Antivirals for chronic EBV?
▲ 2 r/EBV

Antivirals for chronic EBV?

I had an appointment to go over my labs today with my immunologist and this popped up. My provider thinks it's a bit of a red herring in terms of my symptoms (POTS, chronic fatigue, MCAS, hEDS, and gastroparesis that all popped up after an adenovirus and norovirus infection last year). Regardless, she figured it would be worth trialing an antiviral for a month to see if it makes a difference. With a little bit of digging...that doesn't seem to be done very often? Or at the very least there doesn't seem to be much you can do about chronic EBV. Do my labs even line up with it? She said the numbers were so low it doesn't seem super likely, but she won't entirely rule it out either.

Every other autoimmune issue I was tested for was entirely negative. Immune system looks fine. CBC and CMP are fine. It's a lot of "your labs look great!" to feel like such shit.

Editing to say I had mono like ten years ago and it rocked me pretty good, but eventually went away. I have however had a lot of ups and downs with my health before and after.

u/EmoPeahen — 7 days ago
▲ 42 r/SWORDS

Sell or release to a buy nothing group?

My husband has a cobbled together collection of swords/weapons that he's had since a teenager. We're in the process of clearing out a lot of excess belongings, and the swords fell into the "bye bye" pile.

I know literally nothing about swords and he knows little more. Are any of these worth anything or should we just post them up on a buy nothing facebook group and be happy with some freed up wall space? Thanks!

u/EmoPeahen — 1 month ago

Flonase and nose bleeds

Basically the title. I've taken flonase on and off for years along with claritin or allegra. It works well, but no matter what I do within a few days my nose starts to crack and bleed. I've tried saline sprays, sensimist, brand name, generics, moisturizing gels, everything. It helps my allergies a ton but the cracked and painful nostrils are annoying as heck. Is there a similar alternative or something else I can try to prevent this? I also live in Colorado which sucks every molecule of hydration out of your body just by existing, if that makes a difference.

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u/EmoPeahen — 2 months ago

Zit in throat near tonsil?

Had a bit of a scratchy throat the past few hours so I took a look and have what looks like a zit next to my tonsil? No fever, no other symptoms really. Just the bump and the painful throat. My tonsil kind of always looks inflamed like that so not entirely abnormal in that regard. I did a saltwater gargle but trying to determine how concerned I should be. I emphatically try to avoid antibiotics whenver possible.

u/EmoPeahen — 2 months ago
▲ 1 r/GERD

Bravo vs 24 hr impedance probe

I finally have to get the dreaded motility studies done and (blessedly) my GI said I could go straight to an endoflip instead of the usual manometry. I had an attempted NJ tube insertion via IR back in January and I told them under no uncertain terms would I be getting that same size tube shoved up my nose again. They agreed. Amazing.

Downside, they cannot place the 24 hour probe while I'm under but offered the Bravo instead. The caveat being I had a history of endoclips and similar objects being retained in my GI tract much longer than they should, and I'm also (mildly) allergic to nickel. I've also heard it's remarkably uncomfortable.

I've had a 12 fr NJ which sucked ass but I dealt with for a while, so would the pH probe hopefully be tolerable? I'm more worried about the insertion than dealing with it for a day. My feeding tube was placed via endoscope under sedation so I didn't have to deal with the worst of it.

Long question short-is the Bravo actually that uncomfortable, or do people make it out to be worse than it is? I'm still leaning towards the 24 hour probe but wanted other people's experiences.

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u/EmoPeahen — 2 months ago
▲ 50 r/POTS

30-40 vials of blood...

I had a specialist visit about a month ago and have been actively avoiding going in to get my bloodwork done because they need 30-40 vials. I get woozy from needles on a good day (thanks, medical PTSD), only weigh around 90 pounds, and the lab said they could split it into two days but...I dunno that seems like a hell of a lot of blood. I asked if they could condense it anymore and unfortunately that's just the number of tubes they need. They also can't split it up into any more orders so it has to either be all at once or two visits max.

Any pro-tips? Should I push back a bit and see if I can get it spread out more? Am I just being a nervous nelly and that's really not that much? I also get fluids once a week so my veins are...not good, to put it lightly.

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u/EmoPeahen — 2 months ago
▲ 79 r/FIVcats

IBD vs lymphoma (scope or no scope)

I dealt with my my kitty Thuthan's IBD (likely turned lymphoma) for years until she eventually passed around two years ago.

