Thursday, September 27, 2012

You're Kidding Me? What the...? I Have What?

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
  • Chills
  • Fever
  • General ill-feeling
  • Headache
  • 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!


  1. Ah, the joys of diagnosis. I know it sucks, but at least you know you aren't crazy. At least, not that way. ;) After dr. visits, I felt like a hypochondriac until they figured out I wasn't and connected the dots. I hope the dr. helps you and finds some relief from this.

  2. woah, that's insane, I hope you get better quickly and I'm glad you finally found out what was wrong.

  3. Awesome heart wrenching story well put together! I don't know much about the disease but I do know you are a strong willed person and you will overcome this!! I hate that this is happening to you! ;(

  4. Wow, I'm sorry you're dealing with this, Cindy. I hope the specialist can get you on the road to recovery ASAP! Keep us posted.

  5. Yikes. I'm sorry about your news. Oddly, your story makes me feel better about the nerve damage my foot suffered thanks to a herniated disc - which required surgery. Not because misery loves company, but because of my self-blame. I kept thinking, if only I'd paid more attention, looked this or that up, asked the doc more questions, sought a second opinion. But your story reminds me that I didn't get all the info at once. It came in bursts. You've helped me realize that I was doing the best I could with the information I had. It only seemed obvious AFTER the lightbulb went on. Months later, I still feel some weakness, numbness, and pain. But I'm with you: "I choose total healing..." My second choice is to keep a sense of humor, as you have: "Walk this way!" I say. "No, THIS way."

  6. God Grief … what have you gone through and I hope that your problems with will get help and recovery now. As a cancer patient – diagnose are more direct and not a lot of guessing and thank God for that. Straight to the point and quick to treatments. Hopefully you will get all the help you need now. Please, keep us posted with your progress.

  7. Go Doxycilin! Go! My son has Lyme's Disease - and the antibiotics took care of it - unfortunately, we caught it right away - not after everything you've suffered! My heart goes out to you! I hope you have tons of recovery! And soon.

  8. Get better girl! My Oldest son got sick on the Appalachian trail some years ago. He was taken in to Boston, & they diagnosed Lyme Disease. His recovery went well, and I wish the same for you. I'd perform a ceremonial ritual exorcism, but my shaman's license doesn't cover sting rays and ticks. I know this because when my son got home, he went to the beach. Mercy!

  9. Wow is right! This is sooooo not cool Cindy and I'm sorry. If there was a way to buzz the clock backward and have that tick not bite you I would do that for you...I would. So, I'll just stay here so that you know that it's okay to bitch, be sad and be angry...and laugh when you're up to it girl. Because I'll always, always listen :)

  10. Oh Cindy - wow, sending lots of hugs. The good news, at least you have a diagnosis so that you can begin fighting. Over the summer I developed a strange "for lack of a better word" rash that you described. It looked like the photo you posted. It was on the side of my stomach. I got it after going for a bike ride. At first it itched and I thought it was just a mesquito bite. Then about a week later I noticed that the spot had blown up, swollen and red like the picture you posted. I squeezed it and puss came out. It took about 3 weeks but the thing finally went away. Then 2 weeks ago I had a mole removed from my thigh - (I have a history of skin cancer) the mole came back benign but I had an allergic reaction to something - probably the band aid - my entire thigh blew up, red, swollen, itchy - the dermotologist said it was contact dermatitis but he said he never saw an allergic reaction so bad. I still have black and blue marks on my thigh from the rash. So now I have 2 similar symptoms. My question is - how soon after you had your pus filled rash did you start to notice your symptoms. I have not had any of the other symptoms you described, but now I am paranoid. Also, how did they finally diagnose the disease? A blood test?

  11. Lisa, just go get the blood test done. You are in an area of the United States where it is prevalent and catching it early is best. Just get the test so you can eliminate that worry from your mind. Oh, and if you have Lyme Disease, you can thank Dr. Underwear for the diagnosis, LOL!

  12. Not cool is an understatement. Yesterday I had one of my bad days and I was so exhausted, I barely got anything done. I felt terrible that the house was a mess, but even just talking to someone on the phone yesterday had me huffing and puffing. I know that sounds ridiculous, but that's how exhausted this thing makes me! I am so glad you guys listen to me no matter what mood I'm in - because I have already had all of those emotions about it. I just hope the antibiotics knock it out. I'm going to look at some other natural cleansing as well that might help.

  13. Wow! Who knew I knew so many Shamanic people? Just send me your good vibes and that will be great, Van. I am happy to hear his recovery went well. That's encouraging. It's much more common in the Boston area. I hope my doc here will be as good. I have a feeling it's going to get to be a bigger problem here in the future. We have a lot of ticks and they never really died off last year because we had such a mild winter.

