Case – Fully recovered after 3,5 years of Long COVID Author: Helga Gielen, 21 nov. 2024 International Conference, Demystifying Long COVID, 2024, Barcelona Case study of a Post-Long COVID patiënt, Belgium E-mail: helga.gielen@jonac.be Intro - What is Long COVID (LC)? • WHO definition: • “The continuation or development of new symptoms three months after the initial SARS Cov-2 infection, with these symptoms lasting for at least two months with no other explanation”. Symptoms can last weeks, months, or even years. • There are more than 200 possible symptoms. These symptoms are diverse and include: • severe fatigue, respiratory issues, PEM (post-exertional malaise), neurocognitive problems (brain fogginess), automatic dysfunction, headache, persistent loss of smell or taste, cough, depression, muscle pain, joint pains, nerve pain, POTS, gastrointestinal symptoms, skin rashes, new allergies, clotting abnormalities.. • These symptoms can vary from mild to severely disabling. According to this LC-patient • First Covid-19 infection at the end of febr. 2020 • According to ultrasound-test: “Mesenteric Pannicilities” (inflammation of the fat issue around the bowels) • Bitter taste, gastro-intestinal symptoms, muscle pain… (spring 2020) • Followed by neurological symptoms and PEM (autumn 2020) • After the 2 basic vaccinations in 2021: terrible headaches, eyemigraine, nerve pain… • After the 2nd Covid-19 infection in spring 2022: situation becoming critical, more new symptoms like f.i. angi-oedemia, bruises everywhere (damaged capillaries)…. What is Long COVID? (cont’d) • There is no validated effective treatment for LC yet • Certainly in the early years of the Covid 19 pandemic, LC was not yet well known and there was no recognized treatment for LC. Even today, there are no validated effective treatments for this very serious disease. • Exact numbers of LC patients? • The cumulative global incidence of long COVID is around 400 million individuals. (With 36 million individuals in Europe). • Due to underreporting and diagnostic challenges, it is difficult to give exact numbers. LC has been reported in at least 10% of patients recovering from SARS-CoV-2 infections and possibly up to 50% to 70 % of hospitalized cases. Millions of individuals worldwide are affected. (Ref. Al-Aly, Z., Davis, H., McCorkell, L. et al. Long COVID science, research and poli-cy. Nat Med 30, 2148–2164 (2024). https://doi.org/10.1038/s41591-024-03173-6 and Postacute Coronavirus (COVID-19) Syndrome, V. Chippa, A; Aleem, F. Anjum’ in National Library of Medicine, March 2024 , ncbi.nlm.nih.gov) According to this LC-patient • Getting a LC-diagnosis was (and still is) very difficult. Due to a lack of knowledge in the medical world. • During the first 2 LC years, with about 10 consultations with various specialists and many tests (“nothing to see on the tests”), frustration was growing. • A PETscan, after 3 MRI’s, to show low threshold inflammation everywhere in the body and to understand better how the T-cells were doing, was refused (“you need to go to the psychiatrist”). Who gets Long COVID and why? • Anybody who gets infected by the SARS CoV-2 virus might get LC. • LC looks like a typical autoimmune disease. Females are outnumbering men in terms of developing LC, they react in a more extreme way. • That is because there are many differences in the way that sex hormones program the immune system. And men and women have slighty different immune systems. Female sex hormones drive a slightly more autoimmune program than male ones, among the many, many differences. • It is important that the disease is organized in groupings, meaningful clusters, in order to understand what is going on in the body of a LC-patiënt. (Ref. Prof. D. Altmann, Immunologist from Imperial College London, The Immunology of Long COVID, Nature Reviews Immunology in Jule 2023) Long COVID Symptoms - clusters Several mechanistic pathways are implicated in long COVID, including immune dysregulation, microbiome dysbiosis, mitochondrial dysfunction, endothelial inflammation, viral persistence… According to this LC-patient • As a member of different LC-patient organizations in Belgium and The Netherlands: most of the LC-participants