TLC – Treat Long COVID – Conference Day One Notes (6.19.21)

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 — (Still haven’t received complete video from the organizers)