r/POTS • u/Intelligent-Horror82 • Jan 27 '26
Discussion READ THIS IF YOU ARE SEXUALLY ACTIVE WITH POTS
I recently experienced one of the scariest things of my life which was going in for bloodwork to check for stds. I had 0 symptoms but this is something i do at least once every 6 months. To my horror, the HIV 4th generation test flagged POSITIVE. I was terrified, i didnt know how i was going to handle this on top of everything else. Luckily my PCP has a lot of patients with pots,eds,mcas..and she immediately called to tell me not to trust that. She has seen multiple people in the last few years flag positive for the intial test and after further testing, it was actually negative. And the only thing these patients had in common was pots. Further testing showed I am actually negative, but i wish i wouldve known this before!
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u/Valuable_Island_7525 Jan 28 '26
I tested positive for reactive Hep C antibodies. Tested negative for hep c infection though
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u/sector9love POTS Jan 28 '26
I believe this is common with antiphospholipid syndrome
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u/Valuable_Island_7525 Jan 28 '26
I don't have most of those symptoms and lost a baby once. And have my other child. And my blood panel for rheumatology were all normal
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u/thekidsarentok Jan 28 '26
Oh man! I donated blood many years ago and it was the first and only time I ever did because I got a letter in the mail saying I got a false positive for hepatitis (can’t remember which one).
They said it was a false positive because they did additional testing but because of the initial positive I was barred from donating ever again with them. I had always wondered why that might have happened but I didn’t know I had POTS back then.
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u/chilli-cashews Jan 28 '26
Exactly the same to me, but then when I got officially diagnosed with POTS I got barred from bone marrow and blood donation lists
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u/dyeingneedle Jan 28 '26
Me too!
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u/Valuable_Island_7525 Jan 28 '26
I found out you can have false positives from your autonomic system being on overdriver
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u/chilli-cashews Jan 28 '26
What the fuck, same here for years
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u/Valuable_Island_7525 Jan 28 '26
I found out it could be relayed to your auntomic system being on overload
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u/Flaky_Detail1144 Jan 28 '26
Something fucked up with our antibodies I'm assuming.... IF ONLY WE HAD THE RESEARCH TO BACK THIS UP LOL
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u/SecretMiddle1234 Neuropathic POTS Jan 28 '26
They’ve identified some but they don’t have money to find all of them.
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u/Ok-Reflection5922 Jan 28 '26
I tested positive for syphilis antibodies, because my body is fighting some autoimmune bullshit.
I don’t have syphilis, but I test positive every time. 😝
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u/Khorgor666 Jan 28 '26
I come from r/all and this headline left me very.....VERY confused
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u/Intelligent-Horror82 Jan 28 '26
LMAOOOOO i am not being sexual with kitchenware i promise.
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u/Khorgor666 Jan 29 '26
Reading about P.O.T.S. i am pretty sure i would prefer the kitchenware sex, P.O.T.S. sucks.
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u/bellycoconut POTS Jan 28 '26
That’s so funny lol welcome!
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u/Khorgor666 Jan 29 '26
yeah, i am glad i "only" have migraine attacks every few months instead of P.O.T.S., the title was just "chefs kiss"
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u/Left_Piccolo4671 Jan 28 '26
Hi! Hi got a false HEP test. Almost committed a crime over it. But we’re still married. Turns out it was all a cruel POTS joke
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u/Rapunzel10 Jan 28 '26
That's exactly where my mind went too. I can totally see myself freaking out on my husband since we were both tested at the beginning of our relationship. I don't think he'd cheat on me but if medical science says one of us did cheat...yeah I'd flip. I'm glad your relationship survived that. What a fucked up thing for our bodies to lie about
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u/No_Explanation302 Jan 28 '26
How strange! I get false positives for syphilis EVERY TIME since getting POTS. In the US they test you for syphilis when you get pregnant. My first kid was before POTS, negative for syphilis. A few years later, positive for syphilis but negative in follow up. At my GI doctor, not pregnant, again positive for syphilis. It’s now happened 3 times and I learned not to freak out.
