Christy Collins 🍉 🕊️
@sun_in_winter12
Followers
2,963
Following
1,364
Media
144
Statuses
13,688
#LongCovid #MCAS #Hypermobile Sharing what I've learned on my own journey. Tweets are educational; not medical advice.
New York, USA
Joined December 2012
Don't wanna be here?
Send us removal request.
Explore trending content on Musk Viewer
ハロウィン
• 912109 Tweets
Valencia
• 570224 Tweets
DANA
• 458980 Tweets
ポケポケ
• 117953 Tweets
Esenyurt
• 59845 Tweets
Ahmet Özer
• 47494 Tweets
Mercadona
• 44719 Tweets
フレンド
• 43900 Tweets
AEMET
• 42189 Tweets
LINGORM X TIGERCRY
• 40010 Tweets
RTVE
• 39329 Tweets
Turia
• 38374 Tweets
ピカチュウ
• 34050 Tweets
LINGORM N2U LIVE
• 32034 Tweets
Albacete
• 29126 Tweets
自民党会派入り
• 28031 Tweets
橋本環奈
• 21317 Tweets
ジェイド
• 21190 Tweets
フロイド
• 21145 Tweets
ポケモンカード
• 20891 Tweets
中川大志
• 18001 Tweets
ポケカのアプリ
• 15350 Tweets
ミュウツー
• 14952 Tweets
コミコン
• 13193 Tweets
オースティン
• 12695 Tweets
#うちの本丸の厨番長
• 12555 Tweets
Pinned Tweet
Hey
#longcovid
crew, thought I'd put something positive out into the world right now. At 15 months in, *some* of my symptoms have improved greatly.
I’m honestly not sure whether it was time or one of the things I did, but I thought I’d share in case it helps someone... 1/
21
104
1K
Oh my god, you guys-
@NIHDirector
just said
#longcovid
is live, replicating virus.
"We see evidence of persistent live virus in humans in various tissue reservoirs, including surrounding nerves, the brain, the GI tract, to the lung."
FINALLY.
83
1K
3K
I don’t think I’ll ever get over the fact that we had this and then lost it
“They want us to forget that, during the lockdowns, global carbon emissions dropped 6%, that bird song returned, that it was so obvious that the world was doing better "nature is healing" became a meme.”
2
203
906
17
547
2K
My Reddit friend has achieved remission from
#longcovid
on a combination of Maraviroc and Truvada.
He saw the improvement in his lactate levels within days, and is now back to full exercise!
Details on his experience- and what he believes LC is- here!
39
365
2K
Really interesting. I started nasal glutathione spray this past week.
Out of everything I've tried, I'd put this among my top treatments for making my brain feel closer to its pre-Covid self.
#LongCovid
43
191
2K
Just met with a doctor who's prescribing me multiple antivirals for
#longcovid
. Beyond disgusted with our govt for providing no warning and no treatments.
Honestly I urge anyone considering antivirals to start now. My doc said I might have made things worse by waiting.
78
211
1K
What is everyone's preferred nasal spray for Covid risk-reduction? Is there a consensus on which works best?
Xlear (xylitol) makes me temporarily lose my sense of smell, which is quite paranoia-inducing....
#longcovid
200
93
929
OMG this is big!!!! 👇👇👇
ANOTHER group of
#longcovid
researchers has identified viral persistence in the GI tract!
Scientists discover a new condition called SARS-CoV-2 Persistent Infectious Epithelial Syndrome (SPIES), where persistent gut infection by the virus causes symptoms like abdominal pain and weight loss, often misdiagnosed as IBS.
#LongCOVID
24
453
1K
6
254
855
Hey everyone, I wanted to highlight this groundbreaking
#longcovid
preprint
If you haven’t seen this yet you should know:
**High anti-spike antibodies that don’t wane 6 months after infection may be a sign of viral persistence** 1/
👇
34
275
817
ICYMI the Bomsel group in a France recently presented data showing
#longcovid
viral persistence in megakaryocytes. These are the cells that make platelets, and they’re found in bone marrow.
