Comment by gambiting | Hacker News Reader

Comment by gambiting | Hacker News Reader

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A lot of virus infections are unfortunately like that too. Few years ago I had a fever that wouldn't go away, night sweats, no appetite, nothing......finally got admitted to a hospital with an infectious diseases department, they ran about 40 different tests.....all negative. Did few dozen more, this time on all kinds of tropical/exotic diseases.....all negative. Few weeks of back and forth while I was still very unwell, losing a lot of weight. The doctor looking after me was suspicious it's actually HIV that's not coming up on the tests for some reason, repeated the tests like 3 times just to be super extra sure.....eventually they just said "it's some kind of virus but we don't know what, so we have no idea - go home and rest, it should improve within few weeks but in the meantime we have no solution for you".

Couple weeks later several of my joints got really swollen which led to them testing me for a human Parvovirus-B6 infection, and indeed, that's what it was - but it was just a lucky guess by the doctor there, he said they don't normally test people in my age group for it because it's incredibly rare for adults to get infected or show any symptoms, but lucky me, I was in that 0.000001% group that not only got infected by also had severe symptoms. But even then it was just "ok, we know what it is but there is nothing we can do to help, it should go away, oh and btw there is a 5% chance you will continue getting symptoms for years if not forever". Well it's been 4 years and I'm still fighting it, so...........

I had parvovirus B19 a few years ago as well (mid to late 2019). I still have some nerve issues from it (I gave up on treating that; it presents like rheumatoid arthritis but the blood factors for that are missing). I'm surprised to hear that it's considered so rare; my wife caught it from me and also had the symptoms (huge swollen joints, interesting rash like the Trill from Star Trek, incredible back pain — and she too has lingering nerve issues). My daughter also got the classic presentation of fifth disease, which is how I narrowed down what it was. A weirdly under-documented illness, especially considering it can lead to lifelong arthritis.

>> it presents like rheumatoid arthritis but the blood factors for that are missing

I have the same thing, and I also caught mine in 2019!!!! For me the treatment is one steroid shot a year, I've seen various rheumatologists and they all said it's postviral reactive arthritis, but with the recurrence of symptoms being so rare(once a year) they wouldn't recommend treatment with any of the typical medicines like methotrexate(which is probably a good thing tbh). None of them predict this is going to go away any time soon though, apparently the average time for post-reactive arthritis to resolve itself is 8-10 years.

It's incredibly interesting to find someone else with the same symptoms as me though, most doctors I speak to say this is the first time they've seen a case like mine(after parvovirus that is, reactive arthritis after viral infections is unfortunately somewhat common).

>>I'm surprised to hear that it's considered so rare

I've been treated at one of England's largest infectious diseases unit and they said it's incredibly rare for them to see an adult with an active parvo B19 infection, they literally had a handful over the last 10 years. That's not to say that the infection itself is rare, just that it rarely gets diagnosed properly.

May I ask some questions:

Your white cell counts were indicative of viral infection?

PCR was positive, indicating infection?

Do you supplement zinc, C, B6, magnesium?

For 1 and 2 I don't know, I assume so, they never showed me any stats at the hospital.

And yes I do, all of those + vitamin D.

Be careful with supplementation of transition metal trace elements. Absorption of one is usually competitive to others such that it cause toxicity in one and deficiency in another. A multivitamin is a safer source but having blood levels checked regularly would allow for calibrated intake.

For example, as a poor absorber of Vitamin D3 I require 12k IU / day (with all of its cofactors) to stay within the established blood range. It would be inadvisable and reckless for anyone to consume this amount of a fat soluble vitamin without monitoring blood levels. I'm also prone to iron deficiency anemia of unknown etiology (cause), but that's another problem suggesting either poor absorption (most likely), cancer, or unexplained bleeding.

I'm also prone to iron deficiency anemia of unknown etiology (cause), but that's another problem suggesting either poor absorption (most likely), cancer, or unexplained bleeding.

Or undiagnosed parasitic infection. They scavenge iron and some hide from the immune system by changing their protein markers.

I don't know where you are, but American doctors tend to not test for them. "Third World Problem. Nothing we need to worry about."

And we don't keep stats on them because "Third World Problem. Nothing we need to worry about." so we don't actually know how prevalent they are.

And yet, there was a huge interest in anti-parasite medication during the panny-D, lol.

That said, these "third-world problems" - by which I think you mean things like parasites, curable / preventable / vaccinatable diseases, "tropical" diseases, and mosquito-borne diseases - are becoming more and more prevalent in the US and Europe because of climate change and other factors - I'm thinking poor health care, aging infrastructure (think Flint), shortcuts (think the UK dumping sewage into the sea because their infrastructure can't handle processing), but also evolution, things like parasites being able to survive better.

May I ask why you'd want to know about zinc, C, B6, magnesium specifically?

Probably for their contributions to the immune system.

Do these actually contribute to the immune system at a significantly higher level than any other nutrient/micronutrient, or is this just a repetition of what appears in advertising, whose purpose is profit rather than facts?

If you're using significantly in the statistical sense I can't answer without doing a deep dive, but from my reading of (admittedly) mouse models, it's more difficult to induce diseases unless a zinc deficiency is created first.

I can't find any reference to "Parvovirus-B6" in the literature or any taxonomy. There is only Parvovirus-B19, the near ubiquitous causative agent of the childhood infection known as fifth's disease. Are you immunocompromised? Has any radical treatment such as convalescent plasma been considered?

https://virologyj.biomedcentral.com/articles/10.1186/s12985-...

Note that the attached figure describes pathogenicity as affecting any animal host, not just humans.

Yes, B19, sorry don't know why I said B6.

And yes it's very common in children with mild symptoms, and in adults it's extremely rare to have any symptoms at all(from what I understand it's actually not well studied how common it is as an infection because the symptoms either don't exist or are the same as normal cold so no one gets tested for it). At the hospital at the specialized infectious diseases unit they told me they have only seen 5 adults with it in the last 10 years and I've been the worst case they had.

>>Are you immunocompromised?

No

>>Has any radical treatment such as convalescent plasma been considered?

Not that I know. I did eventually start recovering so I guess they didn't want to go nuclear.

No worries.

I hope they publish a case study article as a clinical treatment guide for the next cases.

Your kind of situation exposes one of the current inadequacies of the clinical medical profession: falling through the epidemiological cracks of rare diseases and syndromes. There is a finite amount of evidence-based medical knowledge and an inability to rapidly test and adapt to infinite presentations that don't fit neatly into an "average" common case. Perhaps we need both cheaper lab tests/diagnostic procedures (not Theranos in execution but close to it) and tens of thousands more "detective" MD researchers meeting up with clinical side of the healthcare industry to elucidate the unknowns and the unexplained rather than shrug of patient concerns lacking clear explanations. Lastly, clinical MDs should aim to never forget their roots by publishing more.

Adding to the barrage: did they happen to mention why they were reluctant to use one or more antivirals?

They did not, I was told that the symptoms I have should subside within a month and if they don't to come back - but in the meantime to just use painkillers to manage, and try to eat as much as I can. It eventually started improving(although it took me a long time to recover to "normal") so I never went back. Looking back at it now I think it's because while I felt absolutely awful and it was rough from my point of view, for them it wasn't a severe enough case to start any more advanced treatment since all my blood tests were still "ok-ish" and I wasn't collapsing or anything. That's just my guess though.

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