Like Night and Day

Well I mentioned a few weeks ago that when I stopped my antibiotics I had a relapse of symptoms.:-( It happened very quickly... like just a day after ceasing the antibiotics. I started taking them again and just about as quickly as the symptoms had come back they went away! Yay! I'm feeling pretty good right now.

Right now we are in Chicago. I'll post more about that on my other blog when we get home. Holden had his appointment in MO yesterday. The doctor is pleased with his progress. He prescribed some new anbitiotics. He also said he probably doesn't have babesia so we are not going to take those meds anymore (though he isn't sure if it was them that caused the rash). Holden was taking them for 10 days before the rash started and we didn't notice a herx and if he had babesia we would of been able to tell.

Well I'm off to get ready. We have A LOT of stuff to do today.

Just wanted to update about how we are doing.

A very very late book review

First I want to apologize to Bryan Rosner. Many many months ago (maybe even a year?) Bryan sent me a book he had written called The Top 10 Lyme Disease Treatments. I immediately read it when I received the book, but failed to write my review. Have I mentioned Procastination is my middle name?

Without further ado, here is my review about the book:

When I first read this book, I was impressed about how throughly Bryan covers different treatments of Lyme Disease. Anyone who knows someone who has Lyme Disease or has it themselves knows that there is no one treatment for everyone. It definitely isn't one size fits all. In discussing all of these options, Bryan gives hope to those who have failed to get better.

I also felt like I could relate with Bryan. He is very knowledgable about Lyme Disease not only because he has done research, but because he has battled Lyme Disease- and won!

I feel like I gained a lot of knowledge from reading Bryan's book. When I first received the book I was very confused about what I was up against. It was early on in my treatment and I had so much information coming at me from doctors, the internet, other books, ect. I felt like Rosner's book included most of what you need to know and made it easier to understand than many books I have read.

I strongly suggest The Top 10 Lyme Disease Treatments for anyone who is dealing with Lyme Disease. It will help you better understand the different treatment options you have. If you are like me, you will feel empowered and hopeful after finishing the book.

Thank You Bryan Rosner for putting together such a complete, informative guide to treating Lyme Disease. It is a treasure to the Lyme community and will help many people.

Seriously?!?!!?

Okay so I guess my troubles with Lyme Disease are NOT over. Ughhh!!!! My doctor was planning on taking me off of everything when I see him on Monday. Earlier this week I ran out of my antibiotics. It seemed stupid to get them filled if I would be taking them for less than a week. So I decided to go ahead and stop taking them.

The first day I was doing good. The second I noticed I was a little achey, but didn't really think anything of it. Now yesterday and today my symptoms have been coming back full force. I feel lightheaded a lot and my heart is acting up. I have been having palpataions and this heavy, congested feeling in my chest. I had forgotten about how much the heart symptoms suck!

I was really bummed yesterday because this means I am not done. However now I think I have a game plan. I'm seeing my doctor on Monday so I'm going to tell him about everything and see about starting Malarone- I really feel in my heart that I could have the co-infection Babesia. It's a gut instinct I have. I feel like that is what is keeping the Lyme from going away. I'm going to see if he will put me on the Babesia meds and try a new antibiotic like Zithromax or stay on Doxy, if I can. I'm hoping this plan of attack will work.

And on top of all the symptoms coming back I'm faced with another problem. Last week my doctor sent a letter saying he is dropping his insurance. He is going to be treating Lyme full time. (hey that rhymed!) I'm happy that he is going to be only focusing on Lyme because Lord knows we need more doctors, but now I'm going to have to figure out how to pay all of my health expenses out-of-pocket. When I got the letter I wasn't too worried because I thought my treatment was coming to an end, but I guess you never know with this disease.

I just have to keep repeating, "Whatever doesn't kill me makes me stronger ... Whatever doesn't kill me makes me stronger... Whatever doesn't kill me makes me stronger."

Now I just have to believe it!

Doing good

I'm almost hesitant to type that title. This disease has been a roller coaster to say the least and at times I feel like I'm walking on egg shells. I have been feeling good, normal, like myself.

I had a doctor's appointment on Tuesday. It went well. I will return next month and more than likely be taken off my antibiotics. I'm excited but scared at the same time. I've been taking medicine for 20 long months. I am excited to not have to do that day in and day out but I'm also scared that my symptoms will come back!!

I want to have another baby so badly and I am scared my health will stand in the way of that. I'm doing good now, but how long will that last? I hope for a really long time...but there is now way of knowing.

So that's where I stand.

Holden is doing well. He is on a new antibiotic. I was surprised when I got it filled and saw that he would have to take pills. They are little, but still he is only four! However once he got the hang of it he has been swallowing them with no trouble.

