Friday, October 29, 2010

My Lyme Disease Story

My journey with Lyme Disease

In October of 2009, I started developing mysterious symptoms. First came odd visual problems and trouble reading. It felt like there was constantly a fog on my glasses that I couldn't seem to wipe off. This persisted off and on for several months and I began getting headaches.

In late January of this year, I developed a sinus infection that wouldn't go away. I went to the doctor and got put on antibiotics. That's when all hell broke loose!

I became totally bedridden for months. The doctor said I had mono, but it quickly became apparent to me that something else was going on. I developed HORRIBLE burning and stabbing muscle pain that started in my ankles and over the weeks worked its way up my legs (there are just no words to describe the amount of pain I was in at that point!!). I started getting really nervous, thinking that whatever it was, was making its way up my body and about to attack my organs next! I was having panic attacks left and right. My pain was so bad, I literally wanted to die.

My doctor gave me Darvocet, but it didn't touch the amount of pain I was in. I called his office on numerous occasions crying and begging for something to help me with my pain. I have an INCREDIBLY high tolerance to pain, but I was crawling across the ceiling in agony! He said to try Aleve for the pain. Darvocet didn't touch my pain, and this doctor thought Aleve would help?!

He did do something that helped, though. He put me on two antidepressants, Zoloft and Trazadone. He said that Trazadone is used for chronic pain, and when used together with Zoloft, they start working in a week or two (instead of a month or two). It did help, and since I've been on it, I no longer get the terrible shooting pains up and down my legs that were unbearable.

I kept developing more and more symptoms, but my tests kept coming back normal. I switched doctors so many times, desperate for help, but no one seemed to believe that there was anything wrong. I kept hearing that it was all in my head and that I should see a psychiatrist. I couldn't take care of my kids anymore. I could barely walk and many times I had to be carried up the steps. I developed joint pain and arthritis in my hands. And then there was the pain. Undescribable pain!

At one point, I was sent to a rheumatologist, who upon examining my fingers which were starting to curve and bend from arthritis and were too swollen for me to wear my wedding ring told me, "Sometimes when we don't feel well, we notice things about our bodies that we wouldn't normally notice." Was this person REALLY implying that I was making up joint pain and swelling?! She said all my blood work was normal and there was nothing wrong with me and our appointment was done.

I knew someone with Lyme Disease, and some of her symptoms were very similar to mine, so I started researching it and I realized that I had an incredible number of symptoms. I found a great doctor, known among Lyme patients as an LLMD (Lyme literate doctor). My test came back highly positive for Lyme Disease.

I've had symptoms of Lyme for years, and misdiagnosis after misdiagnosis. Lyme is so hard to diagnose because the symptoms are ever-changing. What hurts one day doesn't necessarily hurt the next day. Also, no two cases of Lyme Disease are the same. You can get any and all combination of symptoms.

I started long-term antibiotic treatment in August. I don't know how long it will take before I am well again. For some people, particularly those who've been shuffled from doctor to doctor before getting the correct diagnosis, it can take many years. I have good days and bad days. I am very limited in what I can do, and I am in a lot of pain on a daily basis.

I don't want people to think I'm writing this for sympathy or pity. I write it because people don't know the facts about Lyme Disease. Did you know that fewer than 50% of people ever recall a tick bite? Fewer than 50% get the telltale bull's-eye rash associated with Lyme Disease. Did you know that a tick can be the size of the period at the end of this sentence? If you went to your doctor and asked to be tested for Lyme Disease, most likely you would be told that Lyme Disease doesn't exist here. I am living proof that this isn't true!

I hope my story inspires you to take the time to learn the facts about Lyme Disease. It is supposedly "rare" in my area. But I'll let you in on a secret: I'm not the only one here with Lyme Disease! Not even close. There are lots of us, here, there, and everywhere!

For a list of symptoms, please visit this site:


  1. Jamie just told me about this today. I had NO IDEA. You are courageous to do this, A. It will help others, and I am sure it is helping you. Take care of yourself and get well soon!

  2. Thank you, Elizabeth. I really hope it prevents others from going through what I've been through, like you said! :)

  3. Thanks for posting this again. I will be following your site. You are not alone.

  4. ""Sometimes when we don't feel well, we notice things about our bodies that we wouldn't normally notice." Was this person REALLY implying that I was making up joint pain and swelling?! She said all my blood work was normal and there was nothing wrong with me and our appointment was done."

    I want to kick the person who said this to you in the shin.

  5. great blog ...I have been really sick and like you searching for why I feel so sick ...finally found a Dr who believes Lyme exists here in Australia and had blood tests done in Germany and they came back positive to Lyme Borrelia burgdorferi & co infection Ehrlichia/Anaplasma..Chlamydia pneumoniae and Yersinia..also have EBV...CMV and coxsackie no wonder I've felt dreadful all these years .... I've been making Kombucha since November 2012 and like you just love the stuff I feel I cannot get enough of it ...I usually brew 2 litres every day so I have a large supply I give it to my drling partner and make some to give my 2 grown adult sons they love it too...I'm going to give them a culture so they can make their own...Sherrie from Simpleliving

  6. Hi Sherrie, thanks for stopping by my blog. I am so addicted to Kombucha! My kids love it, too, although my hubby won't touch the stuff with a ten foot pole! :)