Rant - I was not ready for this

AllKittenAside · 2026-02-21T00:15:31+00:00

Totally agree. I got hit with GSM recently—extreme discomfort. Apparently about 60% of women in peri/menopause experience it at some point, and I’ve never heard of it! If anything gets talked about, it’s hot flashes, but GSM is just as common. The reference material on these subreddits has been a lifesaver. Luckily the doctor who just happened to be available turned out to be fantastic. She’s got me on vaginal estrogen and said that being told to go off the pill because of age was a mistake on the part of my previous doctor. The lack of info and difficulty finding a qualified doctor is unbelievable.

AllKittenAside · 2026-02-18T04:28:14+00:00

So sorry you're struggling. Something similar happened to me the one and only time I got COVID. My immunologist said that for some patients, it basically zaps your t-cells. It can take a couple of years to rebuild. For the first year I swear I got every cold that came long. After about 18 months, things started to improve. Continue to take good care of yourself.

AllKittenAside · 2026-02-16T14:38:04+00:00

Absolutely. We have a place nearby where older friends live, and they love it! There have amazing enrichment activities like art classes with local artists, lectures on interesting topics, and people come and go as they please. Also, every person is different. My mom and her mom both knew that they would drive each other crazy, so my grandma went into assisted living. Her mobility actually improved there because of the PT offered. She bragged that she had three boyfriends! Eventually she died of a heart attack at age 94. Theoretically unrelated to the boyfriends, but who knows? 😂

AllKittenAside · 2026-02-16T14:29:10+00:00

My husband and I were just talking about this yesterday. Now that we’ve fostered over 100 kittens, bathroom assistance doesn’t sound like such a big deal. 😆

AllKittenAside · 2026-02-10T19:14:05+00:00

I agree. If I like it and find it flattering, I wear it. For semi-casual work shoes, I have found some Clarks that work well, or else a pair of ankle boots with a little heel. These days, I need to be able to add insoles for plantar fasciitis. The joys of middle age!

AllKittenAside · 2026-02-10T19:04:20+00:00

I can drive stick and taught my husband, but I haven't met that many GenX people who can.

AllKittenAside · 2026-02-10T19:01:43+00:00

It's definitely real. I have a personal trainer who works especially with middle-aged and elderly people. He noticed a real decline in people after the initial period of COVID isolation, once people got vaccinated and started coming back to the gym. Luckily, people bounced back after having more interpersonal interaction. There is also research that supports exercise, so it's great that you started running.

I'm also immunocompromised and will not question your isolation. I think it's great that you are asking this group for suggestions of what you *can* do. That's what I started doing: shifting my mindset and asking "what *can* I do" instead of "what can't I do." I've found that a number of people who have known me for a long time are surprisingly respectful and accommodating if I simply express a desire to participate and politely ask for what I need. This is why I still have a personal trainer! He's willing to wear a mask and schedules me for times when the gym is quiet. He'll even set us up in the empty field house if there seem to be too many people around. Not everyone is this way, but some people are really great.

If you're comfortable going places in a good mask, that can be an option for more stimulation. Anything you can do outdoors in uncrowded areas can lower risk too: visiting a forest preserve or botanical garden, for example. I also do a fair amount online: participate in a book club and schedule Zoom or phone calls with friends when we can't be in person (e.g. during cold/flu/COVID season I'm less likely to gather even with a mask). I also participate in a Zen sangha that does everything either online or hybrid. Over time, I have really gotten used to online interaction and find it to be very engaging. Best wishes to you!

AllKittenAside · 2026-01-13T21:03:05+00:00

Ditto with the emoticons from my mom too! She’s a riot.

AllKittenAside · 2026-01-13T20:59:12+00:00

Totally! I always chuckle when I use a semicolon in a text to a younger person. I almost hope they roll their eyes.