  14. I am anxiously awaiting my Doxy to come in the mail. I should have just paid double the price and got it at the pharmacy, but I figured I've been living with it this long, I can wait a few days for antibiotics. Glad your son had recovery - that is encouraging news!

  15. I will! I don't want to focus on my disease in my writing, but I will surely be talking about it. I have thought many times about cancer because it is prevalent in my family and half expected that to be the cause. I'm glad it isn't, but I read somewhere that there are some properties in Lyme that can be carcinogenic, but I am not sure of the source. Like cancer, chronic Lyme can go into remission and come back after years, so even if I feel better after these antibiotics, I will never really know if I'm "cured".

    I had an episode of the "shingles" rash - same one I had this summer - in 1999. So could I have already had Lyme disease then? Who knows. I am hoping the Infectious Disease doc will be able to tell me more.

  16. LOL, Igor. Or is it Igor with a long I sound? One of my all-time favorite movies and I do that scene often. Oh, and this line is my favorite, "Abby somebody." "Abby who?" Abby... Normal." Oh, such a great movie. It's one I can watch over and over and never get tired of it.

    Well, I'm glad that you realized that you are not at fault. You did the best with the information you had at the time and it's in the past anyway and nothing can be changed now. It's hard to let go of self-blame, but I've learned over the years how destructive it can be and so I have taught myself to release it much quicker than I used to. I could have played the game of, "Why didn't I make them test me for Lyme last April?" but why bother? It is what it is and it was meant to be this way for some reason unknown to me, so I accept it with open arms.

    Perhaps there is a lesson to be learned here for me. I always know that my struggles are an opportunity for me to learn and grow, so that keeps my chin up ;0)

  17. Thanks! I will do my best to write more often. I sure miss it.

  18. Me too! I felt like I was going crazy, so this is a good "Aha!" moment. I am so happy to know the cause of my problems.

  19. Like many with auto-immunes, it took me a year and a half to get diagnosis in the end. Or at least six months if you look at it from when I started going to the docs with my first round of complaints earlier this year. I really hope they come up with the technology like on Star Trek where they just whiz that thing over your body once or twice and it analyzes your illness right then and there. Come on, technology! LOL!

  20. Oh, Cindy. I'm sending you virtual hugs. I'm so sorry you had to go through all this. I do know someone who has Lyme Disease. I went to high school with her. She had good days and bad days. For your sake, I hope the good days come in plenty.

  21. Thanks, I'm going to try to make sure that happens!

  22. Cindy, This is not very funny and I hope it goes away. I have heard this can be very annoying and last a long time. Honestly great post but the more I read it the more I was convinced you're a hypochondriac. Just kidding. Hugs to you. Wait, are you contagious?

  23. So sorry for your woes, but thank you very much for the information. I live in a high-tick (not to be confused with high-tech!) area and like you have pulled the varmints off me my whole life. Now, thanks to your post, I will know exactly what to look for. Best of luck to you.

  24. I just really want people to know about it. There are so many symptoms - it's crazy! I knew about the disease, but it wasn't until I searched "speech problems" on the internet that I found that was a symptom of advanced Lyme, then noted the other symptoms and I had nearly all of the symptoms of all the stages at one point or another. I was shocked! Thank goodness I made my doc test me or I might be suffering even longer. I'm hoping there's no permanent damage already.

  25. Not contagious. You may virtual hug me ;0)

  26. Oh dear, I do remember suggesting it was peri-menopause. I'm thankful you got a diagnosis. I know how frustrating it is to know something is wrong but fall prey to doubting yourself when everything comes back negative. I had my first test for arthritis when I was thirteen, but every test came back negative for years. Even my c-reactive protein which indicates inflammation is normal. I've had many tests for Lymes, and thyroid problems-all normal. A rheumatologist finally confirmed I had RA when I was 46. Took them long enough. And that was only because my sister was finally diagnosed after her hands became deformed, developed nodules, and had both knees replaced because of OA. Now I'm taking my 16 year-old to see RA doc for chronic ankle pain-same as I had. Cindy, I hope you find relief and complete remission soon. Sending positive vibes your way! XOXO

  27. Cindy, I am so sorry you are having to go though this. You are fortunate to have that wonderful sense of humor and the ability to put words and emotions down on paper (the computer) so beautifully.......Both got me through a bout with cancer a while back. My heart goes out to you and I pray that you have a speedy and full recovery. Hang in there girl.
    Hugs, Nancy

  28. What a nightmare! So happy you finally got a correct diagnosis. Now you can begin to heal. Here's to a complete and speedy recovery.

