Lyme disease and Mold toxicity: The invisible truth
If you had met me in 2018 or prior you would know that my passion was fitness. I was basically a fitness junkie but not in the crazy competition way. I found a passion for working out when I was in high school and continued to use fitness as a tool. It was always the one thing I could count on when things were getting tough.
I'd go for a workout and instantly feel better. Some days I wouldn’t even feel normal until I worked out. I was so passionate about fitness I started a YouTube channel with a personal trainer on fun short fitness videos. If you need a good laugh or some fun fitness videos visit Alice and Theora on YouTube.
Even though I had gone into the career of dietetics and was working as a Registered Dietitian in skilled nursing facilities, Aids clinics, outpatient clinics, and board & cares, what I really wanted was to be paid to workout. I had dreams to open my own studio one day and was in the process of making that happen when everything crashed.
When It Started
In 2018 is when I noticed I was having more and more difficulty keeping up with work tasks. I thought I was working too much so I slowly started to cut back hours until I was at the point where if I cut any further I wouldn’t be able to make it financially. My shifts were only 6 hours some days and I worked 4 days a week.
In August of 2018 is when things really got weird for me, all of a sudden, I literally could not get myself to go to the gym. I was physically so exhausted I was having difficulty driving. How on earth was I supposed to go to a HITT class where I’m on and off a treadmill?
I paused my gym membership
August and September of 2018 I worked out a total of only 5 times. One of my best friends was the General Manager of the studio I worked out at and so I called her up and said “Look I have to pause my membership.” She noted that I had barely been there and asked me if everything was okay. At the time, I didn’t have much of an answer because I truly didn’t know, but I knew what was going on in my body was very off.
I experienced extreme fatigue, brain fog and neurological issues, for example, I noticed I would see a green light and stop and a red light and go. It was unsafe to look away from the road when I was driving or I would swerve in whatever direction I looked to. So if I looked at the radio on the right, the car would go to the right. I also experienced body shakes, sometimes for up to two days. The worst of all was insomnia. I have always had trouble sleeping but not like this. I got up to taking 2mg of xanax a night or 10mg of ambien (if you know anything about these drugs this is A LOT), and I still wouldn’t get to sleep. Most nights I was averaging 2-4 hours, if that.
The final straw: The Railroad Incident
I was when I was on my way to work early in the morning, I was covering a skilled nursing facility I had been to before but wasn’t familiar with the area exactly. I came across railroad tracks with the lights flashing and the bar coming down so I stopped. I sat there for about 60 seconds before I noticed that I only saw one striped red and white bar in front of me. My first thought was “I’m in the ghetto, someone must have ripped the other one off.” Then about 30 seconds later I looked down and saw railroad tracks, railroad tracks that I was directly on. My heart started to beat harder and I looked in my rear view mirror and there it was, the other bar, I had literally stopped on the railroad tracks and didn’t even notice. At this point I had no choice but to back up as far as I could and pray I would be ok. By the grace of god, the train was on the further of the two tracks and I was not harmed.
I immediately went into intensive outpatient treatment
After this happened, I called my sister who works in healthcare running hospitals and treatment centers and she immediately called my doctor and I was pulled out medically right away in October of 2018. I went straight into intensive outpatient treatment trying to figure out what was wrong with my body. November through January, I was a shell of a human. I barely remember that time.
Figuring out what happened
The next 10 months from the time I was pulled out medically, my medical team worked hard to find out what was happening. All we could tell was:
My brain cognition had declined substantially.
My thyroid was under performing.
My gut had microbial warfare going on.
My adrenals were completely shot and so confused they were shooting out more cortisol than my doctor had ever seen.
My liver and kidneys started to fail.
After the longest 10 months of my life and lots of tests, trials, tribulations, and being named the “mystery case of the clinic” my amazing doctor, who I switched to, finally found my first diagnosis.
