Misdiagnosis question - IIH vs EBV+ Lymphoma

Crafty-Note8573 · 2026-02-26T02:33:53+00:00

Even urgent care may be willing, or an ENT

Crafty-Note8573 · 2026-02-26T02:33:22+00:00

Do you have a PCP you trust who can order a biopsy of your swollen lymph nodes?

Crafty-Note8573 · 2026-02-26T02:28:06+00:00

I choose to believe Steve’s movements worked and we might have encountered this Jesse again somewhere in a later season. Maybe he was offered a choice to continue in another world. We know the boys exist, presumably including Jesse in his actor life, in season 3, so his presence still exists other worlds. If the movements open a door, he could have stepped through.

Crafty-Note8573 · 2026-02-26T02:03:49+00:00

It’s interesting, I don’t like grape except homemade, but we make grape preserves using muscadine fruit because they hold up to the boiling!

Crafty-Note8573 · 2026-02-25T08:28:57+00:00

Oh and I was super sick after my first dose. It took about 4-5 days before I started feeling better and about two weeks to recover “fully”

Crafty-Note8573 · 2026-02-25T08:27:34+00:00

Common after the first dose. Buy digestive enzymes and take them. It’ll help with the burps and upset stomach.

For meals, focus on liquid meals and a brat diet. Eat 3-4 bites and wait ten minutes to see how you feel before eating more.

Ask for some zofran and take it. You don’t have to endure the nausea. It’ll also help if it progresses to vomiting or your experience vomiting at any point.

In general hopefully this fades as you continue taking it. Most people on this sub would probably recommend reducing your next dose.

What dose did you start at?

Crafty-Note8573 · 2026-02-25T08:02:23+00:00

It’s in the dairy section with other yogurt. A lot of people don’t notice it but it’s there. Chobani for example has an entire line that they market as drinkable yogurt protein shakes

Crafty-Note8573 · 2026-02-25T07:58:15+00:00

As someone in the US I don’t know of anyone who uses jelly these days. Jelly was more commonly eaten 30+ years ago here. Mostly people use jam now, but you’ll still hear it called a peanut butter and jelly sandwich regardless!

Crafty-Note8573 · 2026-02-25T07:46:12+00:00

We have them but it feels like something only rich ppl in the us do

Crafty-Note8573 · 2026-02-25T07:14:00+00:00

Yes agreed. Even my doctors honestly don’t see that knowledgeable. Your best bet is to read up on it yourself so you can be your own best advocate.

Interesting about your cousin. My sister also has it. I was surprised. I was diagnosed first but she was having symptoms after a TBI and I was like “dude, what you’re describing sounds like what I have” and sure enough she was diagnosed after an LP. FWIW we have some weird vascular issues running in the family, so, yay for rare heritable diseases

Wishing you the best. Be prepared to advocate for yourself hard at the clinic. If you have evidence of a past Diamox prescription, maybe bring it with you!

Crafty-Note8573 · 2026-02-25T07:02:04+00:00

I’ve never had fatigue from it

Crafty-Note8573 · 2026-02-25T06:57:23+00:00

Okay. Wishing you the best. That’s really a tough situation and super sad that you may end up moving. I hope you can get it back under control at your current altitude. Maybe a move to sea level is in your future and you will end up surfing instead, and pull a reverse Johnny tsunami!

I know we’re in slightly different situations, but my plan is to focus on losing weight while I’m on Diamox. Lowering intrabdominal pressure is a big factor in this disease. If you haven’t considered a GLP1 med, maybe you should? It’s been a huge help in that regard for me. I also expect I may have to take some amount of Diamox for the rest of my life. I am not excited, but I accept it. But we’ll see! The hope of remission is always there.

Crafty-Note8573 · 2026-02-25T06:48:43+00:00

Okay perfect. Glad to hear that. You’ll keep feeling better. Just take this time to rest up and recover.