  29. OMG I wish I had come here sooner!! I was diagnosed in 2009 and don't know how long I had it. I was diagnosed by a naturopath using the CD57 test (google it). I was treated by boosting my immune system and by using something called borrelia remedy from Deseret Biologicals. I was never given antibiotics. I am doing really well! I would suggest calling Dr. Jonne Groves in Madison, CT. 203-245-7800. Lyme is a highly controversial illness.0.

  30. Sorry to hear that you have this disease. As someone you has an autoimmune disease I hope you never get one. There is no cure. I'm sure you will be in good hands with a specialist and you will be on the road to recovery soon!

  31. I'm sorry to hear this, but for me at least, having the diagnosis is always a relief. If the doctors in your area don't seem to be helping, you should make the trip to CT or MA and see a specialist who deals with this disease all the time.

    My son had Lyme Arthritis, which is a milder form and was treated with antibiotics. My husband had Lyme Disease too, also successfully treated with antibiotics. I'm surprised the first dose didn't treat it well for you.

    You do know the markers always appear in your blood, right? But the tests can show if the markers are from old activity or recent activity. You should ask just to make sure that the markers are reflecting recent activity, just to make sure there isn't more than one needle hiding in your haystack, ya know?

    Best of luck and huge big virtual hugs being sent your way.

  32. I have wondered about whether I've had it for most of my adult life or not. I've always been exposed to ticks and some of my symptoms have presented themselves as early as my early 20's. I am hoping the doxy just knocks it out. I am a little better already. I am just thrilled for the diagnosis, that's a fantastic start.

  33. Me too! I am hoping for no permanent damage and no relapse.

  34. Wow, Karen! Thanks for the info! I was shocked to find out that Lyme is a controversial illness - and not too happy either. I hope I don't have a hard time with it like some do. Seems there are people who are easily cured and those for whom it becomes a nightmare! I am hoping I will be a success story ;0) and I will look into those things you mentioned in your comment for sure!

  35. Thank you, Nancy. Everyone's kind words make a difference. I hope I never lose my ability to write or my sense of humor. They are both so important to me. I'm sure you know what I mean. Writing is a true love for most of us, isn't it?

  36. I'm so sorry you have to go through this, but thank you for sharing your story. I wouldn't have realized that was a "bulls eye rash." I'll have a better idea what to watch for.

  37. I knew of Lyme disease, but knew little of the specifics. All I knew was that it can really screw some people up. I knew nothing about the rash and didn't know that some people don't even get the rash or that it can come in different forms. Thank goodness I do a lot of research on the internet. I searched many, many pictures of the rash and noted that a couple of them were almost just like the "cellulitis" I had. That cemented the idea for me that I MUST be checked for Lyme. Perhaps I'll become an advocate ;0)

  38. Wow- how absolutely awful, Cindy. I'm so sorry that you've had to endure such frightening and confusing symptoms. I'm glad that there is a diagnosis now, and that you have found a doc. I'll pray with you that the course of treatment will be able to knock it out of the ball park - and that there will be no permanent damage. *sigh* Life can be so hard, can't it? Glad that you are able to still laugh - you will need it to keep a healthy balance, I think...

  39. Hey, Karen, the vials - are they swallowed liquid or injection?

  40. Lynne, I had no idea that part of Lyme was Arthritis and now I am feeling it - unfortunately mostly in my elbows, forearms, wrists, and hands - making it hard to spend time on the computer :0( I am not liking this at all and hope it goes away, but this and the muscle weakness in my thighs has been my most persistent symptom. I go see the Infectious Disease doc in 10 days. Can't wait to see what he says and if he can treat my RA symptoms or if I have to go see a Rheumy. I really hate this and really sympathize with you, Chris Dean, and others who are dealing with other similar health troubles. This sucks. I can now say that I literally "feel your pain" - LOL!

  41. Melody, this disease is funny. Some days I feel like I'm dying - or close to death - and other days I feel so normal I feel guilty even saying I have anything wrong with me. The bad days erase my guilt, though. I still have my sense of humor... I just need the time now to put it into blog posts! Ha ha...

  42. Today, I went to the beach with my kids. I found a sea
    shell and gave it to my 4 year old daughter and said "You can hear the ocean if you put this to your ear." She
    put the shell to her ear and screamed. There was a hermit crab
    inside and it pinched her ear. She never wants to go back!
    LoL I know this is totally off topic but I had to tell someone!

    My blog ...