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When My Doctors Couldn’t Diagnose Me, I Found Answers for Myself

Masha Goins is an Instagram Biz Coach, and the Founder of Mom to Momfluencer™. She teaches mompreneurs how to grow and monetize their brand on Instagrams with joy and ease. You can find her @mashagoins and @momtomomfluencer.

We always assume that doctors and the medical community know everything, but nobody knows your body better or cares as much about your health as you do. I learned this when I suffered for nearly four years while my Lyme disease went undiagnosed and misdiagnosed. Doctors were happy to look at my test results and have a quick visit, and then hand down a diagnosis and be done with me. Each time, they were wrong.

In 2013, after the birth of my first daughter, we moved from Tribeca to Connecticut. After I stopped breastfeeding, I started having all sorts of health issues. First came the allergies. We live in the forest — like in a treehouse surrounded by trees — and I had a severe reaction to my new environment: fatigue, brain fog, muscle and joint pain, forgetfulness, and memory issues. I didn’t have allergies before, but I learned that your immune system can get overwhelmed by certain triggers you’re exposed to throughout your life. You reach a certain threshold and the cup floweth over. So, I started a five-year immunotherapy program to build up my body’s acceptance and resistance to the allergens causing my problems. I also started taking daily allergy medications, and some symptoms like the itchy eyes and ears and congestion improved. But others, like the tiredness and muscle pain, didn’t.

When I went to see my general practitioner, I remember telling him that I didn’t understand why I was so exhausted even after a night of eight hours of uninterrupted sleep. And you know what he said? “You have two young kids, of course you’re tired.” Obviously, this was not helpful. When I went back because I felt like something was still wrong, he said, “Well, you should just work out five days a week for an hour a day and then come back in a month.” I was like, “Really? That’s your advice?” It was a complete dismissal of how I felt and what I was going through. Exercise improves energy levels, everybody knows that. But I’m in shape; I was exercising at the time — granted, not five hours a week — and I just started laughing when he said that. As a working mom with two little kids there was no way. I don’t even have an hour to take a shower! This was obviously not the right doctor for me, so my hunt for answers that would actually help began.

One of the most important parts of this journey back to health has been realizing that I am my own most important advocate.

Next up, I saw a rheumatologist who said he thought I had fibromyalgia, a chronic condition characterized by muscle pain. He prescribed nerve pain medication. Within a week, I was suicidal. The medicine made me so depressed, and it didn’t help my body pain either. Also, based on the extensive research I had done, I was not convinced I had fibromyalgia. I went back to him and said, “I can’t take that medication anymore.” He examined me again and this time diagnosed me with rheumatoid arthritis. I could barely open the fridge because my hands were hurting so much and my fingers were swelling, so this diagnosis made more sense. But I still didn’t fully accept it.

Around the same time, I had dinner with a friend who started talking about his own health problems and my jaw dropped. He was experiencing the exact same symptoms and had been diagnosed with Lyme disease.

I had been tested several times for Lyme, but the results always came back negative. My friend referred me to his doctor, who explained that the regular screening test the CDC uses is highly inaccurate, and most doctors never follow up with the second step if their patients get a negative result on the first. She did tons of bloodwork and there it was, clear as day: I had an active Lyme infection and walking pneumonia. She said, “No wonder you feel awful!” I couldn’t believe I’d gone to all these doctors and the answer was sitting there in my blood all along.

Lyme is the number one fastest growing infectious disease in the United States, and you don’t have to be living in the Connecticut forest to get it. But there’s not enough known about it. Doctors aren’t properly trained in this disease, so it’s often misdiagnosed. I never even saw a tick or a bullseye on my skin that is the typical reaction to a bite.

My doctor put me on two months of antibiotics. I also started an herbal protocol and an alkaline diet. The idea is that we consume a lot of acidic foods, which create the perfect environment for lime bacteria, so an alkaline diet of mostly greens helps. I had to give up sugar, dairy, and coffee — it was a big adjustment, but I tried my best to stick to it. I did the alkaline diet for a month, and I’m still mostly sugar and dairy free.

It took about four years from my first symptom to my diagnosis in 2020. During that time, I was cut off from that clarity — that feeling of knowing what is going on in your body — that is power. The average person goes to eight different doctors before Lyme is diagnosed, and some people never get a diagnosis or treatment. I’ve started speaking out about Lyme and my experience because, once you know, there are things you can do to feel better and improve your health. 

I feel much better now, but it’s still a process. Being a working mom with two young kids makes it difficult to prioritize self-care like sleep and diet. But my husband is a super active and amazing co-parent, and an equal partner in the domestic realm, which helps. At first, it was hard for him to understand why I felt bad all the time because I didn’t look bad. Invisible illnesses are really hard for people to understand. So, he was also shocked when I finally received my positive results.

I didn’t give up. I didn’t accept a diagnosis that I didn’t feel was accurate. I did a lot of research and googling and learned to listen to my intuition. One of the most important parts of this journey back to health has been realizing that I am my own most important advocate.

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