Tuesday, July 31, 2007

I'm so very blessed.

My heart feels like it might burst. I feel so happy, lucky, and most of all blessed. I am going through a hard time in life. It definitely feels overwhelming at times. But I can say for sure, I have never felt alone. I have so much support. I am so grateful for this. It really means a lot- more than I could ever completely explain. Lately it's been hard for me to articulate my feelings. I just have a loss of words.

I must tell about my friend Corey. I have never met her in person. When I was pregnant with Holden I stumbled upon a site called That is where I first met this wonderful individual. After a while many of us moved to a secured community, and we have been there ever since. Corey is a very special person. She has a huge heart. She is a wonderful person: a great Mommy, a wonderful Wife, and a terrific friend. She has provided me with so much support and encouragement. It is AMAZING.

Other friends have also been extremely supportive. I would name everyone individually, but I don't want to accidentally leave anyone out. So you know who you are...I feel so lucky to have such great friends! The kindness and love I have experienced from my friends reminds me of a song. It's a new song by Tracy Lawrence (Tim McGraw and Kenny Chesney co-sing it with him). I want to share some of the lyrics. It really makes me think of my friends!

You find out who you're friends are
Somebody's gonna drop everything
Run out and crank up their car
Hit the gas get there fast
Never stop to think 'what's in it for me' or 'it's way too far'
They just show on up with their big old heart
You find out who you're friends are

I want to, from the bottom of my heart, thank EVERYONE who has been there for me. It makes me feel truly blessed.

P.S. Corey made me this icon. Isn't she the greatest?? I love it Corey!

Appointment Today

I have an appointment in 45 minutes. Kind of nervous- don't know why. I guess because I know I'll probably have to get blood drawn. EEK. I wanted Matt to go with me, but he had to go to Abilene. Sucks!

At least I was able to get my brother to watch Holden. Shouldn't be too hard because he'll be asleep.

The minocycline really hasn't been helping much. I feel about the same that I did before starting it. I constantly feel lightheaded. I'm going to tell the doctor about this, maybe we can try a different antibiotic.

Anyway, I'll give an update about how my appointment went when I return.

p.s. I just wanted to say that I post on this blog just to express how I feel and what I'm going through. It makes me feel better in a way. Plus I can keep up with my progress. Don't feel a need to comment. I just didn't want people to feel like they had to, kwim? I love being able to inform people about Lyme Disease. I hope it makes people aware of stuff they didn't even think about before stumbling upon my blog. Anyway, just wanted to thank everyone who reads my blog and tell you that you don't have to comment. Only if you want to... :-)


I just got back from my appointment. It was a good one. I didn't have to get my blood drawn, wahoo!! I told my dr. that I haven't seen much improvement so he prescribed some new, stronger antibiotics. Kind of scared about the herx's* that will be in store, but at least they will kill more of the bacteria and get me feeling better!

*In case you don't know what a herx is (I didn't until I was dx'ed with Lyme). When the antibiotic kills the bacteria it releases toxins into your body and makes you feel like crap. That's probably the most basic explaination, lol. Here's some additional info..

So overall the appointment was good. I told him about wanting to get Holden tested. He said that he would see Holden!!! I'm so excited about that.. so we should have him tested pretty soon. I need to call and make an appointment.

I haven't gone to pick up my meds yet. Kind of scared to see how much it's all going to cost. Last time it was over $70 and that was with 2 prescriptions.. this time I have 3. EEK..

p.s. I asked my dr. how many other patients he sees with Lyme Disease. I thought he would say not that many... but he said he has over 60 patients with Lyme. Oh. my. gosh. I was so shocked by that!! I should start a support group or something. I never realized there were that many where I live.

Friday, July 27, 2007

Yeah I may look OK on the outside, but I don't feel like it on the inside.

I understand Lyme Disease is a very confusing disease. Trust me, I know that all too well. I understand that it's weird to see me looking fine... but hear me talking about how I don't feel good. It's complicated, very complicated.

