Paranoia

My biggest fear is that Matt and Holden have Lyme Disease. I think that is my worst nightmare.

I'm getting Holden tested next week- 6 days and counting!! Matt has been causing me to worry. He has been complaining about his leg hurting. Sometimes he can barely walk on it- he limps around. I know it could be ANYTHING. He's even researched it and thinks it's sciatica. He's also been really tired lately. He takes naps often. *Sigh* I just worry TOO MUCH.

I know it's a bit riduculous to suspect Lyme Disease for every little symptom. (hence the name of the post) I guess when you go through something like this, it really opens your eyes. You aren't invincible. Something as little as a tick can cause A LOT of suffering.

Rude Awakening

This morning I experienced some very scary heart palps. I was sleeping good when all of a sudden I got up real fast because my heart was beating crazily. Just all kinds of random flutterings that caused me to lose my breath. It lasted just a few moments, but scared the bejeezes out of me.

I first experienced heart palps in April. I had a few scary episodes. However for the last month or so I haven't had any issues with my heart (with the exception of when we were in Ft. Worth and I had a small episode, we were riding in the car to go to a restaurant. It was so miniscule.. I didn't even tell anyone). So yeah, these heart palps have been few and far between (Thank God). But when they do happen it scares me so much.

It definitely wasn't a pleasant wake up call.

Had a rough day yesterday.

I don't know what it was: a stomach bug or a side effect from new antibiotic. Yesterday afternoon my stomach started to hurt REALLY bad. I was having horrible cramps that wrapped around to my lower back. It was painful.

Then I started throwing up. I continued throwing up all day. I was also having hot and cold flashes. It was the craziest thing. One second I would be burning up an the next second I would have goose bumps everywhere.

Thank God Matt was having a slow day so he was able to watch Holden. I stayed in bed all day long. I got so weak that I had to get a trash can and put it by the bed. I don't think I've ever been that sick. I couldn't even keep water down.. but I was so thirsty. That's a horrible feeling.

Thankfully I was able to sleep through the night and woke up feeling much better. I still feel really achey, but I can live with that! (for now) I wasn't sure if I should take my antibiotic tonight. I'm still not sure if that was the reason I got sick. I hope not... or else I may be having a repeat of yesterday.

My appointment with the llmd.

It went REALLY well. I was nervous beforehand because I felt a lot of pressure for it to be a positive experience. I didn't want to be let-down. And I wasn't!

The doctor's office staff were rude. So I was sort of expecting the dr. to be rude as well. I thought maybe it was a Louisiana thing. I'm used to friendly Texans. But the doctor was very nice. He seemed to really care. He listened to me talk about all my concerns and questions.

He seems so knowledgable. Now I know why the people on the message board said he was #1 in the country. He is a great doctor!

He told me an intersting story. Last November he was called to the White House to speak to George Bush's aide. He was asked a lot of questions about Lyme Disease. At the time he didn't know why, but now he knows it's because Bush had Lyme Disease. It's unclear on whether Bush got the right treatment. I told my doctor about what I've read on my message board. A lot of people think he's still infected. According to his health report he has mild vertigo from time to time. That is NOT normal! My doctor said he was going to write Geoge Bush's aide. So that is good... maybe if he is still suffering, he can get proper help. I mean if the President can't get the right treatment, who can? Who knows maybe something good will come out of this for the Lyme community. Somebody NEEDS to advocate about this secret epidemic. Who better than the President?

So the appointment went very well. He spent a lot of time talking to me. I filled out a symptom sheet and many of my symptoms were consistent with a co-infection of Lyme disease called Babesiosis (or Babesia).

He prescribed Malarone (which is an anti-malaria drug). I also got a prescription for Zithromax (antibiotic), Flagyl (cyst buster), and B-12 injections (eek, a little freaked out by that).

I am very relieved to have this appointment out of the way. It answered a lot of questions. The 20+ hours of driving was well worth it.

I am going back to see him in October.:-)

I just want it to END!

I'm sorry this is going to be a pretty negative entry. I just NEED to get it out. I'm up at 5 in the morning. I am in too much pain to sleep. I'm just exhausted from this disease- both physically and emotionally.

I can't stop crying/. I have so many emotions. I'm mad. sad. frustrated. The list goes on....

Why does there have to be such a stigma about Lyme disease. Why can't everyone just agree that it is real. It isn't as easy as taking a 30 day antibiotic treatment and voila you are better. People are suffering. And it isn't right. Why does it have to be about money and politics. WHY????????????//

Matt brought up a good point as to why well-known people who have had Lyme disease don't speak out. They didn't really suffer. They had the power (money, celeb status) to get help fast. They weren't misdiagnosed. They weren't told that it wasn't possible for them to have Lyme disease. They were just treated.. and fast. So they never had a chance to go through what many of us do. Maybe if they had... they would advocate for us.

Another reason I'm so upset is because of insurance. They are fighting me about EVERYTHING. They refuse to pay for my latest blood work. And they don't want to reimburse me for what I paid OUT OF POCKET when I was tested for Lyme. They sent me a letter saying I exceeded the amount they will pay for Lyme tests. I assume they wanted me tested via a Western blot test through a regular lab which is only 10 PERCENT accurate. They won't give me ANY of the money back. Sucks because I was going to use that to get Holden tested. Not to mention I want Matt tested. I'm not going to give up though. My dr. told me that he would write a letter to my insurance company, if they gave me problems.

