Leah's Labs and Treatment

As if it was not incredibly obvious that there was mold in the room, we decided to have Leah's mycotoxin levels checked.  This test is a urinalysis that tests the level of mycotoxins currently filtering through your kidneys.  Remember she lived in this room for FIVE weeks....that's it.  Below are her results in October.

The results show the type of mycotoxin tested for.  The value column shows what was measured as currently present in Leah's urine.  

The results shows the following options Present (meaning found in the sample), Equivocal (meaning uncertain levels in sample), and Not Present (meaning not found in the sample).  

Leah's Ochratoxin A level was 9.318 ppb (parts per billion).  Present is anything greater than or equal to 2 ppb.  Hers was almost FIVE times that.

Leah's Aflatoxin Group (B1, B2, G1, and G2) were 0.999 ppb.  Present is anything greater than or equal to 1 ppb.  Equivocal for this test is anything between 0.8 and 1 ppb.  This is the only group that didn't fall in the present category.  Clearly there was still some in her system, but it was a small amount.

Leah's Trichothecene Group measured 0.363 ppb present.  Present is anything higher than or equal to 0.09 ppb.  This is FOUR times that level.

Leah's Gilotoxin level was 7.467 ppb present.  Present is anything higher than 1.0 ppb.  This is SEVEN times that level.

Leah's Zeralenone level was 0.969 ppb present.  Present is anything higher than or equal to 0 .7 ppb.  So this was SLIGHTLY higher than present, but shows a definite exposure

Here is some more info on the impact of exposure to each of these mycotoxin group.

The local doctor we saw in Houston ran a bunch of bloodwork.  She recommended starting on a handful of supplements to start ridding the toxins from her body.  She had Leah go on a very strict diet, as her GI system was shot.  Mold can cause leaky gut syndrome and causes the gut bacteria biome to get all out of whack.  

Leah seemed to be improving being out of the disgusting living conditions and with the supplements purging her system.  She called me during the middle of the night one night during finals week.  She was nauseous and in tremendous pain in her belly.  I thought it might be a tummy bug and encouraged her to take some medicine.  I offered to come up, but she didn't want me to have to do that.  She said she felt like it was her kidneys, but she wasn't having any normal kidney issues symptoms.  She curled up with a heating pad and eventually was able to fall back asleep with me on speaker phone.  Eventually she said she thought she was okay and we both went back to sleep.  A few hours later, my phone rang again and she said she was trying to find a friend to take her to the ER and would call an ambulance if she couldn't find one.  It was a Sunday morning and most of her friends were at church and had their phones silenced.  Eventually she found one who had just left.  She circled back around and picked Leah up.  She offered to stay at he ER with Leah, but Leah really didn't want her to be exposed to anything with it being finals week and all.  Another friend saw Leah's voicemail and came to sit with her.  She refused to leave until I arrived.  Thank God for her sweet friends.  She is so blessed!  

The ER gave her pain meds and ran a urinalysis and blood work.  They said they didn't really find anything and thought it may be cramps.  Enter eye roll here.  She knows what cramps feel like and was insistent that it was not that.  In their defense, we didn't have insurance due to job loss at the time and they were trying to keep it minimal.  Leah again mentioned her kidneys.  The doctor overseeing the ER said he wasn't comfortable sending her home without a better answer.  He ordered a CT scan which indeed showed that Leah had been passing kidney stones all night.  No wonder she was miserable.  Obviously this girl really knows her body.  We got some medicine to help with the pain and inflammation and got some groceries that would be easy on her.  It was scary how quickly it came on out of nowhere.  Some checking with her doctor told us that it was likely the mycotoxins which are filtered out of your system by your kidneys.  Since her body was trying to clear out so many, it likely caused a backup in her kidneys.  It was a reminder that while things had improved so much her body was still not normal yet.  Leah finished up her finals and headed home a few days later.

Over break, Leah completed a very strict diet and some medication during treatment for the GI issues. She continued on the supplements.  They seemed to help some.  She was able to rest and recover over winter break and made the decision to go back for the spring semester.  I was shocked she would want to, but she said, "They've taken enough from me, they're not taking my dreams, too."    We hustled to find a place off campus for her to live, days before the semester started.  We were done with Res Life and campus life and had no desire to ever return to that again.  We found a nice apartment which was helpful so she could cook for herself and try to keep rebuilding her gut health.

Shortly after we connected with a doctor in Richardson, TX, about 3 hours away, who is well versed in toxic exposure and started seeing him after break.  While the local doctor got us started on the right track, it was difficult to get in to them and communication was difficult.  She was also incredibly negative, albeit realistic, from the start.  She told Leah she needed to drop out immediately and plan not to return to school for a couple of years.  While this probably had some truth to it, Leah was devastated to hear this.

