Episodes
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Judith, hailing from the United States, delved into the intricacies of navigating familial medical challenges associated with Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). She candidly shared her personal journey of grappling with joint pain and instability stemming from EDS, while also shedding light on the diverse array of symptoms experienced by her children, including gastrointestinal issues, scoliosis, mast cell problems, and POTS. Of particular note were the severe manifestations experienced by Judith's middle child, encompassing convulsive syncope and migraines. Overcoming the hurdles of obtaining accurate diagnoses, Judith sought solace in the expertise of specialists, subsequently finding some respite through a combination of tailored medications and therapeutic interventions.
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Dixie, shares her experiences living with multiple chronic conditions, including MCAS and EDS. She discusses her struggles with various symptoms, such as food sensitivities, skin rashes, environmental allergies, headaches, gut issues, and fatigue. Dixie also reflects on the challenges of getting accurate diagnoses and managing her complex symptoms. Overall, the interview provides valuable insights into the daily realities of living with overlapping chronic conditions and their impact on a person's life.
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Episodes manquant?
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Today, I'd like to share the inspiring story of Shelby, a brave individual from the United States who has been dealing with multiple chronic illnesses for over a decade. Shelby's journey began 11 years ago when she started experiencing a mysterious illness that left her constantly sick and seeking answers from various medical professionals.
Her health struggles led to the diagnosis of chronic active Epstein-Barr virus, which subsequently triggered a cascade of autoimmune issues and multiple chronic illnesses. Despite facing numerous hospital visits and consultations with different doctors, finding effective treatment and receiving a proper understanding of her condition proved to be a challenging and frustrating experience for Shelby.
After years of uncertainty, Shelby was eventually diagnosed with mast cell activation syndrome (MCAS), a condition that was previously unknown to her and many healthcare providers she encountered. The lack of awareness and understanding of MCAS among medical professionals often left Shelby feeling isolated and misunderstood, with few options for appropriate care.
Shelby's perseverance led her to seek out specialized medical professionals, including a functional medicine doctor and a gastroenterologist, who were instrumental in guiding her towards the right treatment. One of the key therapies that significantly improved Shelby's quality of life was low-dose naltrexone (LDN), which helped balance her immune system and manage the symptoms of MCAS and other autoimmune conditions.
Before finding the right treatment and healthcare support, Shelby's daily life was severely impacted by her illnesses. As a high school junior, she was forced to discontinue her education due to the debilitating symptoms that left her bedridden and unable to carry out simple daily activities. From experiencing severe pain, muscle weakness, and constant nausea to enduring hospitalizations and drastic weight loss, Shelby's journey was filled with immense physical and emotional challenges.
Despite the hardships she faced, Shelby's resilience and determination shone through as she sought to raise awareness about MCAS and other underrecognized chronic illnesses. By sharing her experiences and advocating for a greater understanding of these conditions, Shelby aims to create a more supportive and informed community for individuals struggling with similar health challenges.
Shelby's story reminds us of the importance of empathy, awareness, and access to comprehensive care for individuals navigating complex chronic illnesses. Her journey reflects the ongoing need for increased education and recognition of conditions like MCAS, offering hope to those who often feel unseen and unheard within the healthcare system.
In conclusion, Shelby's unwavering spirit and commitment to spreading awareness about multiple chronic illnesses exemplify the resilience and strength of individuals facing similar health battles. Her journey is a testament to the power of advocacy, community support, and the pursuit of specialized care in navigating the complexities of chronic health conditions.
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An interview with Teresa, who has been dealing with multiple health issues,
including mold and hormone problems. Teresa's symptoms were severe, and she had
been struggling with them for over two years. When she was at her sickest,
Teresa had histamine intolerance, gut problems, and neuroinflammation. She also
experienced hot flushed red faces whenever she worked out, endometriosis-type
symptoms, diarrhea, increased heart rate, weakness, and jumbled thoughts.
Teresa sought help from multiple doctors
but found no relief. She had to go to functional medicine and naturopathic
medicine to get the help she needed. The doctors prescribed her supplements,
herbs, and homeopathics, among other treatments, to improve her health.
