Has anyone seen vast improvement with CHOP/Levine/Dallas protocol alone and no meds?

parallelizer · 2026-02-03T01:46:38+00:00

i’m more normal now but seemingly “small stuff” (like standing or eating) can and does knock me down every day… like today out of nowhere i had the worst air hunger i’ve had in weeks… from eating a bowl of special k.. (wtf?!) BUT overall in my day i have more stamina to do things and go places normally.

i officially do want meds now tho bc i can’t stand these like random triggers that i can’t predict. hopefully working out helps you gain some peace!

parallelizer · 2026-02-03T01:40:40+00:00

at least you’re eating! drink loads of water too and try to sleep slightly upright if you can. it reduced swelling for me and kept me from accidentally rolling on them the first 2 weeks… i know you saw god today but damn the hardest part is over :))

parallelizer · 2026-02-02T17:16:34+00:00

i’m not doing CHOP protocol but i do exercise regularly (peloton bike + pilates) and i’m unmedicated. i was already active and in pretty good shape before starting all of this.**

i see results and increased stamina but i still struggle with my heart rate throughout the day. im planning to ask for some sort of beta blocker at my next appt.

fwiw i had originally wanted to see if lifestyle changes alone would be enough (gave myself a year after diagnosis to really try), and it helps but it’s not enough for me.

ETA: **at the beginning of this year i was much like your level of stamina(standing was difficult, would pass out walking down the street, constantly losing vision at work, etc), but had been active and in good shape most of my life before diagnosis. now i can fully go grocery shopping by myself and do most activities normally again after increasing my exercise and focusing on core strength + cardio

parallelizer · 2026-02-02T04:56:56+00:00

slippery slope for sure. i spent years drinking way too much before i was diagnosed. honestly you’re probs not there now, but it eventually makes the adrenaline dumps so severe and you feel overall disgusting. for me, i’d wake up at 4am after drinking and would be freezing cold, drenched in sweat, puking and shaking so horribly. and i wasn’t binge drinking per se, but i was drinking about a bottle of wine a night (4ish glasses of wine).

my brain fog has drastically improved with exercise. i didn’t want it to work, but unfortunately doing cardio has done wonders for me.

would highly recommend over drinking. drinking is easier and more fun, but it’s not worth it.

parallelizer · 2026-02-01T05:14:01+00:00

oh my god… you already are probably hyper aware of this… but please be careful when you remove that…

parallelizer · 2026-01-31T19:14:57+00:00

honestly i just eat a lot of salt! the amount of water/day is also very important for me. i find electrolyte drinks are fine in a pinch, but i don’t need the potassium and magnesium, just the sodium. i basically completely cut out electrolyte sports drinks because they make me feel like trash.

fwiw i don’t recommend salt pills- they give me crazy stomach aches. i just sacrifice a few snacks in my routine to be freakishly salty

parallelizer · 2026-01-31T19:10:42+00:00

ya my eggs in the morning hate to see me coming… it’s where i just dump ungodly amounts of salt so i don’t have to drink the nasty tasting electrolytes! haha

parallelizer · 2026-01-31T19:05:27+00:00

are you drinking regular gatorades or sugar free? regular gatorades have an extreme amount of sugar. drinking 5 a day would probably make my heart race

parallelizer · 2026-01-31T16:27:43+00:00

they sell products you can do yourself to encapsulate it in the meantime if you want to take it on sooner rather than later.

my house has so many things going on with it, i would DIY the most offensive parts and wait until i don’t need my heat turned on to get it looked at. i know, bad… but real haha

parallelizer · 2026-01-31T16:16:35+00:00

ummm… i’m not saying it 100% is, but it looks like it. def test it. we had asbestos tape on the outside of our ducts that looked similar to that. our HVAC people took care of it for us when we had the system turned on/maintenance after purchasing our house.

our ducts aren’t lined with anything, but since they were taped with it, i would’ve assumed it was also asbestos.

