
Make ME Visible
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Make ME Visible
@makemevisible24
An initiative in India to spread awareness about ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) by a severe patient





Week 2 off Maraviroc - I got hit. Just the night after my last post, I started feeling dizzy, uncoordinated, and buzzy all over my body in a way I couldn’t control. The day after, I was feeling full-foot spasms again. They used to happen every day, but I haven’t noticed a single one since I got fully adjusted to Maraviroc. I knew something was up, and it wasn’t any chemical exposure this time. My dysautonomia was getting worse. On Tuesday, I woke up completely disoriented, shaky, nervous, and dreading that errand I was just about to go out and do. It’s like this electric current constantly permeated everything in my body now, no matter how I tried to stretch and move. Taking a beta blocker barely touched it. I left home hours later. Got on the bus and did a search for Maraviroc alternatives. Some people are born with genetic CCR5 inhibition, the same mechanism that makes Maraviroc anti-inflammatory. Surely there should be a natural compound that does the same? A forum thread popped out at me. There it was. A full paper! The herb is called Sanguisorba Officinalis and it seems to do something very similar to Maraviroc – possibly as an antagonist for the CCR5 receptor and virus bound to these receptors: sciencedirect.com/science/articl… Its other benefits include: (source: frontiersin.org/journals/pharm…) - Anti-inflammatory via reducing the production of cytokines - Reduces tumors via toxicity to cancer cells - Modulates neuroimmune signaling and neuroplasticity - Antioxidant effects - Antibacterial and antiviral effects across a broad range of species, including viruses such as Hepatitis B and coronavirus (and HIV) - Reduces chemokine inflammation, linked to neurodegenerative conditions such as Alzheimer’s, via CCR5 inhibition - Promotes blood clotting - Increases white blood cells - Lowers lipids and blood sugar levels Some of these are very Maraviroc-coded, but some are extra goodies. Its potency is not as great as that of Maraviroc, but better than most other herbs that have been in-vitro tested for their antiviral properties. After my errand, and not having regressed enough to stop being able to walk much like before, I hit Chinatown. At least here, it seems that most herb shops have it – I snatched up about 10 days’ worth for $5 on my first try. I also picked up a herb grinder, then dug out my slow cooker at home, and let it do its thing for a few hours. I held my breath, crossed my fingers, and drank my first cup of the 3g decoction (a starter dose, on the lower end). It worked. Within two hours, I felt like I could control my body again. I could breathe, relax, and think clearly like I did just a few days ago. I would rate it as slightly less effective as half-dose/150mg Maraviroc. Same dosing schedule, likely a very similar half-life. Caveat: I’m using this as maintenance after the main repair was done. I’m not sure how good it would be for doing the intial Maraviroc protocol for Long Covid. I say it’s always best to go with something that has more research evidence, but when this is the best you can get... Just a heads-up: As an antimicrobial, it did give me SIBO die-off. It will be a lot of work, but I’m now feeling inspired to buy more herbs I take as supplements and prepare them myself instead of collecting plastic bottles. For me, there’s a beauty to this connecting with what heals you this way. P. S. I’m feeling very N=1 here. I can’t find a single account of anyone trying this – maybe someone else can try it, too, and share?

Week 3: Final Maraviroc for LC Replacement Protocol Sanguisorba Officinalis (地榆) 6g/day decoction Sophora bud (槐花米) 6g/day decoction Notoginseng (三七) 1g/day powder Shikonin extract 30mg/day I'm also still on Raltegravir and Truvada. Some of these change the absorption of medications, so you need to be very careful with spacing out your doses. Too tired and too busy this week to break down the components & why. Will post something later once I have time. Verdict after 3 days of doing all four: Alive and kicking, no neuropathy so far, no more abdominal cramps, MCAS symptoms reduced. What remains: transient pressure from behind the eyes, a really dull neck tension that usually happens at night & quickly fades. Mood is ok now🤞











