Lilly Dee

811 posts

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

118 Takip Edilen436 Takipçiler

Sabitlenmiş Tweet

Lilly Dee@LillyDeeeeee·20 Oca

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.

English

12.2K

Lilly Dee@LillyDeeeeee·1d

@I_need_a_razor I'm glad you've been able to get a little physical relief at least. I understand the mental part, I go through that as well when my pain eases up. Reality comes crushing down when the mind is no longer consumed so much w the constant physical agony 💔

English

Living Ghost@I_need_a_razor·2d

Physically I’ve been better for the past couple weeks. Mentally not so much. Instead of the mental anguish due to constant pain and neuro inflammation, I’m able to take a breath but all I see in the wake of this disease is lost memories and heartbreak. There’s not much left

English

692

Lilly Dee@LillyDeeeeee·2d

@DiaryofaSickGrl I would love that

English

Candace D.@DiaryofaSickGrl·2d

I pray one day I have a best friend (preferably chronically ill) who is equally as obsessed with me as I am with them! Just always texting, calling, laughing, sending each other funny stuff. Can just chill and do nothing together 👯‍♀️

English

227

4.3K

Lilly Dee@LillyDeeeeee·2d

Exactly this. We want to live more than anything. My baseline may have improved, but I'm still pushing past my threshold and that's not good.

Living Ghost@I_need_a_razor

People with myalgic encephalomyelitis are dying to live. Literally. We push past our threshold everyday. No matter how that might look depending on someone’s severity, we are constantly causing flares/crashes just for a glimpse of normalcy. Im praying for a breakthrough soon

English

261

Lilly Dee@LillyDeeeeee·2d

@I_need_a_razor Exactly this. We want to live more than anything.

English

125

Living Ghost@I_need_a_razor·2d

English

198

3.2K

Lilly Dee@LillyDeeeeee·2d

@PneumaNeura @Engineer_Wong @suchnerve Thank you!

English

Pneuma Neura 🔬⚕️✨🪩🔭@PneumaNeura·2d

@LillyDeeeeee Unless I’ve become outdated people say @Engineer_Wong air Fanta has one of the highest CDRs @suchnerve posts often about the engineering of various protective devices, maybe you can ask grok to pull up stuff from her account

English

Lilly Dee@LillyDeeeeee·2d

I need a good portable HEPA air purifier so I can visit family & be #covidcautious. Anyone know of any? How do I stay safe visiting for a couple days? I guess I can keep a mask on. Perhaps put the HEPA in the bathroom & opening a window before removing the mask for a shower.

English

175

Lilly Dee@LillyDeeeeee·12 Mar

@Cosmo_N17 @ADHDForReal This is what i say

English

Liam@Cosmo_N17·11 Mar

@ADHDForReal triangle is yellow circle is red Square is blue

English

2.4K

111.2K

ADHD Memes@ADHDForReal·11 Mar

ZXX

2.2K

228

12.9K

1.2M

Lilly Dee@LillyDeeeeee·12 Mar

@AshleyA05420773 I'm glad 💙

English

Ashley Alejandro@AshleyA05420773·12 Mar

@LillyDeeeeee Thank you honey. Y’all are making me feel so much better and I am overwhelmed with love and support here. It’s amazing. 💙

English

804

Ashley Alejandro@AshleyA05420773·11 Mar

I am the wife he’s talking about here. His previous boss said, to my husband’s face, that I he needed to think of me as “an acceptable loss”. These people were very close friends of ours and I was still that dispensable. I am scarred for life over that, not a joke.

English

217

1.9K

70K

Lilly Dee@LillyDeeeeee·12 Mar

@Housoup Yes 💙🫂

HouSoup@Housoup·11 Mar

@LillyDeeeeee Soooo disappointing….especially how hard we have worked 🤗

English

Lilly Dee@LillyDeeeeee·10 Mar

2 days ago I was feeling ambitious & thought I'd try a little exercise. A few squats, 5 push-ups & a few high knees counting to 10. That was a hard NOPE. PEM kicked in yesterday & it was awful. But curiously I felt better in the evening & started to putter around. I just wanted

English

1.9K

Lilly Dee@LillyDeeeeee·11 Mar

@techno_peasant I'm going to try to follow something more closely to this.... soon. Not yet though.

English

Weary Worn-out Peasant 〓〓 🏳️‍⚧️🏳️‍🌈@techno_peasant·11 Mar

@LillyDeeeeee I manage short walks once or twice a week by walking very slowly, pausing regularly and using a stick.

English

Lilly Dee@LillyDeeeeee·11 Mar

@Nick_Wellings I'm sorry. It's awful when we go backwards 😞

English

Nick Wellings@Nick_Wellings·11 Mar

@LillyDeeeeee Thanks, I did it a few times, starting slowly from day 10 seconds. I used to feel good after for some reason. But I haven't done it in a long time, gone backwards a bit.

English

Lilly Dee@LillyDeeeeee·11 Mar

@BlueHillGirl This is true, I can feel better in the evening. Which incidentally is when I attempted this exercise 🫠

English

Squirrel Bait@BlueHillGirl·11 Mar

@LillyDeeeeee A few squats and 5 pushups? No problem. High knees? No effin way. Lots of us feel slightly better in the evening. I thought I was nuts. It’s helpful not to fall for that false sense of security. I do it all the time, but…😉

English

Lilly Dee@LillyDeeeeee·11 Mar

@MarkMooch I definitely think that has something to do with.

English

markmooch@MarkMooch·11 Mar

@LillyDeeeeee I have a feeling that the swing of feeling good/more capable is related to a temporary increase in adrenaline which can subside and show us how well we’re really doing.

English

Lilly Dee@LillyDeeeeee·11 Mar

@Nick_Wellings You're right, there is a "second heart" there in the calf muscles, isn't there. That's not a bad idea.

English

Nick Wellings@Nick_Wellings·10 Mar

@LillyDeeeeee You could try balancing on one leg perhaps, both to assess how your balance is, to help your brain too, and to strengthen the "second heart" in calf muscles. But be careful! You probably won't see this idea in any ME groups or therapy, just something I came up with once.

English

109

Lilly Dee@LillyDeeeeee·11 Mar

@Housoup Thank you. It's not surprising, but still disappointing.

English

HouSoup@Housoup·10 Mar

@LillyDeeeeee Ugh. So sorry. It’s still off the table for me as far as I know. Walking and slowly doing short sauna sessions to try to expand capacity.

English

109

Lilly Dee@LillyDeeeeee·10 Mar

@medimusic5 In the past when my severity has eased up I've been able to walk 30min. It was never sustainable for too long. At this time, I'm guessing I'll only be able to do abt 10min when I try again. Because I've had so much recent muscle loss.

English

medimusic@medimusic5·10 Mar

@LillyDeeeeee What is the distance you can walk ? 🙏🏻

English

Lilly Dee@LillyDeeeeee·10 Mar

@liamsLCjourney Yeah, that was kind of stupid for me to try at this time. I'm not in remission, just better. I'm dying for exercise though, I hope I can do it in the future.

English

Liam's LC/ME Journey@liamsLCjourney·10 Mar

@LillyDeeeeee I have been in remission several times and strength training is always the last thing I've added in. It's just multiple times more exerting than other types of activity.

English

Keşfet

@I_need_a_razor @DiaryofaSickGrl @PneumaNeura @Engineer_Wong @suchnerve @Cosmo_N17 @ADHDForReal @AshleyA05420773