Craig
@4runnerbro
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Following
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Long Covid, POTS, MCAS, ME/CFS, UC Berkeley Alumni, TechBro
Bay Area
Joined October 2020
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Unfortunately my Long Covid medical team has had me withdraw from all
#longCovid
clinical trials immediately as all my test scores (CBC, T cell, B Cell and others) are getting worse by the week and they don’t know why currently. They said I’m too sick. I hate Long Covid.
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Today I am getting fitted for a specialty walker and 30 months ago I was climbing half dome at Yosemite and backcountry snowboarding. This disease will leave you disabled.
#LongCovid
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How many of you with
#LongCovid
can relate? I went on a short walk nature adventure yesterday and today I feel like absolute death. This is insane. I played college club hockey and hiked half dome in Yosemite for fun on weekends and now I crash from a walk and car ride
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Going off all my medication today in preparation for
#LongCovid
clinical trial Monday at Stanford University testing a new medication to try and help cure Covid
#POTS
pray for me this is going to suck but thankful this will help others
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#LongCovidAwarenessDay
My last picture before I contracted Covid. Lake Tahoe, CA. I was an avid snowboarder, biker, hiker, national park lover and one who lived for nature. Life is different now with
#longcovid
but not giving up
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I’m severely depressed today. Long Covid is so debilitating and causes what they are saying “permanent disability”. At 36 I’m not ready to be disabled over night from a virus. 29 months sick and getting worse.
#LongCovid
I want to hike and snowboard again
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I don’t want to be sick anymore
#LongCovid
is awful and takes everything from you. First your health, then your friends then your partner and leaves you alone and disabled. My internet friends care more about me now. Thanks LC community 👍🏽
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I’m being tested currently for cancer because of
#LongCovid
and spent the night in the hospital this week at 28 months with Long Covid. Many doctors hypothesize LC will facilitate cancer and I may be an example of this. Stay safe friends ❤️🩹
Is SARS-CoV-2 an oncogenic agent?
« Since infection with SARS-CoV-2 occurs in several organs either directly or indirectly, it is expected that cancer stem cells may develop in multiple organs »
H/t
@HarrySpoelstra
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Last day at the Stanford Paxlovid Long Covid Clinical Trial. Hopefully my blood donation and testing of paxlovid on my body will help science find treatments for
#LongCovid
Until next time ✌🏽
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Day 1
#longCovid
clinical trial for
#POTS
The study is investigating whether a new medication, efgartigimod (Vyvgart), is effective at reducing/improving symptoms related to post-Covid POTS.
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Medical team is ordering immediate IV infusion twice a week and more steroids and a couple new immunity reduction drugs. At 36 years old and 27 months long Covid I’m very sick and getting sicker :(
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I won’t sleep tonight I’m so sad and I’m sick of being sick and I don’t know what Long Covid flares are I’ve felt awful consistently for years. I now have MCAS , POTS and me/cfs officially diagnosed and this is all so hard
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My Long Covid doctor sent me a message that said “ don’t give up and hang in there and we are not giving up on you (him and my PCD)”. Nice to have a Long Covid specialty doctor who truly cares.
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Sometimes I wonder how long can our bodies withstand this and immune dysfunction. My Long Covid doctor replies “I don’t know” in terms of me trying to ask him what he thinks will happen…. :/
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@UberFacts
It’s a solid not a liquid and she is not wrong. These comments scare me and shows that our education system sucks.
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How many of my
#LongCovid
friends can relate to this now they are part of the
#pots
community? I try and explain what it’s like but tachycardia is way too simplistic and if you have POTs you know it touches everything. For me shaking, nausea, dizziness, tachycardia and more!
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I always feel much worse after a nap or after any sleep and takes me around 30 minutes of feeling like death to get to whatever baseline I’m at for that day. Does anyone else with
#LongCovid
notice this as well?
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#LongCovid
is so painful emotionally and physically. When will this all end. Bad week. Sick of being sick in a dark place. Doctors are saying I’m getting sicker at 27 months and they don’t know why….. 😞
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For those curious about Saline infusions for Pots Syndrome
#POTS
Conclusions: Intermittent IV infusions of saline dramatically reduce symptoms and improve quality of life in patients suffering from POTS.
#LongCovid
.