Update

Well Holden had his appointment a couple weeks ago. It went really well. I feel at ease now. I just know he's going to be okay. He started his antibiotics and we are having no problems at all getting him to take it. (That was one of my fears.)

I think he has herxed from the meds. We notice shortly after he takes his morning dose he acts a little out of it and lethargic. Hopefully treatment won't last long for him. The doctor seemed very confident that he would be completely cured. And after this treatment he should never have to see Holden again.

As for me, I'm still taking all the my meds. I had a phone conference yesterday and the doctor is pleased that my symptoms are diminishing. I try not to get my hopes up because I've done that too much during this ordeal. I have an appointment 2 months from now. The doctor said if I'm still doing good he will take me off antibiotics. I'm excited for that but also scared at the same time. My symptoms aren't all gone- the lightheadedness still lingers at times and I have some pain in my back. Other than that I feel pretty normal. My doctor told me that I was the poster child for the day... Hopefully it stays that way!

And onward I go...

Sometimes I feel like this journey with Lyme Disease is never going to end. Today has been one of those days.

Yesterday I had an appointment with my Lyme doctor. He prescribed Prozac to help with my anxiety. Let's hope it helps!

Other than that I'm staying on the same antibiotics and adding flagyl (evil drug) in 2 weeks. Flagyl in the past has caused me to feel REALLY bad. It kills the cyst form of Lyme, so it's a good thing when you feel bad, but not really looking forward to that!

We made Holden an appointment with a doctor in Missouri. It's in December. Looks like we're going to visit another state we've never been to. At least that's one positive of Lyme Disease- We get to see new places. LOL!

Please tell me it's not so!

Holden may have Lyme Disease.

We had him tested in Sepetmeber 2007 (shortly after I was diagnosed). My local doctor's office called and said it was negative. I didn't see the test results for myself, I just took their word for it. As time went on I started getting curious to see exactly what the test said. Testing for Lyme Disase is very complicated (as is everything else pertaining to LD!).

In June of this year I went to the dr's office to get a copy of his test. My heart sunk when I saw it. Immediately my eyes were drawn to some positive marks. There were a few positive bands and some IND bands (which is pretty much weak positives). I felt like I had been kicked in the stomach.

After many days of crying and agonizing over the results, me and Matt decided to hold off on treatment. I really think it was denial on my part. I read on the internet that if a child wasn't showing symptoms, don't treat. Holden really wasn't showing any symptoms, however there were a few things I was worried about.

In the last few months I have been critiquing everything that Holden says and does. Everytime he would say "I'm tired" my stomach would knot up. Even if we had just been to the park and a million other places and he had every right to be tired. Anytime any little thing would happen I would wonder 'Is that a Lyme Disease symptom?' It seems like there are so many symptoms. Holden had a few of the little symptoms (like ears turning red and excessive thirst- though that might be hereditary since Matt and my neice are the same way). I tried to tell myself that those symptoms could be a coincidence. He still really wasn't showing the 2 main symptoms of LD (fatigue and pain).

So fast forward to Monday. I had a an appointment with my doctor. I brought up Holden during my appointment. My doctor was adament that we treat Holden. I was shocked. In August when I had mentioned Holden he said keeping an eye on him and treating if any symptoms arise would be okay. However he had recently attended a conference about children and Lyme. He brought up a good point that I just couldn't deny. If Holden has had Lyme for his whole life he wouldn't be able to tell us that he felt "different" because for him it would normal. That really hit me.

When I left my appointment I felt a little gutted. I felt so much guilt.. soo sooo soo much guilt. Why didn't I start treating him earlier? Why did I wait? What if I caused Holden damage by not getting him treated sooner?

I still don't know what to think. Honestly I don't know if he has Lyme. My gut says he probably does and that makes me feel sick. It's almost too much to handle.

On the 5 hour car ride home I read a book my doctor gave me about children and Lyme. A few things struck me. It said 27% of children with Lyme have speech delays. It also said children with Lyme will sometimes repeat questions instead of answering them. It's like they can't distinguish that it's a question. Holden does this.:-(

I made an appointment for Holden on Monday. It wasn't an easy task to find a good llmd (Lyme literate md) that would treat kids. He's 10 hours away in Missouri.

They couldn't fit him in until December 16th. That brings me a lot of anxiety. It seems like such a long time to wait.

In the meantime I feel like I'm in a nightmare. I am so scared for Holden. Even though he's not displaying any bad Lyme symptoms, I don't know what's going on in his little body, and the unknown scares me.

I just want this to all go away.

I keep praying that if Holden does have Lyme Disease that God will take it away from him and put it in my body. I don't care if I'm sicker as long as Holden is okay.