FYI research on Long COVID

@pattig09 I went a place today that advertised Long Covid treatment pPT and medication.
I found it a big mistake. Only pT was given , even when they advertised treat ment fr the effects as well as muscle weakness. And pain . Now I’m stuck because Medicare is paying for Four 1 hr
Sessions per month for 4 weeks , or 1/2 hr Pt sessions wise aweek.
They said medication. Nearer me,I could have Pt, with the original place that has been treating me.

@pattig09 I went a place today that advertised Long Covid treatment pPT and medication.
I found it a big mistake. Only pT was given , even when they advertised treat ment fr the effects as well as muscle weakness. And pain . Now I’m stuck because Medicare is paying for Four 1 hr
Sessions per month for 4 weeks , or 1/2 hr Pt sessions wise aweek.
They said medication. Nearer me,I could have Pt, with the original place that has been treating me.

@kyrazpollet There is much to learn about long covid. I had to become my own researcher in this mysterious invader. There are 1,000s of posts here at the Mayo Clinic support network and I've read them all. It has taken volumes of time but it has led to paths of recovery. My first success came when I found one NP that listened to my entire experience and made the decision to join the journey with me. She wasn't an expert in covid but she was open to finding answers and solutions. She said she has learned a volumes from my research. I say, she was the angel sent to my aid for this journey. I've looked for physicians in this journey that work with me as my NP does. It takes time to tell the story of how symptoms impact life but it takes a medical professional that also wants answers for their patients that suffer. I've stayed on course for 3 years. This time spent led to solutions that have worked and I've posted them in the the Mayo Clinic groups were sufferers have similar or same symptoms as me. The key turning point that lead directly to finding solutions was the question I asked my NP at about the 2 year period of my LC: What are my T-Cell counts revealing about my auto-immune systems? The second point of discovery for solutions came when my dermatologist who was also an LC sufferer saw her symptoms in my physiology and she knew how to treat me.

@pattig09 Same here. When I got sick in 2022, I had to do my own research as my doctor and even the rheumatologist did not really know anything and I even had the rheumatologist roll her eyes at me when I suggested it was Long COVID. The thing that first jumped out at me in my blood work was the reactivation of Epstein Barr Virus. I never remember having it in my life. Apparently I did. I was never a person that got sick. Never got a flu shot, never got the flu. Now, I know that this is an autoimmune disease. I truly believe all the symptoms are caused by chronic inflammation. I used to run every morning, lift weights and was in the best shape of my life. Now, even mental exertion can cause malaise and fatigue, tinnitus, edema and other symptoms. I have to do what I can one day at a time and I do get really angry about it, but I try to look at what I am grateful for. Today I woke up as if I had been heavily sedated. I fell asleep yesterday around 7 and woke up around 7 this morning. That is a lot of sleep and yet I did not feel rested. I will do what I can today.

@diverdown1 I think of Long Covid as the silent atomic structure that has taken over my immune system by tricking my auto-immune response T-Cells. It's not that I still have Covid, its that the cells normally functioning ACE 2 and Nicotine receptors remain blocked by bits of the Covid spike protein. 2 doctors in California have found 64 'Covid remnants (all different under the microscope) still attached to receptors in fat cells of LC sufferers. Akiko Iwasaki, Sterling Professor of Immunobiology at Yale School of Medicine (YSM) is doing research on what is referred to as post-vaccination syndrome (PVS) specifically in LC patients that took a vaccine who within weeks developed common chronic symptoms of PVS including exercise intolerance, excessive fatigue, brain fog, insomnia, and dizziness. When I read that their research started with blood work and a deep dive into the immunity systems of LC sufferers, I had the talk with my NP about my T-Cells and T cytotoxic cells, ratios and absolutes including CD 3, CD 8, CD 4, CD 16, CD56. My CD4+ numbers showed my immune system was fighting for my life but no other blood work revealed a single reason why. One thing that caught my attention was I had a sudden appearance of fatty cells in my liver. I don't eat foods that would cause this and I don't drink alcohol and it was a first appearance in my normal 40 years of liver enzyme tests. While this liver issue left us both searching for answers or even leads, the work being done in California on 'zapping' fat cells in the body with green laser light therapy became my next path to study. Was green light therapy used in clinics for reducing fat in the stomach areas and inflammation in the prostate lead to options? Could the fat build up in my liver be treated with laser green light to 'release' things attached to it like the Covid spikes at the ACE2 and the Nicotine receptors? I was successful in following the leads my T-Cells presented. The Nicotine patchs did restore smell and taste, an indicator that the cells being held hostage in my body by Covid spike protein bits could let the go. I have a test in a week to see where my T-Cells are now 8 months later. Have you had your doctor do a work up on your T-Cells?