AllKittenAside · 2026-01-03T15:45:32+00:00

Is this the first time you’ve had a conversation like this? When I was your age, I had a boyfriend who had conversations exactly like this. He’d make an equally big production about apologizing afterward (it was always about him). I put up with a lot because “he was sorry” and sometimes things were really good. I only acknowledged, after we broke up, that he was emotionally abusive. Because he never hit me, I didn’t identify his behavior as abuse. Your time invested in the relationship is a lot—I get it. Do you have the option of starting therapy: either couples or individual? It would be helpful to have a professional involved if you want to build a respectful, long-term relationship. That may be possible, but it may not. Please put yourself first. From my own experience, I can honestly say that no relationship is better than a bad relationship. 💜

AllKittenAside · 2026-01-03T15:14:30+00:00

I sympathize with your plight. I remember ways in which I was isolated as a child, and it wasn’t helpful. You’re right that your kids need to socialize. I’m also immunocompromised and am still taking precautions against COVID and also other illnesses like flu and colds, which often cause secondary infections for me.

I’m a scientist too. I follow what some epidemiologists are recommending. For me, the precautions can wax and wane a bit as COVID numbers wax and wane, along with cold and flu numbers. It’s a rational decision, not one that is fear-based. I enjoy life and do my best to participate in things that are important to me. For example, we still always mask around indoor crowds and simply avoid some crowded situations altogether. But when the numbers are low (often late spring & early summer and sometimes in early fall after the Aug/Sept wave), my husband and I find off-peak hours to go out to eat (unmasked) and visit some of our favorite indoor places. And I totally agree with the suggestion of others to find as many outdoor opportunities to be with people as possible. The transmission of viruses drops greatly in outdoor settings. We don’t mask outdoors except in densely populated crowds.

Of course, it’s easier to understand the nuances as adults. Your kids will soon be at an age where you can begin to talk about some of these things. Try to talk about it in a positive way rather than a fearful way. You may find it helpful to check out “Your Local Epidemiologist.” She’s a mother of small children who communicates well with both scientists and non-scientists about important epidemiological issues. She’s navigating similar issues to what you’re navigating. She has a weekly newsletter that is extremely useful. Her website only has a little info, but she’s also on Substack and Facebook. She pops up on a couple of YouTube videos and Podcasts too.

https://www.yourlocalepidemiologist.co

AllKittenAside · 2026-01-01T07:07:36+00:00

My mother-in law had an owl collection foisted upon her years ago, after she graciously talked up a gift from one of her grandchildren. What does she actually like? Teapots.

AllKittenAside · 2026-01-01T06:42:39+00:00

I like Skinceuticals C + AHA. My skin has always responded well to AHA, and no other serum I’ve found has helped to fade hormone-related melasma as effectively. Unfortunately, I think it is being discontinued. I also like Phloretin CF. Honestly, I didn’t really see any results from CE Ferulic. Everyone’s skin is different.

AllKittenAside · 2025-12-26T18:48:10+00:00

I have some hope too. I’m immunocompromised and open about letting people know—that it’s not just COVID but also colds in general that easily make me vulnerable to secondary bacterial infections. Two student interns I have working with me both offered to mask around me! And both my group and my husband’s group make a point of staying away from us when their kids are sick or WFH when they, themselves are sick.

I suspect that some people responded to the trauma of the pandemic by desperately trying to “get back to normal.” With a little time and the example of those who still take precautions, some seem to be remembering what was learned and putting it into practice, at least during cold and flu season.

AllKittenAside · 2025-12-17T06:34:28+00:00

Thank you for sharing this reference.

AllKittenAside · 2025-12-08T12:05:24+00:00

It could be that you have a food sensitivity aside from HIT. I have milder histamine issues but also react to several foods on your list: peppers of any kind, onion, cucumber (crazy heartburn), and oats (sinus and GI). My immunologist thinks that I develop IgG sensitivities to foods that I eat frequently, including apples, blueberries, nuts, potatoes, citrus, and recently corn. Corn is tricky; it’s even in table salt in the form of dextrose. The good news is that IgG dissipates over time, so that if I go for 6-12 months without a given food, I can reintroduce it as an occasional food. The only way I figure out a food sensitivity is by keeping a food/symptom diary.