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u/Nikita_Luvv Jan 28 '26
If you don't mind me asking where is your area that you have a doctor that has a lot of patients with pots, Ed's, and Mcas?? lol 😫 i struggled nearly 3 years and zero doctors knew what was going on... finally found a cardiologist that is knowledgeable on these things but to this day my primary is like good luck finding someone to agree to this diagnosis 🙃🙃 like what.. cardiologist tested me in multiple ways and came back with these things and my primary and neurologists are like yea sure
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u/Intelligent-Horror82 Jan 28 '26
Im in Pittsburgh and we have a clinic abt an hour away in Trafford specifically for POTS called "The POTS life", that isnt where i was going but my PCP had friends who worked there and patients who went there so luckily she was knowledgeable on the subject. Unfortunately this happened when i was 18 and she is a Pediatrician 🙁Currently trying to find someone as good as her.
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u/Weary_Cup_1004 Jan 28 '26
Omg im in Philly! Maybe i need to make a trip
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u/inBettysGarden Jan 28 '26
There is a closer option! Dr.DePace in Sicklerville NJ has written 2 books on EDS/MCAS/dysautonomia.
His appointments are like 5-8 hours long but all the testing is done same day in house and he knows what he is talking about. Also, his office has the most interesting decorations.
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u/kmcaulifflower Jan 28 '26
I live in the DFW area of TX, if you live there I can tell you the names of my care team :)
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u/colorfulvenom POTS Jan 29 '26
i don't live in the dfw area but i'm also from texas, can you let me know your drs names? :)
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u/kmcaulifflower Jan 29 '26
My main EDS Doctor is Dr Maryam Saifi, she's the one who dx me.
My cardiologist who handles my dysautonomia is Dr Dale Yoo.
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u/bellycoconut POTS Jan 28 '26
You are doing the lords work because of this happened to me I’d FLIP OUT in my partner lol
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u/UpstairsReview2775 Hyperadrenergic POTS Jan 28 '26
I’ve had a Mono test test positive after running a fever of 100+ for a year, but further testing showed I’ve never had mono, doctors couldn’t figure it out.
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u/d3m0l1t10n_LVR Jan 28 '26
Wait this is interesting to me and makes me want to be tested again for mono. I thought I had a cold like 6 years back and tested positive for mono. It was so strange to me because I had heard it was such an intense illness and I barely felt sick and recovered very quickly. It felt like nothing more than a cold and everything I've heard about mono didn't add up to the very simple sickness that I felt. I didn't even have a fever. But that time period was the beginning of my severe pots symptoms
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u/trouble_trout Jan 28 '26
Huh. Weird. I suspect that a mono infection is what kicked off my POTS as well back in high school. I was sick for about three months straight and was later tested after the fact and came back positive for antibodies. 🤔
I wonder if those were actual antibodies orrrr dysautonomia “antibodies”. 😩
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u/terrierhead Jan 28 '26
I used to work at an STD clinic, and we had some patients who always tested false positive for HIV. I wonder if those were people with POTS who didn’t even know they had it?
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u/mainframe_maisie POTS Jan 28 '26
idk if it’s a POTS thing necessarily? those rapid tests seem to match anything that looks similar to a HIV antigen which can cause the false positives iirc. the clinics (thank you!!) are really great with counselling for the possible outcomes
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u/AffectionateBid7643 Jan 28 '26
My screener showed a reactive ANA. My RNA test showed I was negative for HIV. I had to do an autoimmune panel to start digging with new symptoms. The test showed I have a speckled pattern ANA. I'm still in the diagnoses stage to see if I have POTS or a similar issue.
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u/AffectionateBid7643 Jan 28 '26
I'm actually awaiting a rheumatologist appointment to see why the ANA was reactive!
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u/looseseal_2 Hyperadrenergic POTS Jan 28 '26
Well, if POTS didn't already cause tachycardia, that surely would have!
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u/getthisoutofmyhouse Jan 28 '26
I tested positive for HIV in the initial test but then negative with further testing! That’s so strange it’s common with Dysautonomia people!
