You're Kidding Me? What the...? I Have What?
By hiyacynthia on October 19, 2012
If there's one thing I've learned in my life, it's that I have no idea what's going to happen next. I can plan the crap out of my entire existence and at best, come close.
I am going to cease doing an every Wednesday Woo-Hoo. It's been a very fun thing to do, but due to many extenuating circumstances, it's all the writing I'm getting done lately and I need to return to being more broad.
That's what you want - more of this broad, right?
I hope to get back to posting every 5 days. I haven't been able to keep a schedule recently. I have my reasons and they're good, I swear! I just found out I have a disease.
On Monday, I received a phone call from a nurse that actually made me react nearly the exact same way I reacted twice when getting phone calls over the years, telling me of acquaintances' suicides. I actually told her, "Oh my God, this is making me cuss!" She laughed. I was glad. I needed to hear a laugh to help keep from crying.
Her shocking news? "Your test results are consistent with Lyme Disease."
Not only do I have Lyme Disease, I'm certain it isn't a false positive. I would have been lucky if it was. Back in April of 2011, I found a tick attached to the lower back side of my underarm. This was nothing new. I've been around ticks all my life, have found literally hundreds crawling on me at one time or another every single year, and have had them attach too many times to count. Bugs love me. Ticks are no exception.
What was not normal was that the tick bite site had developed pus, was very red and swollen, and looked infected. Naturally, I took a picture. Now, today, knowing what I know... I'm glad I did. It's proof I will likely need.
No, this is not a boob. Yes, I've had someone ask that.
It was a very large area - probably five or six inches across. I couldn't believe I hadn't noticed the tick. I just hadn't. Stealthy bastard. I showed the angry looking area to a nurse neighbor and she ordered me to take antibiotics immediately if I had any in the house and call the doctor first thing in the morning. I saw a physician's assistant, who regarded it with great awe and determined it was cellulitis. She gave me a very painful 1000 mg shot in the hip of a thick goo known as Rocephin and put me on a two week course of Doxycycline. Over and done with - or so we thought.
I'm sure, like me, you've heard of the bull's eye rash associated with Lyme. This wasn't a bull's eye. But now, looking at pictures of what I know now is erythema migrans, it apparently was the rash in a slightly different shape. You don't always get a bull's eye. I didn't know that and apparently neither did anyone else who looked at it. We all knew it came from a tick bite site, but still nobody suggested Lyme testing. I think I recall my mother-in-law asking if it could be Lyme, but I was sure the doctors would have caught it if they suspected it. They surely didn't. And now I have Lyme Disease.
Life went on and then probably six months later, I began noticing some things about my body that weren't quite right.
I noticed a change in my speech. My voice began to jerk unexpectedly during speech, sort of like a stutter. It was intermittent and my voice had done that before, but I noticed it becoming more and more frequent. I also developed "old lady voice" - where my voice would waver. It sounded like I was getting upset when I wasn't. It also became easier for me to get emotional over things, a little like a stroke victim might experience easily coming to tears. I choked on liquids or my own saliva much more easily. It was a muscle problem, but I didn't know that.
I began to notice muscle weakness in my thighs. At first, it was happening around menstruation, so I just associated it with that and getting older. I attributed a lot to "getting older," but now I know better. Then I noticed it was happening when I walked the dogs. Then it was occurring all the time. My legs felt weak and shaky and tired easily with exercise.
I also noticed the same behavior in my arms and hands. When I'd walk the dogs, my arms from the elbows down felt heavy, like they were filled with fluid and should be swollen if I looked at them. I always looked. They always looked fine. Then my arms started falling asleep at night. Every night. Then I noticed the weakness in my arms was persisting. I could feel it all day instead of just after exercise or after waking up.
I had a couple of episodes where I felt like I was dying. One time during the night, my heart was beating erratically and I felt like I might be having a heart attack. One day, I felt very disconnected from my body. I cried and all I could manage to explain to my husband was, "I just feel so weird."
Then there were the rashes and hives. At least once a week, some kind of manifestation of rash or hive would appear somewhere on my body. My legs, my waist, my whole body, my face.
The right side of my head started going numb. When it wasn't numb, it was tingly, like I had done a stimulating drug and my hair was "crawling." I began to feel pain and pressure at the base of my head at the back, like I'd worn a hat all day and then taken it off and I could still feel it, if you know what I mean. I feel it every day, all day.
I had an incident in the night almost like a seizure with my jaw jerking so hard it woke me up. I actually chipped the sealant on a back tooth and chipped a bit of my front tooth as well. I was so tired that I thought it might have been a dream. I could feel grit in my mouth, but was too exhausted and out of it to get up and check it out. I wondered if it was a dream. I could have been a dream. I have had very realistic dreams before. My routine dental cleaning a couple of weeks after showed that it was no dream.
I heard a strange noise in my head and thought I might be having a stroke or brain aneurysm. It lasted approximately 5 seconds. There was no sensation. Just the sound... something I'd never heard before. It scared me, but there was no physical reaction to the sound, so I dismissed it, mentioning it to the docs later on.