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#LongCovid
disabled but thriving 😎🤙🏾I went for a cruise in my POTSmobile mobility scooter to help get out more with
#POTS
it has a dope cane 🦯 holder and speaker for tunes. My doctors helped me pick it out and my pots physical therapist
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These are the
#LongCovid
researchers I am currently working with for the Stanford Long Covid Paxlovid clinical trial. It’s the first study to look for and study treatments for Long Covid not just symptom management. Help is on the way just be patient
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I have Pots and this helped me I hope it can help you
What I like most about this is how it shows that Pots is a full body condition not simply heart rate. For me, I have every single one of symptoms below but medication does help.
#LongCovid
#POTS
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another wedding I can’t go to because of Long Covid. My friends are getting married and doing life and i’m trying to figure out if taking a bath and walking around the block will cause PEM and a crash. Long Covid is not fun
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#longcovid
is a very lonely condition. Watching the world continue as you stuggle to just get though the day hour by hour min by min is emotionally draining. I have a lot of fear about my future and scared what lomh covid willl do to me long term. Goodnight LC fam
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#LongCovid
gave me dysautonomia and as of last week the specialists said I’ll be remaining on the IV infusion for the foreseeable future
#POTS
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#LongCovid
Paxlovid Clinical Trial session 4/5 at Stanford University. The goal of the study is to see if Paxlovid is effective against Long Covid.
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Monday IV Saline Infusions because of
#POTS
in my
@LongCovidKids
shirt to help bring awareness and support to kids suffering
#LongCovid
#Dysautonomia
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Just got off the phone with my Long Covid doctor and he suspects something autoimmune, rheumatoid or neurological has occurred in addition to my Long Covid, MCAS and POTS.
Awesome
I have a neurology appointment Monday
#LongCovid
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My
#longcovid
doctor is having me start this in 4 weeks. He emailed me yesterday to set up an appointment to talk about it. Excited to give it a try!
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#longCovid
and
#POTS
physical therapy day👙🤿🏊 I did 12 minutes today 💪🏽🏆I’ll be getting a call from the USA 🇺🇸 Olympic Swim team soon I’m sure of it! 😎
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#LongCovid
gave me
#POTS
and as I sit here riding the adrenaline surges just wanted to remind all of you that you are also screwed when the Zombies come.
#TruthHurts
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I am having a sad
#LongCovid
day and miss my old life. This is a backcountry snowboard hike I did in Utah. I am sad I may never be able to do this again because of a virus beyond our control. I know I’m not alone in how I feel. You are not alone ❤️🩹✌🏽
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@CNN
How do religious people support this guy? He is getting arrested for payments to a porn star for an affair while married and last time I checked both things are prob not what Jesus would have wanted but who knows it’s not like we hang out (Jesus and I)
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#LongCovidAwarenessDay
This is the last picture I took before my life changed forever. This is in Monterey, CA and a few days later I contracted Covid. 26 months later I am still here. I still matter. We will all recover ❤️🩹 thank you to all my new friends
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One of the worst parts about
#LongCovid
is the amount of people forced to look for and self treat a unknown medical condition without any medical knowledge or experience. It is dangerous, wrong and shows how broken our society is
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Month 30 of
#LongCovid
I’m bed ridden today and talking to my Long Covid doctors about new and worsening symptoms. This disease is awful.
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My
#LongCovid
doc said yesterday the reason why Metformin is interesting is that under recent studies and his own research they found it to be very helpful with reducing inflammation and think it could be a good strategy to tackle the inflammation aspect of the disease
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I am having a sad
#LongCovid
day. I miss my old life. I was a backcountry snowboarder, biker, and avid hiker. I lived for exploring the natural world. Here is a pic of my last hike I did before I contracted covid 2 months later. This was at Arches National Park in Utah 2020
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@MeetJess
Same. I have people who “love” me who won’t wear a mask around me out of respect and had one person tell me to stop posting on Instagram about long covid because no one gives “two shits” i’ve made more friends online now in last 26 months. Wanna be my friend?
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@RioSlade
@Saffiya_Khan1
Oh cause it can get a lot lot worse. Take me for example. I had Long Covid. I contracted virus second time and then I had Long Covid plus MCAS and Pots Syndrome now and my LC doctor said it was due to the second infection
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#longcovid
and
#mcas
have a lot of similarities in symptoms. This is a good graphic that illiterates the multi system effects of Mast Cell disease and how it’s truly a full body disorder not simply a cellular disease
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My Long Covid doctor emailed me today and said “continue with the treatments, stay positive and never give up hope”. I hope this helps someone today suffering. At 31 months I’m very sick but I do have hope.