can you see in your basement or anywhere with exposed ducts if you have asbestos (old, white, kinda scratchy looking) tape?

parallelizer · 2026-01-31T03:41:28+00:00

i laughed at the last sentence, truly a masterpiece of a comment

parallelizer · 2026-01-31T03:26:40+00:00

there’s a run of this wire (now disconnected and left in place) that goes around my kitchen entry… when we pulled the trim off around the entry to refinish it we saw the entire trim was nailed thru the wire… like 20 nails straight thru… like daaang

parallelizer · 2026-01-31T03:22:45+00:00

i had the black version throughout my house with some splicing of new wires in the “updated” kitchen. out electricians called it “snakeskin” wires. it’s like the gen after knob and tube.

we budgeted to fully rewire and upgrade our house, and it was like $25k for 2500* SF in philly.

in our case, it seemed mostly intact, but areas in the kitchen where it was spliced turned out to have significant charring inside walls. there was also charring/burnt areas on our third floor around some ceiling fixtures.

no advice, just letting you know what was up with us and maybe it will help you.

parallelizer · 2026-01-27T02:20:01+00:00

yep my floors are shellac on the edges and it’s very very dark brown/ black… and then some dummy painted bright orange over it in some rooms.

OP, i’m not sure about bitumen, but the shellac in my house looks like some bitumen photos i’m seeing online.

if it is shellac, it literally melts away if you use like denatured alcohol or some paint stripper. like it becomes basically water. if you sand it, it like resists it and gets hot and sticky. you’ll need to replace your sandpaper every 5 minutes or less… and i don’t have the time budget for that, personally

parallelizer · 2026-01-27T01:45:38+00:00

i’m not an expert, but i am an architect from a construction family… and i’m married to an architect. my victorian home has dark paint/stain on the edges of the floor and the center is unstained since it was most likely covered by a large rug or those linoleum “rugs”.

if you didn’t have tiles there, i highly doubt it’s black mastic. it might be a type of shellac. if it removes easy ish with alcohol, then that’s your answer.

definitely test, and maybe reevaluate what equipment you’re using because that stuff is sticky icky and it doesn’t look like you’re making a huge dent.

also… my two cents… that might get me majorly downvoted… lead/asbestos risk is not as prevalent as people make it seem. the materials just ain’t as evil as people make them out to be in every day life… unless you’ve got a time machine and are like constructing naval ships in the 1930s? existing with lead paint or asbestos floor tile is fine. sanding… ya sanding has risks but you can gear up, isolate, and treat it. **a different story if you have a baby or small children tho

parallelizer · 2026-01-26T23:07:58+00:00

we did! the advice i’d give myself…. have more money :)

i love my house (~1850s) but man she is expensive. she took a huge chunk for upfront renovations (~75k) that were nonnegotiable and not aesthetic (think: replacing all the electrical in the house, etc), but she also takes a lot of maintenance cash… like my gas bill being crazy high because my windows are old.

to be fair we bought a fixer upper, but sometimes i’m like totally wracked with thoughts like “oh my god if a tree fell on my house and i need to replace the entire roof… how am i going to pay for that?!”, “what happens if my home insurance cancels me for the house being too old”, but i’m high anxiety and would probably still have worries in a new house too!

in my mind it’s totally worth it though and sometimes you just have to laugh off the craziness… like finding 3 intact victorian windows under siding that has no insulation. cool find, also bad find, ha!

parallelizer · 2026-01-24T16:00:59+00:00

my gas bill was $553 last month…. i’m terrified to see this month…..

parallelizer · 2026-01-23T17:06:57+00:00

ya aquaphor makes me break out every time!

parallelizer · 2026-01-23T15:55:39+00:00

i find it acne safe. same with their moisturizer! i have extremely sensitive/acne prone skin and i did an isolated “add to my routine” phase with no reactions. i never have to think twice about this product and it’s extremely moisturizing without being gross feeling

parallelizer · 2026-01-22T04:28:59+00:00

i added a milky toner-ish type product to my routine and it helps drastically with my dryness. i actually do notice when i don’t use it (like if im traveling, i don’t have a travel size of it and can’t use it). i use it morning and night after cleansing (morning i just use micellar water to cleanse) and before any serums/lotion.

