My Dance with the Devil
For 24 months, I danced with the devil. This was a dance that I would have never in a million years ever seen myself taking. This devil came in the night, never asking permission to take my health or steal my hopes and dreams for my future. Then one day the music suddenly stopped and the dance was done. The devil was Lyme disease and it was SOT (Supportive Oligonucleotide Therapy) that finally silenced the music.
My story is a physical journey through late stage neurological Lyme disease and a mental journey through the struggles, frustration and fear of profound illness and failed treatments that left me nearly bankrupt with no hope. It is a journey of emotion through loneliness, loss and isolation discovered when those you love most willingly abandon you in the face of chronic illness.
In the fall of my 48th time around the sun, the life I had known and loved was all but over. I began having a severe motion sickness type “weird” feeling in my head and in my eyes along with a disfiguring facial palsy. I had head pressure so severe I thought my head was going to explode. I was unable to maintain my balance, scroll on a computer or on my phone without being made terribly ill. During my worst time, I was essentially bedridden. If I got out of bed I would fall over and had a general sense of non-wellbeing. I was terribly ill, right down to my soul. I had severe brain fog, memory issues, inability to find words that I needed to say and at my worst, the actual inability to speak those words. I would blurt out words and phrases that made absolutely no sense and I would cry for no reason at all. I had no energy compounded with extreme fatigue. I felt as if my body weighed 500 pounds when it came to standing up or getting out of bed. On given days my voice was raspy and the quality of my voice was diminished. I felt as if I had a continual flu, with extreme body ache and a stiff cracking and popping neck.
I finally saw my primary care doctor who ran basic blood work on me and sent me to an ENT for evaluation because of the motion sickness and balance issues. The ENT could find nothing wrong and told me that I had mal de debarquement syndrome based solely only on the fact that I had gone sailing in Spain just before my symptoms started. I researched that syndrome and knew that was not what I had. I was then sent to a neurologist who told me he could find nothing wrong with me other than I had hyperreflexia, which had nothing to do with why I was there. He told me that I had stiff person syndrome. I researched that syndrome and knew there was no way in hell that’s what I had. I knew if I was going to be saved, it was going to be of my own doing as none of these doctors had a clue what was wrong with me. I then spent an agonizing 30 hours or more scrolling on the computer researching my symptoms and found that although I never knew of a tick bite, never had a classic rash and have no idea where I was when I was bitten, my symptoms fit very neatly into the category of late stage neurological Lyme disease. I went back to my PCP and asked him for a Western Blot. He arrogantly and reluctantly ordered the test just to appease me. The test was done at Quest, which is not a well-known lab for diagnosing Lyme. This test was positive on 23 IgM only. My PCP proceeded to tell me that I did not have Lyme disease because I was not CDC positive. My research told me that I was positive by alternate criteria. I argued with him and he told me that I should see a psychiatrist because nothing was wrong with me. I asked him to humor me and refer me to an infectious disease doctor so I could see what they had to say, just in case it was Lyme. He agreed. He tried to make me feel like an idiot but I knew better. The nurse practitioner at that infectious disease center put me on 100mg of Doxycycline twice a day and sent my blood to IGeneX. Those labs came back with a positive IgM on 41 and indeterminate on 31 and 34 with a positive IgG on 41 as well as an IgG positive for Mycoplasma Pneumoniae. It seemed as though the NP found great joy in telling me my labs were negative. I explained to her how the labs were not reliable as they are based on immune response and that my symptoms fit having Lyme disease; all things she should have known. I convinced her to treat me with a higher dose of Doxycycline and she agreed to do so for 1 month. She essentially ignored my CD57 lab result which was 37, indicating chronic Lyme as well as other labs that showed I had massive inflammation throughout my body. I gave up on her too. It was at that time that I went out of the country and bought enough antibiotics to treat my husband and myself for several months. My husband tested positive for Lyme in the same way that I did (not CDC positive) but he did not have symptoms that were severe like mine. His symptoms were mild memory and brain fog related. I felt better while I was on the antibiotics but when I stopped the symptoms returned. I quit taking the antibiotics and then had 2 rounds of adipose derived stem cell transplants over the next 2 months. I was improved for sure but I was still a sick person. After that I started on the Rawls Protocol and was talking over 50 supplements a day with his protocol combined with other supplements that I added myself. I had surrendered to the depressing fact that I was going to live a life of absolute physical and mental hell with this disease. I didn’t want to die but at the same time I didn’t want to live. I was stuck. The thought of living ill for another 35 years was absolute torture for me.
