“I’m Not Crazy”
I never once thought I was crazy, but others sure did. I felt this vibe from doctors, and both family and friends. One doctor offered me an antidepressant after complaining about the same symptoms he checked me for countless times in the past. He obviously could not provide answers to my symptoms because he was not Lyme Literate. Before a loved one truly understood what I was going through, I was once encouraged to, “Just take a Xanax” and told “Relax, you will be okay.” Thankfully, I did not get discouraged by these comments. I never once stopped believing that I would one day find someone to help me.
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After my surgery and Interstitial Cystitis (IC) diagnosis, I didn’t know where to begin. The urologist told me that my bladder was in really bad shape. The pathology came back as IC with a differentiating diagnosis of carcinoma in situ (early stage of cancer). Luckily, right before my surgery I had all kinds of tests done by a urologist and cancer was ruled out, so I had peace of mind that it was not that. The surgeons and urologist in New York City told me that there was really nothing they could do for my bladder disease. They advised that I should follow a bladder friendly diet and manage my pain. My bladder was so diseased it looked cancerous and that’s all the advice they had for me? I am a very logical person. If my bladder was that diseased, what was causing it?
As sick as I was, I researched this illness. I read as much as I could, which was not easy for me at the time. Reading was so difficult then because of my undiagnosed Lyme and Tick Borne Diseases (TBD). However, I was determined to find answers. Online, I found several stories of women that recovered from this disease. These stories gave me hope. One lady was a Nurse Practitioner with a practice located in Washington, D.C. I made an appointment to talk with her via the telephone.
My lucky day arrived in June of 2012. My life forever changed after that first conversation we had. Before I told her a single thing about myself, she shared with me that 99% of her patients with IC have Lyme and TBD. I explained that I was tested many times for these infections and I was negative. She advised that the tests most doctors use are unreliable.
I consider this person to be an Angel in my life. I have had several experiences in life where I have felt so alone, so down-and-out, and suddenly a person shows up to help me. I believe that these special people are a gift from God and I refer to them as Angels. After all of these years of sickness and wondering if I would ever be okay, I found someone that told me they could help me and that I would be okay. I am forever grateful and thankful to this woman for all that she has done/does to help people like me, who suffer from Lyme and TBD.
After talking with her at great length, I agreed to the tests she recommended. I had routine blood work sent to Labcorp. I had Lyme blood work sent to IGENEX labs for a Western Blot (a reliable lab that reads and reports all of the bands related to Lyme). I also had blood work sent to Fry Labs. This unique lab examines your blood under a microscope and can identify the organisms (infections) living in your blood. This test is also very helpful in identifying biofilm communities. A Biofilm is a slimy and glue-like substance that Lyme and other tick borne diseases generate to shield themselves from antibiotics and the immune system. Often, antibiotic treatment is not effective against cells protected in a biofilm. Identifying them is a good thing because there are supplements to take that break down the biofilm.
When the results of all this new blood work came in, I received my diagnosis of Lyme, Bartonella, and Protomyxzoa Rheumatica (FL 1953), as well as many biofilm communities. I felt so conflicted at this time. I was so happy to finally have answers, but honestly, at the same time, so very sad. I couldn’t believe I actually had something I was tested for many times, but told the results were negative. With continued prayers for strength, I made a conscious effort not to let all of the feelings of sadness and disappointment overwhelm me and interfere with my new journey. I was determined to get my health back.
I began a protocol of antibiotics and antiprotozoal treatments, combined with supplements to breakdown biofilms and supplements to support the immune system and detoxification pathways. I learned that when you treat TBD a Herxheimer reaction can occur. “Herxing” is believed to take place when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. I learned the importance of detoxing and how it helps with herxing and did my best to keep up with my detox protocol. My symptoms greatly improved and within a year I was being weaned off all of the antibiotic medications. Sadly, as I came off the medications, all of my symptoms came back.
My next line of defense were herbal anti-microbials. We also needed to dig deeper to figure out what was going on with my immune system, and why it could not keep these infections under control when the treatment stopped. I couldn’t agree more with Dr. Alyssa when she said the following in Chapter 5 of her story, “Sometimes I wonder what it all means. Lyme Disease…or any disease for that matter. It’s a dis-ease. A state of imbalance, often of body, mind and spirit. Always- eventually- of body.”
From what I have learned, our bodies are like ecosystems. There are lots of good bacteria and bad bacteria, as well as, viruses and many other organisms that are all part of the ecosystem. When the immune system is compromised for some reason, it creates a state of imbalance and the not so good organisms are given a chance to get the upper hand and begin to cause problems. In order to obtain balance, it’s obviously important to treat any infections, but it is equally important to take a good look at the immune system and make sure it is functioning properly.
At this point, I realized my case was not an easy one. I was countless dollars into treatment. All of my appointments with the Nurse Practitioner were out of pocket and so were all of the herbal anti-microbials and supplements that I was taking for immune support and detoxing. I really couldn’t afford to continue on that path for much longer.
With that being said, I needed to find a doctor whose expenses would be accepted by my health insurance. I began to research doctors and I found a LLMD in Pennsylvania that was very well known to have success with difficult cases. This is the LLMD I currently see, and the one who helps me continuously improve my health.
Although she does not accept insurance, I am able to get a small fraction of reimbursement from my insurance company after I meet my out-of-network deductible. When you hear people say they can’t afford to have TBD, it is the truth. Treatment for these diseases often bankrupts families. I often think about how many people are out there suffering, who aren’t as fortunate as I am to find a way to afford the proper treatment.
After a year and a half of treatment, I was thankfully able to work part-time again. The second income that I bring in for our family is how we keep up with our healthcare costs. However, my job situation is very unique, which is another blessing in my life. I am lucky enough to have a boss that is understanding of my health issues. One summer my Lyme flared and I was very sick, running high fevers with arthritis, but I didn’t miss a day of work. My boss permitted me some flexibility though. She agreed to let me work half days until my flare subsided and I felt better. I took Advil which helped with my fevers and got me through my half day. Showing up to work also gave me a feeling that I am not letting this disease define me. I have more good days than bad days at work now. I am thankful that I am healthy enough to show up and get my job done.
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Please check in next week for Chapter 4, which will bring us to the present time. I feel like I am not ready to call it my last chapter because I am still in the process of healing and have so much advocacy work that I hope to do. I have a feeling that I will be excited to blog again as time passes!!
I am very thankful for all the support, encouragement and the time you take to read and follow my story. I believe anything is possible with faith, hard work and persistence. My contribution to the “My Lyme Life” blog is just the beginning of my advocacy work for people suffering with TBD. I am excited to see where this new adventure will lead me.
Wishing you all a wonderful week!
Megan