TLC – Treat Long Covid – Conference Day One…

All notes below are thoughts expressed during a Long Haul Conference on 6.19.21. Please consult a physician before acting upon any of the information presented below. Notes may be incomplete. Please double check notes with video, when that is made available.

Dr. Bruce Patterson — Covid Long Haulers & IncellDX  

• Immuno Watch App coming out in a month to track symptoms, etc. 
• Immune System Dysfunction can occur when virus not cleared
• IncellKine Kit can measure cytokines and chemokines
• CD14-CD16% shows increase in monocytes
• CD19 shows B cell increase
• CD40, VEGF show vascular inflammation
• IFN-Y & IL-2 important Long Hauler markers
• There is now a lab in Chicago (and I believe Colorado) doing the IncellKine testing
• 6,000 tested so far and Dr. Patterson and his cohort are treating 50-100 Long Haulers a week
• Register on www.covidlonghaulers.com
• There is now a code for insurance reimbursement for Telemedicine
• Pushing for more funding for those who cannot afford
• Long Haul Covid centers around vascular inflammation
• CD14+-CD16+ elevated in Long Haul Covid means antigen presenting and monocytes scavenging
• CD14Low-CD16+ means antigen present, associated in some way with vascular and endothelial systems
• CCR5^ (CX3 and CR1 ???) less Ace2, CD14+-CD16+
• Cells might not be infected anymore, monocytes are probably scavenging endothelial cells that contain SARS2 protein
• Find these monocytes in Long Haulers up to 15 months past initial infection
• Covid protein stimulating immune response
• Protein can cross the BBB (blood brain barrier) and it binds to endothelial cells and causes vascular inflammation
• CD14Low-CD16+ S1 protein activating immune system, vascular inflammation — Maraviroc for CCR5^, Statins interrupt fractalkine receptor
• S1 protein confirmed
• Inhibit non-classical monocytes by binding
• Angiogenesis = VEGF^ 
• Vasodilation may = head fullness, headaches/migraines
• Monocytes mobilized by exercise
• Blood vessels inflamed, systemic issue, nothing more systemic than blood vessels
• Reservoirs of Covid form during acute illness which probably accounts for many Long Haulers, immune system disrupted
• Virus can be active despite negative nasal swab (can be somewhere else in the body)
• Had one patient RNA positive for the virus at 15 months (virus may not be replicating though)
• Aggressive treatment with initial infection would help
• Believes Borrelia (Lyme Disease) protein membranes scavenged by monocytes possibly for years, believes this may cause Chronic Lyme, no Lyme to be found — (NOTE: Having had Chronic Lyme and managed a clinic that was very Lyme centric, I would disagree that there is no Lyme active, as I reacted to antimicrobial treatments and they eventually gave me my life back after 10 years (when I found the right one). I even feel that Covid is active still as the same areas keep being affected for me. If the protein was just circulating wouldn’t I be affected all over instead of very specific spots? Maybe the virus and Lyme are just really hard to find in testing. I don’t know, food for thought. I think Dr. Patterson is great. He’s doing some amazing things, but if he experienced this stuff like I have, I wonder if he would take a different viewpoint, despite the testing. Both Lyme and Covid are quite complex, so anyone trying to get to the bottom of either of these things deserves a lot of credit for that massive undertaking, and stressful undertaking.)
• Testing will be available soon in Europe for cytokines & chemokines — Pilot is being done in Madrid

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Dr. Syed Mobeen — Drbeen Medical Lectures on YouTube & drbeen.com

• Dr. Been is a software engineer in addition to being a doctor
• Works with FLCCC
• Early aggressive treatment would help
• Likes statins, steroids, Luvox (Fluvoxamine), and Ivermectin
• Possibilities: Viral Hit and Run causing immune dysregulation — RNA Less Viral Debris (Proteins), monocyte repair calls for eating up of broken tissue, antigens, etc. — Virion Debris persistence in other tissue, after RNA cleared out — MCAS starting up or unmasked — Macrophage Activation Syndrome (MAS), non-classical monocytes
• Multi-system issue — Ivermectin can’t cross BBB
• Sometimes temporary improvement with Ivermectin, helps with inflammation
• Ivermectin 0.2mg/kg to 0.4mg/kg of body weight
• 3 out of 100s of Dr. Been’s patients became Long Haulers
• Correct vitamin levels important
• Luvox 50mg 2x a day for 1-2 weeks (NOTE: a lot of Long Haulers start slow and build up. I had some side effects, so I’m glad I did, but they went away after a few weeks) — use if you have neuro symptoms — can cross BBB — not being used for psychiatric reasons by Dr. Been — Sigma 1 mechanism, anti-inflammatory for neuro
• Ivermectin taken 5 days then weekly for 2 months
• Ivermectin disrupts or binds with spike protein, changes macrophage and monocyte behavior (NOTE: For everyone’s understanding below is the definition of a monocyte and macrophage)