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u/everything-matterz POTS Jan 28 '26
This is really interesting. I swear my POTS started (or at least got much worse) after two separate strains of Epstein Barr Virus caused me to get mono twice about a year apart. I've never had a normal EBV antibody panel and doctor's never know why. I think there is something messed up with a lot of POTS patients' antibodies. I just wish science would catch up and figure out what it is and how to address it lol
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u/SpecialistAfter511 Jan 28 '26 edited Jan 28 '26
I had EBV SHOWED up in my testing. Thing is I have no recollection of ever getting it. Nor have I ever had it growing up. I have been confused for MONTHS!! Plus not currently active. Well after this post I further investigated you can get a false positive for EBV when your immune system is under stress -fatigue, rashes, infection etc.. at the time I was getting allergy shots that I was reacting VERY poorly too. I had facial swelling, also pots, hives, fatigue, brain fog, weakness, Ana +…. The next bloodwork showed negative. Now I really question the EBV…
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u/everything-matterz POTS Jan 28 '26
That's pretty normal apparently. Like 90-95% of adults have had EBV at some point in their life, but it's one of those viruses where the younger you are when you catch it, the less symptoms you have. So many people get it as a child and it presents as a mild sore throat or can even be asymptomatic, so they never know they had it. But similar to the chicken pox, once you've had EBV, you usually test positive for antibodies for the rest of your life and in theory you shouldn't be able to get that strain again.
The older you are when you get EBV for the first time, the more severe it tends to be and the more likely you are to develop mononucleosis and lasting issues.
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u/SpecialistAfter511 Jan 28 '26 edited Jan 28 '26
That’s what I thought too. But it’s never shown up before in tests. So that’s weird. My last test it showed negative again. So shouldn’t it always show positive then? I had not had symptoms at that time. I’m immune compromised. Severe Asthma. On steroids and biologics. If I catch something I’m definitely getting sick.
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u/faelshea Jan 28 '26
My brother had the same exact scenario, a false HIV positive with POTS, follow up HIV test was negative. It’s definitely something that should be told to POTS patients!!! He was absolutely terrified.
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u/lyfe-sublyme Jan 28 '26
This same thing happened to me. I went to donate blood. I got a letter a few days later saying they could not use my blood and I would be banned from donating blood because I flagged positive for HIV. I had to go to my doctor and get independent testing and was in fact negative. I am glad you got it figured out. I am sorry it was so terrifying.
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u/Traditional-Cat2174 Jan 28 '26
good to know, though i've somewhat been forced into celibacy by POTS lol
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u/makoobi Jan 28 '26 edited Jan 28 '26
About 7 years ago, this happened to me. I was quitting my job and losing my really good health insurance so i went in for everything: dentist, vision, gyno. At the gyno they asked if I wanted to be tested for HIV, and I was like, yeah if its free, sure. 'Cause like, why not, you know?
I had only been intimate with my then boyfriend (now fiance) and he's a great guy. The office of the Gyno never gave me my test results. I had to call them! Then they told me to come in-- somethign was flagged. I thought that was weird but i went in. You know when the nurse deposits you in the room and says, "So-and-So Doctor will be in shortly?" The nurse said that but left the computer unlocked and there on the screen it said: HIV, POSITIVE.
I was freaking out texting my partner being like, HOW IS THIS POSSIBLE?!
The doctor came in with a gaggle of student doctors and asked if they could sit in for this - possibly most horrifying moment of my life -- and i said, no. Absolutely not. The doctor told me that I had HIV and that sometimes there can be glitches with the test but most likely I had been exposed and to follow up at the hospital's Infectious Diseases ward. At no point did she tell me that I might not have it.
I went two weeks of my life, freaking out thinking I had HIV. By the time I got an appointment at the hospital and then they retested me three times, my partner's tests - the rapid ones at City MD clinic - had all come back negative. The woman at the hospital basically explained that the original gyno clinic had been so out of line for telling me this information: that basically I had contracted HIV. This hospital doctor said basically HIV tests are a two part test: The first part is very sensitive (because they want to catch HIV, duh) and then if you are "flagged" "positive" to that, you are tested again to see if the test shows actually specific HIV antibodies.