However, it took her some time to feel better despite adopting a healthy
lifestyle and following protocols. She learned about how to eat properly, take
care of her mitochondria, and improve her nervous system and relaxation through
meditation.
Teresa describes her typical day when she
was at her sickest, and it is a poignant story. She would wake up feeling either
nauseous or sweating and had to move her bowels frequently. Within two hours of
waking up, her heart rate would increase, and she would feel weak, forcing her
to sit down. Teresa had to work as an online therapist and tried to see clients
despite feeling unwell. She couldn't be around intense smells, go outside, or
eat without feeling sick or nauseous. Her life was limited, and she was
essentially homebound.
It wasn't until Teresa started taking LDN
that things started to improve drastically. Her functional medicine doctor
prescribed her LDN, which was initially a source of hesitation for her.
However, as she saw her roommate getting better after taking LDN, Teresa
decided to give it a try. LDN is a promising treatment option that has been
used for various health conditions, including autoimmune diseases, chronic
pain, and cancer. It works by boosting the body's natural immune response,
reducing inflammation and pain.
Teresa's LDN treatment was a turning point,
and she started to feel better. She felt less sensitive to smells and was able
to tolerate more foods. She started to gain weight, have more energy, and
exercise again. It took her a while to feel better completely, but LDN was the
key that unlocked her health. It is a testament to the power of functional
medicine and the importance of finding the right treatment for each person's
unique health condition.
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In this interview, Linda has the pleasure of speaking with
Kelly, a guest from the United States who shares her journey of dealing with
MCAS and POTS. Kelly discusses how she first noticed that something was wrong
with her body when she was a child due to severe GI symptoms, which led to her
receiving her first colonoscopy at the age of ten. However, despite years of
experiencing worsening symptoms, Kelly did not receive a formal diagnosis until
2019. She describes her frustration and the challenges she faced while seeking
answers from various specialists, highlighting the systemic factors within the
healthcare system that make it difficult for patients like herself to receive
proper care. As a social worker and a patient herself, Kelly provides unique
insights into how care for undiagnosed patients could be improved, emphasizing
the importance of physicians believing and trusting their patients, providing
them with resources, and access to care to help them find accurate diagnoses.
Kelly also discusses the complexity of MCAS, a multi-system disorder that can
affect various organs and the skin, making it difficult to recognize and
diagnose. She shares her experience of how finding a physician who understands
the condition was crucial to getting it under control. Overall, Kelly's story
sheds light on the challenges of living with an undiagnosed condition and the
importance of improving healthcare systems to support these patients.
Kelly is taking LDN, Low Dose Naltrexone.
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Nicole, from the United States, speaks about the challenges she has faced due to several complex health conditions. Ehlers-Danlos syndrome (EDS) is a genetic condition affecting connective tissue, leading to hypermobility of joints and easy injury. Mast Cell Activation Syndrome (MCAS) is a condition in which mast cells, which are part of the immune system, are overactive and cause symptoms such as hives, swelling, and abdominal pain. Postural Orthostatic Tachycardia Syndrome (POTS) is a type of dysautonomia that affects blood circulation and can cause symptoms such as lightheadedness, fainting, and rapid heart rate upon standing. Endometriosis is a condition in which the tissue that normally lines the inside of the uterus grows outside of it, leading to pain and other symptoms. Finally, Lyme Disease is a bacterial infection transmitted by ticks that can cause a range of symptoms including fever, headache, and joint pain. Despite the difficulties she has faced, Nicole remains an inspiration to others who may be struggling with similar health challenges.
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Kerriann, a person from Canada, shares her experience of living with multiple chronic illnesses. These conditions include Lyme disease, which is known to cause a range of symptoms from fatigue to joint pain, MCAS (Mast Cell Activation Syndrome), a rare condition that causes allergic-like reactions, EDS (Ehlers-Danlos Syndrome), a genetic disorder that affects connective tissues, POTS (Postural Orthostatic Tachycardia Syndrome), a condition that affects blood flow, and Fibromyalgia, a chronic pain disorder. Despite facing these challenges, Kerriann has chosen to share her story in the hope of raising awareness and providing support to others in similar situations.
