lyme disease: my story

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I used to think this whole Lyme thing would go like so: 1) diagnosis 2) quietly get better 3) get back to life as scheduled. How naive I was!

I didn’t want to let people into such a private, and frankly, the very worst part of my life. I wanted to heal quickly, return to life as scheduled, and ride off into the Manhattan sunset. However, in the past few months, I’ve seen the beauty and extreme necessity of people sharing their Lyme stories. I’ve realized I would be selfish if I didn’t share my story about this whole process. The real story. An honest story of extreme pain, loss, redemption, yet indescribable hope– all at the same time. So, here goes:

how it all started

It all started a year ago when I knew something was “off” health-wise. I was once able to work 50-60 hour weeks, work out 5x a week, and hang out with friends every day– no problem. But, soon, I couldn’t stay awake past 1pm, couldn’t walk in a straight line, and I started collapsing out of the blue: anywhere from planes, whole foods, MRI rooms…  No one knew what was happening, and time was of the essence. Another symptom would be added each week: whether it was loss of feeling in my hands and feet, stroke symptoms, heart palpitations, losing oxygen to my lungs– my health was spiraling out of control quickly. And we had no idea what to do.

After seeing top internists, neurologists, cardiologists, pulmonologists, orthopedic surgeons, rheumatologists, infectious disease specialists, etc. etc., all came up with the same answer: my blood work and scans were the picture of “perfect health” — not even a single vitamin deficiency. They shrugged their shoulders, were at their wit’s end, and recommended “maybe” the Mayo Clinic, even though doctors mentioned they’d perform the same tests and would most likely come up with the same results.

I felt myself on a steep decline day-by-day. I couldn’t remember the names of people I knew, I lost 15 pounds within two months, and, by mid-December, I came to terms with the possibility it could be my last Christmas. I told the Lord I was thankful for all of my adventures, and I expected no more from life. By this point, even the best doctors had thrown in the towel, and I too was tired of fighting.

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connecting the dotsSearching for an answer, I began to research more and more on different types of diseases I could have. MS? Nope. Myasthenia Gravis? Nope. Lupus? Ruled out. And then the same with about 80 other conditions. Then, I saw Lyme Disease. Symptom 1: Check. 2: Check. I soon went down the list and saw that all Lyme patients were experiencing exactly what I was to a T. And then I remembered a big bug bite that I had last year that took two months to heal. Hmm. So I explored more.Even though I had been tested for Lyme twice by that point, I began to see/read the studies noting that Lyme Disease doesn’t have accurate testing or even appropriate treatment. I quickly found myself in the middle of a [very] heated decades-long debate between doctors, insurance companies, and lawmakers on Lyme Disease testing and treatment, or lack thereof.Want to learn more about Lyme Disease? Kayla breaks it down really well here. You can also read more about the controversies at Vanity Fair, the New York TimesABC News, and the Huffington Post. And if you really want to see what it’s like, check out a trailer of this documentary that was at Tribeca a couple years ago. That sums it up really well.

After mentioning my Lyme suspicion to a few friends, many responses were: “oh my gosh! I have a friend that had the same thing. I wonder if they’d have any advice for you!” Before I knew it, I soon was a part of a network of incredible people that are now recovering that wanted to help others get diagnosed & get effective treatment for Lyme Disease + its co-infections…and all the other junk that comes with it (Lyme Disease is similar to HIV in that is wreaks havoc on your whole immune system and triggers all sorts of other diseases).

Soon, my life became eerily similar to Dallas Buyer’s Club (https://www.youtube.com/watch?v=cC6mv0KhOBY): I had to see all of my doctors simply through referrals of well, basically, underground networks. It sounds crazy, I know. I was just as skeptical as you probably are. But, through a series of three specialists that actually knew what they were doing, I ended up at my doctor– who happens to be a worldwide expert in treating Lyme naturally with the most difficult cases. I was diagnosed with the main Lyme infection as well as the Babesia and Bartonella co-infections, and treatments very quickly followed. I tend to always come up with the rarest and most difficult forms of illnesses…I would almost say it’s a talent : )

Simply put, I had to fight to find/receive treatment, and it was often at the discouragement of my family, friends, and doctors. That can be a scary place to be, but I knew it had to be done. I am so thankful for the discernment to know it was Lyme, and I was coherent enough to be educated & advocate for myself.  My faith and those who have stayed with me and been my biggest cheerleaders are really what continue to carry me. (You know who you are, and to say I am thankful for you is an understatement. You are a gift.)

