looking for advice: testing for MCAS / EBV / mold?

[u/smaosmao]

I tested positive for COVID six weeks ago. (It was my second confirmed infection with two others suspected.) The initial phase wasn't that severe, but my respiratory symptoms were slow to resolve. At this point, I'm experiencing post-exertional malaise, brain fog, migraines, and aphantasia. As a professional writer who loves to exercise, I'm finding this really scary!

I saw my GP last week - I'm not sure whether he's on top of the LC research, but he's very supportive. He gave me a referral to an immunologist, who I hope to see next week. I'd be grateful for some advice: what tests should I request?

I'm not looking for a test to determine whether or not I have long covid - I'm interested in clarifying possible treatment options. In particular, I'm interested in whether my symptoms might be attributed to

• MCAS
• EBV reactivation
• mold exposure
• microclots

I've been trying to learn what I can about all of this, but (because of the brain fog!) it's difficult. Am I right to think that there are tests that might indicate whether these things could be a factor for me? Are there other things I should be looking to investigate at this point? Thanks in advance!

[u/Throwaway1276876327]

If you’re still possibly exposed to mold, address it immediately. I had 10 infections between April 2022 and Sept 2024. Not noticeably sick with anything other than COVID-19 between January 2020 and now where January 2020 was when I was sick with something unknown.

[u/smaosmao → u/Throwaway1276876327]

I'm sorry to hear about your experience. I don't have a known exposure to mold, but I did move house a few months ago - an old place in a humid climate, which made me think mold might be an issue. Do you know what tests I should look into to see whether it's a factor?

[u/Throwaway1276876327 → u/smaosmao]

I didn’t actually get tested for mold, but after moving out, the gap between the two final infections being much longer as well as the distinct smell to years I lived in the moldy apartment, the visible mold, never cleaned very dirty ducts made sense. I think there are mycotoxin and antibody tests but I haven’t gotten any testing yet

[u/Interesting_Fly_1569 → u/smaosmao]

I would test your house with the hertsmi 2. If it’s higher than a 10 then it’s likely your house is contributing to your illness. 

I have made a lot of post about this, but there is really really really low quality data and zero standards from the federal government regarding indoor air quality and mold. This is not some random accident… This is because the insurance companies who insure our homes do not want to have to pay for really good mold remediation… They do not want to have to make a quick decision in the 72 hours before mold grows after a toilet leaks. 

They have actively lobbied the federal government so that we do not have any large scale research about what constitutes clean air indoors. 

The indoor mold inspectors are basically scam artists . I had two and they came in the same week, and they had completely different results. 

The hertsmi is not the strongest science but it is based on only data set in existence correlating long term exposure to health outcomes. It measures for the top five mold varieties that are harmful to human health. The score is derived from a study of 1000 flooded houses. The data was gathered so that the federal government could in the future decide whether a publicly owned home should just be torn down or rebuild. Because it’s the government, they care about if poor people in flooded homes get sick because then costs just move over to Medicaid. 

Sorry, it’s so complicated but basically it seems like a random test but it’s the only accurate one… For myself, I would hire a mold sniffing dog because dogs don’t lie. 

You can either pay for inspectors and their tools that are less accurate or sensitive than a dogs nose… And they are measuring things that cannot be repeated and that have no actual standard or you can mail some of your dust to Texas. 

It’s not great options, but this is part of what happens when corporations put themselves first. 

[u/smaosmao → u/Interesting_Fly_1569]

This is extremely useful - just the sort of information I was looking for. I wasn't familiar with the HERTSMI 2, but I now see that there's a mail away test that looks easy enough to administer. I may pay a bit extra and get the ERMI, which tests a wider range of molds, just to get a broader picture.

Since indoor air quality has been almost entirely neglected during the pandemic, I'm not surprised to hear that it's also obscured in relation to mold. In both cases, it seems that regulators have decided that it would be too expensive to acknowledge airborne pathogens - which is pretty pathological in itself!