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Tracy, from the United States, shares her personal experience with various medical conditions. These conditions include MCAS (Mast Cell Activation Syndrome), a condition where the mast cells in the body are triggered to release chemicals causing symptoms such as itching, flushing, and swelling; POTS (Postural Orthostatic Tachycardia Syndrome), a condition where changes in position cause an abnormally high increase in heart rate; RA (Rheumatoid Arthritis), a chronic autoimmune disease that causes inflammation and pain in joints and can lead to joint damage; Fibromyalgia, a condition characterized by widespread pain, fatigue, and tenderness in muscles and joints; and finally, a potential diagnosis of EDS (Ehlers-Danlos Syndrome), a genetic disorder that affects the connective tissues in the body and can cause joint hypermobility, skin that is easily bruised or stretched, and other symptoms.
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Kris has generously shared her personal journey with LDN, a medication used to treat a variety of conditions including autoimmune diseases, and MCAS, a condition where mast cells release excessive amounts of histamine and other chemicals, causing an array of symptoms such as hives, itching, and digestive problems. In her story, Kris discusses her experiences, including the challenges she faced and the treatments that worked for her. Her story may provide valuable insights and support to others who are also dealing with similar conditions.
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Linda Elsegood engages in a conversation with Amy, who shares her journey with multiple health conditions, including small fiber neuropathy, mold toxicity, MCAS (mast cell activation syndrome), EDS (Ehlers-Danlos syndrome), and POTS (postural orthostatic tachycardia syndrome).
Amy recalls that she has been experiencing symptoms her whole life, such as hives, reactions to medication, and odd food reactions. She describes having weird physical quirks that were dismissed as "just an Amy thing." For instance, she would feel hot in her head after eating peanuts or feel dizzy. Despite undergoing allergy testing, her results were negative, and doctors attributed her symptoms to being "sensitive."
However, after contracting mono and strep in college, Amy's symptoms became more debilitating. She felt extremely tired all the time, and nothing seemed to help. She experienced GI (gastrointestinal) problems, brain fog, and heat intolerance. Her symptoms continued to worsen, and she had episodes every few months where she felt like she was dying. She would have trouble eating, and it felt like a brick was in her stomach.
Despite seeking help from countless doctors, none could diagnose her condition or connect all her symptoms. Her doctors would refer her to specialists, such as gastroenterologists, allergists, and pulmonologists, but it didn't help. They would attribute her symptoms to panic attacks, stress, or other unrelated conditions. They even removed her gallbladder, but it didn't alleviate her symptoms.
Amy recalls that her body kept reacting to everything, and she could only eat rice for a while. After two back-to-back pregnancies, her body could no longer tolerate certain foods. She experienced anaphylaxis, which she knew was not a panic attack, and her face swelled up, and her tongue became tingly. Her body began reacting to everything, and she now only eats six foods.
In conclusion, Amy's story highlights the challenges of living with multiple health conditions and the difficulties of finding a diagnosis and proper treatment. Her experiences could help others who may be going through the same struggles.
#LDN #Low Dose Naltrexone
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Linda Elsegood interviewing Andrea, a patient from the United States who has been taking low dose naltrexone (LDN) to manage her health concerns. Andrea has been struggling with various conditions, including postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), long Covid, fibromyalgia, and myalgic encephalomyelitis.
Throughout the interview, Andrea delves into the details of her journey with LDN. She explains how her search for relief from long Covid ultimately led her to LDN, and how it has significantly improved her quality of life despite her many health concerns. Andrea expresses her gratitude for how LDN has been instrumental in helping her manage her symptoms and improve her overall health.
Linda and Andrea are able to discuss the benefits of LDN in managing a wide range of health issues. Their conversation provides insight into the effectiveness of LDN as a treatment option, and the importance of finding the right approach to managing complex health conditions.
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In this interview, Linda Elsegood delves into the life of Kaitlin, who shares her inspiring story of living with multiple chronic conditions, including MCAS, POTS, and EDS. Kaitlin describes how she experienced small dislocations and unusual pains as a child, which gradually escalated in her twenties and thirties, making it difficult for her to perform daily activities.
She explains how she ignored these symptoms for a long time, thinking that they were normal and that everyone experienced them. However, as time went on, she realized that her experiences were unique and needed attention.
