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A forthcoming documentary from the LDN Research Trust gives compounding pharmacists, physicians and prescribers an opportunity to learn about a group of complex and debilitating syndromes that affect one in six Americans — syndromes that occur in almost every part of the body, often accompany each other and collectively exacerbate the patient’s pain and other symptoms. This article briefly summarizes these syndromes and their overlapping symptoms and discusses how you can help educate providers in your community — as well as your staff and patients — about their effects, along with the potential use of low-dose naltrexone (LDN) in compounding preparations.
Stealth syndromes include mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (EDS), each of which is discussed below.
Found in most organs of the body, mast cells are part of the immune system and are responsible for immediate allergic reactions that are triggered by allergic substances such as medications, infections, chemicals and insect bites. Mediators stored in or created by mast cells are released and create allergic reactions. A trigger from an allergen is called activation and the release of mediators is called degranulation.
MCAS is caused by dysfunction of mast cells; patients afflicted by MCAS experience repeated episodes of allergic reactions with accompanying symptoms:
POTS (also referred to as dysautonomia) is caused by a malfunction in part of the autonomic nervous system, which controls involuntary body functions such as breathing and heart rate. The syndrome is considered one of a group of disorders that present symptoms of orthostatic intolerance (OI). OI is a condition where an excessively reduced volume of blood returns to the heart after an individual stands up after laying down.
Patients afflicted with POTS often experience:
EDS is a group of disorders that affect connective tissues that support the skin, tendons, ligaments, bone, blood vessels and many organs and tissues. An unusually large range of joint movement (hypermobility) occurs in most forms and is the hallmark feature of the hypermobile type.
Patients afflicted with hypermobile EDS (hEDS) may present some or all of the following symptoms:
Linda Elsegood, Chief Executive Officer and founder of the LDN Research Trust, refers to the collection of MCAS, POTS and EDS as “Stealth Syndromes.” Keenly aware of the debilitating impacts and empathetic for patients who suffer from these syndromes, Linda shared her concerns during The Mortar & Pestle podcast. “Patients with MCAS are also susceptible to having EDS and POTS; they tend to go hand-in-hand,” Linda said. “Some of these patients come into the doctor’s office with 40 different symptoms and practitioners have no idea where to start. Some physicians just throw up their hands and walk away. Others just treat one or two individual issues. But until you get down to the root cause — it’s nothing more than a Band-Aid.”
Adding insult to injury, many conventionally prescribed tests return with negative results, which add to the growing pile of doubts among family and friends.
“A lot of the tests, they do come back negative, which leads family and friends to thinking, ‘Well, if the doctors can't find anything wrong with you, there is nothing really wrong with you!’” Linda said. “I know one lady whose parents wouldn't talk to her anymore because they thought she was just a hypochondriac, that there was nothing really wrong with her. And that is so isolating for the patient.” Although considered a rare disease, Dr. Leonard Weinstock, a gastroenterologist and leading expert on MCAS, estimates one-in-six people are afflicted with the syndrome in the Northern Hemisphere; most are unaware.
During the podcast, Linda likened the lack of awareness to Lyme disease. “There were no reported cases of Lyme disease anywhere in the United States because there was no true diagnosis. And so they couldn't gather the data. And then very quickly, they said Lyme disease existed in the United States.”
Linda is calling on compounding pharmacists — notably PCCA members — to raise awareness of Stealth Syndromes and the potential use of low-dose naltrexone (LDN) in preparations.
The LDN Research Trust developed a documentary, “Understanding Stealth Syndromes,” that sheds light on these esoteric conditions. The documentary, which airs for 24 hours on February 27 (to accommodate global time zones), explains the underlying root causes, why most doctors miss these conditions, potential treatments and more.
Compounding pharmacies are urged to help raise awareness by:
“We’re aiming to raise awareness and connect individuals suffering from undiagnosed Stealth Syndromes with knowledgeable local providers,” Linda said. “Compounding pharmacists, technicians and staff are compassionate — many are aware of the benefits of LDN — and are adept at providing personalized preparations to these patients.
“They are positioned to develop awareness in their communities and can purchase as many licenses to the documentary as needed. Once we have sold the license, they can do whatever they like.”
This includes selling tickets to and/or publicizing the event on their respective pharmacy websites.
“We are happy to help them publicize or advertise the event,” Linda said. “On our website and throughout our social media platforms, we list all pharmacies who purchased licenses for the documentary, as well as their locations, so people know who to contact to attend viewings. We also hope to invite local media to these events; if an event is sold out, many become really interested and will send reporters who will broadcast or write about it.”
For additional information, email contact@ldnresearchtrust.org.
Listen as Linda shares her personal struggles and the impetus for creating the LDN Research Trust, as well as the need for public awareness of Stealth Syndromes, in The Mortar & Pestle Podcast.
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These statements are provided for educational purposes only. They have not been evaluated by the Food and Drug Administration, and are not to be interpreted as a promise, guarantee or claim of therapeutic efficacy or safety. The information contained herein is not intended to replace or substitute for conventional medical care or encourage its abandonment.