I developed popping in my right jaw, ringing in the right ear, pain in the right ear.
And then there was the extreme fatigue. I cannot tell you what that was like, other than to say that part of the reason I haven't been blogging much is because I was spending half of my week in bed. I was exhausted all of the time. I could sleep all night, get up and get the kids ready and off to school, then lay back down for another 3 hours and sleep hard and then still be exhausted when I woke up, having to drag myself out of bed to get anything accomplished. But I was busy with the kids, the elderly lady, the new business... I should be tired, right?
I developed mild dizziness, mostly when first waking up in the morning. I'd get up and run smack dab into a wall before getting my bearings.
I noticed a bit of brain fog and memory loss. I couldn't concentrate on tasks as easily. `I'd go to town to do three things (a 15-20 minute drive, so I have to plan carefully) and get clear home before realizing I had only done one of them. For instance, right now, I do not remember what side of my body the tick was on. You'd think I would remember that. It appears to be on the right in the pictures, but I could have sworn it was on the left. Did I take pics in a mirror or have my husband take them? I don't know. I don't remember things at all like I used to. It makes me feel stupid sometimes.
I began to tire easily during normal duties, like walking up the stairs or just walking the dogs or even doing a little housework. It wore me completely out. I had to quit my part-time job caring for the elderly lady. It was too much. Just 8 hours a week and it was too much.
I began to feel "shaky" on the inside. What I mean is that when I would wake up in the morning, before I would even get out of bed, it would feel like my head was shaking like a Parkinson's sufferer. The odd thing was that I wasn't shaking, it just felt like I was. I know. Weird. I still have that nearly every morning.
My left knee sounds like a bowl of Rice Krispies when I walk up stairs.
I knew something was wrong. I'm usually pretty healthy. I am happy to have gotten an answer finally because it's been a frustrating journey. Am I shocked at the diagnosis? No. But it was a heck of a ride getting there. The process started early this year:
I had my voice checked by a physician's assistant. She checked me out and determined my thyroid might be enlarged. They took blood (results were fine) and ordered an ultrasound of my thyroid (which also came back fine). They suggested that if I had further trouble, they would do an upper GI to see if there was any reflux, etc. I had an innate feeling that wasn't the problem at all, so I chose not to do it and give it a little time.
When the rash came on (I thought it was Shingles - remember the post?) the fun began. They treated me for the Shingles and took a scrape which went off to the lab and the results came back negative. I was baffled. I just knew it was Shingles!
Remember this picture? The dermatologist's office thought it was Contact Dermatitis, I thought it was Shingles.
I was closer than they were, but we were both wrong!
They sent me over to the dermatologist. She did allergy testing and determined I had Contact Dermatitis. I had an irritant reaction to Balsam of Peru and Nickel. I knew it wasn't Contact Dermatitis because of the extreme fatigue accompanying it, with a few other symptoms not typical of CD like stabbing pains and tingling, but that was the diagnosis. I was given creams and sent home with allergy information.
Next stop: my annual female exam. This just happened to be during the time of great ear pain and jaw popping and I was sure I had a raging ear infection. I excitedly told her, "Look in my ear, there's something wrong there," and she looked and said, "Nope, clear as a bell." However, combined with my dizziness and other symptoms reiterated, she suggested I see an ENT and get a CT scan of my head and neck. Joy.
The chiropractor and dentist both confirmed that there were no TMJ issues they could easily see. I was referred to an orthodontist for the jaw popping, someone who is fabulous with tempomandibular joint issues and just happened to be my kids' orthodontist. She's an hour away, but I knew she could do the fabulous scanny thing to look at my jaw and determine if there were any growths or problems there. Great, another hour drive to see another specialist. That appointment is in a few weeks, by the way. Every specialist costs me about a month's time at least.
The ENT did a hearing test, shoved a probe through my nose and down my throat and made me repeat specific sentences with the device in place (fun), looked in all of the orifices of my head and proclaimed, "The good news is, there's nothing wrong with you. The bad news is, there's nothing wrong with you." I felt so defeated and confused. Something was wrong, but what? I nearly broke down right then out of pure despair, but I kept it together. He suggested that I might have MS or a neurological problem and scheduled an MRI of the brain. Double joy.
MRI came back. Brain = normal. Normal? No way! I'm not normal! Not normal! NOT NORMAL! NOT NORMAL! The consolation was that at least I now knew that I didn't have a brain tumor or Multiple Sclerosis. I already had an ANA and they had ruled out the big autoimmunes, but my symptoms had such similar properties. How could this be? There is a big, bad something wrong with me and I know it!
My mother concluded it was menopause and bought me a book. I got to page three before I got the Lyme diagnosis. Mother, you may now buy me a book on Lyme Disease.
My husband, tired of the complaining, my feeling terrible all the time, and the house being a wreck, oh... and the medical bills piling up when we really can't afford them anyway, determined it might be in my head and I was stressing out about it so much that I was actually causing my symptoms.