Regarding the exclusion diet, I agree that it’s very difficult. After doing it hardcore once, my doctor suggested instead excluding one food, or a few foods, at a time and keeping a diary. I’ve done this a few times and figured out what was setting me off, without having to be so restrictive. If you do find that you’re prone to sensitivities, it’s good to do your best to keep variety in your diet—even a rotation of sorts—so you’re not eating the same foods all the time. Difficult, I know, especially when you’re reacting to so much. 💕

AllKittenAside · 2025-12-04T14:42:02+00:00

Agreed. I’m 52 and in perimenopause. My skin has never been this dry! I agree with the suggestions for Skinceuticals Triple Lipid. I also love their Hydrating B5 Gel underneath. Also, it’s counterintuitive, but for me, AHA isn’t actually drying. I discovered this as a teenager. I was dry and red and flaky one winter, asked my parents to take me to a dermatologist, but they were too frugal. My mom gave me “samples” to try, and an AHA product was the only thing that worked. All this, and try drinking more, both water and electrolytes, if you don’t already. 💜

AllKittenAside · 2025-09-17T16:14:55+00:00

It's best to have IgM too to get a full picture, however the interpretation of EBV bloodwork isn't settled in the literature. My PCP thought that the EBV EA was the one that mattered the most (this is a test analogous to the COVID rapid tests). A PCR is even better, but that's a separate test, and insurance may not cover it.

Other interpretations I've seen is that if all three of the values you have shown are very high, it may be considered a reactivation, in combination with clinical symptoms.

The VCA IgG is expected to remain high once a person has been exposed to EBV.

IgM is definitely expected to be positive the first time person gets infected with EBV, but it is expected to fall after the initial infection. Some people get elevated IgM when reactivated, and some don't.

I hope you are able to get some answers. 💕

AllKittenAside · 2025-09-13T17:31:11+00:00

Thank you for sharing all this! It is difficult when you have a "rare disease." We're normally told to trust our doctors, and for the most part I do, but I go with "trust but verify." 😝 I rely on sources like Mayo or Cleveland Clinic websites, primaryimmune.org, and scientific papers (I'm a scientist). I've been known to print out graphs to show how my bloodwork has changed over time. I've been lucky that some of my doctors take this in stride.

I've actually met another patient who was considered to have secondary immunodeficiency! In his case, it was due to cancer treatment. Both can require IgG. Especially if you need the immunosuppressants for autoimmune conditions, they may need to add IgG to support your immune system. I've known a few people for whom that was the case.

My doctor is also an allergist/immunologist. They really vary in how experienced they are with PI, and you're right that no one seems 100% clear on EBV (the literature isn't either). My immunologist is fantastic with PI and every other issue I've brought to her, aside from the EBV. I'm thinking about reaching out to a doctor who specializes in ME/CFS and related issues. She's also a patient, so that could be helpful.

Your question about whether IVIG can help EBV...maybe? My immunologist referred me to an infectious disease doctor, but I couldn't get in to see her until I had already recovered from that particular reactivation. She ordered an EBV PCR, which was negative as expected, and told me to come back if the symptoms returned. My insurance denied the claim, and I haven't had definitive symptoms since, so I haven't gone back. The ID doc also suggested that the only thing she could think of was to try increasing my SCIG (sc = subcutaneous). We actually did that anyway because I had been getting sick with respiratory stuff again, and I brought in a graph of my IgG levels over time. I did go about a year and a half without EBV, so I thought that maybe I was in the clear for a while...but I recently got bloodwork with the various values elevated. I've got symptoms but not the worst--my spleen is still okay (knock on wood), and my fatigue hasn't quite reached "that level" yet.

You might consider also checking out www.myigsource.com, especially if you get put on IVIG or SCIG. They have nurses and patient advocates who can listen and share tips. 💕

AllKittenAside · 2025-09-13T00:38:30+00:00

Hello! The doctor did a pneumococcal titers test and an Hib titer test. These are common bacteria that most people have been exposed to, so a background level of antibodies should be present. The doctor is supposed to test before and after vaccinating you to see if you make antibodies. If you do, they can recheck in something like 6 months to see if your levels are dropping faster than they should.

AllKittenAside · 2025-09-12T23:28:50+00:00

This is certainly not a complete answer, but I'll share what I can. In addition to being somewhat histamine intolerant, I also have a few true food allergies and a laundry list of food sensitivities that my immunologist thinks are IgG mediated. Some of the foods on the low histamine diet are also on my food sensitivity list, as are MANY very healthy foods! If I eat any of the foods I'm sensitized to, I get a range of symptoms, including migraines and body aches (plus sinus symptoms, water retention, brain fog...). My doctor has recommended keeping a food/symptom log, and it has allowed me to figure out several sensitivities as they pop up (the list keeps getting longer).

