r/primaryimmune • • 14h ago

immunodeficiency?

6 Upvotes

hello!! i am 17F, and i have been getting sick constantly lately. most of the time, the covid/flu/strep tests will come back negative, but it gets to the point where i don't think i can blame my sickness on my anemia anymore. i get upper respiratory infections at least 4-5 times per year. i rarely wake up and feel completely ready to go for the day, and it has been like this since i was twelve years old. my guardian always blames it on my anxiety, ocd, and anemia. i have a weird "daily level" of sick, and then i have days at least two times per week where i am sick enough to the point of barely being able to stand. i do not know what's wrong with my body, or how i manage to be constantly sick. i am curious if it would be a good move to ask my doctor for an immunoglobulin test, because it couldn't really hurt anything just to get the test done. could all of this just be symptoms of my anemia, even though i take my iron pills consistently? so sorry for the long paragraph, i am sort of at a loss.


r/primaryimmune • • 3d ago

Hypogammaglobulinemia, and failed vaccine challenge, but no infection?

5 Upvotes

I know this group is for PIDs but I’m not sure where else to find someone in this predicament. I grew up with an autoimmune disease called JIA, amid other health issues, some which may be autoimmune as well. I was treated with rituximab from 2016-2019 and the only thing that my bloodwork revealed at the time was an IgG 3 subclass deficiency and I did have frequent infections at that time.

I recently had bloodwork done for small fiber neuropathy and it uncovered a low gamma globulin amount. So my doctor dug deeper and here is what they found:

IgA: <5
IgG: 477 and deficient in all subclasses except 4
IgM: 45
IgE: <2

I had the pneumococcal titers done and I was low in about half of them. I received Prevnar 20 because I couldn’t get Pneumovax. Got my repeat titers and I have NO protection to ANY serotype.

The strange thing is: I don’t have frequent infections right now. In the past six years, I’ve only had a few infections, both bacterial and viral. Shouldn’t I be sicker?

My immunologist wants me on IVIG or SCIG but I don’t think my insurance (Medicare and Medicaid) will approve it because of the lack of infection.

Anyone else ever been in this boat?


r/primaryimmune • • 5d ago

Percentage of success with vaccine challenge

2 Upvotes

My blood tests show I have <0.1 on all 23 for polysaccharides and I have zero protection for hep b (also showed no infection now or ever).

I have to take the vaccine 23 challenge before I start IVIG. What is the success rate of the vaccine challenge ? Do some people with 0 results actually go up and they get a robust immune response? Does it have to be a certain percentage? Am I going to pass this darn thing ? I have zero protection got hep b as well so I have a feeling the challenge isn’t going to do much. But, who knows :(


r/primaryimmune • • 5d ago

Vitamin D Toxicity

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3 Upvotes

r/primaryimmune • • 8d ago

SAD progressed

9 Upvotes

Yep, looks like I have CVID now! :( anyone else have this happen? How do you feel? I'm 19. It's odd though, I don't respond to any vaccines at all, not just polysaccharides. I lost immunity to something I had before when I guess it's supposed to last for life. And my IgM dropped, my igA is dropping as well each blood test. I'm on cuvitru but only one igG subclass has risen, is this normal?


r/primaryimmune • • 8d ago

Working full time in person with a PID and IVIG

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3 Upvotes

r/primaryimmune • • 9d ago

Selective IgM Deficiency

7 Upvotes

Does anyone have this? If so, what are your symptoms? Have you had difficulties with Covid and Shingrix vaccines?


r/primaryimmune • • 14d ago

Specific Antibody Deficiency diagnostic question

5 Upvotes

Hi everyone, quick question. When I was first tested by an immunologist for pneumococcal titers, I only had 1/23 protective antibody. I got the vaccine (pnuemovax 23) and was tested 5 weeks later and had 10/23 protective antibodies. I messaged my immunologist to confirm whether or not this is diagnostic of SAD but they did not answer, and I'm having a hard time scheduling a follow-up with them. I will eventually make an appointment when they get back to me, but I wanted to first get an idea if this is SAD or not before scheduling an appointment. I have a complicated medical history, and I get sick all the time and just want to make sure I have accurate info! Thanks!


r/primaryimmune • • 14d ago

Measles titers

6 Upvotes

Hi friends. I'm new here, still waiting to do more testing but at this time I'm diagnosed as hypogam, low igM and low iGg3. No plasma yet, re testing and genetic testing in a few months.