30/30 subjects had platelets containing infectious viral RNA and microclots. 1/
18
245
739
The Canadian Guidelines for Post Covid-19 Condition now formally recommends Metformin for people with
#LongCovid
upon reinfection
18
260
698
@MalakaGharib
I’m very sorry to hear about your family’s experience, and glad you shone a light on this issue. But I’m also a little dismayed you quoted a psychologist “who specializes in mental and behavioral problems” in reference to your husband’s efforts to avoid reinfection…
9
18
665
Great post on how taking Valtrex for EBV healed one person’s
#LongCovid
after 2.5 years.
Maybe some people are able to clear the Sars2 virus, but end up with an EBV reactivation they can’t get back under control. 1/
23
100
668
@NIHDirector
@jeremyfaust
@NIHDirector
: "The fundamental biology that's been conducted by the
#LongCovid
research team is really fascinating but also sobering. The agent can live for a long time in tissues. .
...And we have no effective way of eradicating it. Not yet." 4/n
5
119
553
@NIHDirector
@jeremyfaust
@jeremyfaust
: Are you suggesting that long COVID is actually, the mechanism of that, is persistent live virus in humans?
@NIHDirector
: We see evidence of persistent live virus in humans in various tissue reservoirs, including... nerves, the brain, the GI tract, to the lung.
10
125
553
@NIHDirector
I cannot get over how amazing this interview is.
@jeremyfaust
thank you so much for putting this out there.
We have needed this confirmation for SO LONG.
Now we need actual antiviral treatments.
7
40
546
@ashishkjha
I guess the 65 million of us around the world with Long Covid just don't count
20
46
513
Great list everyone with
#longcovid
should read.
Treatments that helped
#mecfs
patients significantly improve or go into remission. When you look at the list, most are targeting viral persistence and/or activating the immune system.
19
160
518
Hey everyone, I have a bittersweet update on my personal trial of antivirals for
#longcovid
.
The good news: I had dramatic improvement in 2 days. I'm convinced antivirals are my answer.
The bad news: Due to side effects, these aren't the right meds for me. 1/
21
47
516
Does anyone find famotidine (aka pepcid) helps their
#longcovid
symptoms?
I remember it really helped with my neuropathy last spring (before blood thinners) and I had no idea why
It may actually be an anti-Sars2 antiviral!!!
55
69
455
WHAT is the relationship between hypermobility and
#longcovid
?
"Many doctors may view GJH as a simple variation of normality. However, the presence of joint laxity provides an important clue to differences in connective tissue composition that can affect multiple bodily systems"
23
73
459
Most of my posts these days are mourning the state of the world, but I thought I’d share a moment when I actually feel hopeful.
I never dreamed it could be possible, but my
#longcovid
symptoms have significantly improved in the last 1.5 years… 1/
19
18
443
@Bob_Wachter
@TIME
@Jamie_Ducharme
@ashishkjha
@dr_kkjetelina
@ahandvanish
@PeterHotez
"It’s totally reasonable for people to go back to living their lives." The problem is we don't live in a vacuum.
Your choice to drop precautions affects others who don't want to make that choice, but might not have the luxury of keeping themselves safe.
12
21
402
@DrEricDing
Unfortunately, I think her statements perfectly line up with what the Biden admin's policy has been.
14
6
375
@AbeGreenwald
Hope you're enjoying the 118 likes out of 1 million views- that's 0.0118%. Everyone else finds you appalling.
4
2
347
Researchers found viral RNA in “the connective tissue where immune cells are located” up to 2 years post-acute infection.
Could this have anything to do with the relationship between joint hypermobility and
#longcovid
?
WHAT is causing our immune systems not to clear the virus?
1. 'They detected portions of viral RNA for up to two years after infection, although there was no evidence that the person had become reinfected. They found it in the connective tissue where immune cells are located, suggesting that the viral fragments were causing the...
27
538
2K
12
70
347
@NIHDirector
@jeremyfaust
@NIH
Unfortunately, as we all know this confirmation is just the first step. Treatment is going to take much longer but at least now we know the answer.
ANTIVIRALS.
Plus monoclonal antibodies, immunotherapies -- anything that will remove REPLICATING VIRUS. 6/n
3
39
325
6
11
306
@NIHDirector
@jeremyfaust
@NIH
And those of us with LC know that the best way to prevent Long Covid will always be to PREVENT COVID INFECTION.
