I don’t know what it’s like to be sick for your entire life. That’s just not something I have gone through, and therefore I will NEVER say, “I know just how that feels.” Gabriella of Beyond The Bite was sick for almost half her life, until finally being diagnosed with Chronic Lyme Disease. An autoimmune disease hardly recognized in modern medicine, it took years of frustration before receiving a diagnosis. With the help of infusions, medications, and even surgery; she began the road back to health. But while lying in bed for eight months, this teenager got online and decided she was going to find out what was wrong with her. Switching to a Paleo diet, and learning as much about this disease as possible has helped Gabriella on her road to recovery. Keep reading for her full story, and be sure to follow her blog for more information on Lyme disease and her road to recovery. Thanks for sharing your story Gabriella! -Kara
You’re only 18 years old. Have you been sick your whole life, or when did you start having problems?
I was actually a pretty healthy kid until the age of 10. That’s when I started feeling a little…”blah.” By the time I was twelve, I started experiencing symptoms I never had as a child: sinus infections, joint pain, and muscle pain. Thing got worse and worse, but we couldn’t figure out why I was having these issues. In 2011, I went for a run outside. When I came back in, I just hit a brick wall. I collapsed into a state of no energy and brain fog. I couldn’t think, my blood pressure dropped, and I couldn’t stand up without passing out. Very rarely in conventional medicine do doctors believe in Lyme disease, particularly Chronic Lyme Disease. When we eventually got a diagnosis, I was told I had late stage neurological Lyme disease. Lyme disease begins as an infection, and we believe I was infected when I was just 7 years old. We believe a tick infected me, but I never showed any signs of an infection. Had I shown any symptoms, I would have been treated with antibiotics. Instead, the infection continued to run through my body for years without me knowing it.
What exactly is Lyme disease?
Lyme disease is a bacterial infection, typically derived from a tick (though there are a growing number of insects and spiders which carry the bacteria). If you get bitten by a “host,” such as a tick, the bacteria enters your blood stream. From there, the bacteria spreads. We call the bacteria “bugs,” because it acts like a terrible little genius in your blood stream. It likes to hide in lymph nodes and cross the blood brain barrier, causing neurological damage. People can literally become paralyzed from this disease.
Not only is Lyme disease not widely recognized, but the blood tests given to detect the disease are often faulty. Blood tests may only test for one strand of bacteria, when really there are hundreds of strands. There are many false positives and false negatives in typical testing. You have to find a doctor outside the realm of conventional medicine to get a diagnosis.
If Lyme disease is so hard to detect, how were you diagnosed?
We have family friends whose daughter had Chronic Lyme Disease. Our paths were very similar, so her mom told us the different steps to take. She told us the first thing I needed to do was get treatment. I waited six months for an appointment with a neurologist. My symptoms were progressively getting worse, to the point where I was bedridden. Eventually my neurologist started treating the nerve aspect, but many other problems had arisen from me being infected for so long. I started seeing a functional doctor in New York to handle my other symptoms.
When you have chronic Lyme, there is no quick fix. It’s not like other diseases where it’s, “OK, this is your diagnosis, this is your treatment, and this is how you will get better.” Lyme disease goes to different parts of your body and hides. I had a compressed celiac artery, preventing blood flow to my digestive organs. Multiple spinal tests ultimately determined I had extensive nerve damage, one of which was autonomic neuropathy. Therefore, regular body functions such as blood pressure, sweating, etc. were either dysfunctional or not happening at all. I used to literally faint every time I would try to stand up because my blood pressure was so low.
What steps did you take in your road to recovery?
When I was bedridden, I was running back and forth from New York for doctor’s appointments. I was so, “out of it” during that time. People used to ask me if I got bored lying in bed for eight months, but I was so sick the time just kind of passed. My treatments started with an IVIG infusion, which is an IV treatment of immunoglobulins (i.e. purified blood plasma) used to repair nerve damage. The IV treatments were meant to literally repair the membranes of my cells. I did the treatments for two six-month intervals, which helped with my brain fog. Now, I’m able to actually do school work – which is a huge accomplishment. During the IV treatments, I was also treated for SIBO, but didn’t see much progress. Eventually I had surgery to “release” my compressed celiac artery, which had been kinked shut from my diaphragm dropping on it. The reasons for this are unknown; however, it is suspected to be one of the multiple effects caused by untreated Lyme. Surgery was the only option, due to all blood flow being cut off from my stomach and surrounding digestive organs. This caused me to drop to a weight of 83 lbs (Not sure if this is TMI, but thought I’d explain). After my surgery, I was finally able to eat again. How did you make the connection between Paleo and Lyme disease?