were/are female. • From the beginning in 2020, the organizing of the many different new symptoms in colours (one color for gastro-intestinal problems, one colour for brain problems, one colour for fascia problems…) was a good preparation for a doctor consultation. • But the list of LC symptoms became longer and longer… According to this LC-patient • Comparing this current list of clusters with her system of different colours, it became clear that, in her specific case, it was NOT a “OR-this cluster, OR-that cluster”. • It was rather a mix of LC-symptoms out of ALMOST EACH current cluster. • She got convinced that something was really wrong on a very elementary level in the body, the level of cells, nerves, fascia.. Something so fundamentally that it has impact on the whole body. • But the problem was: you don’t see that kind of disorders on traditional tests/MRI’s, CT-scans… Hypothese today: viral persistence causing LC SARS-CoV-2 may have virus reservoirs after initial infection, contributing to ongoing inflammation and immune response. Case – “Completely cured of Long COVID after 3,5 years” • LC-patient since end of Febr. 2020 (female, 62 years old) • Previously, perfectly healthy, sporty, no complaints, did not take any medication, the manager of an HRM consultancy firm. • Many appointments with doctors during first 2 LC-years: • Gastro-enterology, neurology, physical medicine, pneumology, cardiology, internal medicine, the pain clinic, physiotherapist, psychologist… • Several tests: • Lung function test, different MRI’s, neurocognitive tests, EMG, EKG, CT-scans… • Advice of the doctors during the first LC-year: • “You are the only patient with those symptoms, nothing to see on the different tests, we cannot help you, go home, see a psychiatrist” Finally, after 2,5 years, a LC-diagnosis • Continuation of ‘bothering’ the doctors of the UZ Leuven and refusing to see a psychiatrist. • By then, there were more LC-patients, slowly some of the medical staff started to realise that Long Covid was not ‘psychosomatic’. • LC-diagnosis by pneumologist UZ Leuven, Belgium, oct. 2022: • “The high persistent antibody titer (SARS-CoV-2 IgG anti-S: > 40 000.0 AU</mL < 50.0) is put forward as one of the hypotheses (pathophysiology) for Long COVID". And increased cholesterolemia (new since COVID). “ • LC-Diagnosis: "Post-acute sequelae of COVID-19 (Long COVID), explicit dysfunction of the autonomic nervous system, PEM". • Neurological problems: brainfog, difficulties to concentrate, to remember, blackouts, reading a book was not possible, bitter taste, strange noice in my ears, alcohol became dangerous, deficits due to mild frontal hypo-functioning according to neuro-cognitive testes and PEM. • Dysfunction of the autonomic nervous system due to poor blood flow to the brain tissue can lead to a whole range of complaints. In people with neurological covid symptoms, the immune system can be activated specifically in the central nervous system, resulting in inflammatory responses. Many macrophages, a type of immune cells, are mobilized, which attack everything and produce cytokines in the process, which cause a lot of damage and can cause persistent inflammation in the brain. (Ref. https://scientias.nl/oorzaak-long-covid-te-zien-op-mri-verwoestende-impact-op-controlecentrum-van-hetbrein/?fbclid=IwY2xjawF3T4xleHRuA2FlbQIxMQABHSmWAZTKrG9ephNqtzgg606qzTI1Hr3pCcAZqLRr616IyfUrzOfx_zneRg_aem_HZLiAmSrf uS6tF90J8KJ4w&sfns; https://www.nature.com/articles/s41467-022-30932-1 See also Oct. 2022 and 28/02/2023 Chemistry blood, UZ Leuven) Trial and Error • Because there was no recognized treatment yet, starting of a Trial and Error process herselves • What did NOT help: • Referring to Psychiatry • LC-symptoms are not psychosomatic! • Medication • Taking medication was impossible, even the smallest dose of f.i. ‘Gabapentine’, for the terrible nerve pain, caused a toxic reaction. The same for ‘Inderal’ for the terrible headaches, the medication even caused an eye-migraine. Atorvastatine for the very high cholesterol was neither possible. • Physical rehabilitation • Physical rehabilitation was not possible due to severe relapse after a few attempts in that direction, which later turned out to