Monocytes are the largest type of white blood cells and play an important role in the adaptive immunity process. Monocytes typically circulate through the blood for 1–3 days before migrating into tissues, where they become macrophages or dendritic cells.

Macrophages are monocytes that have migrated from the bloodstream into any tissue in the body. Here they aid in phagocytosis to eliminate harmful materials such as foreign substances, cellular debris, and cancer cells.

• No Ivermectin for those under 2 years old, pregnant, or compromised BBB
• If dizzy then reduce dose and move to evenings
• Lymphatic Massage (around neck/head) and Spinal Pumping can reduce neuro symptoms
• Pulse steroids for pulmonary system
• If Fluvoxamine (Luvox) makes symptoms worse think MCAS
• Steroids 0.5mg/kg for days, 0.25mg/kg for 5 days, 0.12mg/kg for 5 days (taken in am) — may have to repeat after a month
• If bounce back to baseline symptoms after steroids go to Ivermectin or Fluvoxamine
• For MAS (Macrophage Acr — Take Vit C 500mg 2x a day, Omega 3 4gm/day, Atorvastatin 40mg/day, Melatonin 2-10mg at night (increase over time), D3 2,000-4,000 IUs Daily
• MCAS (Mast Cell Activation Syndrome) poked by Covid or unmasked by Covid
• For MCAS, Type 1 Antihistamines: …. Type 2 Antihistamines: …. Mast Cell Stabilizers: …. LDN & ….
• FLCCC.net
• Majority of patients feel worse with vaccine (as per Dr. Tina Peers)
• Conjecture as to why vaccine helps some and has a negative impact on others — 10-20% seem helped possibly because immune system not active enough to clear out viral debris and immune system get boosted to help clear that — Negative impact may be because vaccine produces spike protein, causes non-classical macrophages, spikes stay causing Long Haulers because of the vaccine

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Dr. Lawrence Afrin — Mast Cell Activation Syndrome Expert

• MCAD (Mast Cell Activation Disease)
• Allergic diseases = allergy + inflammation
• Mastocytosis = MC neoplasia (abnormal growth of tissue) + allergy + inflammation
• MCAS (Mast Cell Activation Syndrome) = inflammation + allergy + aberrant growth (Dystrophism)
• Case Study (non-Covid and Long Hauler): woman in her 30s notices migratory rash — over time has fatigue, itching, vertigo, falls, evals negative — eventually mildly elevated hemoglobin, polycythemia vera (PV) diagnosed incorrectly — steadily worsened with migratory GI symptoms, labile BP/pulse (POTS), poor healing, episodic shortness of breath, frequent upper respiratory “infections” with no infectant ever found, rashes to all antibiotics
• Serum tryptase, urine N-methylhistamine normal, marrow and rash biopsies show no mastocytosis
• sl. ^ urinary prostaglandin D2
• EGD/colonoscopy normal, but biopsies taken anyways — all textbook normal on H&E, but on IHC …
• CD117 staining showed MCAS
• Diagnosis was “atypical mastocytosis” —- Low-dose Imatinib begun, 100mg/d for 1 week then 200mg/d — First week tolerated fine, but no response and then, on waking the morning after the fourth dose of 200mg all symptoms were acutely gone, improvement sustained more than 12 years now, all labs normalized, and resumed exercise and full time work
• Case Study (non-Covid and Long Hauler): woman in her 50s with worsening fatigue and severe anemia — diagnose with idiopathic pure red cell aplasia (PRCA confirmed) — needed 3 units of blood every 2-3 weeks to maintain merely half-normal hemoglobin (Hgb) level
• 5 years later: ROS pan -+, uPGD2 ^^^, diagnosed with MCAS
• Antihistamines: Good Hgb ^ in 4 weeks, no transfusions
• Imatinib 200mg/d added: Hgb normalized in 6 weeks
• “PRCA” relapsed 1 year later — tried cromolyn and in remission again in 4 weeks
• Case Study “Burning Mouth Syndrome” (non-Covid and Long Hauler): woman in her 50s with new constant burning pain throughout GI tract, pain score 10/10 in mouth
• Extensive evaluations only found mild chronic stomach inflammation and finally, a 100 fold elevated chromogranin A (CgA) (wasn’t on PPIs [Proton Pump Inhibitors])
• Top 5 US NE Cancer experts unanimously thought because ^^CgA that must be due to NE Cancer, so keep looking
• 5 years later — revisited old gastric biopsy with CD117 staining, showing ^^MCs (but not in pattern suggestive of mastocytosis) — diagnosed with MCAS
• Antihistamines/NSAIDs caused pain to decrease to 1/10 overnight
• MCAS found in every subsequent “idiopathic” BMS patient Dr. Afrin has examined — different abnormal MC mediator patterns in blood/urine in different patients — ^MCs in GI tract biopsies when checked — All responding to various MC-targeted therapies

