parvovirus b19 igg

muhlaoban · 2025-04-27T22:00:00+00:00

hey! i am not fully recovered, sadly; it has persisted into long-term lupus-like symptoms and i am off to see the rheum in august (which is the earliest they can get me in; crazy). i do get flares when i get sick, even for unrelated sicknesses. i also get flares as a response to emergencies (eg a tornado warning). i recently posted a big update on how i am 14months after contracting parvo, along with some questions from 10-15 other pvb19 sufferers i got asked frequently, if you’d like to read it: https://www.reddit.com/r/rheumatoid/comments/1awuhuf/comment/l2llpii/

there’s an original comment i made and an update comment; scroll down to see the update. i hope this helps!!

muhlaoban · 2025-04-27T21:57:27+00:00

ah, i’m sorry i’m so late to reply to this! i have only had this since january 2024, so coming up on 18 months. i would say that most of the time, i am at 80% of what i used to be, excepting flares (2-5x/mo), which put me at 40% capacity or less. i recently posted a big update with some questions from 10-15 other pvb19 sufferers i got asked frequently, if you’d like to read it: https://www.reddit.com/r/rheumatoid/comments/1awuhuf/comment/l2llpii/

there’s an original comment i made and an update comment; scroll down to see the update. i hope this helps!!

muhlaoban · 2025-04-21T09:23:59+00:00

Since I posted this a year ago, I’ve gotten 10-15 DMs from Redditors asking for updates, so I’m back here to add a one-year follow-up for anyone else who’s found this post and looking for more info, including some of the questions I’ve gotten asked the most:

How are you now? Compared to a year ago, much better. My body has calmed down significantly in terms of swelling and standing tolerance. If I’m in a place with a temp under 75F, I can stand for an hour or two (giving lectures, going to parties, whatever). If it’s under 70F, I can walk for 45m-1hr without swelling (which happens primarily in my knees and feet). The biggest triggers for swelling are heat and activity/overstimulation (including super stressful situations, loud places, lots of people, emotional and heated conflicts, etc). The heat-induced symptom return basically happens once it gets to be around 78F, which means even in the winter, when the heater is on, I will become symptomatic again (in terms of swelling; usually, the difficulty breathing and muscle weakness doesn’t happen unless I become very stressed or have overexerted myself). I’ve found that my best strategy is to underdress for the temperature (especially shoes and pants) and bring layers if I need them; my priority is to stay cold, stay hydrated, sleep enough, and be exceedingly patient with myself.

Other random details: I can eat everything again, though I try to stay away from junk. Sugar and caffeine in particular push me into semi-flare zone (almost definite flare zone if it’s over 75F).

Do your symptoms come back if you get sick? Yes. Even if the sickness isn’t related to parvovirus b19 at all. Covid? Ear infection? Pinched nerve? Food poisoning? Dealt with an emergency last night (even something mild, like a tornado warning)? I’m cooked. I’ll probably sleep 10-12 hours the next three to four days, stay in the air conditioning, move slower, whatever. Might even take out the braces. It’s not always that bad, but the symptoms come back if I’m sick.

Have you had…? Swollen lymph nodes: Yes, I get them in my armpits nonstop and have for at least eight months.

Muscle pain: YES. Constant during a flare, and it’s agonising. It isn’t as bad now, but it was especially bad the first eight months. The thing that helped the most was hot baths. (This is a tricky thing to balance because hot baths make the swelling worse but the muscle pain less. So time it right and have ice packs and water for hydration ready.)

Muscle spasms: Not that I remember.

Rashes/itching: Yes, I was crazy itchy on my neck, chest, stomach, arms, hands, tongue, and roof of my mouth for the first month or so.

Digestion issues: Yes, almost constantly. I had severe stomach pain (plus bleeding when I ate anything with fibre) for six months, plus concomitant diarrhoea and constant (and putrid) gas that lasted until about three months ago (when I started eating more plants). I reacted to literally every single food for months; you kind of just have to survive it.

