Shortly after our son’s first birthday, in January amongst cold and flu season, our son got a typical cold. He lovingly shared it with his mother, me, Sarah. It was a little worse for me. I had all the typical cold symptoms, plus a completely blocked ear. I couldn’t hear anything out of my left ear. In my typical fashion, I let it play out, I knew antibiotics were not great for your health if you didn’t need them. It eventually cleared up in a couple of weeks, no problem. Or at least that’s what I thought.
A couple of weeks after the cold and presumed ear infection cleared up, I got out of my car, started walking and I completely fell over. My mind had perceived that I was walking straight but my body didn’t register and I slowly fell over. Thank goodness it was winter and I landed in a snowbank that cushioned my fall. No harm done to me (minus the embarrassment). This, however, was the start of my dizziness.
I decided that was scary enough and went to my primary care physician. She thought it was a residual effect from the cold I had; benign paroxysmal positional vertigo (BPPV). This is an issue when the ear crystals get dislodged from the location they are supposed to be in and migrate to a different location in the ear. My doctor told me it should resolve on its own and also told me to try the Eply maneuver. This maneuver did not resolve my dizziness, but it wasn’t getting worse, so I kept moving on with my life and dealt with the random dizzy spells.
A month or so after seeing the doctor, in March, I started getting more headaches than I normally did, other lightheaded, foggy feelings (now I know this as brain fog), and increasing fatigue. This is in addition to the dizziness I was coping with. From the beginning of all of this, I was working part time. My schedule included two days in the office and the remainder of my work and life time was spent at home with my son. This is important because my husband was not having any of the same symptoms I was having. But, he was also spending 50 plus hours a week commuting and working away from home. My son was also not showing any obvious symptoms, but he was too young to communicate any potential issues and a toddler (which is the definition of non-stable).
I’m an engineer by trade and my nature has always been to figure out and solve my own problems if at all possible. So, my first theory was that we had carbon monoxide in the house and I was suffering from a mild form of carbon monoxide poisoning. My symptoms of headaches and lightheadedness seemed to match up with carbon monoxide poisoning (and of course a long list of other diseases and issues). Despite having brand new carbon monoxide detectors, I threatened my husband with calling the fire department and causing a big scene so they could test our house. Looking back, this was the start of my anxiety and me being stuck in the sympathetic state (fight or flight) as I was completely irrational — not my normal state of mind. My husband talked me down from the fire department and we decided to go out that night and purchase a specific carbon monoxide detector that could be plugged in anywhere and had a digital readout. This allowed us to put the carbon monoxide detector closer to the floor where it settles (our new ones were on the ceiling as a combo smoke and carbon monoxide detector) and could tell us the amount of carbon monoxide in the air, if there was any.
The new detector read zero every location we put it, thank goodness. (As a side note, if you think you have carbon monoxide, don’t mess around, please get to somewhere safe). This was sufficient evidence for me to move onto another theory.
The next theory was other air quality issues like volatile organic compounds (VOCs), formaldehyde, mold, etc. We suspected this for a couple of reasons. The home we purchased was a foreclosure that sat vacant for an unknown amount of years with burst pipes and known water damage. The basement had visible mold from flooding when we purchased it. To make a long story short, we hated the house, but loved the location and the 8.9 acres of land that came with the house. We bought the house knowing we would be redoing everything and we did. We (my husband and I with help here and there from family and friends) renovated everything but the roof and the foundation. Any signs of mold or water damage was removed and the house was put back together. This, of course, included new floor finish, new carpets, new countertops, etc. All of those things were NOT low or zero VOC. We had no idea how much or how little chemical off gassing we had or how much non-visible mold we did or did not have. So, we hired an air quality expert to come out, assess our house, and explain what sort of tests could be done. He was highly rated on the internet and didn’t seem too concerned when he came and looked around. His lack of concern, the high price tag for the various tests, and our skepticism stopped us from moving forward and no tests were ordered. Theory number two was essentially on hold.
