My Lyme Disease Story

I will never forget it, I was sitting at my desk on Monday June 16, 2021, for what seemed like the thousandth time in the last 10 months I was eagerly waiting test results in hopes that I would have some explanation about what was going on. I opened the results with my heart beating out my chest in hopes that it would not be another disappointment and it was all anxiety. As I started reading through the Igenex Lyme Disease Report there it was I had tested positive for Lyme Disease along with Tick Borne Relapsing Fever Borrelia SPP.

Relieved I quickly called my doctor to confirm the test results. After 10 months and 10 doctors I had an answer and it wasn’t all in my head or had been “pandemic anxiety”. Why did the journey have to be so long and complicated?

Where it All Began

At the end of summer 2020 and beginning of fall 2020 weird and unrelated symptoms started to occur I tried not to read too much into them, after all we were in the middle of a global pandemic, busy season at work was in full swing and I always hate to say goodbye to summer. Little did I know I was embarking on a 10 month journey and would not have answers until the following summer.

It all started with dizzy spells, since I am hypochondriac and this had never happened before I quickly googled the spells and the explanation Google gave me was that it was my sinuses and allergies, this made sense I do have bad allergies and headaches typically during this time of the year. Then I was driving to see my family I was going down the highway and I kept thinking to myself are you sure you know how to drive? Do you remember which petal to use? I thought this was weird but it had been a long week and I thought it was my anxiety. The more I continued the drive the more I started feeling dizzy and the panic attack set in. I ended up pulling over in the break down lane and slowly making my way to the off ramp. When I finally got to a parking lot I used my usual techniques that typically work to calm myself down but nothing was working, someone ended up coming to get me.

About a month later the week before my period I had horrible mood swings and the anxiety was awful. It was not your typical anxiety, it was jittery could not sit still panic attacks once a day. I couldn’t even drive to and from work without someone talking me through it. I thought maybe they changed the ingredients in my birth control or is work and the pandemic effecting me that much?

I called my new OBGYN ( Doctor #1) She told me that it was stress and the pandemic and to take a little bit of Magnesium. I ordered my Magnesium and went on my way. However, the next month same thing happened again. I thought, maybe they really did change the ingredients in the pills and even went as far as to call the manufacturer to see if any changes had been made. The doctor even agreed to refill the RX to see if it was something in the pack of pills. Neither one of those hypothesis were correct and the next month the same thing happened again.

I decided to try another OBGYN (Doctor #2), I explained to her everything going on and she insisted that I should just take some Zoloft and she changed my RX to a lower dose of hormones. Now, it is November so this has been going on all fall and something inside of me was saying that this didn’t seem right but I went with it.

More Symptoms

Over the next few months the symptoms drifted away from just PMS and to more frequently ( the new birth control made it worse). The panic attacks were still coming and I just noticed being so tired all of the time along with, not being able get anything done, missing deadlines and I became forgetful.

I went to another OBGYN (Doctor #3) she switched my birth control again and informed me I had PMDD (premenstrual dysphoric disorder). I agreed since I always have had a rough time around my period and it all fit the description. But things continued to get worse…..

I would have jitters and anxiety and I could barely make it through a work day and wouldn’t be able to sit still my foot would just keep tapping under my desk. I still wasn’t making deadlines and the brain fog was just starting to creep in. My sleep pattern was also turned upside down and I would be in bed early and up early (I’ve always been a night owl and a late sleeper).

As I started to settle into the winter months I noticed heart palpitations which I decided were from not working out as much and anxiety. I then developed heart burn and I felt like I always had a nervous stomach. I went to Urgent Care (Doctor #4) who told me that I had developed GERD and Acid Reflex. I thought this was weird since I’ve never had it before but everyone kept telling me age and lifestyle can effect that.