TO BE CONTINUED

Luvox, Luv It – My Brain on Fluvoxamine

It’s been a brief period of time I’ve been on Luvox, as I call it so I don’t butcher the spelling and pronunciation of Fluvoxamine, but the benefits have been profound. A little more than a week is how long I’ve been taking this SSRI drug, but my brain fog, neck, and head pain/discomfort have improved dramatically after months of stagnation. Mood and functionality are also better. The proof is in the pudding as I’m writing this blog post right now after weeks of not being able to use my brain as much as I needed and wanted. Writing a blog post without being on Luvox would be a daunting task!

My dosing went as such: started at 12.5mg and worked up to 100mg in a week, paused it briefly (this is a drug you generally want to taper off is my understanding, just fyi), and am now taking 50mg a day split into two doses, morning and night. The number of things I’ve done that haven’t helped much or at all I can’t count on 20 hands, but Luvox was a game changer quickly (for me and many other Long Haulers, but not everyone). 100mg seems to be the magic dose, but I am going slow with it because of potential side effects such as: lose of appetite, increased anxiety, heart fluttering/uncomfortableness, fatigue, etc. There are also a number of contraindications with Luvox. If you have brain fog, neck pain/stiffness, and brain nerve pain it may be worth it to ask your doctor about the use of this drug. At this juncture, it’s being fairly widely implemented for Long Haulers (and acute patients as well). It’s in favor with some of the top Long Haul Docs as well.

I’d say “I’m Luvin’ It” about Luvox, but I don’t want to get sued by Mickey Ds, so I’ll simply say, so far … I luv it.

Update to follow!

Covid Long Hauler Discussion with Dr. Bruce Patterson, Dr.…

All notes below are thoughts expressed during a discussion with Dr. Bruce Patterson. Dr. Yo, and Dr. Bream on 4.11.21. Please consult a physician before acting upon any of the information presented below. Notes may be incomplete.

• IL-6 and IL-8 cause muscle and joint pain 
• Some people 3 months out may have active covid with rna – decreased CD8 
• CD4 low with hiv
• CD8 low with covid — single digits, but should be about 30 
• 25% of Long Haulers still have low CD8%
• 4,500 patients registered at http://www.covidlonghaulers.com and are being tested
• Dr. P has treated 100+ Long Haulers
• Incredible immune response seen in LHers
• Elevated Rantees (71% of time) – can happen in any organ
• Blocking CCR5 important in active covid and for Long Haulers 
• CCR5 also works for another reason (published — ???)
• Rantees is elevated in active COVID and LHers 
• IL-2, IFN-y (anti-viral immune responses) – low in novel Covid (because it’s new to body) 
• LHers – high IL-2 (fatigue, burning, brain fog, almost anything) and IFN-y 
• VEGF (fatigue) – most important brain fog marker
• 79% of LHers have elevated VEGF – possibly due to vasculitis, micro clots, damage to endothelium  
• Ivermectin and steroids for IL-2 and VEGF 
• 9One subject was 95% better with Maraviroc (went from a LHI of 11.4 to 1.3)
• 50% better with Ivermectin and same with Steroids 
• 50/50 for Maraviroc as well 
• Fluvox may help with brain fog and help with blood clots 
• Covid protein found in LHers in a cell type that migrated from the brain to different parts of the body —- easily passes BBB
• This cell type is mobilized by exercise (possibly why people feel worse after exercise, Dr. P has seen this happen time and time again with Long Haulers)  
• This cell type expresses CCR5
• Could inhibit these cells with LL or Maraviroc 
• $360 for blood panel Dr. P offers at his website above – could be reimbursed by insurance  
• 14 markers tested, plus severity score, LHI, and put in algorithm 
• Rantees attracts macrophages and T cells (like a bee to honey)
• CCR5 regulated by cytokines 
• CCR5 expression on immune cells going crazy because of cytokines 
• Women have better immune systems than men, higher auto-immune rates
• Dr Yo loves Dr. P 
• All advocacy groups led by women (Not mine Dr. P)

