I wanted to share when and how my health problems started. Brace yourself, this is a long one. To the best of my ability, so here we go:
My big "autoimmune" blow up happened towards the end of the summer of 2008.
To back up a little before that I would say my issues started within the last 1-2 years (or maybe a little more) of undergraduate school. I played volleyball in college and had a lot of pains that I contributed to "athletic injuries" or "overuse" pain. Normal for a college athlete right? Well looking back I believe I had more going on than normal sports related pain, at least towards my last years. I just thought I was getting old rounding out my early 20's and all!
More noticeable/note worthy things that happened were some random attacks of "air hunger." A feeling that you can't get a breath in and like your lungs are closed off. Doctors called it exercise induced asthma, gave me an inhailer (which did nothing) and couldn't find anything wrong with my lungs or heart. It would happen very randomly, one day I was out running my teammates doing suicides (just kidding guys if any of y'all are reading this!) the next day I couldn't breathe. Along the same lines a few times in the middle of games or practice my face would go white, I would struggle to catch any breath and it felt like I lost circulation to my feet and hands. Then I would get really anxious that I was going to pass out (but never did thank goodness).
I have always loved naps. But my last year of undergrad I basically needed one to get through the day. An overwhelming need to lay down. At least that is when it started.
So then to fast forward a bit, I graduated in December of 2007, started pre-requisites for Physical Therapy school, worked as a Physical Therapy tech and continued running my swim lesson business summer of 2008.
The big blow up: (starting end of summer 2008)
Ok on to the definitive changing point. It started with sore elbows when I layed on my stomach studying, it made me change positions. Then one knuckle got swollen and painful like I just jammed it blocking playing volleyball. Then two, then 3 then all. It fairly quickly progressed to every joint on both sides of my body from elbows down and knees down being swollen, stiff and extremely painful. I couldn't workout anymore, I could hardly walk (I was limping). I had to walk sideways down the stairs in the AM. Couldn't open a jar, water bottle and just turning the door knob hurt. I had flu-like fatigue and weakness and more air hunger issues. Regular naps were again a must. Even the bridge of my nose got inflamed, I could see it in my daily sight, and was tender and pink. I also got a little rash on the inner corners of my eyes. A bunch of weird stuff was going on!
I went to my doctor finally (I am a little stubborn and didn't want someone telling me I couldn't be a Physical Therapist one day). He ran a lot of tests. The only things that showed up were elevated systemic inflammation markers (duh) SED rate and CRP. I started prednisone and that helped right away. I took that for a while but after I tapered down low dose and off of it, I was still having issues. I went to a Rheumatologist that did a lot more test and was a bit stooped by me. Incidentally I had an atypical positive P-ANCA blood test (atypical basically means not a strong conclusive positive). So he diagnosed me with a type of small vessel ANCA associated Vasculitis. They are 3 that are closely related but have different symptoms and presentations. Since I didn't fit any profiles nicely he kept changing what diagnosis he called it and seemed uninterested in my less severe but still persistent problems I still complained of. Regardless I was taking methotrexate and prednisone for a while and was still making progress. I got off prednisone after maybe close to a year on a low dose (not sure exactly how long) and continued with methotrexate. By then I was able to do what I wanted to do and managed my symptoms with lots of NSAIDS.
When I got into PT school at UT Southwestern Medical Center at Dallas (which is also a top ranked amazing medical school) I went to a Rhematologost there since they have top leading doctors. That doctor took one brief look at me and said I think your fine and don't have the ANCA associated Vasculitis. The only thing he could find in my bloodwork was a positive ANA (non-specific marker for something autoimmune going on in the body). He took me off methotrexate. I continued to have pain of a non-orthopedic pattern (which drives a PT student crazy trying to self diagnose) and started having tingling/burning and tarsal tunnel like symptoms. I would lose circulation and have numbness and swelling in hands and feet working out, with occasional difficulty breathing like my air hunger issues. The pain would get so bad I'd sometimes have to take pain medicine.
So I went back searching for more answers. I wanted to make sure I didn't have any systemic inflammation again, but again all tests were negative. I went to an excellent orthopedic surgeon to have my knees evaluated. MRI's and scanning by that MD and a handful of skilled PT's were without explanations. By then I was also already trying to self treat things like my knee pain with some exercises/things to help.
The next few years were filled with more NSAIDs, worsening burning of my feet through clinical rotations and starting my career, and worsening and progressive joint pains. By then I started having more difficulty critically thinking by the end of the day, and short term memory was difficult at times.
I've been to 2 Neurologists after my numbness/tingling/burning that was going on in my feet and up my legs started in my hands. My nerve symptoms are always in my hands and feet, then as they get worse (varying by time of day or if I'm having a good or bad day) it moves closer to my trunk (or up my arms and legs). The Neurologists concluded I have normal sensory and motor nerve function (a very good thing) but by clinical presentation a small fiber neuropathy. That means it affects the fibers that control pain and temperature. So it hurts (I could have told them that) and I don't differentiate hot and cold as well with my hands and feet. I was told it's the best prognostic kind to have (meaning better chance of getting better one day, hopefully) but most painful kind.
Around last summer (2013) my symptoms were starting to bother me so much it was getting harder and harder to do my job. Which by the way I LOVE, worked hard for, and never want to give up.