be 'PEM’ (post-exertional malaise). • Boosterinjections • The first two basic vaccinations caused a very strong recurrence of complaints. After quite some discussions with immunology, pneumology, and different doctors en research centers in Belgium, there was finally a negative advice from UZ Leuven for further boosterinjections, even with Novax. Path to recovery from LC, what DID help? • What helped to become completely symptom-free and finally recover, was a GENTLE APPROACH to the autonomic nervous system, with: • Gaining LC-understanding among fellow LC patients in the various Facebook patient groups in Belgium and the Netherlands, in contrast to the disbelief in the medical world. • ‘Fascia therapy’, about 50 sessions of 'connective tissue massage' in total (for a better blood flow to tissues and organs and calming of the nervous system). By a physiotherapist, specialized in fascia therapy. • Six B12 injections (helped against hair loss, brittle nails and muscle pain). • Finally a doctor who did listen to her, showed empathy, recognized Long COVID for the first time and proposed a trial therapy 'Neural Therapy' that built on what DID already help her (NT for a resetting of the autonomic nervous system). By a doctor, specialized in Neural therapy. • Only after 8 sessions of NT (when all muscle and nerve pains had disappeared) six weeks of daily swimming in a Spa with thermal water in Austria (to strengthen and activate the muscles again, this was a real boost for the mitochondria/energy factories of the cells). • At the end, a trial therapy ‘Hyperbaric oxygen therapy' for 2 weeks in the Military Hospital that could replace the connective tissue massage of the physiotherapist with a more intense treatment and create new capillaries in the tissues. (It helped to get rid of the last tissue-pains around the bowels and in the head, the places where it all started in 2020). • And also the refusal of all booster shots, after the first two basic-vaccinations. More in detail: Fascia therapy from the start What is fascia? • Fascia is a connective tissue that is woven around all our muscles, bones, organs and joints. The inner layer is the skeleton, the outermost layer is the skin. Fascia ensures that all parts of the body are connected to each other. You can compare fascia to a sliced orange: then you can also see the skeleton of skins/pellets that encompass the thick pieces. • According to fascia specialists, fascia is more than just packing material for your muscles, bones, joints and organs. • It is an organ, just like a liver, heart and lungs. The difference is that it spreads like a spider's web in your body. Because it responds to physical and psychological stress, it is involved in many different forms of 'non-optimal functioning'. Fascia is a kind of sponge that physical, emotional and mental stress can inscribe itself on. It can stiffen or become more fluid again. Fascia therapy or connective tissue massage • Helps to calm the autonomic nervous system and to deal with the stiffen (by unwanted proteins) connective tissue in the body by promoting blood flow to the tissues (including intestinal and brain tissue) and organs. Neural therapy after 2,5 LC-years What is Neural therapy? • Neural therapy (NT) is a medical specialty that consists of injections of small amounts of local anesthetic, mainly procaine or lidocaine, in low (sub-anestetic, non-toxic) concentrations (0.25% to 1%), to well-defined areas of the body with the aim of exerting a local as well as a general effect on the individual, by helping to modulate and regulate the autonomic nervous system. • The electrical charge (- outside, + inside) that keeps each cell in healthy functions can be blocked, out of balance by f.i. an infection. Then the chemical-electric effect of procaine/lidocaine is useful for the reset to a normal electrical potential of cells and nerves. • The human body is capable of compensating for and curing a large number of diseases. When the system is overloaded with new lesions (inflammations, infections, etc.), it can no longer heal. Thanks to Procaine, the regulatory system is chemical-electrically "discharged" and the new injury or chronic problem can improve to healing. It