This means NPI's like masking, routine testing, and air filtration. 8/n
2
48
298
@juliaioffe
How can a “correspondent” get something so wrong when the full text is available?
4
13
265
For anyone posting about
#longcovid
on other platforms and wondering why no one responds:
I genuinely think the algorithms are suppressing this topic.
I run a Facebook page with 2300 followers.
I posted about LC yesterday and my post has been shown to a total of 34 people 1/
49
68
261
@ashishkjha
I didn't consent to having my immune system dysregulated and I would like to have it function normally. Oh wait, you mean I can't just snap my fingers and have it go back to normal?
That's because something DAMAGED it
4
9
259
@NIHDirector
@jeremyfaust
@NIH
Now that we know the basic mechanism of LC, prevention is going to come a lot more quickly than treatment.
And no, I'm not referring to vaccination. "Vax and relax" messaging tricked many into a false sense of security, who now have Long Covid... 7/n
4
26
254
Lol at this point I'm flattered to have joined the club of people (mainly women) whose posts have gotten the red X from Marc.
All the best people are in it.
36
18
246
I’m starting maraviroc and truvada together. He normally prescribed them separately, but he’s giving them to me together because I’m so severe.
On the bright side, both were covered by my insurance 2/
10
20
239
@NIHDirector
@jeremyfaust
@NIH
So maybe someday, all of these useless Long Covid clinics can serve a purpose other than giving the public a sense of false security.
Maybe they can be used to administer actual ANTIVIRAL treatments. 12/n
4
21
237
Friends, just a reminder that in addition to the Paxlovid and Maraviroc/Truvada trials for
#longcovid
, there is ALSO the trial of Lau-7b in Canada.
It’s a combined Phase 2+3 trial, and the results are due THIS year.
7
72
233
@MalakaGharib
As someone else who is suffering from long Covid, his actions are entirely rational to me.
2
1
233
Positive news for
#pwLC
- new monoclonal antibody VYD222 from
@Invivyd
has positive Phase 3 clinical trial data!
Hoping this will be both a preventative and maybe someday a potential treatment for
#LongCovid
h/t
@dfocosi
for tracking this
5
57
230
Truly amazing news - apparently
#BC007
can bind
#SARSCoV2
spike protein. I can't even believe this!
BC007 may actually be working as an antiviral, on top of neutralizing GPCR-autoantibodies. Needs further study ASAP!
#LongCovid
@NIHDirector
10
41
227
@NIHDirector
@jeremyfaust
Personally, I'd love to know more about the state of this research and which teams specifically have contributed to this discovery.
Dare we hope that some of this has actually come out of the taxpayer money going into
@NIH
RECOVER? Maybe the RECOVER Paxlovid trial? 5/n
1
18
230
@NIHDirector
@jeremyfaust
@NIH
However, now that we know the mechanism of Long Covid, it will be MUCH easier to develop preventative treatments.
We need prolonged, THOROUGH courses of antivirals during acute infection to prevent the virus from taking hold. 9/n
4
17
221
Question: How did you first begin to realize “FND” is just the new updated hysteria?
I was diagnosed with FND after my adverse reaction to Moderna in 2022. I had no idea of the term’s problematic history. Thankfully the worst of my symptoms wore off after a few months…. 1/
15
23
219
This is huge.
The authors are disputing the idea that an overactive complement system is the root cause of
#longcovid
.
Instead they’re saying it must be a symptom of an underlying cause: either immune activation or chronic infection (my money’s on the latter).
15
40
202
@NIHDirector
@jeremyfaust
@NIH
@NIHDirector
says: "I think there's a lot of focus on developing new antivirals as a possible way of preventing long COVID, and the other might be more aggressive treatment with antiviral therapy upon initial diagnosis." 11/n
2
21
199
He says, "I believe that specific presentations seen in LC are likely due to how/where the virus is living - not all of us have exercise intolerance, not all of us have neurological symptoms. I think all of it is immune mediated response to the smoldering chronic infection" 2/
2
17
197
Lead author Dr Jessica Eccles said "Our study shows, for the first time, that the presence of generalised joint hypermobility (GJH) is a risk factor for long COVID, and that those with hypermobility are likely to have even greater levels of fatigue." 2/
4
61
183
Just noticed the Ampligen
#longcovid
trial is marked as complete... now we are just waiting on the data!
