Lilly Dee

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Lilly Dee

Lilly Dee

@LillyDeeeeee

ME. Just trying to research & navigate this illness. Loves birds. Former graphic artist. Posts are not medical advice, I have no idea what I'm doing.

Katılım Haziran 2025
128 Takip Edilen448 Takipçiler
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Lilly Dee
Lilly Dee@LillyDeeeeee·
My current regimen: -Elemental Diet (Physicians Elemental Diet) -Biofilm disruptors (Biofilm Phase-2 Advanced, Interfase Plus, NAC) -Binders (SBI Protect, Mega IgG200) -Antimicrobials (CandiBactin AR & BR) -Lactoferrin -Ultimate GI Repair -TB500 -Liver support(TUDCA,MilkThistle)
Lilly Dee@LillyDeeeeee

I've spent the last 2 1/2 months on an intense gut healing regimen. My goal is 6 months. I'm on the elemental diet, biofilm disruptors, binders & lactoferrin. Antimicrobials for 1st 6 weeks. It's working better than I could've hoped for, my gut hasn't felt this good in decades.

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Lilly Dee
Lilly Dee@LillyDeeeeee·
I've been slowly introducing food, probiotics & fiber for a month now. It was a little difficult at first, but it's going really well. I've always had issues with fiber, but my gut is handling it pretty good. Gentle, low fermentable fibers. Acacia, potatoes, white rice, kiwi, avocado. I'm handling probiotics. Florastor, a spore based probiotic & L. Plantarum 299v. I'm not bloating, in fact inflammation & edema has gone down even more since introducing the probiotics & fiber! This is new for me.
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Lilly Dee
Lilly Dee@LillyDeeeeee·
@Sam_B_79 I have an appointment coming up with my cardiologist concerning it! I talked with my other dr about it, and he said he would back me up discussing it with my cardiologist if she isn't interested. It might happen.
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Arden Gray 🇺🇸
Arden Gray 🇺🇸@Arden_2210·
Very tricky math question,try it carefully Only for mathematicians
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Jenny
Jenny@Jennnyyyyyy·
Crack the Pattern and find the next number 😏 Difficulty - Easy 😋
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Lilly Dee
Lilly Dee@LillyDeeeeee·
Great! Only 11 days left. It's been a long 6 months! I took a break with antimicrobials & then with biofilm disruptors for a month (but continued the elemental diet formula), but for this last month I've been taking everything, and I feel ok. I can't wait to eat food I'm starving 🫠
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Marco
Marco@Gmwetz·
Has someone with ME or Long Covid tried the full blown Goldner Protocol? (Not General auto immune protocol) I read about remission from 7 years of ME, remission of a patient with Lupus and remission of a patient with Sjögren syndrome
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Jenny
Jenny@Jennnyyyyyy·
What is the weight of Lion? 🤔 Difficulty - Medium Pro 🤠
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Jenny
Jenny@Jennnyyyyyy·
This is harder than it looks 😉 Difficulty - Extremely Hard 🤯
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🕸️Dr.T, PhD
🕸️Dr.T, PhD@chydorina·
I wonder what the chances are that a drug that could treat and even cure MECFS already exists? What the chances are that there are people in labs and government that know about it and are actually hiding and suppressing it. Not zero. Definitely not zero.
Tuki@TukiFromKL

🚨 do you understand what scientists just did to deafness.. researchers injected a modified harmless virus directly into the cochlea the spiral cavity in your inner ear.. carrying a working copy of a gene called OTOF.. the gene that transmits sound signals from your ear to your brain.. without it, your ear hears everything.. your brain receives nothing.. 10 completely deaf patients.. single injection.. within weeks all 10 could hear.. 10 out of 10.. here's what nobody wants to say.. cochlear implants cost between $30,000 and $100,000 per patient.. hearing aids sell for up to $7,000.. the global hearing industry is worth over $9 billion a year.. every year.. recurring.. because deafness has never been cured.. just managed.. one injection ends all of that.. and in 2018 goldman sachs analysts literally wrote this in a report about gene therapy.. "curing patients is not a sustainable business model" that's a goldman sachs equity research note.. sent to investors.. warning them that companies developing one-time cures were a risky bet because cured patients stop buying products.. the science to fix single broken genes has existed in research labs for years.. the same platform used here already cured a form of blindness in 2017.. cured spinal muscular atrophy in babies in 2019.. there are over 10,000 known single-gene disorders.. millions of people labelled "incurable".. the platform exists.. the proof is 10 out of 10.. the question was never whether they could fix it.. it's whether fixing it was good for business.