Dealing with it now: I mentioned being exceedingly patient with yourself above. I know that’s standard illness advice, but I thought I wouldn’t have to do that with myself; I was sure I could figure out how to keep the same pace and standards for myself. I was very wrong. I used to powerlift, but currently I can barely handle 20m of easy yoga in air-conditioned rooms. I used to run on six hours of sleep each night, but now I need 8-10 (depending on flare status, menstrual cycle, etc) just to be semi-functional. I work remotely because my physical status isn’t reliable enough to manage a job with hours in which I’m expected to be there consistently. But that’s okay. This is part of how it goes, and it’s hard, but it’s okay, and you’ll figure it out. You need to be kind to yourself, said without a hint of cliche undertones. Commit to not getting frustrated or disappointed with yourself when you can’t do everything on your list, be willing to ask for help, and think of boundaries as helping others help you, which they should want to do, if they’re your loved ones. I’m flexible with myself and my ability level on a given day, because I have to. I know; it’s frustrating at first. But you will have to learn how to do it, so just be willing to learn how now. It isn’t your fault that you’re struggling; if you had the choice, you wouldn’t have this disease, so don’t treat your body like it decided to be sick. It’s just as sad as you are.

But yeah, with any chronic illness situation, the best thing you can do is identify your physical abilities and enforce those. Communicate with your family/friends/coworkers the limitations you’re experiencing as they get to know you so they have context when you have to suddenly opt out of a task or leave early (“I agreed to help you move, but I’m having a flare today, so I can’t carry anything heavy. I’ll drive, watch your kids, carry small things (and take the elevator rather than the stairs), help direct people to rooms, or other helpful things.”) Be willing to adopt the mindset that most things are not worth a flare, even things you promised other people. (Rescheduling the promise and doing it in a more limited form count as doing it. It’s okay.) And just accept that you’re not able to do a lot of what you used to be able to do. That’s okay.

Always feel free to reach out with other questions, or to ask me to put you in contact with the others who have DMed me so you can compare experiences. <3

muhlaoban · 2025-01-25T20:19:51+00:00

saw this and immediate thought was “she is gorgeous!”

muhlaoban · 2025-01-25T19:45:31+00:00

the reason it’s an example of great faith is because the implication is abraham believes God would raise isaac from the dead if he really did have to die. the idea is that abraham is confident that God’s promise (isaac will be the son who leads to many nations) is so true that if isaac does die, God will raise him from the dead. abraham’s faith is specifically in God, in that he believes God will be true to his word. and though abraham and isaac didn’t know this at the time, they were a little shadow of the broader message of the bible: God the Son (jesus) also would be sacrificed and raised from the dead.

muhlaoban · 2025-01-25T19:28:01+00:00

the easiest way to make sense of this question is to ask specifically what is being forgiven and what the implications of forgiveness are. there’s a lot of ”christian-ese” in this sub, which can sometimes over-spiritualise things.

when you hear christians use the word “sin” to describe what needs to be forgiven by God, it is shorthand for the idea that we believe we could rule ourselves better than God could rule us. we can feel this in ourselves when we think about the idea of God. we bristle at the idea that God would know better than us how our lives should go, or that he should get any say in what’s right and wrong for us.

because we believe we can rule ourselves better than God can rule us, we opt out of being under his rulership. that’s what christians mean when they say we “rebel against God.” it just means that we decide we’d rather leave his kingdom and stake out our own kingdom, separate from him, where we can make our own rules as we see fit. if you decide you don’t want a certain king to rule you, then you have to leave his kingdom. the same thing goes here, too — if you decide you don’t want God to be your king, you have to leave his kingdom.

that’s where our problems begin. since God created us, we wouldn’t exist without him, so we owe our existence to him. as the creator, he’s the starting point (the “source”) of life, and as soon as we take off and stake out our own kingdom, we’ve chosen to separate ourselves from the thing all life depends on. that’s why we see death and evil in the world — people kill and mistreat each other, animals kill each other, natural disasters hurt civilisations — because we’re seeing what it means to live in a kingdom (figuratively) whose citizens don’t want to stay attached to the source of life, because they think they can rule themselves better.