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source: joyrises.wordpress.com

the here and now

Fast forward to today. It’s May, and I’ve been going through the heavy-hitting part of treatment for a little over two months now. My health is so much better than it was in February. I’ve started eating again, I can fly again, and I can do more in a day than simply go to Whole Foods for 15 minutes. Even one week into treatment, I went to two days of SXSW and did okay! And, on really, really, good days, I might even be able to run just a couple minutes!

And, I must say, my medical team is boss. They are like family to me. My NP once told me with teary eyes that she planned on being at my wedding– and this was when I was at my very worst. Failure was not an option for her. If that day ever comes, you bet she will be there along with several other people who have been so instrumental in this process.

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As for now, I still have a long journey ahead. I still do have a lot of lingering symptoms (boo migraines and ME/CFS), and this healing process will still take several months and could take even a couple years as I hope to go into permanent remission. But, knowing I am already so far away from where I was even three months ago– there is hope. And a lot of it. So fellow Lyme patients (lovingly dubbed by the Lyme community as #lymies or #spoonies), know there is hope. There is a light at the end of the tunnel. Keep fighting and persevering, even though every fiber of your being may want to throw in the towel. There are others that have gone before you that are cheering for you- more than you’ll ever know.

Please know: I am not the hero of this story. My small story is a part of a much greater narrative, bigger than myself, or any of us. It’s a story about a Savior and a great God who doesn’t deny suffering- but enters in the very thick of it with us and promises us this world is temporary. In Him, we have a hope that is an anchor for the soul.

Anyways, that’s a small glimpse of my story. I see people that have been suffering for years that can’t get access to the medical care they desperately need, and it breaks my heart. So, if you know of someone that’s been struggling with some unknown health problems, please go to www.TBDAlliance.org and use their physician referral service. You will be well-connected to a knowledgeable doctor that will be able to help accurately diagnose whether it is Lyme or not!

I know that one day we’ll be able to look back and see advancements made in the medical community. But for now, I’m going to speak for those who can’t speak for themselves and defend the cause of the needy (proverbs 31:8).

My goodness…what an adventure this life is!

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Comments

  1. i love you boo boo!!! you are brave!!

  2. Thank you for having the courage to share your story on the internet. There are so many people who are suffering and doctors continue to ignore their symptoms and pleas for help. I am one of those people. Finally, after my initial ‘late stage Lyme’ diagnosis in November 2001, I have found a doctor who hears me, believes me, and is treating me. The more people share their story and the very-important clinical symptoms that help shape a clear diagnosis, the more people who are infected with Lyme will have a chance to LIVE. And, it will also help to prevent other people for either getting infected in the first place, or getting treatment as soon as possible exposure to infection might have occurred. Time is of the essence with this awful disease. I wish you many blessings and HEALTH as you travel your journey toward wellness.