The other day me and my sister got into a heated discussion about Lyme Disease. I had told myself that I just wouldn't discuss what I'm going through with her, because it just frustrated me. She's the type that has her mind set on what she thinks and no one can tell her otherwise. So even though she hasn't even bothered to read about Lyme Disease.. she feels like she knows everything about it. Ughh, frusrating to say the least. So the other day we were having lunch together. She started the conversation by asking if I would be able to have another child. I told her yes, but I would have to take antibiotics the whole pregnancy. She said she felt sorry for more because I would be doubly tired. Not only would I have the pregnancy fatigue, but lyme making me tired as well. I told her that I hope to be over this by then. She gave me a lecture about me living in a fairy tale and not being realistic. Basically she told me to just face the fact that I would have to live with this for the rest of my life. I REFUSE to believe this. It angered me because she knows NOTHING about lyme disease.. I mean absolutely nothing and she's lecturing me?!?!?!

Finally I told her to just drop it. I know it will do no good trying to "inform" her. She's not willing to listen. That's fine by me.

Basically this is how I feel. I have chest pain and heart palps from time to time. Pretty much any time I'm standing for longer than a few seconds, I feel lightheaded, like I migh pass out. It's really hard to do any normal activities like go to the grocery store, walk around the mall, or even take my son to the park. I'm constantly fearful that I may faint. Even though I haven't yet, the feeling is always there. It's just scary. I long for the day that I can walk around the mall without having to lean against Holden's stroller for support.

Now about what my sister said. There are some that have late stage (or chronic) lyme. I don't think this is me. I've only been having symptoms since last August. There are some that go years and years before getting a diagnosis. I consider myself lucky for finding out as soon as I did what was wrong with me. I believe that this gives me a chance to beat this. As long as I'm agressive.. I feel that I can completely eradicate this from my body. Yes it will take time and a lot of money, but I have to do it. It's my life. I will have another child. Not for a while (at least a year), but I will have another child one day. I will have to take antibiotics the whole pregnancy and the whole time I'm breast feeding, but that's okay.

My life will be normal again... I don't think that's unrealistic at all. If I can't hope for a full recovery, what can I hope for?

p.s. Reading success stories like these are what gives me hope.

Tuesday, July 24, 2007


Maybe it's a coincidence or maybe not... but it seems like I happen to look at the clock when it is 11:11 a lot lately. I always make a wish. I know it sounds childish, but it's just something I've alwayd done. Lately my wish has been the same. I wish to feel better. I wish that Holden and Matt never get this disease.

It's less than 3 weeks 'til we head for Louisiana. We are making a trip out of it. We are going to visit my family in the Ft. Worth area. I'm so excited. I get to meet my cousin's new baby boy.

I'm very anxious to see the llmd. I hope I feel reassured by the appointment. It seems like I've been feeling lightheaded a lot more often.. It sucks. The other day we went to Odessa. While there we visited the mall. I had to sit down constantly because I felt like I might pass out. I hate that feeling.

I forgot to mention that on Sunday Matt found a tick on Taylor's head (my neice). It was dead. I think she got it from her Grandma's house. She had stayed there for the first couple days they were in town. Her grandma has dogs. We have been using K-9 Avantix on our dogs. I'm sure my neice will be fine.. but it just scares me.

Saturday, July 14, 2007

I WILL get through this.

I need to keep reminding myself this... sometimes it seems to hard. These last few days I have been feeling bad. I feel like my heart is just going to stop beating, it's hard to explain. My chest feel heavy. I hate having all this uncertainity.

I am going to get better.
One day soon I will not feel like I'm going to faint everytime I stand.
I will be able to go out running errands and not have to stop every few minutes.
I will feel normal.

I can't wait until this is all over... I just hope it does happen. I feel so lost sometimes. I just want to feel normal. That is all.

I want this whole Lyme Disease thing to be out of my head. I wake up thinking about it and go to bed thinking about it. It has become who I am almost. It has taken over my body and effected so many aspects of my life. I hate that!

I'm mad at myself because I knew something wasn't right for quite some time. I even suspected Lyme Disease as far back as April. I just felt silly even thinking it could be something so rare and uncommon (little did I know how widespread an epidemic it really is). I should of demanded a Lyme test back then.. then I would already be 3 months into treatment. Maybe I would be over this hill.