I need to add how absolutely disappointing my friends and family were while I was living this ongoing and debilitating 24 hours a day nightmare. I thank God every day for my husband, Michael, who although he didn’t understand everything that was happening to me, loved and supported me through it all. There were days that he had to literally pick me up to get me out of bed and days he had to do nearly everything for me as well as missed birthdays and ruined holidays. He did all of it graciously, with love and without complaint. And there was my dear friend and co-worker, Dawn who absolutely saw me at my worst every day and cared for me with the greatest concern, understanding and compassion. Michael and Dawn are the only two people who actually saw me daily at my worst and saw the complete devastation that Lyme disease brought to my life. My oldest sister, Debbie cared for me from a far with complete love, as love is all that her heart knows. I’m thankful for her support. I also need to thank a very lovely stranger who has become my dear friend, my online friend, Pam. She found me at the beginning of my journey and reached out to me on healingwell.com. I still stand in amazement that a complete stranger can show so much love to someone whom she has never met. Pam understood everything I had to say and had amazing knowledge that guided me every step of the way on my healing journey. Lastly, I need to thank my newest friend, AJ who came into my life through my Lyme support group. If it weren’t for him, I would have never known about SOT. He was the first one in the group to have it done and his healing has been nothing less than inspirational. With that being said, I will tell you that the majority of others acted with blatant disregard for my well-being and had zero empathy, care or understanding about my struggles or circumstance. Many would ask how I was out of obligation but didn’t care enough to listen to my response. My own sister, after a quick Google search on Lyme, had the nerve to tell me that Lyme disease doesn’t really exist and that I was misdiagnosed. I’m still wondering where she got her medical degree. She hurt me the most. So many people forgot that I was alive and went on with their lives without me. It was all so very hurtful. I am now so much wiser with regard to understanding human nature and the insensitive side of the human spirit.
About seven months ago, I discovered a Lyme disease support group here in Las Vegas. The first night that I attended the group was such an eye opening experience for me. That group of people was seriously the saddest group of people that I had ever seen in my life. I was actually the healthiest one there and it terrified me! People were there with PICC lines hanging out of their arms and central lines in their chests. One lady shared a story of drinking hydrogen peroxide because she felt like she didn’t have enough oxygen in her cells. It was a place of great sadness, despair and of little hope. But it was there that I learned about SOT. The treatment that would ultimately give my life back to me.
At the Lyme support group on the evening of November 15, 2018, it was the first time I had ever heard of SOT. We had a live Skype call with the physician that owns the clinic that administers the SOT. As he explained everything about the treatment to the group, it all made perfect sense to me. I have been a registered nurse for almost 30 years and I have a vast understanding of physiology, biology and medicine. As advanced as this treatment sounded, I understood it and I knew that scientifically it was sound. I knew I was in and nothing was going to stop me from getting that treatment.
The next morning I contacted the clinic and the process was started. The first step was to have blood drawn for Lyme testing. They sent me a lab kit that I took to a local lab and had my blood drawn. I sent the kit directly to MDL, Medical Diagnostic Laboratories, a laboratory located in New Jersey. It took a couple of weeks to get my lab results back and then I had my phone consultation with the clinic. The results from MDL showed that I was not CDC positive but I was positive on IgM 23 with hits on bands 41 and 34 showing up with a lesser intensity which excluded them from being positive. All IgG on the Western Blot were negative but an IgG for Bartonella showed up positive. Thankfully, the clinic and the lab in Greece that creates the synthetic polymer used in SOT, only requires you to test positive based on alternate criteria so my positive result on band 23 was all I needed to make me eligible for SOT. My husband was tested too and his results again, were similar to mine so he qualified too. We then received a different lab kit from the clinic, had the blood drawn locally and sent the blood specimen overnight back to the clinic who then forwarded the sample to Greece. Three weeks later I got a call that our treatment was on its way back to Georgia and we could make an appointment to receive the treatment. It’s important to note that your partner needs to be tested and if positive, be treated as well. Lyme is believed to be sexually transmitted and if you both are not treated you will give Lyme back and forth to each other, negating any positive effects of the treatment. You also cannot have unprotected sex during the course of the 80 day treatment.
My husband and I received our treatments on February 15, 2019. The process was simple. We were in and out in about an hour. The treatment was given through an IV push and we were on our way. We both felt totally normal after the treatment with no side effects. The following Wednesday, February 20, 2019, I had perhaps the worst herx I ever had. I was miserable and down for the count. I felt like I was dying from the flu. I contacted the clinic and was reassured that although herxing to the degree I was herxing was unusual, the treatment was doing exactly what it was meant to do. The herxing lasted for 5 days then I was back to my normal way of not feeling well that I felt before the SOT. On about March 28, 2019, about 6 weeks after my SOT, my health improved greatly and for the next 3-4 weeks everyday was better than the one before. By Easter, April 21, 2019, I felt totally normal like I did before I ever had Lyme disease. I had my life back!
I am at 13 weeks post treatment as I write this and although this experience with Lyme disease has changed me forever, I have returned to feeling like the person I was before this journey with Lyme disease interrupted my plans and nearly stole my life. I have energy and my zest for living has returned. I encourage anyone who is lost in the dark abyss of Lyme disease to seek treatment with SOT. Because of SOT, I no longer dance with the devil. I dance with life and happiness and with hope for the future. I promise you that there is hope for you as well!