I developed a painful bump in my mouth and one on my hoo-ha and decided to go to the doc again. I knew I needed to document everything. However, the spots weren't like anything she had any concern about. Not a herpes lesion or anything like that, she said. Whew! But then again, what the heck was causing my head to be numb, the frequent hives I'd developed, and all of this horrible stuff I am dealing with? I told her I felt like a hypochondriac and that wasn't like me. Out of ideas and noting how frustrated I was, she suggested seeing a neurologist.
In a last ditch effort, I asked her before leaving the appointment if she would consider testing me for three things I had researched and wondered about, just to eliminate a couple of my concerns. I felt like that was what we were doing, finding the needle in the haystack by picking up one piece of hay at a time and going, "Nope, that's hay, not a needle. Nope, that's hay. Nope, that's a piece of hay, too." I was beginning to wonder if there was even a needle in there. Perhaps it was in my head. Perhaps I was crazy. Perhaps it was just menopause. The doc pooh-poohed that one and didn't give it much consideration.
I asked if I could please be tested for other types of Herpes (I did have the Herpes Zoster Shingles virus in my body, after all), Lyme Disease (I did have a tick bite that turned into cellulitis and I have all the symptoms of advanced Lyme Disease, after all), and Vitamin B deficiency (it can cause neurological problems similar to mine). She agreed. I waited six days for the results.
Monday came. The phone rang. I have Lyme Disease.
I knew right away it wasn't good because I knew when I had contracted it and I knew enough from what I'd already read that I would either be in stage 2 or possibly 3. Upon further research, I am in stage 3, the late stage. If I had any of the early stage symptoms, I missed them or thought I had the flu. I do remember thinking I had the flu once last year, but I don't remember when it was.
U.S. National Library of Medicine - National Institutes of Health:
Symptoms of early localized Lyme disease (Stage 1) begin days or weeks after infection. They are similar to the flu and may include:
- Body-wide itching
- General ill-feeling
- Light-headedness or fainting
- Muscle pain
- Stiff neck
There may be a "bull's eye" rash, a flat or slightly raised red spot at the site of the tick bite. Often there is a clear area in the center. It can be quite large and expanding in size.
Symptoms may come and go. Untreated, Lyme disease can spread to the brain, heart, and joints.
Symptoms of early disseminated Lyme disease (Stage 2) may occur weeks to months after the initial tick bite. They may include:
- Paralysis or weakness in the muscles of the face
- Muscle pain and pain or swelling in the knees and other large joints
- Heart problems, such as skipped heartbeats (palpitations)
Symptoms of late disseminated Lyme disease (Stage 3) can occur months or years after the initial infection. The most common symptoms are muscle and joint pain. Other symptoms may include:
- Abnormal muscle movement
- Muscle weakness
- Numbness and tingling
- Speech problems
So there you have it; everything you never wanted to know or didn't care to know about how Everyday Underwear got Lyme Disease. They are putting me on two months worth of Doxycyline and sending me to an Infectious Disease Specialist. My appointment isn't until mid-November. It was hard just to choose a doctor. Apparently, Lyme Disease is quite controversial for those who don't have confirmed cases and there is a real secretive underground network of doctors due to the touchy political climate surrounding insurance coverage and validity of the disease. I think I'm lucky. I have a confirmed tick bite, a picture of the rash, live in a tick infested area, and have all of the symptoms, plus a positive test for Lyme, so I hope I won't have trouble with my insurance.
The nearest Lyme Literate doc is 3 hours away, so I called and found an Infectious Disease doc who has treated Lyme patients at all stages and spoke to a nurse before committing. He is only an hour and a half away. Darn living in the middle of nowhere! The really good Lyme docs are all up north in Wisconsin and Minnesota or in the Northeast US states. I can't travel that far. I have a life to live, kids to cart around, a house to run, and my husband's businesses to help out with, not to mention my humor writing! If you've been wondering where I've been, now you know. Please pray that this doctor knows his stuff and can help me.
Many patients end up with PLDS (Post Lyme Disease Syndrome) or Chronic Lyme (permanent problems and damage much like autoimmune diseases cause) and I don't want that. I reject that! I choose total healing from this thing. Join me in that belief, if you will. I hope you never have to deal with anything like this. I'd like to hear about some people who have found healing from Lyme because so far, I have found a lot of really ticked off activists and family members with horror stories from Lyme. That's not real encouraging and uplifting.
So where's the humor in this? Here you go... when I told my 11 and 14 year old girls I have Lyme Disease, I got the following responses:
14 year old: "Oh! Well, that's not so bad then. All you have to do is, like, not eat limes, right?"
11 year old: "Soooooo, my mom has a disease..." (I could tell by the way she said it that this would be a cool thing to be able to tell her friends).
Also, I told my husband I think it would be really funny if I wore his beekeeper suit and one of his respirators from work when I go to see the Infectious Disease specialist. That would totally freak people out! I tell you one thing, I'll be taking a large container of hand sanitizer with me, that's for sure.
Do you know anyone who has dealt with Lyme Disease? Tell me your story.
Cindy Brown, humor writer http://www.everydayunderwear.com