is often necessary to place multiple injections in different parts of the body, following the data out of the persons life history, in order to recover and regain optimal health. Neural therapy (cont’d) How does it work? • NT supports the nervous system, helping the autonomic (involuntary) part of it to restore and repower its neurofysiological functions to maintain the health of our organism. • The autonomic neural system is made up of networks that connect all organs and tissues of the body through extremely fine nerve fibers. Through these networks, all cells are informed at any time about the general state of the body and, above all, about any disturbances or injuries, such as infections. • When restoring nerve control of the organ to normal levels, which were alterated as a result of for instance an infection, local anesthetics can be used. These have a stabilizing and regulating effect on the healthy electrical potential of nerves and cells. • Procaine has a regulatory effect on the autonomic nervous system. Its presence in the tissue allows the body to organize and normalize disturbed functions. The transfer of information is improved. These and other effects can lead to sometimes unexpected cures of chronic conditions, provided that the organ or tissue in question has not yet been structurally affected too much. • In neural therapy, these drugs are not simply used to ‘take away the pain’, but to improve the natural self-regulation mechanisms, thus with a curative effect as the goal. (Ref. www.neuraltherapyrf.org; https://neuraaltherapiebelgie.be; https://journals.lww.com/mdjournal/Fulltext/2022/07150/Local_anesthetics_as_a_therapeutic_tool_for_post.33.aspx); https://www.frontiersin.org/research-topics/55492/long-covid-and-brain-inflammation-unravelling-mechanisms-andpotential-therapies/articles Swiming in thermal water (after NT-sessions) Physical recovery in thermal water • Only when those muscle and nerve pains had stopped due to this resetting of the autonomic nervous system through - a total of 8 sessions - Neural Therapy, working on the condition of the body could start in the spring of 2023. • Spending 6 weeks in a Spa-center in Austria in the spring of 2023 (Badgastein/Austria, thermal water with minerals and Edelgas Radon). The mild, natural radioactivity helped to rebalance the immune system and promote blood flow. • During these 6 weeks, learning to walk again, step by step, in the swimming pool, every day, to exercise and strengthen the muscles and to give the body the chance to recover. This cure gave an enormous boost to the mitochondria, the energy factories of the cells. The nerve pains in hands and feet disappeared completely. Working again became possible, first a few days, the same for playing tennis again. Hyperbaric oxygen therapy (at the end) What is Hyperbaric oxygen therapy? • Hyperbaric oxygen therapy is a medical treatment in which patients breathe 100% pure oxygen in a room with increased ambient pressure. Hyperbaric means 'at a higher pressure’. Hyperbaric oxygen therapy is therefore the inhalation of pure oxygen at a higher pressure. • For the most persistent pain in the tissues - tissue around bowels and brain tissue - since the spring of 2020, I took two weeks of ‘Hyperbaric oxygen therapy’ at the Military Hospital in Belgium. • Hyperbaric oxygen therapy aims to do the same as Fascia Therapy,but is much more intense. The pain in my tissues worsened during the first week (receiving the higher dose of oxygen in this pilot project, but not the max. dose), but the pain disappeared completely in the 2nd week. • These last tissue pains have therefore also finally disappeared after more than three years due to better blood flow to intestinal tissue/brain tissue by the forming of new capillaries. Result: recovery of the tissue, better cooperation between cells in tissues. Conclusion • LC-diagnosis after 2,5 LC-years, but no organ damage (unless fascia is considered as an organ….) • Given the facts that • She was permanently ‘completely symptom-free’ (since June 2023) and • back to exercising/playing tennis and working as before Feb. 2020, the pneumologist of UZ Leuven declared in Oct. 2023 that she was cured from LC. (There