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Lilly Dee
Lilly Dee@LillyDeeeeee·
@chydorina Ok. I thought us being a burden on the system with disability and benefits would not serve them.
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🕸️Dr.T, PhD
🕸️Dr.T, PhD@chydorina·
@LillyDeeeeee Keeping us sick (and paying) is exactly the point. What does not serve them is curing us.
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Lilly Dee
Lilly Dee@LillyDeeeeee·
@I_need_a_razor I'm guessing probably during the high but you would suffer greatly from it. You definitely would be worse off afterwards. And lose more baseline.
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Living Ghost
Living Ghost@I_need_a_razor·
I wonder if a heroin high would override severe/very severe myalgic encephalomyelitis even for a brief time. Obviously the payback/aftermath would probably be horrific but is it strong enough to have a severe patient feel good/euphoric.
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Elijah Krings
Elijah Krings@Elijahkrings·
No matter how good your Leaky Gut protocol is, if there is ongoing exposure to toxins, there will be no healing Downregulation of intestinal stem cell (ISCs) proliferation & differentiation, driven by inflammation, gut-dysbiosis, intestinal immune dysregulation, microbial endproducts, loss of paneth cell signaling will compromise healin long term In studies of mycotoxin injury, giving binders to remove the exposure upregulated ISC function & regeneration of the epithelial layer The same will go for antimicrobial protocols needed to fully get hold of the problem at hand, if the goal is long term solution of your problem, without over-reliance on supplements Below is a list of support tools for ISC function (not exhaustive):
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Lilly Dee
Lilly Dee@LillyDeeeeee·
@Threadscenes Antony something. I can't make out the last karate kick
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Threadscenes🪡
Threadscenes🪡@Threadscenes·
Pronounce it slowly 😅 Very difficult
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Lilly Dee
Lilly Dee@LillyDeeeeee·
For years all I ever saw was a white & gold dress. I squinted my eyes while looking at it, and the dress turned blue & black. It's hours later and still all I can see is a blue & black dress. Without squinting.
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Lilly Dee
Lilly Dee@LillyDeeeeee·
@RzltzNotTypical @nextstepst I saw white and gold. Then I squinted my eyes and now I see blue and black, now I can't stop seeing blue and black.
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Results Not Typical
Results Not Typical@RzltzNotTypical·
@nextstepst Back when this was first going viral, I originally saw blue & black. But then as I was scrolling through the comments and stuff, my brain flipped it to yellow & white and ever since then I can't see blue & black anymore.
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Next Step ©
Next Step ©@nextstepst·
I’m an artist. I understand how light works. I know the dress is blue and black, I’ve ONLY ever seen it as blue and black… I cannot even comprehend how people see it as white and gold, I’ve NEVER been able to trick my brain into seeing it that way, I’ve never understood how people see white and gold, I thought for the longest time that people were making it up for attention or something. Idk if anyone else gets this. Seems like the majority of people are team White and Gold but I just genuinely don’t understand how. By: lucanbiswas17
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Liam's LC/ME Journey
Liam's LC/ME Journey@liamsLCjourney·
You know in police procedurals when they show the "conspiracy board"? Trying to solve this condition, I feel like I'm standing in front of my own, all day, with paper pinned up everywhere, pieces of string connecting all my different biomarkers back to research papers, then to different parts of my body, pacing back and forth furiously with my eyes shut, thinking as hard as I can with a somewhat-functional brain. And then the camera slowly zooms out, and in a homage to Raiders of the Lost Ark, you see that there isn't just one board, but a whole warehouse full of them, all with different biomarkers and different organ systems which I haven't even started on yet. As the camera continues to zoom out, left side of the screen partially dissolves to a giant anthropomorphic spike protein, laughing menacingly, like "you're never going to solve this, you FOOL." Fade to black.
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Naomi Harvey “PhD Witch” #WearAMask
@FatigueMe92484 It’s an absolutely impossible idea 🤦🏻‍♀️ The closest solution is to have pwME share houses so they pool the costs of heating/cooling, tax, rent etc and can share cleaners & cooks or other caring costs. But they can’t care for each other.
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MECFS, MCAS and PTSD
MECFS, MCAS and PTSD@FatigueMe92484·
I am moderate / mild and I don't have the strength or energy to take care of someone else. I barely have enough energy to take care of myself!
Rachel Blick@gymrat_bookworm

@mike_malaise We are going to need to have some sort of arrangement where people with moderate ME who can't work super demanding FT jobs but could do caregiving for people who are very severe could live with them.

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Romain
Romain@32Sfc46582·
Arnaud Denis, actor, living with myalgic encephalomyelitis. He developed the illness after receiving an implant and is planning his euthanasia in Belgium. Another French person who is going to die because of ME/CFS. "I suffer from severe myalgic encephalomyelitis, a neurological and immune disease, as well as ASIA syndrome, meaning that my body mounted a disproportionate inflammatory reaction in response to the implant." “I am too tired to feel anger, but I still carry a great deal of bitterness toward the institutional denial that I see reflected in too many victims. I still carry a great deal of bitterness toward the medical system, which allows patients not to be informed about complications related to the implant and not to be supported when those complications arise. I also feel bitterness toward the French judicial system, from which I expect nothing, absolutely nothing. I will say it until my last breath: in France, there is no justice for the victims of health scandals, as shown by the scandal of polypropylene mid-urethral slings, the Essure implants, and the Dentexia scandal.” “I would also like to be remembered as a whistleblower, so that my death will not be in vain, because worse than dying would be to die for nothing. I want my death to help awaken people’s consciences. I know that my words make people uncomfortable, but I represent hundreds of victims across France. My aim is not to spread fear, but to warn people about the dangers of these implants.” His interview (in French) He is currently receiving palliative care while awaiting approval for euthanasia. leprogres.fr/faits-divers-j… @EugenieBastie @nicolasberrod @PascalPraud @AlexDevecchio
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