The Island of Misfit Lyme Patients

One, two, three, four....drops of IV fluid are making their way into my veins. This is my fourth IV.  Last night I woke up around nine full of pent up energy. For the first time in months, I felt my body cry for exercise. In a few seconds, I have my sneakers on and I am making my way around the hotel parking lot. Fragrant Florida air strokes my skin and I am rejoicing in my ability to move. A jubilant feeling that can be fully understood only by someone who spent months confined in pain. I don't know what was in the IV, but whatever that was I will take it any day! I notice my tolerance for the cold improves. I cannot wait to continue my therapy.

Friday finds me pumped up and ready to go. I have not felt a surge of energy like this for years. I am on fifteen supplements, two prescription medications, and two IVs formulated just for me according to my lab results. Most of us have experienced a huge improvement in our symptoms. The routine at Sponaugle for most patients consists of a series of detox IVs, followed by a microbial kill protocol, repeat as necessary. It is an intricate process of addressing genetics, brain chemistry, hormones, all organs, the intestinal function and flora, microbial load, exercise and nutrition, combined with willingness to cooperate, grit, and hope for the future.

Everyone in the IV room is signing a card for a student in a catholic seminary who gets to leave today. There is another patient in his twenties who got his discharge date for April 25th. In his tight black pants, tight gray low V-neck shirt, and some sort of a dangling natural necklace he thinks he is oh-so-H*O*T! I just hide my smile and think about my husband. Around hundred pounds of weight at five foot six with a spine disfigured from steroids he only made it through life by God's grace and a sheer power of will to live. There were times when I would come home only to find him in tears from never ceasing pain and air hunger. I would just hold him for hours and pray silently for the pain to leave. There was nothing I could do or say. My embrace brought the little comfort I could give. I never compared his very frail frame to other men. I loved him for this unceasing hope he had and the fight he put out for every breath he took. I wished I could take his suffering and his pain away. But I couldn't.

A young girl, pale and weak, slumps into a chair and covers herself with a blanket. She has not been able to get IVs all week. She has not been well enough and there is no improvement regardless of what they try. The prognosis is unclear and at this point they don't know if they can help. I wish I could just hold her in my arms like I did to my husband and comfort her in any way I can. I wish I could take away her suffering and her pain. But I can't. Watching people suffer is so hard…

My phone rings and I don't recognize the number.

"Hi, you don't know me. I am a Sponaugle patient and I heard you need a ride to an appointment. I got your number from so-and-so."

I am in shock. She brings me to my appointment, takes me to a grocery store, and the pharmacy. The next day she brings me homemade soup and a blueberry smoothie.

"Hi, this is so-and-so. I just wanted to make sure you were back at the hotel and not stranded somewhere. If you need to go anywhere just let me know and I will take you!"

Everyone is pulling together to get through this horrible, complicated disease. Misdiagnosed, mistreated, and misjudged, this is our last stop. We all connect and support each other in any way we can. Everyone offers whatever they have, know, and can do to help out. I have been here for a week and have a phone number for almost every patient in the hotel. Shared suffering creates a platform for closeness that would be impossible outside of this context. People talk about their diagnoses, worries, and intimate details of their lives they would entrust with only the closest of friends. It is like the Island of Misfit Lyme Patients. It is so good to be here.

"You look great!" I hear that all the time. But I don't feel great. I can pull off a great act for a period of time and when out of public eye I crash and burn. Nobody here tells me I look great. They know better than that. We all have been putting on this show for the sake of others who do not see what happens when the door closes behind us. I don't have to explain that to anyone here. We have all done it for years. That is why we love being on the Island of Misfit Lyme Patients. It is SO good to be here!