Tuesday, January 27, 2015

Stepping Into the Lymelight... Again

You may have noticed a decrease in the amount of posts I've been churning out lately. I know, it's paltry, to say the least. Let me update you on what I am up against.

On October 11, 2014, not even a prime-time-for-ticks month, I found a tick attached. This is no new news for me, the self-purported queen of ticks. But this one was different. He was very cleverly hidden beneath my left buttock, right where my underwear elastic hits. Even though I check for ticks meticulously, this area was very hard to see and I missed it. I knew it had been there for 24-36 hours, though, because I had felt it and thought I had successfully brushed it away after a walk. Apparently, I hadn't. Or he was hiking my body on the buddy system and I got him, but not his friend.

I discovered him because of the pain. It literally woke me up in the middle of the night. The pain was sharp and intense where he was attached and I knew immediately this was no ordinary tick bite. They usually do not involve pain like that.

Having been to this rodeo before, I knew that antibodies would not even show up yet if I were to be tested, so I waited and sure enough, two weeks later, I could tell I had been reinfected. My doctor agreed to test me, but lo and behold, the results were negative on 10/27/14. The lab also admittedly did not know what to test me for and also told me, "Tell us what to do!" Still, their testing did not produce any results. Thankfully, a full two years after my first Lyme diagnosis nightmare, which she was fully aware of, she told me that I knew more about Lyme than she did and that she would put me on whatever I suggested at whatever dosage I felt I should have and she agreed to refer me to a Lyme Literate Medical Doctor.

I went to see my new LLMD on December 10 and was again tested, this time with LabCorp, a doctor who knew what to look for and test for, and antibodies with ample time to present themselves, even though I'd been treating with Doxycycline already. I was both glad and sad that yep, I had Lyme again. I am not even sure if it is a new infection or the old one reactivated, or chronic Lyme, which some say doesn't exist, but the nurse said they felt like it was a new infection. Nevertheless, I have it. I also was surprised to learn that I have Rocky Mountain Spotted Fever and reactivated Epstein-Barr Virus. I also had two forms of Pneumonia show up, but from what I understand, they are not current infections, just remnants of something not caught years ago. Lyme can reactivate things laying dormant in the body.

I have been put on a slew of medicine. My LLMD didn't even wait, he said the clinical diagnosis and the fact that I had such a strong positive the first time in the Lyme rodeo and the fact that symptoms had never completely resolved were enough to warrant treatment before the results came back. So I am now taking Folic Acid, Metronidazole, Nystatin, Doxycycline (twice the dosage as before) and Fluconazole. I also take a probiotic, a Salt/Vitamin C regimen, a multivitamin, and a Professional Bio-Active Silver Hydrosol called Argentyn 23. If I can remember, I also use oregano oil and Bragg's Apple Cider Vinegar.

However, I've been getting sicker and sicker since the beginning of January. Today, I was so sick that I could not even take my meds. The mere thought of swallowing one of those pills made me nauseous. I knew I wouldn't keep them down. I got up to get the girls off to school, went back to bed for a few hours, got back up and ate breakfast, then lay back down for most of the afternoon, totally zonked and feeling like I'd been hit by a bus.

My symptoms are very similar to what they were before my initial diagnosis in 2012.

  • Weak, shaky feeling, especially in the legs
  • Easily fatigued doing normal things
  • Itching and pressure at the base of the back of my head
  • Trouble thinking
  • Trouble with both long-term and short-term memory
  • Cry easily
  • Joints popping
  • Joint stiffness
  • Rashes
  • Unexplained sharp pains in the body
  • Major sleep disturbance

This disease is awful. I am hoping that the medicines are causing die-off (also known as a Jarisch-Herxheimer reaction) and that I am actually seeing the results of that and it isn't the medicines making me sick. It's so hard to tell. I spend about 50% of my day sitting around on the couch, mumbling, "I don't feel good..." to the point that I don't even want to say it anymore because I feel like such a whiner.

I have a life to live, dang it! I don't have time for this. But I must make time for it or it will kill me. Yes, people can die from Lyme disease, in case you didn't know that. I've had those days. Today, I told my husband I felt like I was on my death bed. He brought me orange sherbet and made me supper and massaged me and it has helped a lot. I feel tremendously better and as I write this, I feel like I might just be able to be normal tomorrow. Lyme is like that for me. From hour to hour, I'm never sure how I will feel.