I decided I would go to my Primary Care Doctor ( Doctor #5) to see if I could get a RX for Xanax since my biggest fear were the panic attacks. The problem I was having was that I was confusing the jitters and shakes for anxiety and panic attacks. When I went to the doctors to talk to her about my anxiety and get the RX my heart rate was 144, her response was “wow your anxiety is really bad are you sure you don’t want something else for the anxiety” I politely declined. I’ve always had a little anxiety going to the doctors but, if she had look at my chart she would have notice my heart rate was only that high when I had an allergic reaction to the cold medicine I was taking.

Is it My Thyroid?

My mom called me a few weeks later and reminded me that we had a strong family history of thyroid disorders. I dove right into the research and it was all making sense. I called my doctor’s office the next day for a same day appointment. I saw a different doctor this time ( Doctor #6). She ran all the tests but continued to tell me it was anxiety and wouldn’t let me leave without an EKG and gave me a RX for Beta Blockers (which I never used).

The tests came back negative for thyroid disorders so I decided to buy an at home testing kit for thyroid and hormones in hopes that someone missed something somewhere. My estrogen level was high along with my cortisol levels. I went back to the OBGYN who ensured me this was normal due to being on hormonal birth control and had another conversation with me about “pandemic anxiety”. The thyroid test came back normal but since I wasn’t a doctor I figured I would go to an endocrinologist (Doctor #7) just to make sure I was reading the test results correctly. She informed me that I was 1. going through mesopause at 34 2. had a rare tumor on my adrenal gland that most doctors only see a handful of times in there career or 3. I had “pandemic anxiety”. None of those diagnosis were close or correct to what was going on.

Vitamins

I continued my search and took another at home test for my vitamin levels it turns out my vitamin D and B12 were low, I was excited that I had an answer and it was a simple one. I started taking vitamins in hopes that it would help. I had a schedule follow up appointment that week with my Primary Care Doctor and was looking forward to talking to her about these levels, little did I know it would result in complete disappointment and the worst doctors appointment I have ever been too. I explained to her that it was more than the anxiety she told me it was a reaction to something I was taking and when I asked her about my vitamin levels she simply told me that we live in New England everyone has low Vitamin D and if I want to take a vitamin I can but that probably wouldn’t do anything.

After that horrible appointment my friend got me in with his doctor (Doctor #8) and we started from the beginning. She thought it was both anxiety but something physical as well. We went through my 2 page lists of symptoms she ordered all my blood work to be done again, to see a physiatrist, check with my eye doctor and be tested for sleep apnea.

In the mean time I was a month into my vitamins and it just wasn’t working or the results I was hoping for.

A Turning Point

I had to cut down my hours at work and just still didn’t feel well. When finally someone said to me “ Do you think you have Lyme Disease?” I began doing researching and all of my symptoms fit the description.

During my research I did come across information regarding the ELISA and Western Blot Testing not being accurate and something deep down inside me told me that I was going to have a false negative. So I called the next day went back to the doctors and asked that she do the blood work that day for Lyme. Of course, it came back negative.

I found Functional Medicine Doctor ( Doctor #9) who specialized in Lyme Disease and I booked my appointment. He didn’t have any availability for a couple of weeks but I waited. When I finally met with him I had my 2 pages of notes ready to go. I quickly asked him if I had Lyme Disease and he said it would be hard to tell. But his guess was I had some kind of Tick Borne Illness that has caused a food sensitivity. We booked a full blood panel, Igenex Lyme Disease Test and a food sensitivity test. It took another two weeks to get an appointment to have the lab work done, but I impatiently waited.

While I was waiting for the blood test I met with the psyciatrist (Doctor #10) I figured if I go to a specialist for everything else why not this? We went through the list of symptoms and she informed me that this was more than anxiety and something physical was going on. Finally someone was listening to me!

After waiting almost three weeks for all the testing to come back I got the food sensitivity test back it showed that I had a sensitivity to casein ( the proteins in cows milk) and less of a sensitivity to some foods I was eating on more of a regular basis. I felt like I was finally making progress and moving in the right direction. I woke up the morning of June 16th like so many other days over the last 10 months hoping this would be the day I finally received answers and it was the day!