@diverdown1 I think of Long Covid as the silent atomic structure that has taken over my immune system by tricking my auto-immune response T-Cells. It's not that I still have Covid, its that the cells normally functioning ACE 2 and Nicotine receptors remain blocked by bits of the Covid spike protein. 2 doctors in California have found 64 'Covid remnants (all different under the microscope) still attached to receptors in fat cells of LC sufferers. Akiko Iwasaki, Sterling Professor of Immunobiology at Yale School of Medicine (YSM) is doing research on what is referred to as post-vaccination syndrome (PVS) specifically in LC patients that took a vaccine who within weeks developed common chronic symptoms of PVS including exercise intolerance, excessive fatigue, brain fog, insomnia, and dizziness. When I read that their research started with blood work and a deep dive into the immunity systems of LC sufferers, I had the talk with my NP about my T-Cells and T cytotoxic cells, ratios and absolutes including CD 3, CD 8, CD 4, CD 16, CD56. My CD4+ numbers showed my immune system was fighting for my life but no other blood work revealed a single reason why. One thing that caught my attention was I had a sudden appearance of fatty cells in my liver. I don't eat foods that would cause this and I don't drink alcohol and it was a first appearance in my normal 40 years of liver enzyme tests. While this liver issue left us both searching for answers or even leads, the work being done in California on 'zapping' fat cells in the body with green laser light therapy became my next path to study. Was green light therapy used in clinics for reducing fat in the stomach areas and inflammation in the prostate lead to options? Could the fat build up in my liver be treated with laser green light to 'release' things attached to it like the Covid spikes at the ACE2 and the Nicotine receptors? I was successful in following the leads my T-Cells presented. The Nicotine patchs did restore smell and taste, an indicator that the cells being held hostage in my body by Covid spike protein bits could let the go. I have a test in a week to see where my T-Cells are now 8 months later. Have you had your doctor do a work up on your T-Cells?

@pattig09 I just got this in my email.
https://drive.google.com/file/d/1FU8zSE7T7YbJe5RL-OauAtooBuNEOjsk/view

@diverdown1 I think of Long Covid as the silent atomic structure that has taken over my immune system by tricking my auto-immune response T-Cells. It's not that I still have Covid, its that the cells normally functioning ACE 2 and Nicotine receptors remain blocked by bits of the Covid spike protein. 2 doctors in California have found 64 'Covid remnants (all different under the microscope) still attached to receptors in fat cells of LC sufferers. Akiko Iwasaki, Sterling Professor of Immunobiology at Yale School of Medicine (YSM) is doing research on what is referred to as post-vaccination syndrome (PVS) specifically in LC patients that took a vaccine who within weeks developed common chronic symptoms of PVS including exercise intolerance, excessive fatigue, brain fog, insomnia, and dizziness. When I read that their research started with blood work and a deep dive into the immunity systems of LC sufferers, I had the talk with my NP about my T-Cells and T cytotoxic cells, ratios and absolutes including CD 3, CD 8, CD 4, CD 16, CD56. My CD4+ numbers showed my immune system was fighting for my life but no other blood work revealed a single reason why. One thing that caught my attention was I had a sudden appearance of fatty cells in my liver. I don't eat foods that would cause this and I don't drink alcohol and it was a first appearance in my normal 40 years of liver enzyme tests. While this liver issue left us both searching for answers or even leads, the work being done in California on 'zapping' fat cells in the body with green laser light therapy became my next path to study. Was green light therapy used in clinics for reducing fat in the stomach areas and inflammation in the prostate lead to options? Could the fat build up in my liver be treated with laser green light to 'release' things attached to it like the Covid spikes at the ACE2 and the Nicotine receptors? I was successful in following the leads my T-Cells presented. The Nicotine patchs did restore smell and taste, an indicator that the cells being held hostage in my body by Covid spike protein bits could let the go. I have a test in a week to see where my T-Cells are now 8 months later. Have you had your doctor do a work up on your T-Cells?

@brenda1956 Hi Patti. What is the website for the Covid Awareness month?