u/sparklegemstone

30s Female, Want To Date, EBV -, Concerned about ME/CFS risk
▲ 6 r/EBV

30s Female, Want To Date, EBV -, Concerned about ME/CFS risk

I'm a woman in her 30s and I want to date with physical intimacy while protecting my health, so I've been researching STIs and the like. I'm concerned by what I'm reading about EBV and ME/CFS that suggests I might have a ~1 in 27 chance of developing ME/CFS. I'm interested in:

  1. some validations or corrections on my understanding of things
  2. if others have faced a similar dilemma or how others are thinking about this
  3. if there's anything I can do to reduce my risk of long-term harm to my health.

I don't want to unnecessarily limit my life if I'm misunderstanding anything, but I also want to be realistic about real risks.

My 1) EBV VCA IgG and 2) EBNA are both negative. My understanding is that this means that I have not had EBV myself and I will likely get infected with EBV if my partner is infected and shedding virus.

My understanding is that 90-95% of people have been infected by EBV and now have latent infections that stay with them for life, and that for some non-insignificant portion of time periodically across the calendar year, every year, these 90-95% of people will asymptomatically shed EBV in their saliva and be able to infect others. Therefore if I were to date someone EBV+ including physical intimacy, I would likely be infected myself. Once source I saw for this is the Merck Manual which is well-known medical reference:

>Transmission...much more frequently occurs via kissing between an uninfected and an EBV-seropositive person who is shedding the virus asymptomatically. Only about 5% of patients acquire EBV from someone who has acute infection

My understanding is that 25-50% of primary EBV infections (when you're infected with EBV for the first time) in people older than children cause IM (infectious mononucleosis).

My understanding is that, though the research is relatively recent, there's decent evidence that about 10% of IM cases in people older than children cause ME/CFS, a life-changing chronic condition that hurts a person's quality of life long-term and can be debilitating.

(25-50%) x 10% = between a 1 in 40 - 1 in 20 chance of me getting ME/CFS if I'm dating in the general population.

~1 in 27 seems uncomfortably high for me developing a severe chronic illness that could long term harm my quality of life, and I don't know if I can be okay with accepting that amount of risk. But I also don't want to be single forever and find EBV- people in their 30s-40s to date seems unlikely, especially when no one knows their status without testing.

So am I understanding this risk correctly or am I wrong in some way? I feel stuck in a hard situation.

If that is a fair estimate of the risk of me developing ME/CFS, then my follow up questions would be:

  1. Is there anything I can do, prophylaxis measures, IM treatment, etc., that reduces my risk?
  2. If I am the ~1 in 25 that develops ME/CFS, what does the prognosis look like? What's the chance that it is lifelong chronic illness that reduces my quality of life vs. something I could mostly or totally recover from in time? I saw something that suggested about 50% of those that get ME/CFS from IM might recover enough within a year or two to no longer classify as ME/CFS, but I'm less confident about the various courses that ME/CFS can take.

P.S. I just wanted to say that my heart goes out to everyone living with ME/CFS. Only with the addition of covid to our lives have I become more aware of how the US medical system is failing people living with chronic illness and how they are made invisible to and isolated from our communities. It's hard to believe the staggering number of people living with ME/CFS and how common it is, when you never hear anything about it, either in terms of risk to your own health or about investments to discover medical advances to help/protect against it.

u/sparklegemstone — 1 day ago

TL;DR BinaxNow and QuickVue are the only USA tests I know of with long swabs, but I'm also frustrated with how hard it is to tell a faint positive from a negative.

Got this result today and thought it was a faint positive until I double checked with Metrix PCR, and the PCR result was negative. I recognize that the sample line is very faint in the picture because an iPhone camera doesn't pick it up well (turning up your monitor brightness helps a bit), but it looks more pronounced in person.

It is almost always the case for me that if I look hard enough at a negative BinaxNow or QuickVue test, I can detect a faint line in the sample area, and my default decision process is "if I can't see it without looking "hard", then it's negative". Occasionally like with this one, though, the line is obviously detectable (though of course still faint) and then my decision process is "If I can't detect red pigment in the faint line, then it's negative". This one was really hard to tell and I thought there could be some red in there (though you don't see any in the iPhone camera so maybe I should be judging it by photo instead of looking at it directly :-P).

I've always strongly preferred BinaxNow and QuickVue because they are the only RATs available that come with long swabs, which lets you swab the back of your throat and nasopharynx unlike the short swabs, based on information I saw that that sampling strategy can significantly increase the sensitivity of the test.

I've always avoided buying long swabs separately and using them with other brands of RATs that didn't come with them because they haven't been scientifically validated to be compatible with the test and I can't be sure they work as well as the swabs that come with the test.

I'm really getting frustrated with the fact that I'm having such a hard time distinguishing between a faint positive and a negative on Binax/QuickVue, however, and it might be enough for me to take the risk using separate swabs with iHealth tests.

Just wanted to throw my experience out there and see if anyone else feels similarly or has any thoughts they would like to share?

Continue to be appreciative of this community. ❤️

https://preview.redd.it/z4k2nbvpemyg1.png?width=463&format=png&auto=webp&s=2540c5da2f6b6661785ada3a3fd365b138230f8e

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u/sparklegemstone — 13 days ago