I left my home
I was diagnosed with severe mycotoxin, or mold poisoning, the highest the clinic I was at had ever seen in a human before. A mycotoxin is the actual toxin that is created by mold spores, meaning that if you live in a place with mold, it is giving off a toxin that could potentially be making you sick. The strains found in my body were specific to mold found in water damaged buildings. My doctor recommended I move out of my apartment immediately and throw out everything I own because mycotoxins (mold spores) can live in all of it. So I did.
By August I left my entire life in LA, threw out all my belongings and said goodbye to the home I had had for the past 6 years. Needless to say, I was heart broken beyond belief. August also brought another diagnosis, Lyme disease.
In case you haven’t noticed, there was a theme with my illness, I continued to be off the charts with everything and not in a good way. So of course, I tested positive on the CDC Lyme panel, the panel that has many strains missing from it and the CDC has said themselves that it is not the best tool and gives a lot of false negatives but, nope! I was positive on 4 different strains, needless to say I was very Lymie….
Lyme is not genetic
Unfortunately (but fortunately) 5 of my family members had been through an intensive lyme treatment protocol in Nevada and now are living normal healthy lives in remission. That being said, I want to make it clear that Lyme is not a genetic disease. Only one of my blood relatives tested positive for Lyme, the rest were through marriage and they all remember being bit by a tick. I, on the other hand, had no recollection of ever having a tick on my body.
In the months before I set off to Nevada for treatment I dove deep into research. I had been following Dave Asprey for years but not very closely, but now I knew he was really the only one talking about Lyme disease and mold poisoning. He made a whole movie, The Moldy Movie.
I quickly switched to a low/no mycotoxin diet because mycotoxins (mold) do come from some of our food sources. I also learned about how mold can change genes on and off in the body and that mold and Lyme usually go hand in hand. What it looked like had happened to me was I had potentially gotten Lyme from some type of blood sucking insect (mosquitos, fleas, etc) or there is a theory that it can be sexually transmitted. Either way, somehow I got it and my immune system was able to fight it off for some time -- which is the case for a lot of people.
Lyme attacks when it's given the proper time and place
Lyme really only attacks when it is given the proper time and place, like when the immune system is down. Judging from the amount of mycotoxins in my body, my immune system put up such a huge fight, probably because I was healthy for so long, but all the while I was being saturated with mycotoxins to the point where my body started to shut down. Sometimes I wonder why it had to get so bad before I noticed? Or was I not paying attention to the signs? Or was I simply trying to live a “normal life” and show up to everyone with a happy face and pushing my illness down because I refused to let it take over my life? Well, guess what, if something wants to take you out, it will.
In November of 2019 I started my Lyme treatment. It was a very intense 2 month treatment. I am happy to say that my blood is clear from Lyme and I am in remission! We are now working on the mold. It's crucial I stay healthy because the mold could potentially re-activate the Lyme. I’m staying positive and doing everything I can to keep my body healthy. Unfortunately, while I was getting Lyme treatments I also opted into getting brain treatments because they did a brain scan and could see that I was having neurological issues. The brain treatments ended up hurting me and I am now dealing with a brain injury. Don’t worry, that brain doctor is no longer collaborating with the amazing doctor who performs the Lyme treatments saving so many lives!
Feeling judged by others
This has been the most challenging thing I've ever gone through because both mold and Lyme disease are invisible illnesses. To everyone, I looked fine. In the time period where we didn’t have a diagnosis, I felt judged by so many people that meant a lot to me. I was told I was fine and that I should just “release” these feelings I have. Even medical doctors told me “you look like the beacon of health!”. I wanted to scream! Did they hear me at all when I said I could barely get out of bed and felt like I was going to pass out all the time?
