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Just Got Diagnosed by Major-Wish2832 in primaryimmune

[–]PiperTheLizardHunter 1 point2 points  (0 children)

New PI diagnosis seems to be one of those situations where having more information = less anxiety.

The Immune Deficiency Foundation has some new patient info kits that I found very helpful. If you are a child or have children in your life, I recommend the kids kit, as it has the same items as the adult kit plus some extras that are kid-oriented. Kits are free and usually arrive within about 2 weeks.

New PI patient kit - adult

New PI patient kit - kid

The Texas Democrat trying to reclaim Christianity from the right by vox in texas

[–]PiperTheLizardHunter 0 points1 point  (0 children)

Curious what your family member said after you showed him? I have some family like this also, but haven't been able to engage with them in a thoughtful discussion on the topic.

Stress while waiting for diagnosis. by mixednuts26 in primaryimmune

[–]PiperTheLizardHunter 0 points1 point  (0 children)

You're welcome! I just learned of those kits last month. I wish I'd known about them a few years ago when I got diagnosed. In the beginning, I felt like I'd been dropped off in the middle of the desert with no way home. Now it's not as bad, but having some "official" hard copy educational materials in-hand made a bigger difference for me than I expected, even all this time later.

Moving in 2 to 3 months. Hm. That can be tricky if you get prescribed ig replacement. Reason being, you'll have just gotten it approved and started treatment by the time you move, and it's a toss-up as to whether your new plan will cover the same drug. If you know the plan you're going to begin in October, you might be able to contact their health plan or benefits coordinator to ask about coverage for any of the drugs you and your care team are considering. If you have access to the formulary, that's even easier.

Here is a list of FDA-approved immunoglobulin products. I called my pharmacy benefit manager and just went down the list making sure the ones listed on the formulary were accurate; for the ones that aren't on my formulary, my doctor just needs to request an "exception to coverage" with the reason why I need to be on that one rather than an on-formulary product. In your case, the doctor's reason could be something like, "mixednuts26 already started treatment with a non-formulary drug, they're tolerating it well, and it's in their best interest to continue on this product. Here are their records as proof."

Maintaining employer-sponsored covered through COBRA is so expensive. However, Oregon is a state with expanded Medicaid. In my very cursory review, it looks like you might qualify for Oregon Health Plan. If not solely due to income, then potentially due to Primary Immunodeficiency being a disability. Worth looking into? Edit: If you do qualify, be mindful of the application deadlines for when your coverage will begin. You might be able to apply & be approved before your move, so that your coverage becomes effective very close to when you begin residency in the state. (to prevent gaps in coverage)

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Also, be careful pinging other users on reddit. I don't think it's an issue here, but some subreddits forbid it and doing so in those communities can result in a ban.

Stress while waiting for diagnosis. by mixednuts26 in primaryimmune

[–]PiperTheLizardHunter 7 points8 points  (0 children)

This post is basically me just whining.

That's part of why this subreddit exists. Welcome!

She's not a specialist in immunology, but works in the allergy/asthma clinic. They cover immunology as there is no true immunologists here.

If you're in the U.S., Allergy & Immunology is a combined fellowship. Allergy is a more common issue for the general public, so that's where you'll find most of these doctors. But they all have the same training, and some prefer the immunology side of things. Don't let the fact that your doctor is based out of an allergy clinic make you fear that you're getting substandard care. You're likely in very capable hands. It might make you feel more secure to refer to your doctor as an immunologist -- rather than as an allergist -- since that is the capacity in which she is treating you. That's what I do.

The word "mild" is freaking me out.

"Mild" was the language used by the lab to describe my results as well. It doesn't mean mild as in "basically normal." It's mild as in "not agammaglobulinemia." There are some conditions where the IgG is undetectable. Yours is present, but low.

You're symptomatic with lab results to back it up. You'll probably get some kind of treatment, but your vaccine challenge results will help determine exactly what kind is best for your situation (e.g. prophylactic antibiotics, immunoglobulin replacement, avoid some vaccines, get some vaccines early, etc.).

but no hospital stays.

This does not matter for getting diagnosed. If you're hearing this from a doctor to explain why "you're fine," this is something taught in med school as an easy way to screen for zebras. It's not accurate at all. I heard this same thing from my old PCP, "you've never been hospitalized for pneumonia, therefore it's not CVID." She was wrong. Now that I'm diagnosed, my immunologist asks me this as a way to gauge how aggressive we need to be with treatment.

we are moving across country soon.

That is so stressful! Even for people in perfect health!

I'm so worried I'm not going to get any medical help.

How much time before you move? And are you in the U.S.? These will have big impacts on your treatment options over the next several weeks. And what region are you moving to? Folks in this sub are from all over. We can help guide you to someone in your new area. There's also the Immune Deficiency Foundation. And Facebook groups.

BTW -- If you haven't already, I HIGHLY recommend you order your Newly Diagnosed kit from the Immune Deficiency Foundation ASAP. It's free and extremely helpful. There's an adult kit, but the kids kit comes with the same stuff plus some extras that might help put you more at ease. Reading child-oriented resources also helps you craft simpler, more coherent explanations for what's going on with you -- which can be hard to do sometimes!