Before I hit my brick wall in 2011, I was having GI issues including constipation and stomach pain. My mom has always been into good, organic food and made homemade meals every day. Making the connection of, “Ok there must be foods that bother me,” was not a hard one. I cut soy, sugar, gluten, and dairy out of my diet. Once I became bed ridden, I started doing further research online. I wanted to learn more about my body, because everyone around me was saying, “I don’t know what’s wrong with you.”
I don’t know when I came across Paleo, but it was definitely when it was still new. I feel as though as Paleo as evolved and grown, I have grown with it. When I was diagnosed as having really bad SIBO (Small Intestinal Bacterial Overgrowth), I learned that a no-grain, no-dairy diet was the best way to manage the infection and overgrowth. Next, I found the low-FODMAP approach to eating. I was battling parasites and SIBO at the same time, eating a diet of just meat and vegetables. Finally, in an attempt to gain all my weight back post-surgery, I followed a ketogenic approach. I guess I found Paleo through trying to heal myself. Ever since then, I’ve just been learning more and more.
Do you think Paleo has helped you in your road to recovery?
Paleo certainly has not healed me, but it has allowed me to take control of as much of my illness, and the daily symptoms it brings, as much as I possibly can. Lyme disease is resistant. It causes an autoimmune response and eventually your body just stops fighting. The summer of 2012 is when I really hit it hard with Paleo; I mean I really wanted to get better. I don’t see my neurological doctor anymore, but full health is still far away. Everything with Lyme disease was a waiting game. It’s still a waiting game. Without Paleo I truly wouldn’t be able to get up everyday, as eating anything outside “Paleo” sends my body into a state of extreme inflammation and pain. It allowed me to gain some of my weight back, but it was not until I began my most recent IV and oral treatment (called the PK Protocol), that I was able to regain the full amount. Overall, I cannot see myself making it this far in my battle against Chronic Lyme without following a Paleo lifestyle.
When did you begin blogging?
I started my blog in May of 2014. When I started my blog, I wanted to spread the word about Lyme disease. There are so many people out there who are being ignored by the medical community. I’ve found a lot of people through my blog. It’s really encouraging that as sick as we may be, we’re still really supportive of each other. I try to post 4-5 times a week, usually in a rotation of recipes and health articles. I’m always in the kitchen creating things. After recovering from being bedridden, it was one thing I could do, even though I was still lacking a lot of energy. It’s a place where I can be creative, and I’ve enjoyed learning the culinary aspect of blogging.
Where do you see yourself in the next few years?
I missed a few years of school, but once I got the IV infusions I was able to finish at home. I graduated high school last year, and am now studying organic chemistry and completed the Mark Sisson course on my own. Through all of this, I have found my love for science and the human body. I’m not sure what I want to major in [in college], but I do know it will be something medical. I want to become a functional medical doctor myself. I have a strong love of food and cooking, so it would be great to combine the three. Once I’m well enough to go to school full-time, I’m hoping to have it figured out.
Are there some days where you are just so…tired of this process?
I’m not going to lie, it hasn’t been easy. Healing has become normal life, although I try to remind myself it’s not normal. I’m a Christian so I believe God can help me through anything, and my family is really encouraging. It’s not like I go around saying, “There’s always someone out there who is worse off,” but my blog has helped me be aware that everyone is dealing with something. Maybe they’re not sick, but they might have another trial in their life. I try to put things into perspective: I may not have great health, but I do have a great family. Other individuals may be in perfect health, but they may not live in a supportive home.
What would you like to tell anyone who is going through a similar situation?
I always tell people to take the initiative. Doctors can be helpful, but ultimately this is about you and your body. There is a lot of power in facing your situation head-on. Healing is a process. Through this process, even if you don’t find out what’s wrong with you, there is always hope. Take the time to learn about your body and learn to listen what it’s telling you. Doctors can diagnose a disease, but they can’t tell you what your body is saying in everyday life. A big part of my illness was learning to be my own advocate for my health. This has come into play with my blog, because I’m able to get the word out. Lyme disease is not a recognized disease. If I it was, maybe things would be different. Be your own advocate. If you don’t know what is wrong with you, take a stand and say, “I can figure this out. I’m going to figure this out.”
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