The good days and the bad
During this time it became very clear to me to surround myself with people who accepted me for whatever was going on with me. My medical team became some of my best friends. I have good days and I have bad days and I’ve learned to just “roll with the punches”. I take advantage of my good days, and I allow myself to rest on the bad ones. I’m not going to lie, it isn’t easy, especially now that I have more bad days than good. I’ve gotten serious with my lifestyle changes, for example my diet, I follow Dave Asprey’s bulletproof diet. I also don’t socialize much. I have found that it makes me feel worse and it is easier to stay home than be social.
I cut alcohol completely out of my life and honestly don’t feel any type of way about it anymore. In the beginning I got off social media because I couldn’t handle it. I had nothing to say because we had no idea what was going on. Once I finally felt like I had a message and a duty to support others I got back on and have shared the good, the bad, and the ugly.
If you are coping with something like this, my best advice to you is:
1. Find a good medical team.
This can make or break you. If a doctor tells you you are fine but you know you are not, find someone else.
2. Find people you can count on.
My second piece of advice is to find at least one person you can count on to be there and not judge you. Just having one person makes a difference.
3. Do what you can when you can and find ways to make you feel good.
This may have been the most difficult for me because I had to give up exercise and it has always been my go to. But for 10 months it was a big hard NO. One time I didn’t listen and my body paid the price for months. If you can find a job that you can work from home and create your own hours, then do it. But only if it doesn’t stress you out.
4. Change your lifestyle
This is the hardest for most people but it must be done. It is temporary. I know it causes social issues because all of a sudden you cannot drink or go out and be social anymore but trust me, you will be better off in the end. I like to call this, the art of selfishness. Anything that comes to you ask yourself first, what is good for me? If it doesn’t benefit you during your time of healing, which I hate to say is most things, don’t do it. You will pay the price.
5. Get rest!
Even if you are like me, an insomniac, rest when you can. So many people will tell you their recommendations like, get on a routine, and maybe that works for some people, but it doesn’t work that well for me. So I rest when I can and when I need to.
6. Find something to fall into
For me it was Harry Potter. For whatever reason, diving into that world took me out of my body and allowed me to feel normal in the abnormal. Hey, whatever works right? Hi to all my Potterheads!
7. Share your story
Lastly, when you are ready, share your story. People need to know about these illnesses. Not only that, but social media is filled with so much fake sh*t, it makes me sick. Be authentic and raw and share with people how ugly and messy this gets because the world is not all rainbows and butterflies.
I'm still on my journey and it's not easy. I know I'm not alone and that if I share my story it could help others. All I have ever wanted to do was help other people. That is why I went into the medical field and became a dietitian. Unfortunately it didn’t bring me the satisfaction or allow me the freedom to make a difference on a big scale.
This is where I find gratitude for my illnesses. Without them, I wouldn’t be able to really support other people. I would also still be in a job that I hated and only lived for the weekends. I would still be in an apartment that was slowly killing me (even though I loved that place so much!!!).
These illnesses have grounded me, pushed me so far down the rabbit hole and at times made me think I couldn’t do it. There were so many times I wanted to just give up. There's something inside of me that kept telling me to keep going. That voice is the little girl that has always been inside of me cheering me on. Knowing that, I know that I am up to something so big in this world. I've always known that I will help others, maybe this was actually the push I needed to really step outside my comfort zone and make something happen.
My visions and my struggles
I have visions to create wellness centers. A center where people can go in a situation like I was in where they need care but don’t quite meet criteria for inpatient. If I had a wellness center like the outpatient center I went to in San Diego that had an option to stay there, it would have been almost perfect (I would bring in some more therapies). One thing that has and still is the hardest for me is driving. If I could have been living somewhere with all the treatments I needed... Now that is overall health and wellness. I still have visions to open a fitness studio but I know there's still more that I want to do. These visions are the ones that keep me going. It is because of me thinking bigger that I am able to keep hold of my dreams to one day bring my visions to reality.
On my good days, I get out of bed and continue my treatment protocols. Vision is important and mine keeps growing daily. This means I can and will make an impact on this world in the best way possible.
For more from Theora, follow along on IG: @theora.dobronte