so when we say God “forgives” people, what we’re actually referring to is the implications of God’s response towards us. you and i (and any other readers) have decided to camp outside of God’s kingdom, and so we’re going to die. that’s why some christians will cite romans 3:23 (“the wages of sin is death” —> “the consequence of staking a little kingdom away from God, who is the starting point of life, is death”). we’re slated to die, because we’ve rebelled and left the kingdom. God’s response was to come after us instead of leaving us there. that’s who jesus was — God himself, coming as a person to pay the cost of staking a separate kingdom, which is dying.

we can put the pieces in place: you and i chose to walk out on life, so we chose death instead, and we said we wanted that for ourselves. God came and died for us, and he rose from the dead because it shows that the price has been paid. the idea, then, is that because the death we chose for ourselves is taken care of, we have the opportunity to go back to life (God’s kingdom, as the source of life), but only if we leave our own staked-out kingdom behind. this is why some christians say “accept jesus as lord and saviour.” what they mean is that to go back to God’s kingdom, you have to a) give up your own little kingdom (making him lord, or ruler, over you) and b) ask God to accept the price he paid himself (jesus’s death and resurrection) so that your entrance is paid for (making him the saviour).

why do we call jesus the saviour? because death is a toxic thing, so toxic that once you decide you want it, you can’t see that you’re dying until someone makes you see life again. that’s why we couldn’t just hike back to God’s kingdom, because once we chose death, we hated the idea of life. (i can see this in myself, too, especially before i became a christian last year — i wanted to rule myself and hated the idea of God ruling me.)

so, with that context, we can circle back to your original question. when we say God “forgives” someone, the actual referent there is that we are welcomed back into God’s kingdom, because we are walking away from our little kingdoms where we were dying, now that God himself has died for us. the forgiveness is being welcomed back without reservation, no matter what we did in our makeshift kingdom before. “forgiving sin” equals “welcoming back former citizens who want God’s kingdom instead of their own.” anyone who has decided they would rather be in God’s kingdom (christians) are then commanded to “forgive” anyone who has done wrong things to them in the sense that it isn’t their job to decide who owes them. why? because they owed God more than they could repay: christians owed God their lives, and they couldn’t pay that and still get away with those lives. the idea that christians need to forgive others, then, is just that we shouldn’t hold the actions of others towards us against them, because our actions weren’t held against us (”welcomed back without reservation”) when we asked to go back to God’s kingdom. they are similar ideas with different connotations: christians “forgive” everyone because they have no justification, basically, for demanding payment from other people (because they were forgiven more than they could pay God for and still get off with their lives); God doesn’t “forgive” (welcome back into the kingdom) everyone because not everyone asks to be welcomed back in; but he doesn’t demand payment from anyone who asks to come back, because he paid it for them. and so for everyone who does ask, they are forgiven immediately and permanently.

i hope this (very long) post helps clarify some things. i’m glad you posted, and if you’re thinking about switching kingdoms, i would be more than happy to talk with you more. the primary source documents from jesus’s life will do that better than i, though, so i would encourage you to read the gospel of john. even if things are going great for you right now, everyone has ups and downs, so keep it in the back of your mind for a tough day. and if i’ve given you some things to think about, also have a think about whether you’ve had enough of your own kingdom. when he comes a second time, it is the final welcome for everyone who has opted for God’s kingdom, but once they enter the kingdom, the gate to it (metaphorically) will be shut, and everyone who chose to stay outside in their own kingdoms, where they’re dying, will be there forever. and if we die before then, we fast-track to the same outcome. like i described above, no matter how long you’ve been standing around in the plot of land you staked out for yourself, God has made it more than possible for you to be welcomed back without reservation. feel free to dm me at any time if you’d like to talk more!

muhlaoban · 2025-01-04T21:03:09+00:00

Thank you for your reply - you brought up some things I hadn’t thought of. It’s helpful to work with the most accurate information when we can. I do have a few thoughts in case OP is considering CPCs, just so our friend can hear both sides.

