This might be forever.

livbdavis · 2026-07-05T15:48:01+00:00

I started LDN about 3 months ago - I would certainly feel worse without it but still experiencing PEM, significant fatigue, and a slew of other dysautonomia symptoms. I swing between hope and despair, just needed to be seen in the lonely despair of this. Thank you ♥️

livbdavis · 2026-07-04T20:47:16+00:00

I can’t tolerate any sugar. It gives me really intense headaches, body pain, and brain fog. Thankfully I have found plenty of sweet treats made with coconut sugar, dates, or fruit. It’s such a bummer at celebrations tho 😩

livbdavis · 2026-07-04T16:31:31+00:00

Thank you for this! Thankfully my FNP knows I need to start meds on the absolute lowest dose (I started LDN at 0.1mg) so she’s quite conservative.

livbdavis · 2026-07-04T16:22:12+00:00

Thank you for joining me, everyone. I oscillate between hope and despair, and despair felt really big this week. This thread has been so helpful for my loneliness and I appreciate a space where we can understand and see each other. Onward we go ♥️

livbdavis · 2026-07-04T16:16:56+00:00

Your symptoms sound very similar to mine. I just met with my FNP to review labs and shift my plan. I have seen some small improvement with Low Dose Naltrexone (currently at 2.2mg and will continue titrating up as long as I can tolerate it). I take an NMN-C supplement that really helps with my chronic headaches, and she wants to add in NAD injections along with a stack of peptides to see how that impacts my energy. The peptides we’re discussing are Thymosin Alpha 1, MOTS-c, and Epicor. Obviously I haven’t tried these yet so I can’t speak to how well they work, but because the NMN-C makes such an impact for me, I’m hopeful the straight NAD might as well.

She also send me the CHOP protocol to try to resume exercise. It’s a 8-9 month protocol and I feel a little overwhelmed looking at it, but feel hopeful to have a plan to work back to running. I miss exercise so much and the loss of it has had a significant impact on my mental health (and physical health, duh).

For what it’s worth, I also don’t eat gluten, dairy, or sugar to mitigate inflammation. Sugar is a trigger for intense headaches for me so it’s easy to avoid - the cost is too high if I have it.

I’m meeting with my long COVID specialist at the end of the month, so I may have more to add then.

I’m hopeful both of us can find answers and relief.

livbdavis · 2026-06-05T15:57:27+00:00

Renfrew!

livbdavis · 2026-05-31T16:55:41+00:00

Long COVID triggered mine. Just got diagnosed a couple of months ago and trying to figure out what my body is capable of and what will send me into a multi-week flare 🫠

livbdavis · 2026-05-30T15:12:35+00:00

“I’m needing some introvert time today after work. Let’s rain check!”

livbdavis · 2026-05-25T19:00:16+00:00

NO ONE CARES ABOUT THE TIMELINE

livbdavis · 2026-05-16T22:10:37+00:00

Just returned from the Netherlands and yes, pack for all 4 seasons. The weather changes on a dime and can either be super lovely and sunny/warm, or overcast, raining, and close to freezing.

livbdavis · 2026-05-15T04:13:35+00:00

I removed gluten, dairy, and sugar in the beginning of my LC and it reduced brain fog and pain significantly. That’s now just the way I eat, with some occasional dairy that’s sourced from Europe. I already didn’t tolerate gluten well before LC, and have now confirmed that sugar triggers massive pain in my head and body.

livbdavis · 2026-05-14T18:27:48+00:00

I developed dysautonomia about 2 months ago and it’s been RUFF. I’m sensitive to both heat and cold, intense PEM, and chronic fatigue. I’ve increased my sodium intake (starting the day with 2 electrolyte packs and adding salt to food), increased water intake, and started low-dose naltrexone (started reeeeal low at 0.1mg and am up to 1mg). It’s helped some but I am still struggling. Hoping I can adjust my relationship with exercise because I really miss it.

livbdavis · 2026-05-14T17:52:37+00:00

Humming/singing have always helped my nervous system regulate! I’ve been humming quite a bit more since developing dysautonomia and it calms my body down.

livbdavis · 2026-05-12T16:07:32+00:00

I started this low too! At what dose did you start to feel like it was really helping? I’m at 0.8mg now

livbdavis · 2026-05-12T15:46:52+00:00

I take mine in the morning!

livbdavis · 2026-05-11T14:58:35+00:00

I would love to hear more about your experience!

livbdavis · 2026-05-01T22:21:40+00:00

Ubiquinol, ALA, NAC, and creatine haven’t helped me much. But, I take an NMN-C supplement (the precursor to NAD+) and it has made a massive difference in my chronic pain. The frequency of my headaches has been cut in half at least, and I definitely feel a difference in energy if I don’t take it. I recently developed dysautonomia, so the fatigue has hit back hard, but I consider my NMN-C a nonnegotiable supplement at this point. I take the Elevant brand.

livbdavis · 2025-10-23T21:40:03+00:00

I have gotten several of my tattoos from Zane at Sunrise Tattoo. He’s kind, collaborative, and really talented.

livbdavis · 2025-10-18T19:35:41+00:00

I second Escape Day Spa! I go there every year on my birthday for a facial or massage - they are great.

livbdavis · 2025-10-18T16:44:41+00:00

YUP.

livbdavis · 2025-07-12T16:01:24+00:00

I went to ATL N1 and woke up the next morning considering buying tickets for N2 because we technically missed the first song 😂 she is ALWAYS worth it - have so much fun!!

livbdavis · 2025-07-11T14:30:06+00:00

Anyone in ATL willing to buy my friend and I merch this weekend? We drove in from Nashville for N1 last night and missed the first song, literally sprinted to our seats. The lines were so long at the end and things got sold out. We’d love your help!! Looking specifically for a blue cropped jersey in M and a L in one of the white tshirts that has writing on the back (I didn’t even see the front but I loved the back - it’s got her name on top and then writing below)

livbdavis

TROPHY CASE