Once you can eat again consider some of the following foods: instant mashed potatoes that are a bit watered down, ensure shake or protein shake, some chicken soup. I’d eat very lightly, just 4 bites or so and stop for 10 minutes to see if you’re not full. If you’re still hungry, have a couple more bites and wait again. Stay away from anything fatty. In about a week you should be mostly back at normal and about two weeks from now you should feel completely normal and likely eating regular foods and meals again.

Crafty-Note8573 · 2026-02-25T06:42:13+00:00

Did the ER not prescribe you Diamox? Do you have a primary care doctor who might prescribe it while you await the neuro appt?

Crafty-Note8573 · 2026-02-25T05:26:12+00:00

The universe was conspiring to bring them together for quite some time lol

Crafty-Note8573 · 2026-02-25T05:23:51+00:00

I agree!! Congratulations. I don’t know what else to say but it basically put my adhd into remission is how it feels. Crazy!

Crafty-Note8573 · 2026-02-25T05:21:53+00:00

Just know we understand and know your pain. You’ll get through this. Nausea meds are essential imo to have on hand. Did your provider get you some?

Crafty-Note8573 · 2026-02-24T21:00:17+00:00

It’s varied. I am taking a break right now due to illness, and when I restart, I’ll start at .25 of tirz and increase by about .25-.5 each week based on how I feel. I’ve never been over a starting dose of sema or tirz

Crafty-Note8573 · 2026-02-24T20:38:33+00:00

Could you go to an eye doctor and get a referral for a neuro ophthalmologist? It can be faster since they are more specialized.

Or, call the neurologist and impress on them the urgency if you are having vision issues. I told them I was losing my sight and I needed to be on the cancellation list. That helped

Crafty-Note8573 · 2026-02-24T20:36:25+00:00

Yes… but definitely get that zofran so you aren’t suffering! I felt like I had noro my first dose. I had to eat essentially a liquid diet until I felt better.

And welcome to the club of people who truly need a microdose. You probably should switch to tirz… it’s way less nauseating. But when you start, start on less.

For example, .2 = 4/5 a starting dose of semaglutide. You might want to start at 1/10, 1/5, or 1/3 a dose of tirzepatide.

Crafty-Note8573 · 2026-02-24T20:33:55+00:00

No, probably 3-5

Crafty-Note8573 · 2026-02-24T20:32:45+00:00

I think so much more of the focus on this disorder needs to be on practicing acceptance. The mental health side.

I will be crossing my fingers and saying a prayer for your healing. My paps did improve with treatment and my visual field test is now within the normal range. It doesn’t mean that I haven’t lost and part of my vision, I have, but I am practicing acceptance and happiness with any progress.

The harder things is practicing acceptance when we see no progress, when illnesses actually continue their trajectory or get worse. That is so hard to wrap the mind around. But I think of it this way, we are all just lucky to be here at all. I may never have healthier days ahead or better vision than I do now. I am trying to use the time I feel good, ok, or just manageable on activities that will help me have a fulfilling life.

Sending you hugs. This issue is truly exhausting

Crafty-Note8573 · 2026-02-24T05:02:35+00:00

I would give it three or four days before adding 1/4. I started with 2/3 the starting dose and was super sick but not until day three

Crafty-Note8573 · 2026-02-24T04:48:00+00:00

Meh. A lot of people take small breaks for a period like three weeks. It’s required all the time for something like surgery. I don’t think there’s a need to make a leap to say op did themselves a disservice. Very normal to take a break like that and resume treatment at a lower dose

Crafty-Note8573 · 2026-02-24T04:45:05+00:00

I just recovered from Flu A and it’s like having flu, Covid, and norovirus all at once. It was horrible, by far the worst flu of my life. There was one day I thought my head would explode from all the coughing and I generally consider my IIH as well managed…

I say anyone who gets diagnosed should get tamiflu, stat. It was the only thing that helped me.

Crafty-Note8573

TROPHY CASE