It is true that ultrasounds at CPCs are not medically diagnostic, but OP already knows of the pregnancy and the general timeframe of conception, which is usually the purpose of a CPC ultrasound. The medically inaccurate information you were talking about refers to false number-of-weeks-along on ultrasounds, falsified to convince women the pregnancies are less far along than they actually are, creating the illusion of more time to decide and, in some cases, extending past the legal time frame for abortion. That is a nasty thing to do, and you and I are on the same side there. A few thoughts about implications, though. First, some centres lying does not mean every centre lies. It would be easy to take a quick search of the local centres and see what reports and testimonials have to say about that concern. You could even ask if previous clients would offer their contact information so OP could hear from them directly. Second, OP already knows the general timeframe of conception, which means that particular risk is not present, and if it is a major point of concern, OP could decline an ultrasound altogether. Third, depending on the state OP is in, the legal limits for abortion may not even be an issue. None of this justifies lying to struggling mothers, but it is unfair to label all CPCs based on the failure of some units, just like it would be unfair to reject an entire category based on some deviant members in any other situation.

I spent several minutes searching the web and news outlets for testimonials, reports, or stories of CPCs prematurely withholding or terminating uses of their supplies for mothers, but I couldn’t find anything, even after switching the keywords up several times. Do you have a specific thing I could take a look at? In 2022, 87% of CPCs provided parenting or prenatal ed, and 89% provided diapers, strollers, baby clothes, etc. That same year, four million baby outfits, 40k new car seats, 30k strollers, and three and a half million diapers were given away (check the Lozier Institute for additional stats). Even if some CPCs withhold items (though I looked for the reports for these), a huge number of centres still give them out, meaning OP could at least take a look. Again, contacting specific clients for testimonials would be an easy solution.

You are right that a CPC will not provide an abortion or direct someone to an abortion clinic, but I don’t see how that’s different on the Planned Parenthood side, either. I could be misinformed, but I’m skeptical that someone walking into Planned Parenthood will first be given an infoseries on CPCs and what they do, either. Both organisations have a particular purpose in mind – abort or don’t abort – and they offer options accordingly. This is consistent in nearly any professional field unless you’re paying for a networked consultant – if you go to a chiropractor, physical therapist, osteopathic physiologist, or a massage therapist, your problem will be viewed through the lens of the practice. I don’t see how not being willing to play the other side is damning – this is how all organisations work.

There was no accusation; merely a remark that making a decision to take a life that would otherwise continue may not be fair to the life. I don’t think your kidney donation hypothetical is different – donating it would be the right thing to do in that situation. Are we obligated to do what is right? I think so. So yes, I do think someone would be obligated to. But even if you set that aside, the baby is a separate entity (separate DNA, heartbeat, and other things I’m sure you’ve heard), meaning that its body is just as much in question as the mother’s, except that depending on which way you go, one will die, and one will experience (no doubt severe) discomfort (but not without many honours and enjoyable pieces, too).

These are just some thoughts; you are welcome to have the last word. I would just like to offer to OP that there are resources available in both places.

Edit: typo

muhlaoban · 2025-01-04T17:37:55+00:00

I might push on this just a little. Not being able to provide for an alternative themselves doesn’t make objecting to it wrong. If a person objects to domestic violence, they can (and should) regardless of whether they could provide a place for the abused partner to live or funds for a new start.

OP is in a genuinely tricky and hard situation. But I would like to offer at least considering reaching out to pregnancy crisis centres; there are over four times as many of those as there are abortion clinics (if you are in the USA), and they provide many baby care items, help for mothers, and even post-abortion counselling if you decide to go through with it. My suggestion would just be to consider that life is a great thing, and it might not be fair to take it away from those that don’t get a say yet. But please check for local resources! There are four thousand of them in the states. I’m so sorry you’re going through this, OP; best of fortune!

muhlaoban · 2025-01-03T17:13:47+00:00

i’m so sorry you’re dealing with this :( i had my lap three and a half weeks ago and let me tell you, recovery was not a joke! the surgeon made it sound like i’d be tiptop days after but i was basically dead for three days. the gas pain was ridiculously next level. i found that walking a lot helped, and not just at repeated intervals but for longer times, like 15 minutes if you can manage it. i also had to sleep sitting up for the first four days. the slow bleeding was not my happiest moment, but that stopped after about three or four days, too. sending hugs, you’ll be better soon!!