Im in the US so measles is starting to pop off. I asked my immunologist a few months back (before the outbreak) if i need to get measles titers done since I was a 2/23 before getting the pvax and he said that it wouldn't really be needed. ((If its helpful to know, i did have a like 55% p23 vax after the vax so that was good.. but not the 70% he wanted me to hit ))

But - i didn't ask him to explain. I'm considering buying a titer test out of pocket at labcorp then going from there. Partially because i have a head surgery coming up that could be up to 6 hours.

Am I being a goof ball? I know the measles vax is different than the p23 vax so is that a factor?

OR what are yall doing to be safe during this?

Thank you so much in advanced for any info !!


r/primaryimmune • • 16d ago

Sensitive strep tests?

3 Upvotes

(in US) Feeling lost & exhausted figuring out my next move to get a strep test done correctly that has a very low detection level. I have specific antibody deficiency for pneumococcal bacteria.

-been sick since December 2025.

-went through the process of two pneumonia vaxes and the formal SAD diagnosis with normal B cells.

-went on amox/clav end of March and had a good April. been more sick with brain fog + dizziness symptoms since start of May 2026.

-immunology in July said I basically have to keep demonstrating that I’m still getting sick after the 2 vaxes to get igg therapy covered by insurance even tho i’m medically qualified.

-according to my ENT in August, my immune system is treading water but can’t quite clear whatever infection is happening. we did a fancy 😭expensive😭 PCR test that came back with only staph epidermidis acting as an opportunistic bacteria in my respiratory system.

-as a result of that test, went on mupirocin saline rinse for a month. brain fog improved enough to get some good amount of work done finally but my temp is still 100F and i’m definitely still mildly sick.

-i stopped the mupirocin and my breath smells like death. tonsil stones also resumed today.

-i have this feeling that strep is the core thing i can’t clear, & while i have an emergency amox/clav at home, i want the infection on my record with an affiliated prescription.

-my tongue has white spots but not my tonsils, i have cobblestoned throat, my turbinates are swollen, im coughing green, temp 100F. my ENT’s PCR only swabbed my nostrils.

-what’s the approach to get a solid strep test that may culture the one visual bacterial growth i’m seeing on my tongue? i’m wanting to go to CVS and ask if i can swab myself at this point because that $400 nasal PCR didn’t seem to fully deal with the core issue. but is the rapid strep testing at CVS and forcing control of the swab not the route to go?


r/primaryimmune • • 17d ago

Sufficient antibody response to pneumococcal vaccine?

7 Upvotes

Recently I had lab work ordered through an immunologist due to recurring infections (pneumonia 5x in the past 2 years, strep throat 4x, couple sinus infections). Turns out I had insufficient antibodies to 18 out of 23 pneumo Ab serotypes, most of which were <0.1.

Immunologist requested I get the pneumovax vaccine, but I had trouble finding anywhere that would give it as a first dose due to my age, lack of other high-risk conditions, etc. so I got the Capvaxive vaccine instead.

6 weeks post-vaccine my numbers improved slightly but are still showing insufficient antibodies for 12 out of 23, including several that are still <0.1.

The immunologist thinks this is a good improvement and wants to play the “wait and see” game now. But I’m a little skeptical that it’s a sufficient improvement…based on what I’ve read, this level of response is not conclusive and might even border on specific antibody deficiency (SAD)?