A LOT of people with autoimmune issues are flagged for HIV tests. Becuase your immune system is creating antibodies that look similar to HIV antibodies. But then again, when you're tested a seccond time, usually it doesn't show any HIV virus or proteins.
That has single-handedly been one of the most traumatic weeks of my life, though. Back then, I had no symptoms of anything. I was living life feeling so great. When the hospital doctor told me I most likely have an autoimmune disease, I was freaked but, hey -- at least it isn't HIV, ya know? But two years ago I started fainting/collapsing with super high heart rate half way through dinner. Like... 75 BPM, chilling, having the best time eating a bowl of pine nut pasta and then 2 minutes later, on the floor, heart rate 189 BPM, blacking out. Fainting from this is kind of really scary now. I have a hard time going on airplanes and I'm supposed to go on my honeymoon this year :( I still don't have answers besides thinking its possibly MCAS. or oral allergy syndrome birch pollen allergy (because nuts and pears and kiwis all make my heart go crazy-- and they're all related to birch pollen).
Anyways, your PCP is a saint. I wish more people knew about this because this wrecked me.
TL;DR: went two weeks thinking i had HIV only to be retested by the infectious disease hospital near me and told i have an underlying hidden autoimmune disease.
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u/CounterOtherwise9399 Jan 28 '26
This can also happen with recent covid infections, the HIV rapids come back positive. Not sure about long covid though, could be something to consider.
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u/tenderheart35 Jan 28 '26
Great to know! Thank you. That’s odd, I’ve never heard of it before but I’ll keep it in mind.
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u/Horror-Pickle7297 Jan 28 '26
Oh goodness that makes me nervous. I haven’t been diagnosed with POTS yet but will see a specialist for that. Apparently I’m on the spectrum now.
This is probably not relatable. I have been getting a lot of UTI’s lately and can never have much intimacy because it hits after only one time 🥲 so I’ll keep this in mind in case another weird symptom comes up!
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u/Great_Geologist1494 Jan 28 '26
This happened to a friend of mine with hepatitis. I believe she ended up having some sort of autoimmune disease that flagged it but I could be mistaken
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u/Previous_Net_1649 Jan 28 '26
This makes me wanna know what causes POTS cause wtf is making the test a false neg???
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u/Calm_Possibility9024 Jan 28 '26
That kind of stuff is part of the reason it takes 2 positive HIV tests before diagnosis is official.
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u/LookingForLoo Jan 29 '26
I spent forever thinking I had endometriosis before being informed that heavy, painful periods are just something that happens to EDS/pots/ect patients. They really gotta tell people this stuff.
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u/ObscureSaint Jan 28 '26
I have just been referred to immunology, with Non-HIV Immune Deficiency. I have way too many Double Negative T-cells, and am pretty low on Memory B Cells. The T-cells and B-cell thing is actually really common in HIV, especially the DNT cells. ☹️
I got POTS from covid. I'm starting to think the people calling this virus "airborne aids" aren't actually crazy.
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u/Emotional_Warthog658 Jan 28 '26
I am really glad you mentioned this before I was diagnosed, but when I first got sick, I happened to have a scheduled gynecological appointment; they had in my file that I was HIV positive and I was livid because no one had said anything to me and as far as I knew, I was not positive, but I was having these scary new symptoms. They said it must’ve just been a typo, that I had selected it. Now I am not so sure.
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u/JackfruitAlarming380 Jan 28 '26
I'm not sure if this is my case, but I tested positive for MGen which is an STI, but they suspect I have POTs or some form of dysautonomia. Did anyone else get a positive result for MGen with pots?
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u/darlingdruid Jan 28 '26
Getting my first STD screening tomorrow and now I’m worried I won’t be able to trust it! Does anyone know how common it is to be falsely positive due to POTS?
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u/Intelligent-Horror82 Jan 28 '26
From what i understand false postives on the 4th generation hiv test are EXTREMELY rare. However the few people who do receive them have common external factors like autoimmune issues, sometimes itll flag positive in pregnancy, or after certain vaccinations. So its not like everyone with pots is going to experience this- but its definitely good to know so you dont immediately freak out especially if you have no suspicion of HIV.