The challenge with the new doctor was Leah lived an hour and a half from home and the doctor was three and a half hours from home.  Since they are only open during the week and Leah had classes, it was less than ideal, but we made it work.  Again, her professors was so kind and supportive.  We found a place to meet and ride together and made the trip up and back in one day.  This doctor was so knowledgable and encouraging from the get go.  He ordered mold sensitivity allergy testing.   He suggested staying on the supplements and rechecking her mycotoxin levels.  We grabbed lunch and came back for tests.  The allergy testing was miserable.  They would inject her over and over with different small dilutions of molds increasing until she reacted and then decreasing until she stopped.  It was super un-fun.  It showed she had a very mild reaction to mold from an allergy point.  It shows even more how bad her room was that her body reacted so strongly living with mold.  I truly expected her to have bad allergies to it based off how sick she had been.  This testing definitely caused some symptoms and she wound up needing antihistamines for the rest of the week.  

Here are her results from that mycotoxin collection.  You can see that this time only one level showed Present, two showed Equivocal, and two showed Not Present.  There was definite and drastic improvement from October's levels.  All five still showed showed something, but the numbers dropped significantly.  Getting her out of that room made a huge difference!

At the follow up the doctor explained that this was a great improvement, but that we weren't done yet.  Mycotoxin infiltrate tissue throughout your body.  They also weren't gone completely yet.  He recommended coming back up for a week of testing and treatment.

Because of Leah's school schedule we had to wait until spring break to make it happen.  We were ALL incredibly tired of giving up every free minute and break for these things, but that's what families do, support each other.  We packed up and headed to Richardson for the week.  Leah had ten sessions of hyperbaric treatment, each an hour long.  She would go early in the morning, have to wait two hours, and then return for another hour session.  Hyperbaric chamber treatment is where they put you in a glass tube and pump it full of 100% oxygen.  This pushes a lot of toxins out of your body and helps heal damage to your body simultaneously.

The treatments feel a bit like scuba diving, earning them the name "dives".  There is a lot of pressure and that can cause issues.  For Leah, she had horrible ear pain and fluid in her ears.  She took a lot of Sudafed and used some ear pressure plugs but really struggled all week with this.  That mixed with super early mornings and giving up yet another break for mold treatment made for a miserable week for Leah.  In between treatments she had testing to see what damage had been done to her brain and vitals.  She had two QEEGs and a CNS Vitals test that week.  It showed some strange results and the affect mold had on her brain function.  It's not that I didn't believe that mold could cause these things, but it seemed hard to conceive that it could effect SO much in such a drastic way.  The kidney stones and this test made that reality clear.  Despite feeling terrible from the pressure all week, Leah did feel like they made a difference.  She felt like she had a bit of a symptom flair shortly after that, but it didn't seem to last very long.  We had a weekend home and then she headed back for the semester.  

She ended the week with another mycotoxin level test.  This time we had TWO zeros and ALL FIVE Not Present.  Woo hoo!  Clearly the hyperbaric helped push almost all of the rest of those nasty mycotoxin levels out.  We both felt like maybe we will get to put this all behind us some day.

This graph just shows all her levels over multiple tests.

Spring semester went well overall.  There were lots of big emotions about the school and processing what all had happened.  Leah's physical health seemed to be doing really well other than that flare.  She was able to remember things from classes, had more energy and appetite than fall, and felt like she was getting back to normal overall.  She finished the semester strong with all As.  

Leah has spent the summer at home.  It's been good to have her here.  She's worked hard working a job and knocking out a summer class.  We continue to see the doctor regularly. 

We checked her mycotoxins again in July.  

Her levels were up a little this time.  We were both pretty disappointed to see this.  The doctor was quick to remind us that mycotoxins are in her tissues and organs.  They leak out over time.  So the great results we saw in March showed there weren't many more being drawn out in her system.  This result shows that her body is, indeed, still working to purge it all out. 

We are working on a new plan for continuing to get things out.  I have no idea how long this mess will go on.  I am not sure if we will keep doing supplements or if we will do hyperbaric chamber again.

Along with the unknowns are the unknowns of the future.  What longterm damage has this all caused?  Will the horrific issues that come with exposures to these mycotoxins happen to her?  It's terrifying.  Mold doesn't just steal your health...and your belongings...and your school breaks....it can very much so steal your future.  All that we can do is work on getting her as healthy as we can as quickly as we can today.  I wish schools and landlords understood what they are doing.  As you can imagine, this has all had a huge impact on our family, physically, emotionally, and financially.