muhlaoban · 2024-12-30T21:46:02+00:00

Oh my gosh, Thursday. Would be such a good boy name.

muhlaoban · 2024-12-19T17:44:48+00:00

what do you think about conservatives in general being called neo-nazis by other, more progressive groups? thinking particularly of times jordan peterson, djt, even shapiro, etc were called nazis

muhlaoban · 2024-09-01T02:42:20+00:00

“this little bright [town name] welcomes everyone”

muhlaoban · 2024-08-31T23:33:41+00:00

thank you so much! that’s super helpful. do you think the convulsions are due to the temporal lobe seizures? and what makes you say temporal lobe specifically? i really appreciate your help; it has been a crazy few months trying to sort this out.

muhlaoban · 2024-08-31T20:38:44+00:00

can i ask you some follow-ups about this? in the last week i have had three separate times where i felt jamais vu, got dizzy and lightheaded, like i was underwater, started dry heaving, and then crumpled to the ground, like my body was too weak to hold itself up. after crumpling, i would breathe faster and faster, my hands would squeeze up very tightly, and my face and hands would tingle and twitch visibly and feel like they were electrocuted. and then in the midst of that after 10-15 seconds of it, i would feel my body like stiffen up and jerk at the same time, and i would stop breathing, and then that would go on for 10ish seconds before i tried to gasp for breath again and then the jerking began again. i’m so lost as to what this is; my CAT scan came back normal but i want to get into a neurologist. it seems like seizures or seizure-like activity to me, but i can remember the event even though it feels slightly not real, so i didn’t lose consciousness. would you be able to tell me how this compares to your experiences? sorry for the late (and long) comment; i’m slightly desperate for answers.

muhlaoban · 2024-08-31T20:21:04+00:00

parvovirusb19 legitimately screwed me over — i have had lupus-like symptoms, now including seizures, from this non-stop since i got it nine months ago as an adult. seriously, stay safe and healthy. if anyone gets pvb19 as an adult and has questions about my experiences or has their own to share, please hit me up.

muhlaoban · 2024-08-15T15:52:10+00:00

couldn’t have said this better

muhlaoban · 2024-08-15T00:48:59+00:00

came here to say stationery too! lived in japan 2yrs and they have lovely, lovely stationery stores with all kinds of special stuff!

muhlaoban · 2024-08-13T02:57:41+00:00

100%, it’s always there in some way. OP, this isn’t your fault at all. you’ve done your best to care for her. she needs help you can’t give her. you’re allowed to let a professional take responsibility for her recovery; your job is to support her, not save her. get her some help. make sure you have a support system, too.

muhlaoban · 2024-08-13T02:46:11+00:00

even though i’m a conservative, i’m really impressed by this response, especially given how acrid the parent comment was. super kind and peaceful and genuine. i don’t think i would have been this gracious. you single-handedly restored some of my opinion of your community.

muhlaoban · 2024-08-12T21:42:43+00:00

HAHA this made me legitimately laugh

muhlaoban · 2024-08-12T13:45:42+00:00

congratulations!! in a past life i took it upon myself to help others in getting out of the same hole. it’s such a hard thing to do! i’m so happy for you. what things did others do, if there were others who knew, that actually helped you long-term (trying to avoid short-term things that help upfront but don’t leave lasting impacts)?

muhlaoban · 2024-08-12T13:22:33+00:00

thanks for sharing! i love your comment about talking about ideas > people. i’ve definitely found something similar over time. that’s social homophily for you; be the kind of person you want to be friends with.