#LongCovid
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Beautiful Day in California. My peach tree is starting to blossom. Dealing with
#LongCovid
is better when I am able to get outside.
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I had a nice conversation with one of the owners of my management consulting firm where I was a manger before I contacted Covid. Job is secure and they want me to get better and miss me. They are taking me to lunch when I feel well enough. I’ve been on medical leave 2 years
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Just unhealthy me making poor life choices at Canyonlands National Park before contracting
#covid
(this is the last National Park I explored weeks before contracting Covid and now
#LongCovid
27 months and counting). I miss exploring the natural world.
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Masks 😷 Are Back! 🙌🏾🙌🏾🙌🏾 Now I can get my infusions without risk of dying! Sweet!
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#LongCovidAwaneressDay
Before and after…. hiking in Canyonlands National Park and then 27 months later participating in clinical research trials to help find a treatment/cure for
#longcovid
Thank you to my new and old friends. I am greatful to not have to do this alone.
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27 months with
#LongCovid
and I feel as sick I did 26 months ago. Please stay safe and use protection 😎 masks…. Have a good long Covid day friends
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I went in for my IV infusion today for
#POTS
thanks to
#LongCovid
and wanted to share these photos with everyone. I hope everyone has a nice day.
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#LongCovid
lab day! Last labs 4 weeks ago I had high WBC and T Cells and my Long Covid doctor wants to retest and see what’s going with my cells probably in part thanks to
#MCAS
Hoping for the best and please send good vibes 😎 🤞🏽
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3 years ago I was a snowboarder, biker, hiker and a outside activity lover. 3 years later I am 26 months
#LongCovid
,
#mecfs
,
#mcas
,
#POTS
and use mobility aids to help walk and struggle to function and on long term disability. Life can change fast.
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@DrEricDing
Covid gave me Long Covid, POTS, MCAS and ME/CFS and I have to use a walker now as a former college athlete at 36 who goes in for IV infusion twice a week now. Please take this seriously regardless of current health status. Covid can kill or disable anyone
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#LongCovid
and
#POTS
swimming therapy for mobility, fatigue, mental health, decreased inflammation and reconditioning.
#Dysautonomia
is a full body disorder and exercise is crucial to help with symptoms.
@Dysautonomia
talks about the importance of exercise
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Today I start Metformin for
#LongCovid
thanks to
@boulware_dr
and others for their research and I hope it helps with Long Covid. My Long Covid doctor said it should help with controlling sugar aspects of the disease (Long Covid)
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@DawnInspiration
I have a lot of Long Covid docs and medications I’m very lucky. For me, I’m just very sick and my immune system is fucked.
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@laurabaranik
@StanfordHealth
@StanfordMed
@SpichakSimon
I was in this study and was very shocked when the coordinators and others checked me in and did the tests and normal things without masks. This isn’t just a Covid research facility they do all medical trials there for all conditions
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My new
#POTS
chair for my room picked out by my pots syndrome physical therapist. She wanted me to have something with lumbar support and can go all the way down with a foot rest for immediate nap time when the PEM hits.
#longcovid
sucks
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The study is investigating whether a new medication, efgartigimod (Vyvgart), is effective at reducing/improving symptoms related to post-Covid POTS.
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A nice message to remember with
#LongCovid
or any
#chronicillness
Have a nice Saturday friends acceptance is the answer and we can still have fun meaningful days full of ❤️🩹
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My new
#LongCovid
hobby that was suggested for my
#POTS
I take virtual lessons once a week for 30 mins because that is all my brain 🧠 fog can take. I hope others in my long covid community are able to find new hobbies as well.
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#LongCovid
Clinical Trial Session 3/5. 3.5 month study at Stanford University testing
#Paxlovid
as a treatment for Long Covid.