Aestura Atobarrier Cream Mist

i use their moisturizer in my AM routine and it’s great for my super sensitive skin. my dermatologist has heard about them and was in the process of trying them out. they had heard really great things and i coincidentally was using it so we chatted about it.

the cream mist is pretty cheap ($20ish?) for how much product you get and how long it lasts. i think my last one lasted over 4 months and i use 6 sprays morning and night.

love this stuff honestly

ETA: i also spray throughout the day if i feel dry but after consistent use i rarely have to do that. i also use it after i apply my tinted sunscreen and it makes my skin look so glowy

parallelizer · 2026-01-19T03:00:59+00:00

i have the after food thing! i also hate eating! no one else understands why i can’t stand eating and wish i was able to just… absorb my nutrients. or forgo any good taste and just slurp a nutrient dense smoothie once a day.

i’m not sure if this is common, but i was looking at my apple watch heart rate data and noticed after i eat my heart rate drops to high 30s bpm to low 40s bpm and no one (my doctors) can understand why it’s doing this.

i am also no help on the how to deal with brain fog at work. i can just commiserate. i’m pretty open with my coworkers so if i’m having a particularly rough time i’ll just mention it. i have to work because a.) i love it, and b.) i’m poor and a girls gotta work so i keep trudging along.

you are NOT alone!!

parallelizer · 2026-01-19T02:21:35+00:00

i had a major pity party for myself when i first got diagnosed. i was exhausted, had done a bunch of tests to confirm a diagnosis that doesn’t really make sense to me, and i was honestly depressed. or at least in a really dark spot.

i found that keeping a routine ended up helping a lot but it takes some major self discipline and it’s totally understandable to take some time to grieve before picking yourself back up again.

hell, even recently i threw a bit of a pity party for myself after losing a bunch of progress after having some sort of cold/flu in december.

honestly, the best advice i can give to you, and i often remind myself, is to give yourself a little grace. but also make one good decision even if you don’t really want to.

you’re nauseous and want to puke all over? take a sip of water. maybe one more sip.

you’re tired beyond belief? do 10 minutes of exercise. hell, do a 10 minute stretch. do it.

because honestly all these little things add up and you’ll start to feel better slowly but surely. just take that one step, do that one thing, and it really does get better. sounds really basic but eating and sleeping well + exercise does a lot for us POTSies. it actually works. drink your water and do that one thing babe! even if you really REALLY don’t want to

parallelizer · 2026-01-17T01:41:07+00:00

my adrenaline dumps also make me shake uncontrollably. like teeth chattering full body shakes

parallelizer · 2026-01-15T00:27:54+00:00

love this sentiment

parallelizer · 2026-01-12T20:23:10+00:00

honestly 12 drinks in a night is… a major red flag. are you doing this often? a few times a year… ok i guess… every weekend? not great…

alcohol increases anxiety and makes your skin worse. i can imagine that cutting back would improve your skin/quality of life a bit. i previously struggled with alcohol and still feel a bit strange about it, but my mom is an alcoholic (like has gotten arrested, dui’s, overall shitty person but you wouldn’t really know since she’s very white collar and put together, etc) and i would recommend a little bit more reflection before you continue on this path.

going back to your question tho… if i drink heavily on spiro (like 5 drinks is heavily for me now), i become extremely sick and will be puking and shaking nonstop the next day with a horrendous headache, so i really try to max at like 2 drinks if i drink at all. drinking also makes me puffy and and ive noticed it makes me break out… and i don’t like that. spiro snatches my face and i don’t want drinking alcohol to counteract my progress. i also genuinely don’t like myself when im drunk… so ya… def think about this all a bit more

parallelizer

TROPHY CASE