced worsening joint pain, migraines, back and neck problems, and multiple orthopedic challenges, especially after childbirth and through menopause.After learning about LDN from Ehlers-Danlos support groups and a physiatrist, Pamela started treatment at 0.5 mg, later increasing to 3 mg. Initial side effects (constipation and nausea) subsided after two weeks, followed by significant improvements in pain levels, energy, and immune function—she hasn’t caught illnesses that previously plagued her.She describes a clear decline when she was off LDN for 11 days, reinforcing its benefits. Pamela now enjoys more stability, less pain, better post-menopause symptoms, and greater day-to-day functionality.Her advice: LDN is worth trying for chronic pain and autoimmune-related conditions, as it may improve both symptoms and general health with minimal side effects for most people.

Jannie, a 74-year-old from Canada, developed Complex Regional Pain Syndrome (CRPS) in 2016 after a severe foot injury and surgery. She began using Low Dose Naltrexone (LDN) after researching its benefits and, with her doctor’s support, became one of the first in her area to try it. LDN significantly reduced her nerve pain and allowed her to live an active life. After needing recent surgery to remove old hardware from her foot, her CRPS briefly returned when she had to stop LDN—but quickly improved once she restarted it. Janie encourages others with chronic pain to research, stay hopeful, and actively participate in their recovery.

Dr. Corey Rice, a former forensic scientist turned functional medicine physician, discussed his journey from solving crimes to treating patients by addressing root causes of illness. He sees adults of all ages, focusing on prevention and early detection through advanced blood work, gut microbiome analysis, autoimmune screening, and cancer liquid biopsies. His treatments begin with gut repair, nutrient repletion, and hormone balancing, sometimes using low-dose naltrexone (LDN) or peptides for immune modulation, regeneration, and anti-aging. He stresses personalized, proactive care and urges both doctors and patients to stay open-minded.

Shanika shares her long journey with autoimmune diseases, beginning with psoriasis in her youth. She highlights the challenges of managing symptoms and the struggle for a proper diagnosis. After years, she is diagnosed with sarcoidosis and finds relief through low dose naltrexone. As an advocate for LDN, she encourages others to explore this treatment and emphasizes the importance of self-advocacy in health management.

Sue from South Africa shared her experience with Ehlers-Danlos syndrome and multiple health challenges. Although she was diagnosed with Ehlers-Danlos syndrome only six years ago, she described being a fragile child with several physical abnormalities that went unnoticed by doctors. These included an indented sternum and a skin issue at the base of her spine. Growing up, she struggled with physical activities and faced bullying due to her abilities, which contributed to her emotional distress.Her health challenges continued into adolescence, exacerbated by a severe dog bite that led to post-traumatic stress disorder (PTSD), which was not recognized at the time. During her teenage years, she also battled insomnia, anxiety, and depression. Sue developed Lyme disease after a hiking trip, which led to chronic fatigue syndrome (ME/CFS) and other health issues linked to Ehlers-Danlos syndrome.Despite her struggles, Sue pursued education, ultimately earning degrees in psychology. Throughout her journey, she has become more aware of her physical and psychological challenges, working to advocate for herself and understand her conditions better.

Donna, from the United States, shares her journey with multiple sclerosis (MS), which she was diagnosed with in 1992 at the Mayo Clinic in Florida. Initially, she experienced symptoms like fatigue and tingling sensations, but it took time to identify the issue. After trying conventional MS medications and feeling worse, she decided to stop them and manage her condition independently.Her husband learned about low-dose Naltrexone (LDN) through an investment opportunity for its FDA approval. Skeptical at first, Donna reluctantly started taking LDN and experienced significant improvement in her condition after three months, feeling more energized and motivated. They sought a doctor who could prescribe LDN and found a compounding pharmacy that supplied it.After 27 years of LDN use, Donna noticed that skipping the medication led to a return of some symptoms, though they remained manageable. She continues to lead an active life, having run a nonprofit scholarship organization for 15 years, and credits LDN for her well-being despite occasional relapses. Now nearing 74, she remains busy and resilient.

In this radio interview, pharmacist Dr. Megan Kilkeary shared insights about her extensive experience in compounding, particularly with low-dose naltrexone (LDN). With nearly 20 years of experience in pharmacy, Dr. Kilary emphasized the importance of high-quality compounding, noting that her pharmacy offers LDN in various forms, including tablets, liquids, topical creams, and sublingual options. The most popular dosage is 4.5 mg tablets, which are designed for easy titration. She also highlighted the pharmacy's commitment to potency testing, ensuring that patients receive consistent dosages.For patients interested in microdosing, especially those looking to taper off opioid therapy or manage addiction issues, a liquid form of LDN is available. Dr. Kilkeary mentioned the topical application of LDN, which shows promise for skin conditions like psoriasis and eczema but recommended oral forms for systemic effects. The conversation also touched upon the benefits of sublingual administration, which bypasses first-pass metabolism in the liver, potentially increasing medication availability. Overall, Dr. Kilkeary's focus is on providing patients with effective, high-quality compounded LDN to address various health conditions.Strive Pharmacy are flipping the script with personal medicine the human element is their crux and catalyst driving all that they do whether interacting with patients providers or practices they are more than a compounding pharmacy they're on a mission to positively disrupt health care as we know it.