Welcome back for Part 2 of my healing journey. Thank you for taking the time to be here and witness my story. It means a lot to me to be able to share this with you. If you haven’t read My Lyme Story | Healing + Overcoming Part 1 I suggest you read it before reading this post. It will make a lot more sense. :)
Between seeing the doctor whose office I stomped out of, and my current Lyme literate doctor, I saw another functional medicine doctor in the Boston area. She sent me to get bloodwork for food sensitivities (which was a waste of time but I won’t get into it today), leaky gut, Lyme, and a few other major diseases. I tested positive for leaky gut and was put on this horrid expensive powder to drink daily for 4 months. I spent $200 on a gross powdered supplement, had one sip and poured it down the drain. Mind you I have a pretty high tolerance for foods that taste “different”. Let’s just say the taste of health food has come a long way, but this? This was next level disgusting. Let's just say something just felt off about this doctor and their recommendations, and I had to keep moving along.
The biggest news here is that I tested NEGATIVE for Lyme. I had heard about false negatives and was weary. (1) An article on LymeDisease.org states that the standard test for Lyme disease will miss many cases of disease-causing Borrelia. The Lyme disease test with the highest sensitivity is the Western blot alone, with a 62.4% accuracy and the accuracy for another popular test called ELISA is 62.3%. It’s no wonder so many of us get a negative reading on our Lyme tests! The CDC is way behind on this and Lyme organizations are fighting hard to improve standardized testing to be more accurate. I know a lot of people who have tested negative through their primary doctor and went on to testing positive through a Lyme literate doctor. As mentioned in Part I, most traditional doctors are less informed on Lyme disease, and I urge you to be proactive with your health and keep searching for the right professionals and protocols to help you.
My Lyme Protocol
I began treatment for Lyme in late August of 2018. I can’t tell you how relieved I was to finally be given a diagnosis that made sense to me. All my seemingly random symptoms pointed to Lyme and Epstein-Barr (EBV). I was elated, I was deflated, I was excited, and I was furious. I couldn’t believe no doctor had ever thought to test me for Lyme (!!!), which is not only extremely prevalent in the Northeast but all over the country and world. The healthcare system has a long way to go, in so many ways, but we won’t get into that. What I do want you to understand is that you are your biggest health advocate. If something feels off in your body and your doctor is either ignoring your symptoms or misdiagnosing you please do your own research. Look for online communities discussing the issue at hand, read as many articles and research papers as you can.
My chronic Lyme treatment (which overlapped with treating Epstein-Barr) consisted of a modified Cowden protocol developed by Dr. Lee Cowden and about 10-15 supplements to help support my immune system, balance my hormones, heal my leaky gut (L-glutamine capsules vs. the gross powder my other doctor prescribed) and help my anxiety. I won’t go into full detail about exactly what supplements I was taking because a) they are specially formulated by my doctor and can’t be found online, and b) this isn’t meant to be a definitive guide to healing Lyme. Like I said, Lyme manifests differently in each person and therefore needs to be treated differently.
September through November were really difficult months for me. I stopped taking on new clients and allowed myself to fully give into my healing process. I wasn’t able to fully coach my clients to wellness because of the place I was in. And by the way Lyme is not contagious for those of you wondering. It was ugly at times and manageable at others. When beginning any Lyme treatment there is what’s called a herxheimer reaction or die-off stage. (2) In a die-off reaction, there is a release of endotoxins, proteins, and oxidizing agents that results in an increase in inflammatory cytokines such as tumor necrosis factor alpha, interleukin-6, and interleukin-8. The symptoms of a die-off reaction are generally a worsening of the underlying symptoms of Lyme disease and its associated infections. A majority of Lyme disease symptoms are actually excess inflammatory cytokine symptoms. So in a die-off reaction there is a worsening of many Lyme disease symptoms including: fatigue, brain-fog, muscle and nerve pain, chills and sweats, and/or memory and thinking. There were some days where I couldn’t get up off the couch - days where doing the dishes felt like climbing Mount Everest. The couch was my BFF and I triumphantly finished all 9 seasons of The Office. I felt bad for myself, I thought I was weak, incapable of doing the smallest tasks and helping out around the house. I was home all day anyway, how could I not contribute in some way by doing the laundry, cleaning or walking the dog? Luckily I am blessed with an angel of a husband that was completely supportive and understanding of what I was going through. He would come home from work at 8pm and go straight to washing the dishes while I ate the dinner he brought home for us. I couldn’t have done it without his support and I am forever grateful for my Arthur!
Since I was diagnosed with chronic and acute Lyme I had the option of treating the acute Lyme with antibiotics. It took me a month to finally give in to “evil antibiotics” and at this point, I’m really glad I did. I was resistant to antibiotics. When misused or overused antibiotics are known to destroy the gut since they kill not only the bad bacteria but also the good. I took quite a few rounds of antibiotics in my childhood which I believe contributed to my underlying gut issues. Why did doctors not warn us about the side effects of antibiotic overuse or at least educate us on the importance of taking strong probiotics during antibiotic treatment? I digress. After doing research and speaking with my doctor antibiotics seemed like the best route so I was put on a high dose of doxycycline for 3 weeks in November along with a 30 billion CFU probiotic. During those 3 weeks I had nightly panic attacks that were so debilitating that I couldn’t make any plans past 6pm. The herxheimer reaction was in full effect. As painful as the die-off was I had to remind myself that this was a good thing, that the treatment was working and things would let up soon. I was right and I was so happy I was right. I vastly improved during my 3rd week on antibiotics. I was in Florida at the time so I attribute some of the ease I began to feel to the sunshine and warm weather. I still had pain throughout my body but the panic attacks went from daily occurrences to 3x a week. This was a big win for me.
Are you still with me? Now you know why I had to break my story into so many parts! Stay tuned for Part 3 where we will dive into the final stage of my story and how I am doing present day with my Lyme treatment. I will offer tips and suggestions for anyone struggling with Lyme disease and how you might begin your own path to healing to bring you to where I am today with my healing and progress.
Click here to read the rest of my story: My Lyme Story | Healing + Overcoming Part 3
Thank you for reading and please feel free to reach out to me if you have any questions. So many of us struggle with an illness and I completely sympathize with you. There are countless routes of treatment out there and I can honestly say that diet and lifestyle saved me. It’s so so important to pay attention to the food that you’re putting into your body, staying on a low inflammation diet, and giving your body the right type of movement and lifestyle to be in a state of healing. If you are looking for healing support from a health coach with quite the journey of her own schedule a free phone consultation here.
Services I offer:
Customized meal planning
Ayurvedic cleansing (no starvation here!)
Prepared meal delivery in the Boston Area
I can’t wait to talk to you!