Covid Long Hauler Q&A with Dr. Bruce Patterson &…

All notes below are thoughts expressed during the above YouTube Q&A with Dr. Bruce Patterson on 2.18.21. Please consult a physician before acting upon any of the information presented below. Notes may be incomplete.

• Dr. Patterson’s website www.covidlonghaulers.com
• Long Hauler Index (LHI) was computer created – 0.75 Normal
• Acute Covid patients have lower scores than Long Haulers
• 50-66% of Long Haulers have elevated Rantes
• IL-2 high, INY-y high, and CCL4 low in Long Haulers
• CCL4’s key immune function is macrophage and nk cell migration
• Not many differences in demographics regarding Long Hauler Indexes
• LHI higher the worse the symptoms
• On Dr. Patterson’s Twitter he talks about Cytokines relating to specific symptoms
• 79% of Long Haulers have elevated VEGF
• VEGF relates directly with the symptoms of burning, brain fog, and neuropathy
• Maraviroc helps decrease VEGF and brain fog
• Low Dose Steroids for at least 2 weeks in combination with Ivermectin or Maraviroc – 85-90% respond in combo
• TNF-a, IL-6, VEGF, and Rantes all can be modulated with Maraviroc
• CD8 low in severe critical Covid
• CD4 & CD8 seen in viral or cancer response
• 25% of Long Haulers have low CD8 8-10 months after initial infection
• CCR5 is the quarterback of the immune system
• Delta 32 deletion in 50% of population, 20% mild to moderate, 25% of Long Haulers, and 4% of severe Covid
• Lower doses of Maraviroc for these people with Delta 32 deletion
• Children: Kawasaki Disease, Rantes high
• Drugs should be safe with children, high dose of steroids could be bad for children
• Gut has 98% of immune cells
• Dormant/reactivity – indicative of reactivation because dominance of type 1 cytokines
• Reactivated Epstein Barr Virus (EBV) often comes along with elevated B Cells
• EBV goes with swollen spleen, lymphs, and exhaustion
• Some Long Haulers have herpes virus(es) reactivate
• Maraviroc is neurotropic, it crosses the blood brain barrier (BBB) thus that and Leronliamb both get to the brain
• It’s possible there are Covid viral reservoirs
• Had trouble finding HIV in testing at first as well
• Hepatitis C, HIV – Look at CD14, CD18 and it likes to hide in macrophages
• Eventually with Covid we should be able to tolerate antigens, remove remaining particles and virus, and Dr. Patterson thinks the virus might not be replicating in LHers
• HIV has tremendous mutation rate, Covid doesn’t
• Covid may not mutate as much as HIV because there aren’t anti virals for it and/or it doesn’t need to because it’s a novel virus to peoples’ immune systems
• Covid tests are less than perfect (may have to repeat to get a proper result, and even then)
• Could be that 30%+ do not build antibodies to Covid
• Long Haulers have been complaining Quest and Labcrop cytokine panels are not equivalent to IncellDx panel
• There are reasons for this, but what you want to do is use the same lab as previously and ideally IncellDx’s as it has higher sensitivity and the sample isn’t traveling from lab to lab
• Covid Long Haul symptoms indicative of immunological abnormalities
• Dr. Patterson will have 2-3 partner labs up and running soon to analyze cytokines and chemokines (1 lab also operates in Europe)
• Dr. Gaylis wants to do testing as well (leader of Leronlimab trial)
• Dr. Patterson prefers precise medicine approach
• VEGF high, Vasculitis
• Believes hyper inflammation is causing false positive auto immunity and is causing auto reactive antibodies
• With real auto immunity he would be concerned with using CCR5 antagonists and steroids
• Does not believe steroid dose packs are very helpful, prefers 5-10mg of steroids consistently for 2+ weeks
• The blood panel might help other people with post infectious issues in the future
• Doesn’t particularly like immune modulators for auto immunity
• Dysautonomia markers seem to be positive maybe 30% of the time for people with Covid, hyper inflammation may be causing a false positive
• App is on the way (in 2-3 months) to track your vitals and to get real time information on someone with Long Haul Covid (BP, VHR, etc.)
• Has data to show that disability insurance is needed for those with Long Haul Covid
• Has data to show how people are improving with his treatments (retesting blood)
• There’s no magic pill – likes using combinations – steroids, Ivermectin or Maraviroc and steroids, etc.
• Has a favorable opinion of TA1 (peptide)
• Believes toolbox of therapies will grow in time
• Dr. Parikh can see patients in NJ or NY
• Dr. Yo and Dr. P have interest in Fluvoxamine
• Low Dose Naltrexone (LDN), anti histamines, and Niacin all can somewhat help LHers
• Dosing tricky with Ivermectin horse paste — Dr. Yo urging people to be careful getting Ivermectin and other drugs through unconventional means
• They can help with finding you doctors to prescribe helpful medication (check their website)
• 30 patients have taken Maraviroc and none of them have had liver issues thus far (Maraviroc has a black label warning)
• Didn’t believe stem cells were warranted based on abnormalities
• Has a favorable opinion of IVIG – IVIG can help with auto immunity and respiratory
• Dr. Yo was warning about over testing and spending too much money on that
• Maraviroc is 2 pills a day
• Cytokines can go all over, even places where not needed
• Chest pain often Pericarditis
• TNF-a (depression) and VEGF (burning, brain fog, and neuropathy)
• IL-6, TNF-a, and VEGF should all go down with Maraviroc and Leronlimab
• Without high Rantes would not prescribe Maraviroc or Leronlimab
• CD40 elevated in up to 50% of Long Haulers, micro emboli may exist
• 85-90% of patients see response in some combination of Ivermectin, steroids, and Maraviroc
• Doesn’t expect this to be a lifelong issue that you have to take drugs for
• Sometimes they see people improved with the above combination of drugs and stay there or they come off of them and revert
• Lab retests will tell how long the drug course duration will be
• Fairly convinced Covid can be persistent
• Publications can be found on website under resources
• Long Haulers who get 2nd vaccine shot seem to generally feel bad after it
• Believes 25% of LHers with Delta 32 deletion being reinfected wouldn’t have Covid as severely
• Leans towards Long Haulers not getting vaccine (nervous about adding fuel to the fire, being cautious)
• If you do get the vaccine, be prepared for potentially having a major reaction