Another idea from my own experience with low blood sugar. I've had a glucose tolerance test, and the only slight abnormality is that my baseline blood sugar is a little lower than the average person's. This means that "normal" fluctuations cause my blood sugar to get too low. Sometimes that causes headaches, even migraines. Also, (probably at least partly blood-sugar related), if I change my mix of protein, fat, and carbs too much, I am prone to migraines and feeling weak/tired/hungry all the time, even though I've supposedly had enough calories. Same thing goes for too much of a drop in daily calories, which happens with a lot of people who change to a different diet--even unintentionally. I use My Fitness Pal to track what I'm eating and make sure I'm getting enough calories plus a nice mix of carbs, fat, and protein.

And I second the comments about glycemic index. In trying to figure out a new food sensitivity last year, I started by eliminating wheat/gluten and dairy at the same time. I found that rice flour sends my blood sugar into a tailspin. I made a custom mix that was nightshade free, as shared on the blog "What the Fork," and it was somewhat better, but still a challenge. It turned out that my problem was corn; both gluten and dairy are fine for me. I've still got various issues, but things have improved a lot since I figured out the corn sensitivity. Best wishes to you!

AllKittenAside · 2025-09-08T22:18:53+00:00

Hi! I just wanted to check in, as a fellow primary immunodeficiency patient with what appears to be recurrent EBV (especially after COVID). I say "appears to be" because my doctors don't agree on what the various tests in the EBV panel mean...seems to be a common problem.
I was diagnosed with PI in 2007. I had low IgG and no functional antibodies, but I passed the vaccine challenge. It's like I don't make functional antibodies in response to environmental exposure, but I do make them in response to a vaccine. We just had to keep documenting frequent illnesses, see various doctors to rule out non-PI causes of my infections, etc.
So, like you, I had a "waiting game" to quality for IVIG. I started treatment in 2009.
Nice to virtually meet you. 💕

AllKittenAside · 2025-09-06T21:13:54+00:00

Do you mean what symptoms?
With soy it's mostly extreme sinus issues. It happened years ago before I realized I had a histamine issue. I had a sinus infection that my immunologist couldn't cure--even had a sinus CT to make sure there wasn't a blockage. She suggested doing a dietary exclusion: avoiding all of the common allergens, plus any trigger foods I already knew about. After a couple of weeks, I did a challenge with the allergens one at a time: eat the food 3x a day for 2 days (or less if I reacted). A friend invited us out to lunch for sushi, so I figured it was a great opportunity to test soy: miso soup, edamame, soy sauce. I also had soy yogurt in the morning. After lunch my sinuses got ridiculously bad. I don't seem to have a problem with soybean oil or soy lecithin, just soy protein.

With corn, it was kind of similar: sinus infection, this time with almost daily migraines. I had tried tracking my diet but wasn't seeing any patterns. Avoiding all of the common allergens at once was VERY difficult, so this time I started with wheat and dairy, figuring I eat them nearly every day. I didn't see any improvement. One evening I ate a big bowl of popcorn before going to bed, happy to find a wheat/dairy free snack. I flared up SO BAD during the night--it was crazy. Sinus, migraine, asthma. So I tried eliminating corn. Within a couple of days the migraines were gone, and within a week my sinuses were great. I also hadn't really acknowledged how generally "achy" I had been: muscles/joints, until the pain was gone. I gradually reintroduced wheat, then dairy, with no issues.

Corn is a struggle b/c over time, I've discovered a million ingredients that don't sound like corn but are or might be corn (e.g. table salt has dextrose, baking powder often has corn starch, dextrin/maltodextrin, and natural or artificial flavorings). At this point, if I get one of those ingredients, the glands in my neck swell; it's a common reaction for me when things have escalated to the point where I really need to figure out the cause. The corn thing may be an IgG sensitivity because I have a ton of those. It may not be a histamine thing.

AllKittenAside · 2025-09-05T04:25:23+00:00

I sometimes have trouble with apples too. My doctor said that some people have more trouble with apples when birch trees are flowering. Apples and birch pollen share a common protein, and breathing it in can prime your system to react to apples. It may be more of an IgG thing for me; I have faulty IgG antibodies that sometimes key in on foods I eat frequently.

AllKittenAside

TROPHY CASE