Allie's Incredible Lyme Journey

Allie William's Lyme disease journey is nothing short of inspirational. She went from experiencing inexplicable symptoms and repeatedly being told that there was nothing wrong with her, to finally receiving a correct diagnosis: Lyme disease. Allie is now undergoing treatment using a PICC Line, and loves her Care+Wear violet PICC Line cover. Learn more about Allie's incredible journey below:

My name is Allie Williams and for four years, I was told I wasn’t sick; I was told that I was stressed; that I shouldn’t work, take classes, and play volleyball; that I should sleep more; that there was nothing wrong with me. I consulted countless specialists in NYC, San Francisco, Memphis, and Michigan; they all gave me the same answer: “Your tests are are normal so I guess there’s nothing wrong.” However, what do you do when you’re 21 and have to ice your joints in the morning before you can walk? What do you do when you take three ice baths a day, prescription painkillers, and a sleep aid just to be able to get through the day? What do you do when you wake up somedays and can’t walk? You keep searching for answers.

Steroid shots in sacroiliac joints. Xanax. Oxycodone. Ice packs. Sports massages. Acupuncture. Naproxen. Non-specific autoimmune disease. Humira. Mobic. Morphine. TMJ. Gluten allergy. Fluoroscopy. IBS. Dicyclomine. Xifaxan. Colonoscopy. Endoscopy. MRIs. CT Scans. Severe lower back pain. Back brace. X-rays. Bone imaging, whole body with Medronate. CT scan pelvis w/o contrast for better image of lesion on coccyx. No answers.

I had given up. I was resigned to feel like this forever. After being misdiagnosed and prescribed Humira, I ended up in the hospital in November of 2014 with what looked like Meningitis. I couldn’t move, open my eyes, eat, or speak. For four days. Looking back, it was a Lyme flare up. However, I had not been diagnosed yet so I carried on, burdened with an illness no one could name.

Luckily, my mom is a warrior. She is a fearless researcher who does not take multiple doctor’s opinions as the only answer. She believed me. After four years of hearing “there’s nothing wrong,” she was fed up. I was coming to terms with feeling like this forever; she threw herself into more research. In August of 2015, my mom called me and suggested I see one more doctor. I said no. I was tired of seeing doctors who gave me no answers or told me my illness was in my head. She pressed me: “I think you have Lyme. If this doctor doesn’t listen, then we can give up the search and you will never see another doctor about this again.” I said yes. A few weeks later, I flew home to Memphis to meet with a doctor who was Lyme literate. During the appointment, I did most of the talking. And the doctor listened. I was amazed. This was the first time a doctor had actually listened to my story, my pain, my ambiguous symptoms. She did not tell me I just needed more sleep. She did not tell me I was crazy. She told me I was sick and that she thought I might have Lyme disease. So, she drew my blood and sent it to IGenex.

On my 23rd birthday, I flew home once again to visit this Lyme specialist to hear about my test results; I was diagnosed with Lyme, Babesia, Anaplasmosis, Mycolpasma and Rocky Mountain Spotted Fever. The blood tests had come back glaringly positive. I had an answer. Over the next year, I would try countless different combinations of oral antibiotics, antimalarials and herbal supplements, all with a limited degree of success.

Lyme and concurring infections manifest themselves differently in every person who is infected. That is just part of the reason it is to hard to diagnose. My symptoms were always ambiguous and changing. Lower back pain so intense that I can’t sit for more than 30 minutes at a time. Sometimes, I can’t sit through a play, dinner with friends, a movie, or class. Lyme affects your entire life. Upper spinal and neck pain so severe I sometimes go from touching the floor with my hands one day to not being able to move the next. Joint pain that keeps me up at night and moves from joint to joint depending on the day. Constant headaches and migraines. Stomach issues: diarrhea every day, painful digestion, and indigestion. Fatigue, bone deep fatigue, that is beyond comprehension and explanation. Weak muscles and no endurance. Most days, walking across the street to buy groceries feels like a marathon. This is #lymelife.

So, here I am now, a little over one year after being diagnosed with Lyme and coinfections and five years into this journey. I now have a PICC line in my left arm and I give myself antibiotics through the line every day, followed by a regimen of oral antibiotics and herbal supplements. I’m not better yet, but I have answers. I have doctors who listen to me and who know how to treat me. I have medicine that will help me get better. And I have a huge support group of family, friends, and a cat who are the real reason I have the hope that I can feel 100% again.   

Living with a PICC line was definitely an adjustment. I went into the operation not even knowing what a PICC line was. That’s my fault; I wish I had researched the procedure, post insertion protocol, and expected limitations of a PICC line. My arm was swollen and sensitive the first few days. I even passed out when my nurse changed my dressing for the first time. But each week it has been less painful! I am able to live a fairly normal life with my PICC line; it’s the antibiotics I’m on that really affect me: extreme fatigue, painful joints, and generally heightening all Lyme symptoms as of right now. Some days, I am even able to go on short runs and do bodyweight lower body workouts to keep myself active.

My friends and family are usually a little surprised when they see the actual PICC line, which is why Care+Wear is so great! My favorite color is the violet PICC line cover. Having something to conceal it while in public is extremely helpful to avoid strangers stares. I’ve used Instagram to follow some really inspiring accounts of people fighting Lyme: from food suggestions (paleo, ketogenic diet, etc) to workouts and yoga poses to do with a PICC line, Instagram is great for connecting with people going through a similar experience.

The toughest thing I have faced with my PICC line is the frustration of being sick. For four years I was sick with an invisible illness and I was forced to continue to live my life as if nothing was wrong. Now, I have a name for my pain and have something physically on my body marking me as “not well.” This is mentally tough, as I have always been one to act okay even when I’m not. However, having the PICC line and forcing myself to dedicate all of my energy to fighting Lyme is how I think I will finally heal. If you are struggling with an invisible illness or you have a PICC line for another reason, I truly believe that there are answers out there for all of us. We can get better.

Much love,

Allie