7
19
177
So if you're gonna do antivirals, go big.
Don't just take Paxlovid for 10-15 days and expect to be cured.
You need multiple drugs that attack the virus from different angles. 5/
1
14
171
The team looked to see if it was possible the platelets were picking up the viral material from the bloodstream.
But they determined that, in fact, no- the platelets were in fact being PRODUCED with infectious virus inside of them. 2/
2
35
175
Two major studies show macrophages are likely reservoir sites of
#SARSCoV2
Cardiac macrophages
Lung macrophages confirmed reservoirs in macaques
Is this it? Is this where all that viral RNA and spike protein keeps coming from?
5
52
175
I’ve thought for a long time that we’d need antivirals. The only reason I waited was to see more evidence about what would work best.
Now I’m regretting that bc he says now that I’m a year out from infection, the virus has had time to work it’s way deeper into the brain 3/
4
9
169
Update on Pemgarda
#SARSCoV2
monoclonal antibodies: just called
@Invivyd
and they confirmed it’s available now.
We just need a prescription and then we take that an infusion center where they can order Pemgarda directly. 1/n
#longcovid
#covidisntover
10
35
170
@UofTCOVIDRehab
It means so much to see masked faces. Thanks to (most of?) you for making this a conference people with
#longcovid
could actually attend.
2
5
173
“The connective tissue disorder is often thought of as a benign condition, but the authors said these findings suggest it may reflect a genotype more susceptible to fatigue and post-viral sequelae.”
Yup…living that now
#longcovid
#hypermobility
#mcas
8
34
169
@NIHDirector
@jeremyfaust
@NIH
@jeremyfaust
"You're saying this goes beyond the PCR's ability to get it in a regular swab so that we are missing chronic cases of SARS‑CoV‑2?
@NIHDirector
: "Correct." 13/n
8
24
167
Hey everyone, so I have a small update on my
#longcovid
antiviral treatment. I promise to keep you all posted on the good, the bad, and the mundane-
After my bittersweet success last week I took a few days off, then tried a small dose of Truvada yesterday… 1/
5
17
168
The key to taking antivirals for any chronic infection is that you need to take more than one. Otherwise you run the risk of creating resistance. That means you kill off the virus that the drug works on, leaving the 5-10% that's resistant to spread.... 4/
2
14
163
@NIHDirector
@jeremyfaust
@NIH
This essentially the same treatment that we'll need for Long Covid - it's just going to be a lot harder to get the virus out, once it's gotten in. 10/n
2
13
166
Sharing this in light of the Feb 2024 study from McComsey et al which is also strongly suggestive of a bone marrow viral reservoir -
In this case leading to abnormal activity and increased oxygen demand in peripheral blood mononuclear cells: 6/
.
2
35
163
Hey everyone, I can't stress enough that if you're going to trial antivirals for
#longcovid
, please be sure to investigate whether a combo would be most effective
For example, sofosbuvir will be much more effective if taken with an exonuclease inhibitor
5
36
156
Based on the research, the reservoirs that he and I are both concerned about are:
-GI Tract
-Bone Marrow
-Brain 9/
4
11
155
And for anyone still wondering whether viral persistence is a thing, this is the paper that changed everything for me.
I think there may be more than one type of immune pathway that leads to viral persistence, but I know this is me: 10/
Hey everyone, I wanted to highlight this groundbreaking
#longcovid
preprint
If you haven’t seen this yet you should know:
**High anti-spike antibodies that don’t wane 6 months after infection may be a sign of viral persistence** 1/
👇
34
275
817
6
16
154
"To me, when you see complement activation like this, it suggests that you have ongoing infection...Or it’s possible that lingering tissue damage keeps the system engaged.
This is a 1,000-piece jigsaw puzzle and you finished an edge" -Tim Henrich, LIINC
5
39
158
Doc and I talked about starting off with smaller doses because I tend to be sensitive to medicatons.
But these aren't meds you take to feel good. I won't stop if they flare up my MCAS.
I need this shit OUT. 6/
3
7
150
Great post on how someone’s
#longcovid
cleared after another infection (reinfection?) + fever.