Friday, July 13, 2007

Come on August 13th!!!!

That day can't get here quick enough. That is when I get to go see a Lyme literate doctor. I have been feeling weird that last couple days. My heart has been doing weird things: beating irregurarly, causing chest pain. Maybe the antibiotics I'm taking aren't enough? I don't know.. all I know is this is scary.

I can handle the headaches, the dizzyness, fainting feeling (not that I like it!).. but I can't take these weird heart issues.

Monday, July 9, 2007

So Much Anxiety

I'm feeling so anxious and worried today. I'm sick of this!

Holden didn't get tested today. Long story.. but basically there aren't any peditricians that do the Lyme test through the IngeneX lab. Which is the most accurate process. We didn't want to put him through the torture of getting his blood taken just to get a Western Blot test that has about 10% accuracy.

I want to know if Holden has this God awful disease so we can treat him NOW. I just hate not knowing. It drives me nuts.

The IgeneX test cost $245. That is just to tell you if you have Borreliosis (the bacteria that causes Lyme Disease). There is a more expensive test that is upwards of $300 that will tell you if you have any of the co-infections as well.

I just had the $245 test that confirmed I have Lyme.. but as far as co-infections, I have no idea! That drives me crazy as well. From what I've read you have to treat co-infections FIRST. The co-infections aren't bacteria.. which means antibiotics will do NOTHING to them. Talk about frustrating!!

I'm just ready for this nightmare to be over. I'm sick of waking up to this everyday. I want to be better, COMPLETELY better and to know that my son and husband are not sick. Is that too much to ask?

Sunday, July 8, 2007


In the last week and a half since I found out about my diagnosis, I have learned a lot. I have had support from so many people. People who I didn't even know that well were being so nice and helpful. It really made me realize that I'm VERY lucky.

Then of course, I've been frustrated with some. Some people don't understand what I'm going through and don't even want to try. Really only one person: my sister. I think she must think I'm faking all of this. She told me today, "Are you sure you have Lyme Disease?" "Maybe you should get a confirmation." Aghhh! Okay, ummm.. $245, a test that looks at my DNA, and a DOCTOR'S diagnosis isn't enough evidence???? Whatever! I've decided to just not stress about it. I'm not going to waste my energy trying to explain what I'm going through to her, if she doesn't want to know. Why bother?

My husband has been my rock. Seriously I do not know what I would do without him. I just would be utterly lost. He has been so supportive. He listens to EVERYTHING I say. Even when I go on and on about information I have read. He is willing to do WHATEVER it takes to get me better. He doesn't think I'm crazy that I want to drive to Louisiana to see a specialist. He's more than willing to do so. I have cried to him so much in the past year. Back before I even knew what was wrong with me, I would cry because I was scared. I was scared because my chest hurt and my heart was beating weird and I didn't know why. I didn't understand what was going on with my body. He would hold me and let me get it ALL OUT. And now when I know why I have felt like CRAP for the past year, he is stronger than ever for me. He tells me everything is going to be okay and I believe him!!!

I LOVE my husband so much. We have been through a lot and I know we are stronger for it.

Thursday, July 5, 2007

My Test Results

I don't know why.. just felt like putting this here. I guess I should be happy that I met the requirements of both the CDC and New York State. Otherwise my insurance could probably get away with not paying for treatment. I've been doing a lot of reading and some people who have had lyme for years don't meet the requirements because they don't have as many antibodies. You have to test positive in at least 2 bands. I think that is outrageous.. if it's positive, it's positive. My doctor said that he had never seen a Lyme Test come out so high positive. I'm still unsure if when I got bit by that tick last year is when I contracted this. However since my results show that my body is trying hard to fight off this disease.. I wonder if that is a good indicator that I haven't had it long?

I blacked out some personal information.

Wednesday, July 4, 2007

Still hanging in there...

I'm experiencing some weird symptoms today. I feel like there are pins and needles all over my right arm and my right leg. Very strange burning sensation.

