Navigating the Maze of Long COVID: Pursuing Unconventional Solutions

Aug 12, 2023

Summary

This letter outlines my experience as a father dealing with my child's contraction of COVID-19, which later developed into long COVID. I detail the symptoms, diagnoses, treatments, and my research into potential underlying causes like microclotting and CD38 activation. The journey led me to explore various treatment avenues, including Heparin-induced Extracorporeal LDL Precipitation (H.E.L.P.) apheresis in Europe. Emphasizing both the challenges and the support received, I end with a plea for medical practitioners to engage proactively with emerging research on long COVID in children. I urge them to avoid misdiagnoses and ensure accurate treatments, highlighting the complexity and novel nature of the condition, in the hope that our story can serve as a beacon for others.

Disclaimer: It's important to emphasize that I am not a medical practitioner, and the contents of this letter should not be construed as medical advice or guidance. The journey outlined here is specific to my son's unique situation, and the treatments, observations, and outcomes described may not be applicable to others. Every individual's health condition is different, and the responses to treatments can vary widely. Anyone seeking medical guidance or considering similar treatments should consult with qualified healthcare professionals who are familiar with their particular circumstances. This narrative is shared with the intent to provide insight into our personal experience, not to offer general recommendations or solutions.

I have endeavoured to include critical journal articles and links into this document, reflecting my intense investigation into a complex subject matter. It's important to note that this is by no means an exhaustive list and may be lacking, thus these selections represent just a sample of what I read during my time of investigation.

Dear XXX

I hope this letter finds you well. I am writing to bring your attention to the journey my son and I have embarked on since he contracted COVID-19 on May 15th, which later developed into long COVID. Our experience exposed some gaps in our collective understanding and handling of this disease, particularly in children, and I believe our story may be instructive both to healthcare providers and parents facing similar medical complications. I write this letter with the utmost respect for the medical community and with the understanding that the challenges we have faced are part of a new and rapidly evolving field of study.

Initial Experience and Symptoms

My son's initial symptoms were typical of COVID-19, including:

Fevers
Coughing
Fatigue
Acid reflux
Stomach pain

He continued to test positive for about 21 days suggesting viral persistence. His extreme fatigue led us to the ER, where he was diagnosed with long COVID.

The summary of his long COVID symptoms included:

Continued headaches and increasing stomach pain
Intermittent diarrhea and a near-complete loss of lower limb function
Fatigue in upper limbs

He hasn’t experienced the following symptoms:

Tingling, numbness, or rashes
Issues with reflexes or sensory nervous system
Abnormal blood tests (except for low iron levels)

Despite the diagnosis, we were sent home without a treatment plan. This lack of guidance prompted me to explore online sources and the iRecover protocol, an approach with three phases that included natural medications like Vitamin D, Magnesium, Resveratrol, Nattokinase, Nigella Sativa, Quercetin, Probiotics, Calcium, Omega 3 oils (2), and Anti-histamines.

Journey to Diagnosis and Treatment

My background in Genetics and Biochemistry fuelled my curiosity, leading me to research these medications, particularly Nattokinase, which promotes fibrinolytic action and could help break down blood clots caused by COVID-19. Despite continued fatigue, subsequent ER visits led to diagnoses of viral myositis and Functional Neurological Disorder (FND), neither of which entirely explained my son's symptoms. Meanwhile, I delved into the literature on microclotting and the role of CD38 (1, 2), activation in scavenging NAD (nicotinamide adenine dinucleotide), worsening the fatigue.

CD38 is a multifunctional transmembrane protein which plays a significant role in the journey my son has undertaken. Found on the surface of various immune cells, including T cells, B cells, and natural killer cells, CD38 serves multiple functions, such as an enzyme assisting in the conversion of NAD+ to ADP-ribose and a receptor in cell adhesion. It's integral to different physiological processes and has been scrutinized for its involvement in diseases like chronic lymphocytic leukemia, multiple myeloma, and certain autoimmune disorders.

Various treatments, including Ivermectin, low-dose Naltrexone, and nicotinamide-ribose as a NAD booster, were tried with mixed success. The improvement plateaued, and the search for treatments and tests to detect microclotting continued, often met with scepticism or lack of knowledge by medical professionals.

Functional Neurological Disorder (FND) Diagnosis: An Unlikely Explanation

During the course of my son's medical journey, one of the diagnoses we received was Functional Neurological Disorder (FND, 2, 3). FND is a complex condition characterized by neurological symptoms that are not consistent with structural neurological disease. Though it was considered as an explanation for my son's symptoms, there were significant reasons why this diagnosis seemed unlikely:

1.     Symptomatic Inconsistency: FND typically presents with variable and inconsistent symptoms. However, my son's symptoms were consistent and systematically progressive. The coherence of his symptoms with the microclotting, and CD38 hypothesis further cast doubt on FND as an appropriate diagnosis.
2.     Lack of Psychological Factors: FND often correlates with underlying psychological stressors or trauma. In my son's case, there was no evidence of preceding emotional trauma or psychological factors that could trigger FND. His symptoms were more physiological, pointing towards a physical rather than a psychogenic origin.
3.     Responsiveness to Physiological Treatment: In my son's case, the positive response to targeted treatments, further undermined the FND diagnosis.
4.     Overlapping Symptoms with Other Conditions: While some of the symptoms may have superficially aligned with FND, they were also consistent with other explanations such as potential viral myositis (which we ruled out) and microclotting. The exclusive focus on FND might have overlooked a more complex and multifaceted medical situation.
5.     The Prevalence of FND as a 'Catch-All' Diagnosis: In some medical contexts, FND has been used as a "catch-all" diagnosis when symptoms do not neatly fit into known categories. In our case, the complexity and novel nature of long COVID symptoms may have contributed to a premature or overly simplistic attribution to FND.

Exploration of CD38 and Its Connection to Long COVID

In the course of my research, I became particularly interested in the function of CD38 and its activation caused by COVID-19. The connection between CD38 activation and long COVID can be explained through several pathways:

1. NAD Depletion: CD38 activation leads to NAD depletion, reducing the available NAD to participate in metabolic pathways. NAD is essential for the synthesis of ATP (adenosine triphosphate), the energy currency of the cell. Without adequate ATP, cells may become less efficient in energy production, leading to generalized fatigue.
2. Inflammation: CD38 has also been found to contribute to inflammation. Its activation in COVID-19 could lead to an increased inflammatory response, potentially causing some of the systemic symptoms of long COVID, including headaches and stomach pain.

Low-Dose Naltrexone (LDN) as a Treatment Option

Low-Dose Naltrexone (LDN) (2, 3, 4) emerged as a potential treatment for its ability to modulate the immune system. While typically used in higher doses to treat addiction disorders, in low doses, it has been found to have anti-inflammatory effects.

1. CD38 Modulation: LDN may act on opioid receptors, which are involved in immune system regulation. By blocking these receptors temporarily, LDN could potentially reduce CD38 activation, thereby reducing NAD depletion and the corresponding fatigue.
2. Inflammation Reduction: The anti-inflammatory effects of LDN could further alleviate some of the systemic symptoms of long COVID, providing symptomatic relief.

Understanding Microclotting: The Influence of Resia Pretorius' Research

The concept of microclotting emerged as a significant part of my investigation into my son's symptoms. Resia Pretorius, a well-respected researcher in the field of physiological sciences, has conducted groundbreaking research into hypercoagulable states, including microclotting on patients over the age of 18.

Pretorius' work has demonstrated that:

1.     Formation of Microclots: Under inflammatory conditions, fibrin fibres can form unusually dense matted deposits (DMDs). These DMDs create microclots that may contribute to systemic inflammation and a variety of symptoms, such as fatigue and localized pain. Microclotting is a severe and complex condition that can have profound effects on the body, including damage to the endothelial cells that line the blood vessels. The microclots, can obstruct the microcirculation, leading to diminished blood flow to various organs and tissues. Over time, this can result in ischemia and hypoxia, causing tissue damage and dysfunction in affected areas. The persistent presence of microclots can also lead to chronic inflammation and a hypercoagulable state, further promoting clot formation. Most concerningly, the chronic obstruction and inflammation can cause permanent endothelial damage. This damage impairs the endothelium's ability to regulate blood clotting, immune function, and vascular tone, creating a vicious cycle that can exacerbate the condition.
2.     Connection to COVID-19: Pretorius has explored how COVID-19 can induce these hypercoagulable states, leading to the formation of microclots in the blood. Her research has shown that the virus can cause alterations in blood clotting factors, platelet activation, and other cellular changes, leading to a unique clotting pathology.
3.     Link with CD38 Activation: This connection between CD38 activation and microclotting is novel but can be explained by the increased activation of platelets and the fibrinolysis pathway. CD38 activation may create a chain reaction that leads to microclotting, resulting in symptoms like fatigue due to NAD depletion.

In the course of my investigation, I came across the Cochrane review concerning the microclot hypothesis. I found this response very helpful.

Treatment Through H.E.L.P. Apheresis

Upon understanding the complexity of microclotting and the potential impact of CD38 activation, I explored various treatment options. One solution (2) stood out: Heparin-induced Extracorporeal LDL Precipitation (H.E.L.P.) apheresis. This medical procedure was suggested due to the following reasons:

1.     Removing Microclots: HELP apheresis is a procedure designed to cleanse the blood of certain unwanted substances. In the context of microclotting, it can help remove or break down the microclots, alleviating symptoms.
2.     Addressing Sticky Blood: The observation of my son's blood being sticky and clotting fast further aligned with the microclotting hypothesis. HELP apheresis provided a targeted approach to address this condition.
3.     European Expertise: While the treatment was not commonly practiced in our home country, Europe offered the necessary expertise and facilities. The decision to travel was based on the availability of medical professionals experienced in HELP apheresis for treating hypercoagulable states.