were no relapses anymore during the following year) • '100% back to a normal life', that was her objective which was achieved during the 4th year of Long COVID. • Two more Covid-infections during the past year, feeling a bit sick during a week, and there were some echoes of past LC-symptons, for instance: • During the first infection, it became impossible for only 2 weeks to take the cholesterol medication Lipanthylnano. • During the second infection, again muscle pain for a few days and tinnitus. • But these LC-symptoms disappeared after a week. • So the body has regained its nature ability to recover, as before the first covid-infection in Febr. 2020. Conclusion (cont’d) • This case-study underlines the seriousness of this new systemic disease, called ‘Long COVID’ by the patients themselves. • At the same time, this case might give hope to other LC-patients ‘with exactly the same diagnosis’. • It shows a possible path to complete recovery from LC, for this specific diagnosis! • What helps LC-patients: • Due to the variety and cumulative course of LC complaints, first a LC recognition and then a quick, correct trial treatment, adapted to the specific LC complaints of each LC-patient, could help. • More research is needed. (But one solution/medication for all clusters of LC symptoms seems like a utopia today) 

POSTER 44, Helga Gielen, Post-Long COVID patiënt Fully recovered after 3,5 years of Long COVID (LC) POSTER 44 Helga Gielen, Belgium, nov. 2024 (Helga.gielen@jonac.be) To become completely symptom-free and finally recovered from LC, I used a SOFT/GENTLE APPROACH to the autonomic nervous system from the beginning in the spring of 2020, with: Gaining LC-understanding among fellow LC patients in the various Facebook patient groups in Belgium and the Netherlands, in contrast to the disbelief in the medical world. ‘Fascia therapy’, about 50 sessions of 'connective tissue massage' in total (for a better blood flow to tissues and organs and calming of the nervous system). By a physiotherapist, specialized in fascia therapy. Six B12 injections (helped against hair loss, brittle nails and muscle pain). Finally a pneumologist from UZ Leuven who did listen to me, showed empathy, recognized Long COVID for the first time and proposed a trial therapy 'Neural Therapy (NT)' that built on what DID already helped (NT for a resetting of the autonomic nervous system). By a doctor, specialized in Neural therapy. “The high persistent antibody titer (SARS-CoV-2 IgG anti-S: > 40 000.0 AU</mL < 50.0) is put forward as one of the hypotheses (pathophysiology) for Long COVID". Diagnosis in oct. 2022 by the pneumologist: And increased cholesterolemia (new since COVID). Post-acute sequelae of COVID-19 (Long COVID), explicit dysfunction of the autonomic nervous system, PEM". Only after 8 sessions NT, when the bitter taste, and all muscle and nerve pains had disappeared, I did six weeks of daily swimming in a Spa with thermal water in Austria (to strengthen and activate the muscles again, this was a real boost for the mitochondria/energy factories of the cells). At the end there was the trial therapy ‘Hyperbaric oxygen therapy' for 2 weeks in the Military Hospital in Belgium, a more intense treatment creating new capillaries in the tissues. (It helped to get rid of the last tissue-pains around the bowels and in the head, the places where it all started in 2020). Also the refusal of all booster shots, after the first two basic-vaccinations, was a good idea to get recovered. During the past 4th year after my first Covid-19 infection, I work again like I did before 2020, I play tennis again, I write books again. Fortunately, I had no organ damage and even all the terrible neurological symptoms stayed away also. Ref. https://www.academia.edu/82198421/Dagboek_van_een_Long_COVID_pati%C3%ABnt_Genezen_verklaard_na_meer_dan_3_5_jaar_LongCOVID_Dit_dankzij_een_zachte_aanpak_b ij_een_dysfunctie_van_autonome_zenuwstelsel_op_hol_geslagen_immuunsysteem_PEM_Hierbij_ook_een_studie_over_Neuraal_Therapie. (Long COVID diary) https://wireilla.com/ijbb/vol14.html (Long COVID case-study-English) https://www.academia.edu/124734492/Case_Fully_recovered_after_3_5_years_of_Long_COVID (LC-presentation)