My Health Journey with toxic mold and EBV

It was exactly a year ago, April 2023, when I realized something was seriously off.

My daughter had turned one and was sleeping through the night, napping regularly and we hired a nanny to help me a couple of days a week and so things should have been getting easier. Yet, I was still struggling. I was chronically exhausted, had major brain fog and just felt like a zombie.

I have had so many community members ask me for more details on my health journey that I decided to put it all onto one document… its an overview , bullet point style, mostly chronologically, which I hope can maybe help someone who is going through a similar experience someday.

My symptoms

It took me a while to realize something was off. Pregnancy was rough ( emotionally after 3 losses, physically with IVF and partial bedrest and horrible nauseas and Covid), and post partum was… post partum. In retrospect I know realize that I didnt feel as bad post partum, it was a few months after that I started feeling these new symptoms……

Some afternoons I would take a nap ( I have always been a fan of short 20 min naps and have been taking them for years) and have to call my husband from bed because I could not move, I could not get up out of bed, could not take care of the kids.

I used to run 2-3 miles regularly and do spinning classes and weight training and HIIT classes, and suddenly a 15 or 20 min Peloton class would wipe me out for the rest of the day
I had massive brain fog. I would sit in front of the computer and could not do simple things like write a simple email to my son’s teacher, respond to a text message, let alone write a blog post or research paper.
I would read a page and nothing would stick, I would have no idea what I had just read.
The thought of doing anything would become overwhelming and exhaust me and shut me down.
I could not remember anything. I showed up to appointments on the wrong day /time, forgot timelines, could not remember what I did a day or two before.
I stopped making any plans with friends/kids/work- especially in the afternoons and evenings. I lost friends because many people didn’t understand or care enough to ask what was going on. I lost out on work engagements and professional growth. I was missing out on key years and memories with my kids because I Was always too tired

At first I felt like it was post partum exhaustion; I had 2-3 functional hours a day in the morning and the rest I just wanted to sleep ( as a mom of three I really struggled in the afternoons when the kids were home) but at some point it just FELT like more than just having a baby - I started suspecting something else was wrong. Then, one day I realized that the memories that my older kids were going to have of me was of mom always tired and in bed- it was THIS that finally got me to seek help.

It was really scary. I thought maybe I had a brain tumor (because of my memory issues), long Covid or some mystery illness. Finally (it took a minute because, thanks to my exhaustion and brain fog, even picking up the phone to make an appointment with a doctor took forever) I started working with a functional medicine doctor. She had bloodwork done, then I asked for mold testing, followed by gut testing and the results were- as expected- all over the place.

I had:

definite depletion of important vitamins, minerals and even hormones like ferritin, vitamin D, etc
high levels of some mycotoxins
EBV activation for the last year

Finally I had some answers and finally I could start the healing process. Well, kind of… because healing with mold and EBV is not really linear.

Here is a bit of what we have done

Deficiencies
Started a supplements regime to address ferritin depletion ( iron), Vitamin D/B low levels and other deficiencies.
mold:

Rule 1 for mold is that you have to be “out of mold,” not living in mold, to be able to heal. We started the slow process of testing my home to find out the source of the mold. Testing was booked (the inspection company we chose, which we trusted and had worked with in our last home years ago was scheduling months out) but we had to wait .
I tested my son and husband who also had elevated levels of the same mycotoxins .
Because mold testing, and then remediation, was such a slow process, we started a supplement regime to address mold - even if still living in mold….. and mitigated mold as best as we could (more on that below)
After testing our home we found mold growing in our crawlspace. Our home is a newly built home that is 2 years old. The way the crawlspace was built, water was pooling in one corner of the crawlspace and not properly draining….. after some heavy rains last Winter (early 2023) my husband immediately noticed and alerted the contractor (because our home as still under warranty). They did respond and eventually took ownership of the mistake and remediated- unfortunately they took FOREVER to respond. Weeks of my husband emailing and calling until they finally came out, more weeks before anything was fixed and in that time… mold grew. So, 9 months later when we had the house tested, I was not completely surprised the problem was the crawlspace.
2 weeks ago (April 2024), about a year after I realized something was wrong with my health, the home has finally been fully remediated, tested again and cleaned and we are back… ready to continue healing
We thoroughly deep cleaned our home and then tested some of our hard to clean items (sofas, carpeting, window treatments) to asses if they needed to be thrown out or cleaned . We recently received the lab results and it (thanksfully) showed hardly any mold so we will be deep cleaning asap. (note: I think that the fact that the mold was in the crawlspace and not inside our home might have had something to do with this)

ADDITIONAL NOTES/LESSONS related to mold:

While you need to be out of mold in order to fully heal from its toxic effects, sometimes that is not possible (finding a trusted inspector/ remediate takes time/budget might not allow you to just move out or to immediately remediate/ you might be renting etc). In this case there are some things you can do (that I did) to lessen the exposure. This will depend on where the mold is located of course and how bad the situation is and your sensitivity. Please note: I do NOT recommend not remediating and just doing what is listed below…. these are just things you can do temporarily to mitigate, lessen the load. If you can leave, I recommend leaving.

