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DISABILITY RESOURCE CENTER

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Lyme, The Invisible Disease

By Maggie Winter

My name is Maggie and I have chronic or persistent Lyme disease. Lyme disease is a spirochete bacteria, think of syphilis, that is passed from vector born insects, ticks, mosquitos, and spiders. Research is also showing that it may be passed sexually and that it can be passed to an unborn fetus from an infected mother. These vector born insects carry all sort of bacteria, parasites, and co infections, so you are getting all sorts of diseases from one bite. Lyme disease is a multi systemic disease affecting every part of your health in multiple ways. It’s extremely debilitating and unpredictable. One day you may be somewhat functional and the next day you are bedridden and suffering. Because you may look normal on the outside, it’s almost impossible for others to understand the pain you are feeling and how sick you really are. I can tell you first hand, we all become amazing actors.


Many infectious disease specialist and western doctors do not believe in chronic Lyme disease. They call it post Lyme disease, therefore they will not treat you. They may even tell you that you have severe depression. They will look at you as if you are crazy. This happened to me on many occasions. It was mortifying. I went to Mayo Clinic and Brigham and Women’s, reputable facilities and they never ran a Lyme test. Finally when I asked for one to be run, they did the Elisa and western blot. They said it was negative. I had four bands specific to spirochetes that were positive instead of five. According to the CDC, you have to have five bands to be positive. This is absurd!! You have spirochetes in your body from either Lyme or Syphilis, and I don’t have syphilis. The Elisa and Western Blot test are completely unreliable and miss at least 60% of cases. I finally gave up on mainstream medicine and my path led me to a functional doctor that  tested me for Lyme with an IGenX two tier test after multiple doctors diagnosed me with fibromyalgia and chronic fatigue syndrome. I was positive with chronic Lyme disease. I finally got a diagnosis.

I have always been an avid outdoor enthusiast and I have been bitten by multiple ticks all over the country. I’m sure the bacteria along with other viruses laid dormant in my body while my healthy and robust immune system fought to keep me healthy for many years. That time came to an end and my first symptom appeared in my late 30’s. I had severe headaches every single day. I thought I was in peri menopause and it was from a hormonal imbalance. Then I started having vertigo episodes, pain on the bottom of my feet, blurry eyes, distorted depth perception, ringing in my ears, terrible night sweats, muscle and joint pain, twitching through my muscles, my eyelids, and extremities, hair loss, exhaustion, poor cognitive abilities, brain fog, decreased memory and vomiting. I felt like I was going to die and I couldn’t get out of bed for months. I had to find other people to teach my yoga classes and to run my business, Green Tea Yoga. When my mom came out from Missouri to help me, she thought I had cancer. I lost over 20 pounds and I could barely keep down food, stand up without falling, or get out of bed. In my darkest moments I cried for days and I didn’t want to live anymore.

Because Lyme disease has many components to heal and eradicate such as Borrelia itself, parasites, co infections, gut health, candida, heavy metals, toxins in the body, and sensitivities to mold, it effects every single system in your body. It’s like peeling away each layer of the disease such as peeling away the layers of an onion. It is an extremely complex and multi faceted disease. For instance, My thyroid is affected and my adrenals are not functioning well, therefore I feel tired and depleted all of the time. I have systemic candida, all sorts of heavy metals, hormonal imbalances, bartonella, babesia, mycotoxins, and mold in my system. I’m continuing treatment for four years and some days are better than others. I have tried everything from conventional medicine to alternative healing methods. I have to rest a lot, eat very clean, and keep myself away from any negative people or situations or I will completely crash. I truly believe we all have an energetic field and it’s important to keep it healthy and strong. Stress is not good for me and for my energetic field. Most people can handle temporary stress in small quantities but I cannot. I know this now.

It’s a lifestyle change to keep my immune system functioning as well as possible. I support myself with different medicines along with herbs and other alternative treatments such as stem cell infusion and IV ozone. It’s cost me a fortune, but health is everything. It’s a very intensive and consuming job to wake up and fight for your life everyday. I took my good health for granted. Once you lose your health, you realize you’ve lost everything. It’s so hard to regain it. Nothing else matters!

These past few months I’ve had many flare ups with a lot of pain and exhaustion. I’ve been struggling but I learn to hide it from my friends and family. I’m seeing a new doctor who is running numerous tests to hopefully come up with some answers. More layers to un peel. I am forever evolving and learning about myself and this disease. For instance, I realize the winters in the northeast affect me in a terrible way and so I will have to move during those months where it is sunny and warm. I completely crash after every winter and I have to start over again.

Lifestyle changes.....I have to rest more than the average person, I cannot cheat on my diet, I cannot drink alcohol, I cannot stay up late, I cannot be in front of a computer for too long, I need a lot of alone time, I have to pace myself with work, I am learning to say no, and I am a very sensitive and empathic person who has to be surrounded by positive energy. I cannot thrive with negativity or conflict. Im learning to accept. It’s a life lesson. Lyme is about healing not only physically but emotionally and spiritually. I’ve learned a lot and I continue to learn. If you take anything from this, Please be more aware. It’s important to be sensitive and kind to anyone with an invisible disability. You have no idea what that person is going through. 🙏🏼❤️

 

Maggie is a yoga studio owner and yoga teacher in Salem, Massachusetts.

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