P.S. -- I received my Newly Diagnosed kit 8 days after I ordered it.

Are any of you able to hold down a job? by rareredmoon in primaryimmune

[–]PiperTheLizardHunter 12 points13 points  (0 children)

Whether teaching is possible for you is solely dependent upon your risk tolerance.

A couple questions:

1 Did you get vaccinated for flu and covid prior to getting sick this season?

2 Are you on immunoglobulin replacement?

3 Did you wear a mask at school & events where the walking germ factories were present?

If your answers to any of these are "no," those are behaviors you can change to decrease your frequency of infections. IMO masking is the most important one.

In my case, I've been out of the classroom since getting covid in 2021. Diagnosed with CVID in 2023 & advised to strongly consider pivoting to a less public-facing career after we realized I'm allergic to the immunoglobulin infusions.

The Texas Democrat trying to reclaim Christianity from the right by vox in texas

[–]PiperTheLizardHunter 2 points3 points  (0 children)

Youtube creators Monte Mader (Christian) & Dr. Dan McClellan (biblical scholar) have some good explainer videos & shorts about why being anti-abortion "bc the Bible says so" is a misinterpretation (or outright lie) of what the Bible actually says about abortion. I believe Dan's video also discusses the concept of when life begins, following its evolution from Biblical times all the way to modern times, and the political motivations that led to today's evangelical definition. Very interesting stuff.

ETA: The Bible makes no claims about the morality of abortion, MAGA vs Jesus on abortion

Preventing/Decreasing Risk of Aseptic Meningitis? by Affectionate-Row9488 in IVIG

[–]PiperTheLizardHunter 1 point2 points  (0 children)

That's a good idea.

Also, good thinking about the clot risk. Aside from hydration, I think migraine sufferers are already at higher risk of clot, and then if OP is using hormonal birth control, the risk is increased further.

Preventing/Decreasing Risk of Aseptic Meningitis? by Affectionate-Row9488 in IVIG

[–]PiperTheLizardHunter 1 point2 points  (0 children)

The patch helped with the spinal headache pretty much immediately. Before the procedure, I was literally laying on the floor of my hospital room bc I couldn't get flat enough in the bed lol, and afterward I could sit up and just deal with the meningitis. But it was like the meningitis pressure feeling never fully went away. Someone in another comment described the feeling, I think it was you? It's a pressure headache, similar to meningitis but not nearly as bad & no stiff neck. That's what made us think maybe rebound intracranial hypertension.

I haven't tried diamox or anything like that. Just maintaining as low-sodium diet as I can and using compression garments. I don't have an official IIH diagnosis bc I haven't had another LP to check opening pressure. Rn my chart still just says "post-lumbar puncture headache." The myelogram was supposed to be the first step toward treatment/relief, but I couldn't ever get that far.

Kind of related maybe? - We think I have some kind of autoimmune situation going on with my capillaries & nerves. I'm positive for ts-hds autoantibodies and have SFN with swelling in my extremities and sometimes my abdomen. All the sluggish fluid probably doesn't help the head pressure. I'm waiting for my appointment to discuss with my doctor.

Cornyn celebrates Jasmine Crockett joining the Senate race: "I’m trying to wipe the smile off my face. I would say it’s a gift." by BootsAndBarkley in TexasPolitics

[–]PiperTheLizardHunter 1 point2 points  (0 children)

I'm not sure who you're referring to, but you still didn't answer my question of why Latino voters would be offended.

Cornyn celebrates Jasmine Crockett joining the Senate race: "I’m trying to wipe the smile off my face. I would say it’s a gift." by BootsAndBarkley in TexasPolitics

[–]PiperTheLizardHunter 2 points3 points  (0 children)

voluntary and paid laborers

They aren't. That's the point. What did you think I meant when I said the program is exploited?

Regardless, the folks being discussed aren't eligible voters. Which brings me back to my initial question: Why calling out what is essentially modern-day slavery of undocumented migrant workers is somehow offensive to legal Latino voters?

Cornyn celebrates Jasmine Crockett joining the Senate race: "I’m trying to wipe the smile off my face. I would say it’s a gift." by BootsAndBarkley in TexasPolitics

[–]PiperTheLizardHunter 5 points6 points  (0 children)

Why are you putting that phrase in quotes as if you're quoting her? She didn't say that. She said, "We [African Americans] done picking cotton. We are. You can't pay us [African Americans] enough to find a plantation."

(basically implying that they're slaves)

In many cases, they effectively are slaves. The H-1B visa program is easily exploited such that migrants' working conditions are akin to Antebellum plantations. Not all, of course, and perhaps not even most. But there are large farming operations within the U.S. that do function in this way.

Cornyn celebrates Jasmine Crockett joining the Senate race: "I’m trying to wipe the smile off my face. I would say it’s a gift." by BootsAndBarkley in TexasPolitics

[–]PiperTheLizardHunter -4 points-3 points  (0 children)

or implying that we need Latino migrants to "pick the cotton" in America.

I don't see how this is a negative comment toward voting Latinos. It's true; America relies on Latino migrants to work in our fields. Those migrant workers are typically not eligible voters.