Run high quality air filters 24/7. Specifically those which have true HEPA filtration aimed at filtering out mold. HEPA filter fibers can remove 99.97% or more of airborne particles down to 0.3 microns - several times smaller than the typical mold spore
Keep humidity levels between 30-50%. Mold thrives in high humidity so keeping your home relative humidity lower can help decrease its growth
Install a higher MERV rated air condition filter… Mold spores come in many sizes but are generally greater than 1 micron in diameter. Air filters rated Merv 13/13A using ASHRAE’s standard 52.2 with Appendix J are constructed to capture 90% of particles 1 micron and larger. Change them often (note: make sure your HVAC can handle a higher MERV rated filter first)
Dust often: Dust can harbor mold spores, mold fragments, mycotoxins
Continue to always turn on bathroom’s exhaust fan when showering and a bit after (and keep shower door open and windows open if you can! If your mirror is getting foggy it’s too humid and mold can grow.

2. Not all inspectors & remediators are good. I could talk about this for hours. The industry is a real POOP SHOW. IT’s hard to know who is good and who is not. Everything is ridiculously expensive and unfortunately spending tens of thousands of dollars does not assure you that the inspection and/or remediation is being done properly.

Tips for finding “ good” professionals

For inspectors I recommend avoiding inspectors that rely only on one type of testing (just an air sample or just an ERMI) … sometimes you really need a multi method approach to finding mold which can include: air testing, ERMI/ dust testing, visual inspections, thermal / humidity meters, cavity testing, sample swabs etc. For example: we had one air sample come in with ridiculous high levels of dangerous mold in our crawlspace and then a second inspector tested the same area and found relatively low levels. Both inspectors said they “stand by their results” …. in our case we had swab testing also done in the crawl space that backed up the finding of mold growth from the first inspector, but the second inspector did not swab test so he would have concluded “ no concern” and we would have thought there was no problem down there
Inspectors should be more detectives than anything else…. unless the mold source is obvious they should not arrive and start testing like crazy, instead they should be doing detective work that will determine what type of testing should be done.. does that make sense?

As hard as it is to find a good inspector, it is even harder to find a trust a remediation company. Remediation can be so so so expensive ($40,000- $150,000 + obviously depending on the problem) . Different companies have different methods and different products they use and remediation techniques. I recommend getting multiple estimates. Ask what products they use (many will use very harmful / toxic stuff which will then expose you and your family to harmful VOCs which is the LAST thing you want when your health is already compromised ). I like to say that someone in the family has chemical sensitivities and make sure the company has worked with people like this before. I ended up providing the names of the products I wanted used in my house, based on research. My husband then spent weeks getting them to agree to use our products instead of theirs. Finally, Mold inspectors should be certified IICRC

You can ask local mold literate doctors if they recommend anyone!

3. EBV (Epstein Barr Virus- a very very brief overview) :

95% of people have EBV virus dormant in their bodies. Ebstein Barr virus is the same virus that gave many people mononucleosis (I never had it that I new of but clearly was a carrier of the virus).

Most people are silent carriers of this virus and never even realize it, as it never affects their health. However for some people (hi! its me!) when you have issues with your immune system, (hi mold, hi Covid) , or high stress, the virus can activate. The main concern is when it becomes a chronic activated state. Most doctors don’t really understand EBV activation and how to read labs and what labs to run, but its actually a very simple blood test. Key symptoms? chronic fatigue, brain fog.

How we have approached it until now:

This is still a work in progress. There are no magic pills for EBV. BUT my doctor has me on an antiviral, immune boosting protocol. Additionally because at the heart of it is a weak immune system , we have recently started high dose Vitamin C IV therapy. Finally I am being forced to listen to my body and rest when it needs to rest; more sleep, more midnfullness and yoga, more walks, more naps.

This is a brief overview, but I hope it is helpful for anyone going through any of this. For me and my family mold and EBV have been life altering. While my husband had similar mycotoxin levels than I did , he did not experience the symptoms I have experienced; genetically I am simply more vulnerable.

I wish more people knew how difficult this is; like I said, I have lost friends, work opportunities and, more importantly, time with my children- for lack of a better word: it sucks. BUT it is important to get the help . Exhaustion is not normal. Chronic brain fog is not normal.

Last note: Health issues can tear couples apart; the expenses, the stress, the lack of clarity, if one person has symptoms and the other doesn’t etc. I think its important to mention that both people are survivors. I could not have survived this last year were it not for the full support of my husband…. he carried a very heavy toll for the family having to step up not only for daily family / household handling, but for spearheading the inspection and remediation process, expenses, etc It took a toll on him too; he ended up with a lot of stress and trying to figure out the right thing to do and pushing people do it quickly, use the products I wanted etc. It is a LOT to handle whether you are the one with the symptoms or not.

Address mold ASAP, address symptoms ASAP Things rarely go away on their own (mold will not ) and often just get worse with time.