Remember, you don't know what a person is dealing with behind closed doors and my disease is one of those "invisible" diseases. Most days. I don't look sick, but I am fighting for my life. Tomorrow, you might see me out and about, doing my normal Wednesday routine, looking like nothing in the world is wrong, when just a day prior, I felt close to death. Earlier today, I felt weak, useless, down in spirit, simply ill.

The good news is that my immune system is good and fighting like mad to defeat the army of tick borne nasties wreaking havoc in my blood, cells, joints, and organs. I have a good doctor and am being offered an opportunity to try another therapy which I will be blogging about in the future. It helps things besides Lyme, so if it's awesome, I will be more than happy to tell you about it!

I don't want to talk about my illness a lot on this blog. It's supposed to be a humor blog and full of funny sentences. I'm just not finding the joy to be able to spread it lately, but don't give up on me. I'll be back. You can bet your buns, I'll be back. Hopefully, my funny bone will remain unaffected by spirochetes and Everyday Underwear can return to what it once was. I'm a writer and I will do whatever it takes to regain the ability to entertain you. I just have to focus on this little bug for a bit.


  1. Hi my unfortunate, hurting, frustrated, itching, pain freakin',really sick, not gettin' enough sympathy, no body understands, tick bitten, most unusual disease in the world, adopted literary grand daughter. I hope I covered most of them so we can set all of them aside and just either cry like hell or just laugh all that we can. I prefer the latter myself and damn if I care to hear that you pricked your finger let alone the huge list that I can't remember. You got a truck with one of those snow removing ramps on it and put it in full gear and slammed the pedal to the metal then aimed at this old Irishman and let him have it. I'm struggling out of the pile of you know what to think of something that will get your fingers-a-truckin' on the keyboard so that the readin' gang that love you in the literary world can see and read all the humor that God created in ya. I'll give ya a written hug, a thousand likes and all the sympathy I have left but I am not goin' to let you feel sorry for yourself. If ya needs to cry then lets do it together and let it all hang out. I have some pain and I am sure who ever reads this has some pain inside or out. In this life that we sometimes enjoy, we just have to make the best of what God offers us that day. Why He chooses the things He does quite frankly I don't know. When I really get mad and I think I have had enough, and I am looking for the weapon to go kill myself, I see someone else limping along and dealing with their day and I say,"OK Lord I'll deal with it some how." Cindy, you are that someone else to me today and I promise you and the good Lord that I will deal with it. I will pray a little extra that today is one of those good days and that they will come together more and more.

  2. Oh by the way, I have just completed chapter 6 and what I sent you has all been edited. When you are back and doin' it again, let me know and I'll send you another teaser. I love hearing your comments you know. Your the fuel that keeps me pounding the keys.

  3. Cindy, Just wanted to let you know that I love your blog and nominated you for One Lovely Blog Hop! Check out the "rules" on my blog post here http://cherylfassett.com/ - Cheryl Fassett

  4. Thanks, Tom. Sorry I couldn't get to it. You are not the only one I have left in the lurch. I feel bad, but it is what it is. I am just grateful to be alive and still able to write and have a life of substance. Many Lyme sufferers are not so lucky.

  5. Tom, thank you so much for your kind and funny words. I, too, would much rather laugh than cry and mostly I do! I always try to find the positives in things. Some days, it's difficult. I do the same as you, not by design. When I feel I'm down and out, God somehow seems to show me that my situation is nothing compared to someone else. Strange that I could be that reminder for someone else, like you! :) Thanks again, adoptive grandpa, for your words. They mean a lot.

  6. Lyme is the worst, I'm so sorry to hear you have chronic Lyme. So much sympathy for what you are going through. Every time I think I almost have Lyme beat it comes back with a vengeance. I'm so glad you have a good doctor to help you through it, they are hard to find!

  7. Yes, if you have Lyme, you know what I'm talking about. I never knew before I was diagnosed that it could be so devastating and serious. I am determined to keep living at my best, though, so even if it does keep rearing its ugly head, I will keep beating it down like a game of Whack-a-Mole!

  8. Hi Cindy, I am so sorry you are having such a rough time. I am glad you found a good doctor and he is treating you aggressively. I really hope that this rough patch passes and that you feel like writing humor again soon. But in the meantime, don't worry about writing serious topics because your blog provides really valuable information about lyme. I was tested twice after a bit and fortunately, both came back negative. But if it wasn't for you I would have never have known to even get tested!

  9. I know! I am so glad that you have not had trouble with it since then and I hope you never do. Just remember that if weird symptoms begin, it would be worth your time to follow up again. It can be sneaky and hide for years and then just pop up unexpectedly. Keep your immune system strong and just be very aware of ticks. Hugs, Lisa!