I went to a 3rd Rheumatologist who put me back on medicine I took before (methotrexate/prednisone combo). I maybe got a tiny bit of help from prednisone but overall got no better and continued to worsen. By then it was safe to say I had done lots of homework. With my medical background I had some knowledge of autoimmune conditions but I studied more. I tried to find anything and everything out there that could fit my complex symptoms and history. I went to a functional medicine doctor and got food allergy tested, stool analysis done (yes I sent my poop in the mail, don't judge me), and learned more about healing my gut and stomach issues with him and through functional medicine. I was introduced to functional medicine in PT school and hope more and more doctors practice under more of their philosophy. They look for the root cause of illness and problems instead of giving pills for everything (basically masking the symptoms and not resolving underlying problems). I'm getting side tracked, here's the website if you want to check it out:
https://www.functionalmedicine.org
Back to trying to figure out what was going on. The Rheumatologist and I concluded I never had the ANCA associated vasculitis and didn't know what was really wrong. She recommended more Rhuematology specialists to see. (One she recommended was going to UTSW which is already done by the way.
I decided it was time I listened to my signs.
I had the opportunity to meet 2 remarkable people in my past that now looking back, changed my life. They were living with Lyme disease. I listened with empathy and interest in learning more about this disease, that I admittedly was unfamiliar with at the time, as they shared their symptoms and struggles. By the second person I met came along, the symptoms they expressed having really started sounding familiar.
Fast forward to this winter when I started as a patient getting my own Physical Therapy from an incredibly talented PT in my work Outpatient system (but at a different clinic) to work on my multiple issues. He dug deep into my medical
history and one of the first things he asked me after hearing it all was had I ever thought of Lyme disease. I remembered the things I had learned from the 2 people I had met before with the disease and started doing more of my own digging. What I found was Lyme disease was the one thing that fit my long history of inconclusive and varying symptoms over time. BUT the more I learned about it honestly the more I hoped that wasn't what was going on. And for a little longer I used excuses that I read about that I have learned to be false through my digging and homework over time like "Lyme doesn't exist in Texas" or "it's extremely rare so I likely don't have it" or "you can only get it from a tick" or "you have to remember being bit my a tick" or "you only get it if you have a bullseye rash."
Eventually I ran out of specialists to see, and next on my list was a Lyme Literate Medical Doctor(LLMD). What that means is this Physician is trained in the extremely complex diagnosis and treatment of Lyme disease and associated co-infections. You can get other diseases transmitted with Lyme (called co-infections) that are as bad or worse than just lyme alone. I will talk about that more later, I have rambled enough and my thumbs are getting sore! I went to my LLMD and after 2 hours of going through my history was told it looks like I have Lyme and maybe 1 or 2 co-infections. The testing for Lyme is so unreliable and the accuracy of the testing sucks (I'll talk about that more another time too). But because the accuracy sucks, Lyme disease should be a clinical diagnosis, meaning a LLMD experienced and well versed with the complexity of the disease makes a decision after evaluating all the data, not one in-accurate test deciding if you have the disease. When I first went I was taking a short dose of prednisone because I was so desperate for help to make it through my day. For that reason I was immune supressed and testing at that time would certainly be un-reliable until a later time when the Meds were out of my system.
So I first worked on my gut health to prepare for antibiotics. I got hard core with my diet and started a lot of supplements and probiotics. And I studied more about Lyme. I started finding people's blogs where they talked about their journey, issues and struggles with the disease. Which by the way can be so severe it can cause death, being confound to a wheelchair, cause seizures and much more. YIKES. More on that later too. 5 weeks later I went back and started on antibiotics. Because Lyme can change shape/form to hide and protect itself from being killed/harmed/destroyed in the body to efficiently treat or kill off the Lyme you have to treat each form the bacteria can take (spirochete, L-form, and cyst, although some new research shows one is more like round but basic concept applies). If you only take one pill designed to kill the spirochete, the Lyme conforms to one of the other 2 forms to survive in the body. Treat all 3 forms and there is no where to hide. That's the idea anyway. I started my treatment on Sunday April 13th and worked up over 4 weeks to the 3 anti-biotic treatment I am currently taking. I am now on my 8th week of treatment and already seeing a big difference in my energy level. I have slowly started tolerating return to some exercising and other small (but big deal to me) things here and there, (like chasing my nephews around briefly) but still resting and making good choices so I don't pay for it later. I altered my work hours for a little while to give myself more time to get much needed rest. At first I got much worse on the medicine. MUCH worse. But I persevered. The fact that things got worse, and now are improving is a very good indication that my hunch and clues from God that I had Lyme disease were correct.
Wednesday I go back for another follow up visit with my LLMD. We will finally do testing. After starting the medicine, we had to wait about a month after I first started getting worse from the die off (called a herx reaction) for the immune system to create the antibodies it produces when fighting off the disease. Because the medicine starts the killing cascade if you will, the immune system creates antibodies or targeted killers specific for Lyme, all over again. It takes about a month for those to be able to show up in the specific Lyme test for the antibodies. This is the best chance at a test being positive if I have the disease. (I am getting and Igenex western blot test done for those familiar with what that means).
I will be entirely honest. I don't entirely 100% know that I have lyme. All evidence so far points to it. A part of me really hopes I don't (I wouldn't wish the disease on anyone). And another part of me needs concrete evidence that says yes I for sure have it. Regardless I am anxious to see the results when they come back. I will keep you all posted when I know.
If your still awake, thank you for taking the time to read through my looong post. Please feel free to ask any questions if you have any! Thanks for all the support, love and prayers. Seriously some of the kind responses I have gotten really help me get through the hard days.
I will close with saying I believe God placed certain remarkable people and paths in my life to point me in the direction I am in now (and hey I'm improving so something is working!). I encourage you all to be better than I was at listening to God's signs of where your next path should go, regardless of what area of your life it pertains to. Listen to God speaking to you! (A great message at my church this last week by the way about this)
Xo Tara
"Get rid of all the filth and evil in your lives, and humbly accept the message God has planted in your hearts, for it is strong enough to save your soul"
James 1:21