Check out the comments on possible mechanisms re: viral persistence
18
12
150
Re-upping this because I’m working on an update on my situation :) Some positive developments
#longcovid
Just met with a doctor who's prescribing me multiple antivirals for
#longcovid
. Beyond disgusted with our govt for providing no warning and no treatments.
Honestly I urge anyone considering antivirals to start now. My doc said I might have made things worse by waiting.
78
211
1K
13
15
148
Luckily, we will be getting further study on bone marrow.
Tim Henrich mentioned the
@UCSF
LIINC team will be conducting bone marrow biopsies as part of their upcoming clinical trials, with support from
@polybioRF
.
Great interview from
@SessionsTlc
8/
3
25
148
"Covid causes profound mitochondrial dysfunction and so does long covid, and I believe plenty of the symptoms are also again downstream from mitochondria being wrecked and cells being unable to produce an adequate amount of energy to meet their needs..." 4/
1
16
147
"how that looks will vary based on where the immune system is attacking. Ex: vascular inflammation that occurs in the brain leads to localized hypoxia in the brain, resulting in POTS since the brain believes blood flow is compromised and is trying to protect itself" 3/
1
12
147
Interestingly, they only found circulating spike protein in 30% of the subjects tested, meaning it might not be the best biomarker.
Unfortunately spike is one of the main biomarkers currently being used in our best clinical trials in the US. 4/
1
13
143
@jakescottMD
What is the purpose of making statements like this? To feel superior to Long Covid patients whose disease is being minimized- if not outright mocked- by the medical field while they watch their t-cell counts drop?
16
8
142
@baddestmamajama
100% agree. I was shocked when a leading LC research facility recently told me only staff are required to mask and “we make sure patients feel comfortable.” Ugh. I will never feel comfortable if that’s your policy.
0
9
141
@Finn000000000
Wow, this started so strong and I was excited to see what you had to say… thought you were going to end up with “if this happened to me, I can only imagine what it’s like for people who don’t have these layers of privilege.” So disappointing in every way.
3
0
136
To be clear study was conducted on megakaryocytes in the lungs, however these cells are a major component of bone marrow as well.
From the Demystifying LC conference:
It's presentation 28, p. 31 here for anyone interested:
5/
1
15
135
@UCSF
@GladstoneInst
@BrodinPetter
Of course, the
#1
thing to take away from this is that the authors are now hypothesizing about a cure.
That’s right, they wrote the word CURE ✨
Specifically, antivirals (+presumably other strategies) to remove the persistent virus that our t-cells could not. /15
4
16
132
“The presence of the virus could lead to abnormal platelet activation and the formation of microclots, which would contribute to the various symptoms observed.” 3/
2
14
135
I'm grateful to the
#pwlC
who've shared their experiences with these drugs so far. However, based on these stories, I have a feeling these two drugs may not be enough for the majority of people.
So I'll be adding in more antiviral strategies in the coming weeks-months 7/
2
10
132
Today I learned Dr. Nancy Klimas WILL be running an upcoming monoclonal antibody trial for
#longcovid
!
#longcovid
trial to test a monoclonal antibody that targets current and previous strains starting in November 2024.
Klimas mentions no previous pharmaceutical companies would work with them. The same challenge happened with UCSF.
We need collaborative pharma.
h/t
@klmatter
8
50
193
3
22
133
@NoTechApartheid
I am so sorry to hear this. I watched the arrest of the peaceful protestors in the Sunnyvale office via the Twitch stream. If there is any way I can help or be a witness please let me know. They were respectful and didn’t damage anything.
24
0
127
In Feb, I made a few changes. I started taking this surprisingly cheap gummy of Omega-3 and ALA, and I found that I experienced noticeable improvements in pain and brain fog within about 20 minutes after taking it. So I doubled the dose. 9/
3
9
133
To me it is seeming more and more like the bone marrow could be a very significant reservoir, possibly even more so than the GI tract.
Infectious virus in ALL subjects tested in Bomsel study is a pretty big deal. At least the GI tract isn’t producing poisoned platelets 🤮 7/
2
13
131
To everyone who’s upset about the
#longcovid
“serotonin” study- the actual study itself is about viral persistence. News articles aren’t emphasizing that b/c serotonin is a better sound byte?