Okay I don't know what else to say. This vent made me feel better. It helps to get it out..... Tomorrow hopefully I'll be more positive. I just am wondering when and if I will ever get better. It's hard to stay hopeful when you feel so crappy.

What do I have in common with President George Bush?

We both have been infected with Lyme Disease. This was revealed Wednesday when his annual health exam was made public.

I'm a little jealous that he had the characteristic bull's eye rash. (I know, what a thing to be jealous about!) But seriously... I wish I would of had this clue. It would of made my diagnosis a hell of a lot easier. It said in the article he got bit by a tick last August. I think that was the same time I was infected. But boy have we had different outcomes.

There are other famous people who have supposedly dealt with this crazy disease. I just wish someone, anyone would speak out about it. It would really help bring awareness. It's just frustrating.

I researched and found some famous people who have been affected by Lyme Disease:

Michael J. Fox (He was diagnosed with Lyme Disease THREE years before being diagnosed with Parkinson's, but he says he's over the Lyme Disease.. )
Richard Gere (It talks about him in the middle of the page)
Chelsea O'Donnell, daughter of Rosie O'Donnell, TV hostess
George E. Pataki, Governor of New York
Pete Seeger, folk singer and activist
Jamie Lynn Sigler, singer (Meadow on "The Sopranos")
Daryl Hall of Hall and Oats
Amy Tan, writer
Berkley Bedell, former Iowa Congressman
Neneh Cherry, member of musical group "Fine Young Cannibals"
Mary-Lynn Currier, marathoner
Nick Esasky, former baseball player
Julie Furtado, professional bike rider
Pete Harnisch, New York Mets pitcher
Rob Hill, TargetChip Ganassi Racing team crew chief
Rob Kress, former Detroit weathercaster, WXYZ (Channel 7)
Wanda Kurdziel - hiker/backpacker
Irene McGee, former cast member of MTV's "The Real World"
Tara McMenamy, three-time All-American cross country skier
Carrie Nye, Dick Cavett's wife
Gary Player, golfer
Kevin Salem, rocker
Tom Seaver, former New York Mets pitcher
Tim Simpson, professional golfer
Diane Varsi, actress
Alice Walker, author
Christie Todd Whitman, Governor of New Jersey
Michael Zaslow - Soap Opera, "Guiding Light", actor


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In other news...
Today I have felt pretty bad. I woke up this morning with pain all over my back and shoulders. It was so bad the pain actually made me nauseous. I threw up a few times- which sucks!! I hate throwing up. I'm pretty sure I threw up my medicine too. I could taste it in my mouth. I didn't know if I should take some more, I opted not to. Ughh! I just hope I'm feeling better by Saturday. We are leaving then to go to Ft. Worth and Louisiana.

Taking back my life! (same entry from my other blog)

This weekend I have been feeling GREAT. I feel like my old life is slowly coming back. First of all, I went to the mall on Saturday. It's been so long since I've been able to walk around for that long without stopping to rest. Or stopping because I feel like I may faint. We were at the mall for a while and I did not have to stop once. Not ONCE!

Saturday night we went to Joyland. Me, Holden, Matt, and my sister. It was so much fun. And once again I felt pretty normal. I didn't feel that lightheaded or tired! It felt great being able to have a good time without my health getting in the way.

Holden had such a great time. He was so brave, wanting to ride EVERYTHING! He went on over a dozen rides. A lot of which he rode alone. AWWWW, my baby is growing up.

Here are some pictures I took of him:









I still have a long way to go, but I feel like this weekend has given me more hope. I CAN feel normal again. I WILL be completely like I was before all of this happened.

P.S. I posted this same entry on my family blog. I felt like it belonged on both.

Holding my breath...

Well today is the first day of August and also the first day of my new treatment. I'm excited, nervous, and scared. I know I'm going to herx eventually. It's just the suspense that is killing me! For those that don't know what the heck a herx is (which I'm sure is the mass majority) click here.

I want to have a herx because then I will know the antibiotics are working. However it still is hard to deal with, especially when caring for a 2 year old. Thankfully my sister is living with us for the next 2 weeks. She is waiting for her new apartment to have a vacancy. This is great because she has offered to take care of him if I start to feel bad. Thing really do work out sometimes.

I went to the health food store today. My doctor was none too impressed that I hadn't taken his advice on starting an herb regiment. He told me, "I promise I'm not just telling you to take this stuff to keep the health food stores in business." Okay okay.. so I finally took my butt to go get some herbs. I needed to get some probiotics because of all the antibiotics I am taking- they reak havok on your digestive system. I also had to get cat's claw (crazy name, huh?) and some comando (which I couldn't find). The man there looked at me like I was crazy when I mentioned comando.. though I'm sure that's what my doctor told me to get. So I ended up getting the probiotics and cat's claw (yeah he didn't think that one was weird, lol!) I can't believe that this stuff cost more than my antibiotics. I paid over $40. OUCH. Oh well, maybe they will help. *fingers crossed*

Right now my medicine/herb schedule is as follows (just felt like putting this since I'm using this kind of as a journal):

First thing in the morning I take flagyl, doxycycline, and will take comando (once I get it)
Mid-day I take 1000 mg. of Vitamin C, a B-12 capsule, 2 probiotic capsules, and a daily vitamin
In the evening I take flagyl, doxycline, and cat's claw

And to think before getting this disease I didn't even like taking headache medicine. I feel like a pill popper now! LOL.