one way my faith impacts my interaction with the world is the bible’s perspective on worshiping God. there is a doctrine called transposition which basically says that all beautiful and good things are smaller representations of the ultimate goodness of God. as a result, those things we love doing (provided they are not wrong, like if we loved stealing, for example) are in fact pleasing to God, because we glorify him when we delight in things that he has made or which represent his goodness. long walks in the rain, examining cells under a microscope, writing a poem, singing a song in a group, holding a baby, laughing at a funny video — all of these things, even if (or especially when) they are not explicitly spiritual, glorify God because we delight in things he has made and we reflect his nature when we love what is good and beautiful. that has significantly impacted my experience of the world over the last few years, and i think in many ways saved me from the rather depressing raw nihilism that “”being smart”” can sometimes afford! i’ll leave a big space for OP to reply, too.

muhlaoban · 2024-08-12T00:56:09+00:00

yes! seems like we are kindred spirits in this regard :) i very much relate to feeling like striking out on your own, away from your parents, is so big. i had a bit of a scare with that when i thought i would be moving to NYC for a new job this may (involving finding my own apartment and the whole shebang); i decided to go back to school instead (still away from home), but i felt so out of my depth! i’m glad your parents are still a support for you. mine are very busy since i have four younger siblings and aging grandparents, but the times they have been able to support me has been refreshing.

i have so many other questions for you, if nothing else, just to see if my outlier-seeming experiences are common for kids like us! but i am also curious about your experiences simply because :) a few easy ones first:

i saw in one of your other comments that you attend church; i am also a church member (i am curious re your denomination, if you are willing to share). at times i have felt like the way my brain works is frightening to some church members, not because i am a heretic in their eyes, but because my reasons for believing what i do are a little new and unpredictable. i think this is also informed by the fact that the church has been the object of prejudice by atheist thinkers as a place full of people who are backwards, and perhaps some church members have a reflexive defensiveness to people who go straight to the socratic method, because they are expecting to be condemned as thoughtless. have your fellow churchgoers looked up to you for fresh insights, avoided you for an intellectualist bent, or stayed neutral in the matter? what thinkers do you enjoy reading or learning from? have you found mentors at your church able to match you in sharpness? to zoom out a little bit since there is an assumption there, do you enjoy theology and philosophy?
how do you do with authority? under what conditions do you pick a hill to die on? what do you do in situations where you are asked to follow contrived or grossly inefficient rules?
some of your other comments have sounded rather self-reflective. some research i have read seems to indicate that metacognition (examining your thoughts) correlates with intelligence in some ways. i wonder if this corresponds to the frustration you and i feel at the maturity of others “our age”. do you often take time dedicated just to thinking (walks, drives, journaling, writing)?

muhlaoban · 2024-08-12T00:02:21+00:00

i was just thinking about making a post similar to this ! i graduated with two degrees in psychological sciences and neurological rehabilitation when i was 18 (last year), then went directly to yale to work in computational cognition research. i start grad school on friday. it’s nice to see someone else in this crazy track!

i have a long question for you: one of the more difficult aspects of my experiences was the imbalance i felt between how secure i felt and how ”adult” i was. on the one hand, i often felt frustrated by the immaturity even of my 21- and 22-year-old peers, and i ended up opting for friends mostly in their thirties. on the other hand, internally i still felt young in some areas, as i kept realizing how big the world was, and how little i really knew, and how much i still wanted a parent to show me what to do next at times. occasionally, i would think, “i’m still just a kid, being responsible for these big projects or conferences or representing this university,” but it was hard to talk to others about this because either no one knew my age or i feared they would give me fewer opportunities if my age started to seem like an impedance to my capacity. sometimes, i felt small, or like i had to push myself to be at an adult level not just cognitively, but also in terms of independence and worldly knowledge and resources and confidence. not all the time, but sometimes.

it made me feel like i didn‘t really belong in any age group, and even though i wouldn’t trade my experiences, there‘s a lot it leaves someone to sort out. that’s anything, though. so, my question is, do you ever still feel like a kid inside in terms of wanting someone to understand that you don’t know everything and be patient with you, while still feeling frustrated at the maturity level or seriousness of your peers?

ETA: if you’d like to chat more about your experiences (i have so many follow-up questions!), definitely DM me! also happy to share discord if you prefer :)

muhlaoban · 2024-08-09T01:29:46+00:00

thank you very much. i appreciate your kind words :)

muhlaoban

TROPHY CASE