Shortly after, I trapped and fell in love with Moorris, a feral in our neighborhood. He's a brawny boy at 15 pounds with no history of diarrhea or constipation, scarfs and barfs sometimes, and aside from being FIV+ is fairly healthy.

Until today. I woke up to find that he had vomited, was clearly uncomfortable, and refused to eat. This cat is normally a black hole, so to the vet we went. His ultrasound showed the dreaded intestinal thickening and one particular spot was exceptionally bright with inflammation and a little free fluid in that area. They were worried it could indicate a potential spot for perforation and are keeping him overnight.

I'm absolutely beside myself. We never scoped Thuthan or got biopsies because she was so chronically ill that it felt cruel (IBD, chronic UTI's, kidney disease, arthritis, you name it). Moo is younger and until now hasn't really had any problems. Money is, thankfully, not an issue, so it's more of a "is it worth putting him under and through another procedure" thing.

Any thoughts or anecdotes? Particularly from anyone with a FIV+ kitty. I think the free fluid/potential perforation is what's scaring me the most.

u/EmoPeahen — 2 months ago

Slynd side effects?

I was prescribed Slynd about six months ago prior to getting surgery to remove endometriosis....and I've been too terrified to take it. I have medical PTSD and severe emetophobia which makes starting new medications a nightmare. Unfortunately, after surgery my OBGYN said I basically NEED to be on some sort of hormones to prevent the endo from spreading and getting worse and here we are.

I've tried multiple combo oral BC, NuvaRing, and Nexplanon. All except nexplanon made me unendingly nauseous, and I bled for three months straight on Nexplanon.

I would appreciate any and all Slynd opinions, especially when you first start. I can deal with acne, I'd love to gain weight (I have gastroparesis and dysautonomia), I'd even deal with my hair falling out, but I just cannot tolerate more nausea.

Thank you in advance!

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u/EmoPeahen — 2 months ago

First period post lap

I was warned that this first period would be hell, but holy sweet mother of god. I'm taking tylenol, ibuprofen, zofran, and finally tried weed, but nothing is touching it. I'm on day two and in agony. I had my surgery three weeks ago today and hoped that maybe it would be better since I had my endo excised but NOPE.

Any other pro tips besides the medications mentioned above and my heating pad? Being day two I have to be close to the end of the road for the bad cramps but any tips are deeply appreciated 😭. These are unreal.

I was also waffling on whether or not to start birth control but this officially pushed me over the edge. Slynd here I come!

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u/EmoPeahen — 3 months ago

Bloated meals

I recieved my first CookUnity box today and was a bit disappointed to see that about half of my meals had bloated packaging. Not only that, when I tested the temperature most were over 50 degrees. I've worked in food service and am a bit of stickler for food safety.

Am I being too anal retentive or is it reasonable to not eat these? Many are also fish/shrimp based which makes me extra leery.

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u/EmoPeahen — 3 months ago

Week 20: Jams and Jellies - Rainbow Jello

I learned two things while making this dessert....one, I'm impatient and didn't let many of the layers cool long enough and two...I don't like jello as much as I thought I did. At least it's pretty!

u/EmoPeahen — 3 months ago

First large piece finished!

I decided about a month ahead of time that I wanted to make a large piece for my mom for Mother's Day. This ended up being around 12x24 inches (ish) and I took every moment of that month to finish it. There are of course a million and one things I would have done differently, but overall I'm pretty proud of it considering it's my first large design.

u/EmoPeahen — 3 months ago

Bladder spasms post lap?

I had my lap 8 days ago. They took out a few spots of endo and ruptured a cyst, but there was no comment on any bladder involvement. It seemed to be primarily attached to my pelvic sidewalls and an adhesion on one of my ovaries.

The incisions themselves are tender but very tolerable. As of yesterday though I started getting some pretty intense groin/bladder aches and spasms? I'm sure my entire pelvic floor is just a tight mess, as it was already tense prior to surgery. It's a deeper ache lower in my abdomen from where the incisions are.

I talked to my surgeon and she said it was pretty common, likely just tight muscles, and prescribed a muscle relaxer.

As someone who is terrified of any complications, is this somewhat normal and did it fade over time for you? Things are so screwy in that area of my body right now and I think I really expected to bounce back quicker than this. It's hard to tell right from left and what problem is causing what in the midst of healing.