I hate taking the antibiotics. They make me feel drugged. I feel like I'm intoxicated when I'm on them, but it's something I have to do.

I can't remember if I mentioned that I made an appointment with the Louisiana doctor. So nervous and excited at the same time. I found out I would have to see him every 6-8 weeks. I don't know how that is going to work out.. but it will have to! Also I found out that he had Lyme Disease. It's in remission now. Isn't that neat that he will be able to relate to me?

Tuesday, July 3, 2007

Better Day Today!

Today I'm feeling quite a bit better. More like myself. Well not totally I still feel very lightheaded. But hey it's better than the last few days where the room was spinning and every part of me hurt.

So that is great!!!!!!

I will get through this.. I need to stay positive. I know it could be so so much worse. I just want to get completely better and let this be a distant memory. I know I will take so much out of this experience.

1) I won't ever forget to apply the dog's tick treatment.

2) I will put on bug spray more often. Before I thought it was too much of a hassle. Ha! So naive.

3) I will have more knowledge, so much more knowledge, of everything relating to tick borne illnesses. I will know the proper way to remove a tick.

4) I won't take simple things for granted. Like going to the store and not having to stop a million times because I feel faint.

5) And more than anything I will have learned about a secret epidemic. I will remember all the people I've read about that have had a much bigger fight with this nasty disease than I am having.

I want to end with an interesting article that I read. If you have a lot of time on your hands (it's a long one) check it out!!

Monday, July 2, 2007


This is hard. I feel so out of it, very dizzy. Holden is watching t.v. right now. I don't even have it in me to play with him. A couple hours ago I was crawling with him on the floor and it was excruciating. I have so much pain all over.. it's awful. I wouldn't wish this on my worst enemy. I can't wait until Holden's nap so I can pass out.

Good news though: I made an appointment with a Lyme doctor. He's in Louisiana!!!! Oh my gosh, I can't believe I am going to have to drive 9 hours to see a doctor. He's been recommended to me by a lot of people. I hope I'm not disappointed. We're going to make a little trip out of it. Never been to Louisiana before.. should be interesting.

Sunday, July 1, 2007

Where do I start?

I thought I would start a blog about my experience with Lyme Disease. I kind of feel like I'm in a nightmare. It just seems hard to believe that this is happening.

I wish Lyme Disease was as easy to get over as some doctors would like you to believe. (Pop some antibiotics for a month and it's all over.) Unfortunately it is A LOT more complicated than that.

I'm taking Minocycline right now (100 mg. 2X a day). It has some side effects. It makes you feel dizzy, nauseous, and just out of it. Hopefully I start to feel better soon. I really hate this.

I've been so emotionally and physically drained. I feel like I'm on a roller coaster. There are so many things I'm worried about, but I'm trying my hardest to stay positive.

I'm going to get Holden tested pretty soon. I pray that he doesn't have this! If he does I don't know what I will do.

I'm trying to find an LLMD (Lyme Literate MD) to visit but the closest one is 9+ hours away. Me and Matt are seriously thinking about going to one doctor we found. He is in Louisiana and has been treating Lyme patients for years. I really want someone that knows what they are doing. I've read that not treating LD correctly (i.e. not using enough or the right antibiotics) can just make the bacteria lay dormant. Then later on (maybe years down the road) it will come back with a vengence. I feel like this is my one chance to COMPLETELY eradicate this from my body.

Matt, my husband, has been so supportive. I couldn't have a better person to lean on. He told me he wants to do WHATEVER it takes to get me feeling better. Even if it means taking a trip to Louisiana and having to pay out of pocket. Most LLMD's don't accept insurance, because if they do, they could get their licenses taken away. There are A LOT of politics involved with Lyme Disease. I never realized this was going on. So many people are suffering but can't get the care they need because someone (who doesn't even know how it feels) says that EVERYONE can be cured with 1 month of antibiotics. So most insurances won't pay for any more than that. It is really outrageous. I hope one day things will change.

Watch this movie trailer. It's a documentary about Lyme. It will really open your eyes.