Introduction

My name is Devin. I’m a Covid Long Hauler, despite my best efforts. Since March 14, 2020 I’ve been sick riding the “Corona Coaster”, as one of my fellow Long Hauler friends calls it. The term doesn’t quite do it justice. Two years prior to contracting Covid, I had suffered from Chronic Lyme Disease for about eleven years. Those who suffer from Chronic Lyme also call that experience a roller coaster, but I’d take eleven years of Lyme Disease over one year of Long Haul Covid without batting an eye. There’s no doubt this has been the most challenging year of my life … and I’m still unwell. I’ve lost my job, been mostly housebound (except really for medical appointments), spent an obscene amount of money trying to get better, and have been quite sick the vast majority of those 365 days, with little quality of life. If my violin strings were all in working order, I’d get my fiddle out and play it for myself.

Pre-Covid life saw me as the manager of a wellness center with an integrative medical practice operating inside of its space that had a focus on the chronically ill, for four years. The opportunity for that position came about because of my Lyme Disease struggles. My Long Haul Covid issues prompted me to think, how can I turn this into a positive, and continue doing what I came to love, helping people in need of help? Thus, I formed Covid Castaways and created this website in order to do just that.

My intent is to support those struggling to find help, whether it’s aiding in finding them practitioners, or disseminating important information, or raising money for those who need it. Covid Castaways wants to do all it can. There will be more to come down the road, but for now, even if one person benefits from this site, I know my efforts matter. I hope to keep progressing in my wellness and get to a more stable point, so I can put all the energy that I’m used to having into this great cause.

To all those fighting Covid or Long Haul Covid, keep your optimism. You can recover as I’ve seen many improve. It may feel hopeless at times and you may be frustrated at the lack of support you’re receiving, but there is a light at the end of the tunnel … and I’m using that analogy in the good way. We’re in it to win it, for the Long Haul. What other choice do we have?