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u/EmoPeahen — 3 months ago

4 days on Ativan?

This may seem like a stupid question, but I've taken around 0.25 - 0.5 mg of Ativan for the past four days due to a surgery I had. Day one I was knocked out with Versed and I took 0.5 mg of Ativan when I got home. The next day I took 0.25 in the am and pm, next day just in the am, and today in the am. I'm hoping that's the last of it and just to grit my teeth and deal with the surgical anxiety...but am I at any risk here of dependency? I usually take one, maybe two 0.5 mg pills a year, they are truly rescue meds. However these last few days with my surgery I've just been off my damn rocker and can't calm down...I don't want to make it worse by dealing with benzo issues. I'm not taking any narcotic pain relief either, so I'm really just trying to make it through this first week without losing my mind lmao

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u/EmoPeahen — 3 months ago

Mentally struggling 3 days post lap

I had my lap 3 days ago and aside from the physical discomfort, I am *really* struggling mentally. I unfortuntely have a history of medical PTSD and this procedure has kicked everything into overdrive. I need Ativan to sit still and "function" (by that I mean rest), I'm weepy and tearful, I'm terrified of infection or complications, I'm most definitely not eating enough, and I'm overall suffering. My brain is telling me that I made a huge mistake, I'll never recover or be so traumatized that I won't have a quality of life again.

Anyone want to make me feel stupid yet validated and tell me they had similar symptoms and got better lol. This is so absurd.

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u/EmoPeahen — 3 months ago

Ativan for three days straight?

Basically as the title says. I was given Versed for anesthesia on Thursday and have continued to take 0.25 mg of Ativan every 12 hours ish since then. I had a reaction to the Haldol I was given post op and it has made me VERY agitated, and the Ativan is one of the only things keeping me in bed.

I'm terrified of getting hooked or going through withdrawals though. Would three days at this low of a dose be a risk? I honestly hate the way they make me feel but the feeling without them is even worse. I'm just trying to stay calm instead to lay in bed while I heal.

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u/EmoPeahen — 3 months ago

Insane anxiety post lap

I had my lap done on the 14th, so I'm two days in. I was given haldol post-op which gave me extreme akathisia and I have not been able to relax well since. Lots of pacing, lots of up and down. I've kept Ativan in me every 12 hours or so but I am struggling. I'm also a huge emetophobe and all surgical jostling hasn't been great for the tummy.

It feels like I'm stuck this way forever even though I know I'm not, rationally. Has anyone else gone through this post surgery? I do have diagnosed medical PTSD, so that's definitely not helping. Just looking for some hopeful words or stories.

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u/EmoPeahen — 3 months ago

They found it after a a second lap!

Very long story short, I had a lap done ten years ago. It wasn’t a specialist but he was open to looking anyway. They didn’t find anything.

Yesterday I had surgery with an endo specialist and by god IT WAS THERE. I KNEW IT.

Recovery is kind of sucking and I’m grumpy about it but man it feels good to get validated for once.

Side note: has anyone dealt with extreme anxiety and restlessness post surgery? I’ve been pacing like a mofo because my entire body feels like it has ants under it. It has been so difficult to sit and rest. It’s like restless legs but restless body.

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u/EmoPeahen — 3 months ago

Week 19: Tricolor - Pepper Jelly

It's looking more and more likely that this will actually be a flop. I used yellow, green, and red bell peppers as well as jalapenos. Unfortunately it doesn't seem to be setting up, so it's more like pepper syrup. Apparently it can take up to two weeks to set fully so only time will tell. I was hoping to use it next week for jam/jelly buuuuut I may have to switch gears.

u/EmoPeahen — 3 months ago

Mirena vs Slynd for endo

I have my lap scheduled for the 14th and my surgeon offered to insert an IUD while I was under. On one hand, that would be a lot more pleasant than the previous IUD insertion attempt I had over ten years ago. TLDR; three people tried, I passed out three times, they never got it in.

However I was also given the option to try Slynd, which I've heard decent things about as well, and I could more easily stop if needed. I get pretty bad nausea with all other forms of oral birth control. Nexplanon made me bleed for 3 months. NuvaRing, again, nausea.

The thought of the IUD causing yet again more nausea, not being able to get it out myself, and the potential for worsening cramps kind of freaks me out. Anyone have experiences on either one? Thanks!

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u/EmoPeahen — 3 months ago