The urgency of pursuing H.E.L.P. apheresis treatment became evident as I reviewed various forums and came to understand the potential consequences of delay. After about six months of the onset of the condition, permanent endothelial damage could occur, an irreversible change that could have lasting implications for my son's health. This alarming discovery underscored the need to move with haste and reinforced our determination to seek immediate, specialized treatment. It also highlighted the broader necessity for medical practitioners to be agile and responsive in their approach to novel and rapidly evolving medical conditions such as long COVID.

Challenges, Funding, and Execution

The journey towards HELP apheresis treatment was filled with both scepticism and support:

1.     Scepticism and Doubt: Despite the theoretical soundness of the microclotting hypothesis and the HELP apheresis procedure, criticism from mainstream medical journals added an extra layer of challenge. Articles produced by the British Medical Journal (BMJ) and National Geographic raised doubts about the procedure, highlighting its unconventional nature and potential risks. These publications often questioned new treatments without necessarily providing alternatives, reflecting a broader tension within the medical community towards innovative approaches.
2.     Understanding HELP Apheresis: Despite the scepticism, the theory behind HELP apheresis is scientifically grounded. HELP apheresis is designed to remove LDL cholesterol, fibrinogen, and other proinflammatory factors. In the context of microclotting, it could assist in breaking down or removing the microclots, thus alleviating symptoms. This procedure represents a worthwhile avenue for exploration and points to the need for more comprehensive research, trials, and understanding.
3.     Community Support: In stark contrast to the professional scepticism, our family, friends and broader community were truly amazing in helping us get my son to Europe for treatment. Their unwavering support, both emotionally and financially through our GoFundMe campaign, was instrumental in enabling us to pursue this specialized treatment.

Our experience thus far with HELP Apheresis

The port insertion posed initial challenges, and the medical professional's observation of my son's blood's "sticky" nature further confirmed our path.

During the first HELP apheresis procedure, a significant discovery was made that further validated our pursuit of this treatment approach. A substantial number of clots were removed from my son's blood, as evidenced by the clotting found in the filters of the apheresis machine. This tangible result provided both a sense of validation and a promising direction for future treatment. The presence of these clots lent credence to the theory of microclotting and reinforced the importance of exploring innovative and sometimes unconventional treatments when dealing with complex and novel medical conditions like long COVID.

My son's healing journey is still ongoing, and while the treatment is in progress, we are witnessing improvements. It's a glimmer of hope in a challenging time. However, we understand that this treatment may not be a silver bullet, and his recovery could still be a complex process. We believe that more research is necessary to explore the underlying mechanisms of his condition, as well as to develop more targeted and effective therapies. The procedure's success thus far has provided valuable insights that may benefit others facing similar health challenges. Our experience underscores the importance of continued scientific exploration, and we remain hopeful for the future.

Navigating this environment has been an immense challenge. Delving into complex medical research and working through the maze of information and treatments has been an exhaustive process that has consumed months of my life. I recognize that not everyone has the resources or the ability to dedicate such time and effort to this pursuit, and the emotional toll it takes is not to be underestimated. The difficulties we've faced underline a clear need for more comprehensive support systems for families dealing with similar medical complexities. Support from the medical community, researchers, and dedicated organizations must be more readily available to ensure that the intricacies of these health challenges do not become insurmountable barriers for those without specialized knowledge.

A Plea for Continued Exploration and Understanding

As our journey unfolded, I was struck by a comment from the paediatric neurologist who treated my son, mentioning that he sees 2 to 3 cases of a similar condition every week. This remark resonated with me deeply, highlighting the increasing prevalence of long COVID in children and the urgent need for medical practitioners to be well-acquainted with the latest research in this area.

While I understand and profoundly respect the immense challenges that healthcare professionals face daily, the rising number of long COVID cases demands a proactive stance. We must strive to stay ahead of this emerging health crisis. The risk of potentially mislabelling these cases as FND or another familiar but possibly incorrect diagnosis underscores the necessity for continuous exploration, education, and collaboration.

As we have discovered, long COVID is complex, and its effects on children are only beginning to be understood. The scientific community's knowledge is rapidly evolving, and it is essential that clinicians engage with this research to provide the best possible care. This involves not only understanding the most recent findings but also recognizing the gaps and uncertainties, the latter of which may lead to critical diagnoses being overlooked.

I write this letter not as a critique but as an earnest plea to healthcare providers. Our experience has taught me that even well-intended and highly skilled practitioners might miss something significant when faced with novel and perplexing medical challenges. Thus, it is our collective responsibility to delve deeper into long COVID's intricacies, especially in children, to ensure that those suffering receive the most accurate diagnoses and effective treatments.

My family's story is but one among many, and my hope is that it may serve as a beacon, urging all medical professionals to invest in understanding long COVID. As a parent, scientist, and citizen, I extend my heartfelt gratitude for your tireless efforts and my sincerest hope that together we can face this challenge head-on.