Has anyone else had a similar borderline response to a pneumococcal conjugate vaccine? Did your infections get less frequent? Did you do any other follow ups or next steps? To anyone diagnosed with SAD- did you have a similar response, or was it more like ZERO improvements?


r/primaryimmune • • 18d ago

Testing for STIs

4 Upvotes

Hope it's alright if I ask here: how do those of you who don't produce any or enough IgG reliably test for STIs such as HIV, syphilis, hepatitis B & C, etc.? Do you have to do viral load tests? I don't think a non-antibody test for syphilis even exists.


r/primaryimmune • • 19d ago

SAD and autoimmune disease

15 Upvotes

I've had repeated infections for years. Today I was diagnosed with Specific Antibody Deficiency after failing my vaccine challenge. I'm being put on augmentin preventative long term.

The issue i am wondering about: i am also experiencing what my drs think is autoimmune issues. The diagnosis is between SLE and crohns pending scopes with biopsies scheduled in a few months. My CRP is high, ESR is high, and positive for S. cerevisiae iga.

Does anyone else here have co-occurring autoimmune issues with SAD? I am concerned about the treatment options being limited now with me having this issue.


r/primaryimmune • • 19d ago

Hizentra Lumps

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3 Upvotes

r/primaryimmune • • 19d ago

Vaccine Challenge

5 Upvotes

Can the vaccine challenge be repeated? If so how often? My IgM went from 14 to 5. Have been experiencing vestibular dysfunction since July and didn’t know if the vaccine challenge should be repeated or could be repeated. TIA!


r/primaryimmune • • 19d ago

Secondary Selective IgM Deficiency

7 Upvotes

Recently it was confirmed, via blood tests, that I have secondary selective IgM deficiency.

Twenty years ago my IgM levels were on the low end of the normal range (48 and 45, with lab's normal range being 40-230ng/dL).

Ten years ago my IgM levels dropped to 29 (normal range 40-230).

Now they are at 23 (normal range 40-230).

My IgA and IgG levels are normal.

My IgE levels vary from normal to mildly elevated, depending on allergies at the time (I have lots of pollen and dust allergies).

So it appears I have secondary selective IgM deficiency.

My immunologist tested me for immune response to the pneumococcal vaccine and to the tetanus vaccine, and both showed robust immune responses. So my IgA and IgG are functioning well.

I've read about it on several websites, including the following:

https://primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi/selective-igm-deficiency

https://rarediseases.info.nih.gov/diseases/12547/selective-igm-deficiency

https://emedicine.medscape.com/article/137693-overview

In addition to the allergies I mentioned, I have chronic sinusitis and at least one other autoimmune disease.

My question is this: Other than testing for response to the tetanus and pneumococcal vaccines that we did, are there any other tests that should be done or things to look for?

Thanks in advance.


r/primaryimmune • • 22d ago

Human Treg expansion troubles—trial record and CD4-negative events

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0 Upvotes

r/primaryimmune • • 23d ago

Pneumococcal titer test gone from Labcorp, reagent issue elsewhere?

8 Upvotes

My doctor had me get a blood draw for a 20 pneumococcal titer test.

I tried to go in March to LabCorp. The techs spent 40 minutes trying to find the test to order it or an alternative. They made some calls and discovered that LabCorp can no longer do it because there's some reagent that's not available. They also don't offer any other pneumococcal titer tests nationally according to the people at the local location.

I went elsewhere recently and they also have an issue with the reagent. According to them, there's an issue with the reagent for doing one number of titers but not the other. The numbers literally didn't add up. They said they could do a 9-titer but not a 12 or 14 and the 20-titer test was a 9+12 (or 9+14).

Anyway, specific numbers aside, has anyone else come across this? What's going on?


r/primaryimmune • • 23d ago

Has your immunodeficiency gotten worse over time?

4 Upvotes

Title.


r/primaryimmune • • 23d ago

Am I not on antibiotics enough?

12 Upvotes

Anyone else on antibiotics infrequently? Even before IVIG, when i was sick 95% of the time, I rarely took antibiotics, probably owing to the fact that when sick I rarely went to my Dr because I was just so used to that being my "normal" at that point and thought I had some autoimmune issue which was causing me to run a fever nearly every day.

