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When my cousin suggested spreading awareness about our shared condition, Common Variable Immune Deficiency (CVID) and Immunoglobulin G (IgG) Deficiency, I knew it was a call to action. CVID remains a shadowy figure to many, often misunderstood or unknown, despite its profound impact on those it touches. My journey, like many others', has been one of mystery, challenges, and ultimately, enlightenment and hope. Few people realize what it is or what others are going through. Others have it so much worse than I do. As many also had, I had years of illness, not knowing what was wrong, but knowing something was. I'm so thankful that I finally have a name to what is wrong and a treatment plan.
Understanding CVID and IgG Deficiency
First, lets cover what the symptoms are for CVID and IgG Deficiency. Common Variable Immune Deficiency (CVID) and Immunoglobulin G (IgG) deficiency can be diagnosed at any age, but the majority of cases are typically identified in adults between the ages of 20 and 40 years. However, diagnoses can occur outside this range, from children to older adults, depending on the onset of symptoms, the severity of those symptoms, and when individuals seek medical evaluation.
CVID and IgG deficiency often present with a broad spectrum of symptoms, including frequent bacterial infections (such as sinusitis, pneumonia, bronchitis, and gastrointestinal infections), which can mimic other conditions and contribute to the challenge of early diagnosis. The variability in symptom onset and severity, along with a general lack of awareness about these conditions in the general medical community, can lead to significant delays in diagnosis.
Symptoms of CVID and IgG Deficiency
Common Variable Immune Deficiency (CVID) and IgG deficiency share some overlapping symptoms, which primarily revolve around an increased susceptibility to infections. However, the nature and severity of these symptoms can vary widely among individuals. Key symptoms include:
Frequent infections: Especially in the sinuses, lungs, and ears, which can often be severe and recur despite treatment.
Chronic fatigue: A pervasive sense of tiredness that is not alleviated by rest, affecting daily functioning.
Gastrointestinal issues: Including diarrhea, abdominal pain, and weight loss, which may result from mal-absorption or chronic inflammation of the GI tract.
Joint pain and inflammation: Some individuals may experience joint pain without apparent cause.
OK. So what do these Immunoglobulins and what do they do?
Immunoglobulins, also known as antibodies, play crucial roles in the body's immune response by identifying and neutralizing foreign objects like bacteria and viruses. Each class of immunoglobulin has distinct functions and characteristics:
Immunoglobulin A (IgA)
Location and Function: Predominantly found in mucosal areas, such as the gut, respiratory tract, and saliva. It plays a critical role in mucosal immunity by preventing colonization by pathogens.
Subtypes: Two subclasses, IgA1 and IgA2, with IgA1 being more prevalent in the bloodstream and IgA2 more common in mucosal areas.
Immunoglobulin E (IgE)
Location and Function: Present in the lungs, skin, and mucous membranes. IgE is responsible for initiating inflammatory responses to allergens, playing a key role in allergic reactions, including asthma, and in the defense against parasitic infections.
Subtypes: No subclasses, but it binds to allergens and triggers histamine release from mast cells and basophils.
Immunoglobulin G (IgG)
Location and Function: The most abundant type of antibody in the bloodstream. It provides the majority of antibody-based immunity against invading pathogens. IgG is the only antibody capable of crossing the placenta to give passive immunity to the fetus.
Subtypes: Four subclasses (IgG1, IgG2, IgG3, and IgG4), each with different roles in immune response, including complement activation, opsonization, and neutralization of toxins and viruses. There are more of some than there are of the others, so if one of the lower level ones is low, the overall IgG readings will be normal.
Immunoglobulin M (IgM)
Location and Function: Primarily found in the blood and lymph fluid, IgM is the first antibody to be made by the body to fight a new infection. It forms a pentamer structure, making it very effective in agglutinating and killing pathogens.
Subtypes: No subclasses, but it is especially effective in forming complexes with antigens and activating the complement system.
Immunoglobulin D (IgD)
Location and Function: Exists in small amounts in the blood, but primarily found on the surface of immature B-lymphocytes as part of the B-cell receptor complex. Its precise function is not fully understood but is thought to play a role in the initiation of immune responses.
Each type of immunoglobulin is specialized to respond to different types of antigens and plays a unique role in both immediate and long-term immune responses. Their combined actions are crucial for maintaining the body's defense against a wide array of infectious agents and other potentially harmful substances.