Kaitlin also shares her journey of dealing with MCAS, a condition that caused her severe stomach pains after eating, leading to an eating disorder in her teens. She explains how MCAS made it challenging for her to find foods that would not trigger her stomach pains, causing her to miss school and social gatherings.
Even after her recovery from the disorder, the pain persisted, and she only received a formal diagnosis in 2022 from the Mayo Clinic. Kaitlin talks about the challenges of treating MCAS and finding trigger foods, which can be a difficult and frustrating process.
Additionally, Kaitlin shares her scary experience with POTS after blacking out and suffering catastrophic injuries. POTS caused her blood pressure to recoil, making it challenging for her to perform daily tasks. She talks about the difficulties of getting a diagnosis and seeking treatment for POTS, which can be a complex and confusing process.
Through her story, Kaitlin hopes to inspire others not to give up on themselves and seek help. She emphasizes the importance of self-care, seeking medical attention, and connecting with others who may be going through similar experiences. She thanks Linda for providing a platform for people like her to share their stories and connect with others and believes that together, we can make a difference and support each other in our journeys towards better health.
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Tierra from the United States shares her personal experience of MCAS, autoimmune progesterone dermatitis, POTS, celiac
Tierra describes how she first noticed her problems after taking bee pollen for her outdoor allergies, which led to getting blister hives everywhere and heart palpitations. Despite being misdiagnosed by a walk-in clinic, Tierra took matters into her own hands and researched her symptoms, leading to a diagnosis of Mast Cell Activation Syndrome (MCAS) by her
allergist.
Tierra also discusses chocolate as a big trigger for her, giving her migraines. Linda and Tierra confidently discuss how MCAS is more common than people realize, affecting an estimated 17% of the population.
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Pain specialist Dr Chris Kleronomos from Oregon us talks about how he used Ultra low dose naltrexone and LDN in his clinic.Dr. Chris Kleronomos, a renowned pain specialist based in Oregon, shares his valuable experience of utilizing Ultra Low Dose Naltrexone (ULDN) and Low Dose Naltrexone (LDN) in his clinic. He elaborates on the benefits of these powerful medications in the treatment of pain and their effectiveness in helping patients manage their condition. Dr. Kleronomos' insights are highly valued by his peers in the medical community, and his use of these innovative treatments is widely recognized as a significant contribution to the field of pain management.
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Melanie, a resident of Canada, went through a challenging journey of coping with multiple health conditions such as MCAS, POTS, Sjogren’s, Fibromyalgia, Asthma, and Hashimoto's. It's undoubtedly challenging to manage so many health issues simultaneously. However, Melanie found that once she was diagnosed with MCAS and learned how to control it, she observed an improvement in every other condition she had. It's admirable how she persevered through her struggles and learned to manage her health issues effectively.
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Living with the chronic conditions of Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), hypermobile Ehlers-Danlos Syndrome (hEDS), Polycystic Ovary Syndrome (PCOS), and Sjogren's Syndrome can be extremely challenging. Lindsay, who lives with these conditions, must face numerous daily struggles and triumphs. Despite her difficulties, Lindsay's determination and resilience continue to inspire others. It is noteworthy that she is not only a patient but also a Registered Nurse (RN) and Licensed Professional Counselor (LPC). Her experience as a healthcare professional and a patient make her an excellent example of strength and courage.
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Tracy from the United States, has bravely shared her personal experience dealing with three intricate medical conditions: Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Hypermobile Ehlers-Danlos Syndrome (hEDS). Her story is an eye-opener for many as these conditions are often misunderstood and difficult to diagnose. Tracy's account provides important insights into the challenges faced by individuals living with these complex health issues.
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In this poignant narrative, Doreena delves into the hidden connection between her struggles with Lyme disease and MCAS. She takes us through her emotional journey from childhood to the present day, recounting the trials and tribulations she faced. With a deep sense of empathy, she shares how she turned her experiences into a tool to unravel the mysteries of her condition, although she is still seeking answers for the treatment that would help her. Her story is both inspiring and informative, offering invaluable insights to those who are grappling with similar issues.
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Brandi from the US shares her life with Ehlers-Danlos, MCAS, and Dysautonomia.
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