  3. Hi, I started getting Lyme symptoms when I was 11/12 years old, I wasn’t diagnosed with Lyme Disease until I was 14 when finally I was given a blood test which showed up positive and all the ones given to me after that showed up positive as well. I was on antibiotics for about 4 or 5 months, I don’t remember exactly, and after that I was on a Picc Line for 4 weeks. After all this treatment, none of my symptoms, not even a little bit had gone away. Now I am 19 years old, I am a lot worse than I was when I was 11, 12 years old, I have intestinal problems, heart problems, allergies, cognitive problems, chronic pain, the list goes on. My general practitioner and infectious disease doctor gave up on me that summer I had the Picc Line, summer 2010. They told me to not come back, “I’m chasing a ghost. It’s all in my head.” I’ve been treated pretty badly by the medical community, I’m also in a lot of debt because of them, I can’t afford treatment anyways, but I just can’t take living like this anymore I use to be invincible, now it’s hard for me to even lay down. So I’m writing this as a plea for help, if anyone can help me or give me advice please, I don’t care about my heart problems or how I haven’t been able to sleep in 7 years, it’s the chronic pain that kills me, it’s in every joint, every muscle, every tendon (my joints hurt the most though and my back), it’s so intense I’ve had it for 7 years. One day I won’t be able to take it anymore. I’ve been getting treatment for Fibromyalgia, but I know for a fact that I do NOT have Fibro, this is a misdiagnosis. Anyways I’m going to stop my rant, thank you for sharing your story. I hope this little piece of mine reaches someone, it might be too late for me but it’s worth a shot! Thanks!

    • Zahra…

      I’m so sorry to feel your despair. Be patient and kind to YOURSELF. Finding a Lyme-literate doctor is VERY difficult but you DO need medical treatment. As someone recently told me, Lyme treatment is different for every person, and I agree. It is as much as art, as a science. Her words affirmed my own experience. That said, you need to find an MD who is at the very least, willing to work with you. I’ve had Lyme since the mid-90s but was not diagnosed until late 2001. I did not have good treatment after I moved from my practitioners area and only last fall, found a LLMD here in my area. She is helping me and I am getting better with each passing month. But, you can not let this disease own you. Check out lymedisease.org and see if you can find a practitioner in your area. Be hopeful. You will get better. xo

      • Thank you Laurel for your response, I will look into it. I did go to an infectious disease doctor last week(I haven’t been in four years) the first one said that it is most likely from the Lyme but he doesn’t want to put me on treatment again because the consequences from the treatment aren’t worth it and the second one said she thinks it’s not Lyme Disease at all but possibly juvenile rheumatoid arthritis or lupus (but I’ve been tested for all this already and the tests were negative) or that I have PTSD (I know, random.). Every doctor always says something different. But I have hope I will get better! Thanks for the response! I hope you feel better too!

  4. HELLO OUT THERE!
    My name is jake and I have a very sick mother who we believe has Lyme disease but we have been through the same BS loops most people I’ve heard with this. I am curious to know what doctor you went to for the more accurate screening so that I could take my mother there. We are here is austin,texas If you could email me back if at all possible. I will be trying other ways of getting ahold of you.
    Thank you and I’m glad to be your great inspiring story

    • Jake, if your mum has had the disease for awhile, getting an accurate reading from the various tests is difficult. One test that might help give an indication of disease, and how active it is, is the CD57. She should also be tested for co-infections, which you can ask for by name–go to lymedisease.org and you can see the list of potential other bacteria and parasite possibilities. I’m so sorry for your mum, and for you. It’s hard to watch people suffer, and frustrating at the lack of knowledge and care available. Don’t stop until you find a doctor who HEARS what she’s saying and tests. Sending love and light…Laurel

  5. Hi Elsie. Thanks for putting it out there. Let me offer something you may like, and ask if you know someone I am looking for. You may like “The Anatomy of Hope”, written by an oncologist. It has helped me polish and tend that lamp of hope and faith through 7 years to my first positive lyme test, and a subsequent year of 7 doctors (including 3 LLMD’s) refusing to treat. Inspired by my dad’s death from respiratory failure, Dallas Buyer’s Club, and divine providence, I started self-treatment 6 months ago. I am looking for a very (!!) special lyme research nerd. Because I want to make sure my evidence gets in the right hands to help others. I believe one of the reasons lyme treatment outcomes are so highly variable is that there remains an unrecognized coinfection. In addition to hundreds of photos of it (thank God for the internet, by which we can learn to help ourselves), I have detailed and correlated treatment records. Let’s cultivate our gratitude and try to make sure we leave humanity better off for this unasked for and incredible journey. Text: 415-902-0856.

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