Challenges in Diagnosis
Diagnosing CVID and IgG deficiency presents several challenges for medical professionals:
Overlap with common conditions: Many symptoms of CVID and IgG deficiency, such as frequent infections and fatigue, are common in the general population and can be mistaken for other conditions.
Lack of awareness: There is still a significant lack of awareness about these conditions among healthcare providers, leading to under-diagnosis or misdiagnosis.
Variable presentation: The wide range of symptoms and their severity can vary greatly from one person to another, making it difficult to apply a one-size-fits-all approach to diagnosis.
Delayed onset: Symptoms may not present until later in life, leading individuals to suffer for years before receiving a correct diagnosis.
Diagnosis Criteria
The diagnosis of CVID and IgG deficiency involves a combination of clinical evaluation and laboratory tests:
For CVID:
Markedly decreased levels of IgG and at least one other immunoglobulin class (IgA or IgM) below the normal range.
Poor antibody response to vaccines.
Exclusion of other causes of hypogammaglobulinemia, such as medication effects or other genetic conditions.
Typically, diagnosis requires symptoms to have been present for at least 6 months.
For IgG Subclass Deficiency:
Normal total IgG levels but low levels of one or more IgG subclasses.
An increased rate of infections compared to the general population, particularly sinus, respiratory, and ear infections.
Like CVID, an inadequate response to vaccines can be an indicator.
Exclusion of other conditions that could explain the symptoms.
The prevalence of Common Variable Immune Deficiency (CVID) and Immunoglobulin G (IgG) deficiency varies, but they are among the more common primary immunodeficiencies. For CVID, the estimated prevalence in the general population is approximately 1 in 25,000 to 1 in 50,000 people in the United States. IgG deficiency, particularly selective IgG subclass deficiencies, may be more common, but accurate prevalence rates are harder to determine due to the variability in diagnosis criteria and the mild nature of the condition in some individuals, which may lead to under-diagnosis.
It's important to note that these figures can vary based on the sources and the methods used for diagnosis. Despite being the most common types of primary immunodeficiency, both conditions are often under-recognized and under-diagnosed, contributing to a lack of precise epidemiological data.
By understanding the symptoms and the intricacies involved in diagnosing these conditions, patients and healthcare providers can better navigate the path to a correct diagnosis and effective treatment plan. Awareness is the first step towards recognition, timely diagnosis, and management of CVID and IgG deficiencies, ultimately improving the quality of life for those affected.
I'm my case, my body doesn't create some subclasses of Immunoglobulin G (IgG). My overall IgG numbers are actually not horrible, but because that one small subclass (mostly affecting sinus, ear, and lung infections) doesn't work, my body can't look through the list of antibodies it learned to create and send the blueprints to the printer. after years of treatment, my body now is also starting to get low on IgE.
Treatment and Management
My treatment regimen is both a lifeline and a routine. Starting out, it was much harder. Because the treatments are so costly, the insurance company wants to make sure that the treatments would actually help me. They approved Monthly intraveneous (IV) plasma treatments combined with medicines designed to supplement my immune system's gaps.
What are the IV Treatments like?
Treatment day. 5-6 hours sitting in a chair getting medicine and saline pumped in via IV. Get a slight headache, but I'm typically doped up on 3 different forms of antihistamines (Benedryl, Claritin, and Chlortabs - all at once), so I sleep. I keep this up for several days, so most of it is done sleeping. Day 2 feels pretty good, even though I'm sleepy. By the end of day 2-day 4 the side effects occur. Kind of feels like a mild flu. Achy and tired, but the bone pain can be tough. The medicine goes through the blood stream and accumulates in the bone marrow. It was explained to me that the flu feeling is your body fighting all the illness in your body all at once.
For the next 2 weeks, I felt amazing. I didn't even realize that my good days the year before were actually so bad. Inevitably, by the end of week 3, I've gotten sick again. These sessions, lasting 5-6 hours, are a cocktail of necessity and endurance, accompanied by a blend of antihistamines to ease the process. The treatments also have the added benefit of brain fog and grogginess. Despite the side effects resembling a mild flu, the days following treatment were a glimpse into normalcy and vitality that gave me hope. There are some who have multiple days of treatments (I only have 1 day), they don't get 2 full weeks of feeling healthy, they have more than just one subclass deficiency. I'm very blessed.
After six months of these IV treatments, I was approved for subcutaneous treatments, administered every two weeks. These were administered by a nurse initially, then I learned to do them myself. As of early 2024, I have now been performing these on my own for well over a year. They still take about 2-3 hours, but I now have the flexibility to do them when my schedule permits, rather than waiting for the facility to be available. I do still get headaches and sleepy, then feel like I have the flu, but these symptoms are typically only a day or so. I genuinely feel healthy on some days Not all the time, but for the first time in so long that I can't remember, I have vacation time saved up. The quality of my life is so much better.