@Dakota_150
That headline is so frustrating as this is not what the research showed. The low serotonin was a downstream effect of viral immune response, potentially to persistent pathogens like reactivated herpes viruses or viral RNA fragments.
3
22
200
10
25
129
Hey anyone with
#longcovid
out there trying antivirals like Truvada and/or Sofosbuvir -- PLEASE have a look at this paper!
There's another class of drugs called exonuclease inhibitors which can make them way more effective!
@TristanVeness
will be trying!
Ordered 3 months worth of Sofosbuvir+Daclatasvir after learning about the powers of exonuclease inhibitors when combined with RdRp inhibitors
10-500x (in-vitro) reduction in viral units?!?! Yes please!
12
28
161
5
28
130
WOW. Evidence for viral persistence in the GI tract keeps adding up, with more and more specific mechanisms being identified.
#longcovid
McMillan et al. (2024) found viral RNA in 31% of gut biopsies from 46 IBD patients with COVID-19, suggesting that gut viral persistence in specific cells(enterochromaffin and tuft cells) may drive
#LongCOVID
symptoms.
5
60
177
4
25
130
Our T-cells fail to fully fight off the virus in the initial stage, allowing it to establish reservoirs.
Our B-cells then try to pick up the slack by producing tons of antibodies, but can't seem to fully clear it.
So we end up with viral persistence + high antibodies 7/
2
11
126
"How that presents likely varies wildly depending on what cells/organs are suffering from this dysfunction." 5/
1
11
126
@LongDesertTrain
@ryangrim
The "evidence" for zoonosis seems to be the same 10-15 scientists with conflicts of interest (to put it mildly) repeating over and over that everyone agrees with them.
9
17
123
@UCSF
@polybioRF
@SessionsTlc
We need MORE trials of antivirals, mAbs, and hopefully even immunotherapies like Tim Henrich mentioned to get it OUT!
The only good news is so much of our misery could be reversed if we can just remove it. Here’s hoping for the future! /end
1
8
123
#LongCovid
crew... how are people doing post-
#Novavax
?
I've seen a few people saying they had bad reactions immediately after... wondering if it stayed bad or if you returned to baseline?
Thanks for any info!!!
#pwLC
36
16
121
@Finn000000000
Leading LC researchers:
"Around 70% of those affected are women with an average age of 40, Jamoulle said. “If it had been 70% men, the research would certainly have been quicker,” noting that gender bias persists in the medical field.
0
17
119
@UCSF
@polybioRF
@SessionsTlc
One more thing I should add - the Belgian team of
@johanvawe
and
@jamoulle
have been developing a blood test for viral persistence. It goes into far more detail than looking at circulating spike protein alone.
Feeling very hopeful about this!
6
18
119
@UCSF
@GladstoneInst
We know there is likely more than one root cause of LC, and some people don’t make antibodies at all.
However I think it’s AMAZING that a phenotype of viral persistence has been clearly defined 🎉
We’ve moved past asking whether the virus is still present, to proving WHY 16/
4
8
114
Backstory: Ever since my 1st Covid infection in Feb 2023, it was a steady downward decline until I started Eliquis + clopidegrel in June 2023. I had extreme POTS, PEM, nerve pain + could barely lift my head or speak.
Truly I think they are the only reason I survived 4/
2
6
120
WOW. Listening to Dr. Morgane Bomsel right now at
@polybioRF
Spring Symposium.
Current data shows
#SarsCov2
persistence in megakaryocytes (bone marrow cells) causes specific symptoms in
#longcovid
patients!
Digestive, temperature regulation, sleeping, psych, and ❤️symptoms
7
31
119
For some reason, this process seems to be “restrained” in LC patients.
The team found the higher the level of anti-spike antibodies, the lower the person's rate of CD8+ clonal expansion.
Essentially, the two responses inversely correlated, when they're supposed to match 6/
2
8
115
As you may know, I believe I'm in the chronic Sars2 infection subgroup, due to my persistently high anti-spike antibodies.
I've been trying to plan a long-term combination antiviral trial. In the meantime, I tried a bunch of things... 2/
3
5
115
@RevampedCP
Worked at a nonprofit helping people with disabilities… and my employer used my own disability to retaliate against me for reporting sexual harassment
2
5
112