I had moved on to theory number three: food. Prior to any of this, we were already on the path to optimizing/sustaining our health, so we were eating what we thought were healthy foods. We were eating mostly whole foods with most of our vegetables coming from a local community supported agriculture (CSA). We had processed food here and there, but it was not a staple of our diet. Despite our OK diet, I was desperate and knew we could do better. We were already following Dr. Mark Hyman and decided to try his 10 day detox from the standard american diet (SAD) which includes eliminating sugar, gluten, dairy, and other processed foods. Much to my disappointment, the detox didn’t address my issues. This was now April, three months after the original cold, and a total of six strange symptoms added to my life: itchy eyes, headaches, fatigue, vertigo/dizziness, foggy feeling (brain fog), and a rash around my eyes. I didn’t want to give up, but maybe I was just getting older? Maybe I was just a tired mom? Either way, life is busy and I went a couple more months with these symptoms without much disruptions to my life.
As spring and early summer came, a couple more symptoms started to show up: a weak voice and pressure behind my eyes. These too were pretty minor, not life disrupting. Then, all of a sudden I was having some strange throat spasms, heartburn, nausea, and some numbness in my face. I went back to my primary care physician and explained all of this. She agreed these all seemed strange and thought maybe the numbness could either by Lyme, a tumor, or multiple sclerosis (MS), all of those possibilities are very scary, and was unsure about the throat symptoms. So my doctors course of action was to send me to an ear, nose, and throat specialist, order a lyme test, and an MRI of my brain. The spasms had stopped by the time I saw the ENT specialist and he told me there was nothing wrong, I was fine. The lyme test came back negative and the MRI came back clear. Thank goodness again. I don’t have lyme, a tumor or MS.
But, why do I still feel awful? During all this testing, I had an additional ten symptoms appear: my numbness went down to my flank (lower back), pain that moved from my calves, hamstrings, under arms, feet, arches, back, and finger knuckles, heart palpitations, tingling in hands and feet, and painful skin (felt like a bruise wherever I touched without any bruises). My primary care wanted me to see a neurologist in Boston since I was having so many neural symptoms, my MRI came back clear, and Boston doctors are better than the rural doctors. This time I still had the symptoms when I went to see the neurologist and his evaluation showed I had about a 10% reduction in feeling (numbness) on my left side versus my right side. He said this could happen due to a virus or lyme. Since my lyme test came back negative, it must have been a virus. Again, I was told there is nothing anyone can do, and I should be fine.
I don’t look sick here, but I am.
I didn’t feel fine. In six months time I had a total of 21 new symptoms from a pretty normal, healthy life before. I did what any patient who is told they are fine but does not feel fine does; I googled my symptoms. Based on what I found on the internet (yeah, I know you can’t always trust the internet, but when you’re desperate it’s all you got), I believe I had lyme or mold toxicity.
The potential for mold toxicity had persuaded me to revisit theory number two, air quality issues from the house. Also, since March when we first thought about this, the basement started to have a stronger mildew smell, so strong that I could smell it in our first floor bedroom. There were some other factors that supported the theory of mold; It was the wettest spring we had in that house which flooded the basement and didn’t allow for it to dry up immediately (all other times it dried up in a day or so) and our dehumidifier was on the fritz and kept turning off randomly allowing the humidity to get pretty high down there. Both of those things, in hindsight, are a perfect storm for mold growth.
Because I suspected the house, we left our house for a week to visit my husbands family out of state. I thought I would feel better. If it was the house making me sick, then being away from it would make me feel better. Boy was I wrong. I was having some severe nausea, to the point I couldn’t eat. I had really bad anxiety (never had anxiety in my life) while we were there and went to the hospital twice. Once I thought I was having a heart attack because my chest hurt and a second time because I thought I had a blood clot in my leg (I had a blood clot in my leg years prior that felt the same way).
I called my doctor while out of state, who I just saw days before leaving, and told her staff that I was feeling worse, that I was sure I had lyme despite my negative test and why couldn’t they just give me antibiotics (I, who never want to take antibiotics, was begging my doctor for them)? They told me that they don’t do diagnostic work over the phone, couldn’t give prescriptions over the phone, and there was no way I could even talk to the doctor over the phone. I was miles away from her, no way to see her and no emergency room was going to understand the complexity or have all the background that MY doctor did (besides, I did go to the ER twice and they found nothing wrong). I was defeated, feeling like death, and pissed all at the same time.