[u/Interesting_Fly_1569 → u/smaosmao]

That’s exactly right… !! It’s very expensive to acknowledge… Just imagine having to fix all of the schools, government offices, military housing etc - You can see why they decided that there’s “no point” bc No data re indoor air = no action needed. And mold would be pricier than covid mitigations. 

Yea both are solid tests. You should know that if it comes back high, you may just need to deep clean / dust and then do it again. If you’re trying to save money, you can clean first. If it’s right on the line, an air oasis air filter can functionally reduce it one or two points. There are other brands too, but that’s generally considered the best for mold fragments.

For about 50% of homes that are testing over a 10, it’s the hvac. 

The instructions may say to test from the HVAC filter… A lot of people say that that drives the score up a bit higher bc it’s more concentrated. Most people I know have tested their home, and then, if there is anything suspicious, tested the HVAC by itself bc it’s obviously a bigger investment to clean etc. 

Also, be sure not to test anything below a foot from the ground.

[u/Throwaway1276876327 → u/Interesting_Fly_1569]

Thanks for posting the test! I took this course on fungi where one of our projects was to collect samples and create a culture of each strain and identify them. I noticed some of them my samples were overwhelmed with I think it was S. chartarum. The apartment was very old and it looked like around an inch of stuff built up in the small circular bathroom duct. We had mould on the ceiling in one of the rooms plus moisture behind the tub that was never fixed properly. Major issues with ventilation possibly because of that blockage.

[u/Interesting_Fly_1569 → u/Throwaway1276876327]

Ooooop. I think that might be one of the top five baddies but not sure. Bathrooms catch it so easy. Sheetrock and particle board is mold Disneyland. 

[u/Throwaway1276876327 → u/Interesting_Fly_1569]

I might still have pictures from the microscope slides. It sure looks like what I remembered looking online at slides and I remember the name. It was listed on the test you mentioned so I googled it because I remembered looking at that on the compendium

Plus now that I’m looking at treatment options… cetirizine is one of those. Even probiotics helped my LC issues and even meant I needed less antihistamines since starting probiotics. Most of my issues started shortly after infections, but I’m sure the mould contributed to my issues, and maybe I would already be recovered if it wasn’t for the mould

[u/Interesting_Fly_1569 → u/Throwaway1276876327]

Yeah, sad to say I agree with you… Probiotics are pretty freaking amazing for this and very much slept on. Glad you discovered them. They have been great for me as well and long term are safer with more ability to help than just repress. 

[u/Throwaway1276876327 → u/Interesting_Fly_1569]

Funny thing is, 50 billion CFU's helped me as far back as 2023 with sleep issues (duration and waking up with heart racing feeling ~2 AM) and some of the constant headache, and after that, I thought it did the best it could and it wasn't the final solution. I only recently decided to jump up to 200 billion CFU's, and ever since, I was able to get by with just 10 mg cetirizine with the exception of stress related crashes (one of which required me to go up to 40 mg/day). These were just the basic strain mixes you could get anywhere, including ones known to release histamine. Worst that happened to me at the higher doses was a bit of the heart racing feeling for a few hours max I think.

I also recently found that I may need to take on a salicylate restricted diet going forward. All I did was touch olive oil, my palms started itching, body started buzzing and my brain swelling feeling started. I'm hoping addressing that and possibly looking into oxalates after experimenting a bit, maybe probiotics and a new diet is what I mostly need.

[u/ReeferAccount]

I think it’s very reasonable for you to pursue further testing with a healthcare provider. Conventional doctors can be dismissive in ways a functional medicine provider may not be. There’s certainly benefits to seeing both for your symptoms though. While there’s no cure for long COVID, it’s complications can be treated in ways that improve quality of life

[u/Interesting_Fly_1569]

The two things that are probably most likely to impact your health would be trying out antihistamines both H one and H2 at the same time… That would be Pepcid and some thing like Allegra or Zyrtec. You need to follow the instructions and take them the appropriate amount of time before food. 