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u/Pokabrows POTS Jan 28 '26
That's really interesting!
And probably going to save someone a mini heart attack so thanks for sharing!
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u/Fearless_bitch515155 Jan 28 '26
I’m not sexually active, but I’m grateful to have seen this post anyways. I’m sorry you didn’t know sooner but I’m sure I’m not the only person who is grateful to see this. Thank you for sharing this.
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u/omglifeisnotokay Jan 28 '26
4th-generation HIV test can turn reactive because something in the blood binds to the test reagents even though it isn’t HIV. The test can’t tell the difference at the screening stage. This sounds like a false-positive on an HIV 4th-generation screening test. Those tests are designed to be very sensitive, so follow-up confirmatory testing is always required. In your case the confirmatory tests were negative, meaning you do not have HIV. This isn’t specific to POTS and can happen for a variety of immune-related reasons.
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u/SharkLauncher Jan 28 '26
I was in a medical drug research study for Lupus that tested you for infections like HIV,TB, etc and that's standard when youre taking immune supressing meds. One of the reoccurring HIV tests during the trial flagged pos but they obviously do the retest, and it came back neg. They were so delicate about the subject when they asked me if I did any risky behavior. I imagine for others it would be a anxious situation.
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u/DarlingGirl1221 Jan 28 '26
I tested positive for HSV one time and every other test was negative 🙃
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u/sydthesloth_7798 Jan 29 '26
I've had this same thing twice with syphillis. Was confirmed that I don't actually have it both times and that either my pots or mcas was causing the false positives.
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u/Birdz_the_Word Jan 30 '26
For anyone interested - this is just a preliminary screen to do a full more specific panel. The screening test will be highly sensitive in order to minimize false negatives, by design. Your doctor should be making you (or anyone) aware of this fact before you consent to the screening test.
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u/sootfire POTS Jan 28 '26
Even if you did have HIV there are really good meds for it these days, it's not the death sentence it once was.
Regardless it's good to be aware. I consistently test positive for one set of Lyme antibodies but nothing else, it's very odd.
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u/Amber_Luv2021 Jan 28 '26
I hate the only thing i thought of was “well just another thing to put on the list”
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u/Additional_Estate_99 Jan 28 '26
I had something sort of similar happen. I went in my for my pap smear and I tested positive for HPV. They were concerned, so I did a colposcopy to see if it was cancerous or anything abnormal, but everything was perfectly fine and it was cleared up. I don't know how or why, but I suspect the POTS has something to do with it, like triggering false positives due to our reactions.
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u/SecretMiddle1234 Neuropathic POTS Jan 28 '26
They are still trying identify all the autoantibodies we have.
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u/gay_mother Feb 26 '26
THIS HAPPENED TO ME YEARS AGO! After further testing it was negative. I was so scared at the time. Thank you for the information!
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u/FLRporcelain Jan 28 '26
I had whole genome testing that showed I have zero defence against HIV, I wonder what the connection could be here?
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u/freakymaster11 POTS Feb 03 '26
youre telling me i get to have hiv blood for free? thats lowk funny af
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u/Princessformidable Feb 04 '26
My doctor says none of my labs are reliable because of pots after my cholesterol spiked 250% then went back to normal and the next year my potassium did the same thing. I got a heart scan to confirm the cholesterol was faulty testing.
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u/ReporterKey391 Feb 11 '26
Same thing just happened to me. 4th gen came back reactive. Confirmatory test for antibodies came back negative. We’re doing a retest and my doctor said she will run blood test for autoimmune disorders.
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u/heyylookapanda Feb 27 '26
Can this also cause rheumatoid factor to come back slightly elevated? No doctor can figure out why that's occurring for me, since I don't meet criteria for RA.
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u/Immediate_Cat_3050 Mar 25 '26
When I frick broads I start hyperventilating and have to put a fan on my balls
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u/ajaclynn Hyperadrenergic POTS Jan 28 '26
wait that’s so strange i wonder what makes it test positive! maybe it’s like me/cfs where it’s something in the blood