When I got back to my home state, I went to see my primary care doctor immediately (this was only a week after seeing her the last time). The first thing she said to me “you can’t be rude to my staff.” Not hi, hello, how are you doing, you’re still suffering, etc, etc. She claimed I had hung up on her staff (I did not, I said thanks for nothing and goodbye, but I did not hang up). I told her again all of my symptoms, how they were getting worse and how lyme tests are not very accurate. Told her that I thought it could be lyme or mold toxicity. She was defensive, asked me if I wanted a second not-very-accurate lyme test and that there was no way to test for mold. Told me that “there was no clinical reason to give me antibiotics for lyme”, but then after me clearly stating that there was something wrong with me said “If you believe you have lyme, and you believe antibiotics will make you feel better, then, I guess, there is some clinical reason to give it to you.” She then prescribed me two weeks worth of doxcycline for lyme. Telling me that I had to stop breastfeeding my son because his teeth will turn brown or fall out from the antibiotics. Told me that I could go seek out a lyme literate doctor (LLMD), but if I didn’t like antibiotics then I wouldn’t like any LLMD. That visit was the worst experience I have ever had at a doctors office and when I left I felt so defeated and upset about the whole experience I cried the whole drive home.
That was the last time I saw her. There was no way I was going back to her ever again. She made me feel like I was doing something wrong by advocating for myself. I’m sure I could have done a better job of keeping my emotions in check, but truthfully, it should never get to that point. I was not a patient who went to the doctor often and all of a sudden now I am coming in 5 or so times in 6 months. That itself should be clear that there is really something wrong, and you’re not doing your job to the fullest if you keep telling me everything will be fine. The lessons I learned from this are that I have the choice of who I seek care from, there is no shame to keep seeking until I can find someone to help me and the current healthcare system is broken, so very broken.
I never took the doxcycline because I could not make the choice of feeding my son (breastmilk) or healing myself. My intuition told me there had to be a way I could do both. I had found a lyme literate doctor and made an appointment. She, of course, was very busy. I had to wait 3 months to see her. While I waited for the appointment, we had the same air quality tester from March run mold air sample tests in the basement, in the living space, in our bedroom, and outside for comparison. The air test came back high for aspergillus and penicillium in both the basement and my bedroom. Both of these molds are known to cause issues for humans.
We had lined up a mold remediator (one who followed a very specific mold remediation process, you can click here for the remediation blog) and someone to install a french drain in our basement. The french drain would stop the flooding in the basement and reduce the chance of mold growth in the future. There was a two month wait for the french drain basement company (did I mention it was a wet spring for everyone in Massachusetts?) and we wanted to have the remediation and waterproofing back to back so we didn’t get any mold growth back after spending thousands on remediation. I was still waiting to see the LLMD, but believed the house was definitely not helping me, so we decided to get out of the house and stay with my sister until both of those things were completed. Unfortunately, I did not get any better there, in fact, I got worse.
By the time I was able to see the new LLMD, I had a total of about 30 new or worsening symptoms. She was very kind and listened to my whole story from the beginning. The best part though was that she believed me and told me she will figure it out. Her husband suffered from similar symptoms that no one could fix and she took it upon herself to dig deep into the research and help him. That is how she became an expert in Lyme Disease. After telling her all of the symptoms and what was going on with my house, she also thought it sounded like lyme and/or mold toxicity. She performed a lot of the Richie Shoemaker mold tests (which you can do blood tests for, my primary care was wrong) to either prove us right or wrong for mold toxicity. She also did the most accurate Lyme test available through IGENEX and tested for other potential co-infections. When the results came back, I had trigger high on a lot of Richie Shoemaker mold tests, which she believed proved I had mold toxicity. I also had the genetic predisposition to not clear mold toxins, lyme toxics, and other virus and bacteria toxins; Multi-susceptible. The mold toxicity sickness is officially called CIRS (chronic inflammatory response syndrome) or biotoxin illness. She also looked at the Lyme test through IGENEX. IGENEX has a standard that they go by for negative and positive results for lyme and I came up negative based on the IGENEX standard. But, because my LLMD had so much experience in the Lyme Disease world, she had a different standard that was based on the statistics of lyme disease patients. I had something like a 90% chance of having Lyme Disease based on these standards. So, I had both CIRS and Lyme Disease.
Ahh, I cried, someone believed me, knew my pain and struggle, knew what was wrong, and hopefully how to fix me.
Thankfully, I advocated for myself and it only took me 8 months to find her. Most people with a similar illness can see up to 10 specialists (I saw 2 plus my primary care) and take YEARS to find a doctor who could help. I am very grateful for my short timeline.
This, of course, was only the start to my healing journey. The journey that changed not only my life, but the lives of my whole family.