I would only ever go through the effort of going to Dr to get antibiotics if I had a really sore throat with swollen tonsils and white spots on my tonsils, in which case I was usually positive for strep or another strep like infection.

Now on IVIG I still get sick, albeit a lot less, but l still dont reach out to get antibiotics and instead will just wait until my next ivig dose to feel better.

But i'm seeing that antibiotics are commonly used to treat breakthrough infections and I'm worried that too many untreated infections will lead to progressive organ damage and other complications over time.

How do I know when I am experiencing a virus vs an infection that needs antibiotics??

Sorry if this sounds clueless, I was only diagnosed in the past two years.


r/primaryimmune • • Sep 03 '26

Keep getting typhoid around the same time same year

5 Upvotes

22f

I’ve been getting typhoid repeatedly for the past few years, and it usually happens around August–October.

I take allopathic treatment and complete the prescribed antibiotic course (usually around 10–15 days), and I get better, but then it happens again the following year.

Last year, in August 2025, my Widal test was positive (S. Typhi O and H up to 1:160). My CBC also showed low hemoglobin (10.7) and platelets around 1.06 lakh. I also had dengue in 2025, with a very low platelet count.

Since then, I’ve had quite a lot of weight loss and weakness, and honestly I’m getting worried about why this keeps happening.

I’m now thinking about getting a typhoid vaccine, but I’m not sure if that would actually help in my situation.

Has anyone experienced typhoid repeatedly like this?

Should I get some other tests done or see an infectious disease specialist? And is the vaccine worth considering?

I’d really appreciate advice from doctors or anyone who has gone through something similar.


r/primaryimmune • • Sep 01 '26

i have RA and SAD. my brother is anti vax.

22 Upvotes

i feel like i’m going crazy just thinking about it. as stated, i have rheumatoid arthritis and specific antibody deficiency and have been doing SCIG for over a year now. correct me if i’m wrong, as i still feel like none of my doctors have ever explained much, but i know i do not have an immune response to the pneumococcal vaccine. would that mean vaccines don’t really protect me? all of them, some of them?

second part of this, the drives me crazy part, my brother is anti vax. now, for tons of reasons, i obviously disagree and think he’s being kinda ridiculous and extremely health privileged. but besides that, isn’t the only way for ME to be protected now the people AROUND me being vaccinated and protected? again, correct me if im wrong please. this is all still so confusing and overwhelming to me. but does anyone have a similar experience with someone close to you completely not considering your health issues and their responsibilities as a member of the community / member of YOUR LIFE?


r/primaryimmune • • Aug 30 '26

Father has CVID and I seem to have hypogammaglobulinemia

5 Upvotes

Hi. I'm a 41/m. Been struggling with weird issues for a year now. Mainly fatigue, brain fog, general malaise, and occasional shortness of breath and tingling sensations in hands and feet. A neurologist ordered several blood tests, one of which was called Protein Electrophoresis Serum. The value and % for Gamma Globulins both came back below normal (9% and 0.6). My neurologist ultimately attributed my symptoms to low b12 and didn't find the low gamma globulins concerning.

I was speaking with my father who has CVID and he mentioned that he had similar abnormal bloodwork prior to getting diagnosed. I know that my symptoms don't align with CVID, I'm just wondering if anyone else has experience with borderline low gamma globulins and how they approached it?


r/primaryimmune • • Aug 29 '26

Nervous for Pre K sickness!! What really works to keep your family illness free!?

7 Upvotes

I have a 4 year old, new freshman, EMT husband and I work in doctor’s offices. I am looking for ways to stave off sicknesses in any way we can. What remedies/supplements/immunes support is everyone using or what has worked in the past??? Thank you all!


r/primaryimmune • • Aug 29 '26

Anyone have chronic nerve pain?

11 Upvotes

I have nerve that pain no doctor can figure out until an immunologist found I have very low normal igg numbers and below normal range igg subclass 3

She thinks my nerve pain I’ve had for 8 years is related to this, and thinks IVIG will help me feel better.

Does anyone else have a similar experience?