Daily Living with CVID
The cycle of treatment, temporary relief, and the inevitable return of illness frames my life. Yet, this rhythm has fostered an appreciation for the good days and a resilience against the bad. The hope for extended periods of health remains, with ongoing adjustments to my treatment aiming to improve quality of life.
As of the last 2 years, the insurance would only approve on a six month basis for the authorization to get my medicine. Each time, is a delay in paperwork and processing, which usually means that I miss a dose and get sick again. This month, they approved me for a full year. Of course, I also found out that I lose my job next month, so I'll be changing insurance companies again and it will have to start all over.
This new treatment plan has been so great. I am so happy that things are going so well, but it is something that I always must be on the look out for my health. I do daily nasal washes, I take strong probiotics regularly, and I have found that I avoid large crowds and being out in public. It has been a full change in life. Even now, if the kids have a slight cold, I will be sick for a week. It is almost a guarantee.
The Emotional and Psychological Impact:
Sharing my story isn't about seeking sympathy but about offering perspective and solidarity. The road is tough, but I stand today better than before, with eyes open to future possibilities. This journey isn't walked alone; it's a path shared with others who face similar battles, each with their unique challenges and triumphs.
We are working on building awareness, as there may be others who were like me last week. They have been struggling with health for the last few years. Their doctors haven't thought to check their Immunoglobulin levels. If you know of someone like this, I encourage you to send them this link.
If you thought (I can't imagine anyone would but...) "Wow, she has a great life." I do, but it's not all sunshine and roses. Here is to being genuine and helping you appreciate what you have and how lucky you are.
Support Systems and Resources:
Awareness and education are crucial, both for those living with CVID and their communities. For those wandering a similar path, unsure of where to turn, knowledge can be a beacon. Resources like the Immune Deficiency Foundation (https://primaryimmune.org) and detailed discussions on CVID (https://www.biotekrx.com/lets-talk-cvid/) offer invaluable information and support.
Closing Thoughts:
My life with CVID is a testament to the complexity of the human spirit, marked by resilience, hope, and the ongoing quest for better days. It's a reminder to cherish health, embrace support, and continually seek understanding. Let this story be a bridge to awareness, a hand to hold for those in the dark, and a celebration of the strength found in adversity. For anyone navigating the uncertain waters of CVID, know that you're not alone. Together, with awareness and support, we can forge a path toward better understanding, treatment, and ultimately, a better quality of life.
References and Further Reading:
Social Network Influencers
Search on Social Media Platforms: Use platforms like Instagram, Twitter, and Facebook. Keywords like "CVID," "Immunodeficiency," and "IgG deficiency" can help locate influencers sharing their journeys. Often, patients and healthcare professionals use hashtags related to these conditions to share information and personal stories.
Websites
Immune Deficiency Foundation (IDF): Provides comprehensive information on various primary immunodeficiencies, including CVID and IgG deficiencies. https://primaryimmune.org
American Academy of Allergy Asthma & Immunology (AAAAI): Offers resources and educational materials on immune deficiencies. https://www.aaaai.org
The Jeffrey Modell Foundation: Focuses on early diagnosis, genetic research, and treatment of primary immunodeficiency diseases. http://www.info4pi.org
Videos
YouTube: Search for documentaries, personal stories, and medical explanations using specific terms like "CVID patient experience" or "Understanding IgG deficiency."
TED Talks: Occasionally, there are talks related to personal health journeys and advances in immunology that can be enlightening.
Further Readings in Books
"Living Well with a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life" by Stacy Taylor: Although not specific to CVID or IgG deficiency, this book offers insight into living with chronic, invisible illnesses. Amazon link
"Immune System Recovery Plan: A Doctor's 4-Step Program to Treat Autoimmune Disease" by Susan Blum: Provides an approach to managing autoimmune diseases that could be beneficial for those with immune deficiencies. Amazon link
"The Patient's Guide to Immunodeficiency Disorders" by Anthony R. Hayward: This book includes patient-centered information on managing immunodeficiency disorders. Amazon link
When searching for books on Amazon, use keywords related to CVID, IgG deficiency, and immune system health. This approach should help you locate useful resources.
Remember, while these resources can provide support and information, they should not replace professional medical advice. Always consult healthcare professionals for personal medical concerns.