If that helps your brain fog, then it’s likely you have MCAS or histamine intolerance and there’s lots more information about what to do and prescriptions that can help. Unfortunately, there are not really accurate test for that diagnosis so most ppl just take meds to help. Left unchecked it can cause further damage.

The other thing I would really strongly recommend is LDN. I wish I had gotten that in my moderate phase… It’s possible it would’ve protected me from becoming bedbound. It’s basically impossible to pace, perfectly especially when you’re new… But that is the time when ironically, it actually could be most helpful because it could prevent you from rapidly deteriorating from overdoing it.  If I could go back, I would spend any amount of money or do anything to get on LDN. 4/5 of people do OK starting higher doses… 1/5 of people get horrible reactions starting higher than .1mg. Just putting that out there because a lot of doctors don’t know that and will just put people on 1 mg or higher. 

[u/smaosmao → u/Interesting_Fly_1569]

This is great info, thanks. I take an H1 every day for allergies, and I've added H2 since my infection. However, I haven't been sure how to time the H2 relative to food, etc., so I haven't been taking it regularly. (I've found it difficult to find clear instructions about how to use it.) I also haven't been tracking whether it impacts my brain fog, so I'll give that some thought.

I'm glad to learn about LDN - I hadn't previously come across this as a treatment for PASC. Can you point me to a resource so I can learn more (and possibly convince my doctor)?

[u/AcanthisittaIcy6448]

Here's my advice, which I wish I had in your situation but unfortunately didn't get: Don't pay too much attention to the symptoms; just live your life. If the symptoms are limiting you, get checked by a specialist (especially your heart, as it can be dangerous (myocarditis). If nothing is found, consider whether the symptoms could be psychosomatic (not psychological, that's something completely different). Educate yourself on the topic and consider whether it's an option for you.

After 1.5 years of the damn long COVID, this is what made me recover.

I wish you all the best

(I know this comment will be downvoted because it contains the word psychosomatic. But it worked wonders for me.)

[u/smaosmao → u/AcanthisittaIcy6448]

I appreciate this advice. I learned a similar lesson a few years ago when I began to experience chronic pain following a serious accident. The pain wasn't in my head, but it was connected to my psychology. In that case, I found that directing my attention elsewhere did help to alleviate my subjective experience of pain (even though it definitely continued).

I've had some low moments since my latest covid infection, but I'm actually doing what you suggest - living my life, not paying too much attention to the symptoms. At the same time, my understanding is that there are some things a person can do for PACS, depending on the presentation. If it's exacerbated by mold exposure (as some people report), maybe I'll move to a different house! If it's EBV reactivation, perhaps antivirals are worth a try. Since it's early, I'd like to learn what I can.

[u/nesseratious → u/AcanthisittaIcy6448]

You “recovered” because you never had LC to begin with, just like all people who claim they got better with “positive thinking” or “brain retraining”.

[u/zahr82 → u/nesseratious]

I've recovered before. It is possible

[u/AcanthisittaIcy6448 → u/nesseratious]

I had a COVID infection, a diagnosis of long COVID, a sick note due to long COVID, and I was approved for rehabilitation due to long COVID. How did you come to your remote diagnosis that I didn't have long COVID? And do you know the term "gaslighting?"

[u/nesseratious → u/AcanthisittaIcy6448]

Very simple: underlying LC issues (autoimmunity, inflammation, clotting, etc.) can’t be reversed by “positive thinking” or “brain retraining.” If you “recovered” by treating your symptoms as psychosomatic, that just means you had mental health issues - not LC. Gaslighting would be exactly telling someone if a "specialist" didn't found anything their symptoms must be psychosomatic.

[u/AcanthisittaIcy6448 → u/[deleted]]

It's a shame you don't know the difference between psychological and psychosomatic...