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@atrupar
That’s amazing. As a son of big time trial lawyers this is hilarious to me and can’t wait to send this to my Dad when he is out of court
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Sad seeing those trucks, cars and other recreational vehicles loaded on the road with toys ready for a outdoor weekend celebrating the 4th of July while I was being driven to the hospital for IV Saline Infusions for dysautonomia (Pots Syndrome) because of
#LongCovid
at month 30
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Long Covid doctor is discussing Dysautonomia(Pots) and mcas treatment plans with me today. He is suggesting bringing in neurology to assist and I’m going in for my IV infusion later today. Happy Sunday I’ll be at the hospital most the day
#LongCovid
29 months
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I won’t be eating at IN-N-OUT anymore which is unfortunate because as a Californian we love it. I’m disabled from Covid and likely will never have the same life again like many others. I can’t support an organization that helps spread active virus
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Today was a can’t get out of bed
#LongCovid
day. Too sick to even watch movies 😷 Long Covid sucks and this is month 28
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@MeetJess
Look how sexy she looks in a mask too 😍 masks are a great accessory and a nice way to stay alive
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Going to the Paxlovid clinical trial today at Stanford University and will get a burger and garlic fries after because it makes me happy 😊
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I was accepted into another clinical trial today at Stanford University to test a
#longcovid
#POTS
drug so they can see how they can help us who have Pots Syndrome. Donating this dumpster fire 🔥 body to science and Long Covid research. I’m in the paxlovid study now. 👍🏽🫡😷
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@VicBrian2
@SethMacFarlane
100% wrong. I was not vaccinated because vaccines did not exist when I contracted covid and I have Long Covid now 26 months.
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What do you do when your are having
#POTS
flare and can’t sleep? What you all do?! I’m having adrenaline surges and my resting HR is 120-130 lol 😂
#longCovid
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A seated 🪑 activity good for
#POTS
and was fun. A
#LongCovid
task I was able to complete. We have to count our wins and these avocados are from my tree!!!!!!! I made guacamole 🥑 for the Warriors Basketball 🏀 game
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Sunday Dinner for
#longcovid
anti inflammatory health and low carb meals to help with brain 🧠 fog and keep sugars down as a strategy to reduce inflammation a trademark of Long Covid. Tofu, onions, green beans cauliflower served with 1/2 cup brown rice. Buon appetito!
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@MeetJess
They don’t think it’s serious. Most have already had Covid and it’s the problem with humans….. complete selfishness. If it didn’t hurt or impact them they don’t care.
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#longcovid
and
#POTS
Water Physical therapy. I spend 15 mins in pool with a therapist and it helps with mobility, reconditioning, mental health and fatigue. I go weekly and it is recommended by my Long Covid/Dysautonomia/mcas doctor
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#longcovid
self care day. Got a haircut and let me tell you I am exhausted, dizzy and a little shakey but we survived and I was even social for a bit! You have to count the small
#chronicillness
wins on days we can tolerate activity
#mcas
#pots
#mecfs
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Update: I don’t have cancer it’s my Long Covid and the inflammation that has caused issues with cells (monocytes to be specific) we have to continue to monitor and test for it because of wbc levels but for now it’s “just” good ole Long Covid
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Sometimes i find it hard to explain my symptoms. Long Covid alone has over 200 symptoms. These help me so maybe they can help you as well my
#LongCovid
#mcas
#mecfs
#pots
community
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Something
#LongCovid
did to me that has been hard to accept. I did not expect to be thrown into the
#Disability
community from a virus
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@nihceal
The one actual important part in this is the LC developed from non symptomatic C19. I had a friend like this who had no symptoms but tested positive and later developed LC and severe dysautonomia and other LC symptoms.
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Made it and glad I did :) stayed within today’s energy envelope at
#LongCovid
&
#POTS
“Swimming” physical therapy and had a good time 😎🏝️🏄♂️👙🤿
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@hortonrachel_
I have and it’s been good. I’m learning new hobbies, new ways of living and it’s not as depressing and I have LC, mcas, pots and now diagnosed officially me/cfs. Acceptance isn’t giving up it’s surrendering to reality and learning to embrace and grow with our new way of life
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Gifts of
#longCovid
and
#POTS
(pots syndrome) twice a week hydration infusions. This is my life now 27 months with Long Covid. Long Covid sucks
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@DrAGrace_cyhtt
This is very true. 2 years with Long Covid, CFS, MCAS and Pots Syndrome with no prior health issues at all (I use to hike half dome for fun). I work with many covid specialists and am in clinical trials but many are not so lucky. Covid is very serious still.
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For those interested this is the
#longcovid
clinical trial I will be doing at Stanford University to help scientists learn about
#POTS
I am excited to help science and this gives my life purpose and meaning to help find treatments for all
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Getting that
#LongCovid
#POTS
special sauce (H20 for pots syndrome) 💦 at the local watering hole (infusion center) ✌🏽♿️😎😷🤪🏝️🏄♂️
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