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.

One Year Mark

Well It's been 1 year since I started treatment for Lyme Disease. One year is a very long time to take antibiotics. I'm growing quite sick of them. I really don't know how much longer I have until I'm 100% back to my old self. I'm just taking it one day at a time.

I am feeling better. I just have some pesky lingering symptoms that aren't going away easily. It's nothing big- just occasional lightheadedness, aches, and very rarely heart palpitations.

Right now I'm very achey. I started taking Samento (it's an herb- sort of a natural antibiotic). I think it's causing me to herx. Hopefully it will help me along.:-)

AGHHHHHHHHHHHH!

Okay, just needed to get that out. I'm hurting A LOT right now. Like every muscle, joint, tissue in my body is causing me so much pain.

I just started a new antibiotic, minocycline, a few days ago. Apparently it's doing something. I have had herxes before but none like this.

The other day I was pretty scared. I started getting this weird burning sensation throughout my whole body. It's hard to explain. It felt like a contraction almost because it would start off just in my sternum area and then radiate all throughout my body getting worse and worse. Really weird! I was getting chills too. And on top of that I felt like I was going to lose consciousness. This all came about while at a restaurant, eating lunch. It was very frightening. I came pretty close to having Matt rush me to the ER. Luckily the scary stuff subsided and now I'm left with feeling like I've been hit by a truck.

I researched minocycline herxes on one of the Lyme websites I frequent. Apparently a lot of people experinece pretty bad reactions to mino. It is a very strong antibiotic and is capable of passing the blood brain barrier and other small spaces. So it can be very effective. Most of the people that said they herxed badly from mino ended up getting good results in the end. So hopefully the same will happen with me.

10 months later...

It's been just over 10 months since I started treatment for Lyme Disease. Sometimes I feel like I haven't made any ground. I definitely thought I would be much better by now. However, when I think back to how I was feeling when I was first diagnosed, I have made some progress. Either that or I'm just getting better at coping with this. I would like to think the first thought is true. That I have made some gain in taking all of these antibiotics.

When I was first diagnosed, I couldn't go anywhere by myself. I felt so lightheaded and dizzy all of the time I was terrified that something would happen when I was by myself or worse when it was just me and Holden. So I saved all of my errands for when Matt was home. I also would have to hold on to the basket or stroller a lot during this time. It became a regular thing for Matt to say "Do you want to push the basket (or stroller)."

Now I don't feel lightheaded nearly as often. I can go to the store by myself. I no longer have to hold on to anything for support. That is certainly some improvement! I need to start looking more at what has gotten better besides dwelling on what has stayed the same.

I started a new antibiotic called levaquin a few weeks ago. I wanted to try to treat some possible co-infections. Levaquin usually targets a co-infection called Bartonella or "Cat Scratch Fever". I've been on it nearly 3 weeks and haven't seen much difference. Usually it causes a severe herx reaction in people that have Bartonella. So maybe that means I probably don't have that... which means I can start treating other possible co-infections.

I think next I'm going to see about treating Babesia. I treated it for a couple months early on in my treatment. All of the co-infections are based on clinical symptoms. I quite a few symptoms of Babesia so my doctor put me on Malarone (an anti- Malaria drug). Babesia is a protozoan that is why you can't treat it with antibiotics. Well I didn't stay on the treatment for long and wasn't sure if I took the meds correctly. You are supposed to take it with fat or else the Malarone won't absorb properly. I would get kind of lazy and just drink a few oz. of milk with it. I know that has some fat in it, but maybe it wasn't enough??

So that is my next step... trying to treat Babesia. I really hope I can start improving more rapidly. I want to be completely better so bad!!!!

Update

Just felt like updating this blog before I go to bed...

I am not feeling so great the last few days. I started taking flagyl again- last month I didn't take it. A lot of times the bacteria will turn into cyst form so the flagyl breaks up the cysts so the antibiotics can kill them. Well, apparently, I wasn't feeling better so much because the bacteria was going away, but because it went into a different form....shoot! I really hate this disease. How can bacteria be so smart? I really wish it were easier to get rid of!

So I've been feeling mega tired lately and like I'm in a fog. Just not myself. I'm also feeling extra achey... great! I find it takes forever and a day to go to sleep when I feel this way. Then if I wake up for any reason, like last night when Holden woke up in the middle of the night crying, it takes me a good hour to get back to sleep. Sucks!

I'm sure it will get better.. so I'm just trying to hang in until then.

My doctor was talking about taking me off antibiotics at my next appointment since I was feeling a lot better. But since I started the flagyl again and am still apparently not back to my normal self, I guess that won't be happening.

It's very disappointing to think I am getting better... just to be back feeling like this. I feel as if I take 1 step forward and 2 steps back. *Sigh*

I just have to keep telling myself it will get better. One day I'll look back at this time in my life and it will be a distant memory.

Procrastination

I have a very bad habit of procrastinating. I do it with EVERYTHING. I need to make an appointment with my local doctor to get blood work done. It's been 3 months since I've had my blood drawn. I have to get this done to check my liver enzymes. Some of the meds I'm on can cause problems with the liver. I know I need to get this done, but Ughhhh I don't want to! I'm so sick of going to doctors, getting blood taken (which I have a huge aversion to, but have gotten better), and lastly I'm sick of medicine!!!!

Okay enough whining. I know need to do it and stop being a baby. The thing is I haven't seen my local doctor since September. I kind of chose the Louisiana doctor over him. Just because I felt like the LA doctor had more experience. Now I know that my local doctor really knows what he's talking about. A lot of the things he told me I needed to do like taking herbs, staying on certain antibiotics, ect. were the right thing I believe. For some reason I dragged my feet and ignored a lot of his suggestions. It's not because I didn't think he was a very knowledgable doctor, but I just was so confused at the time. I guess now all I can do is trust in him. I'm kind of nervous about going back to him. I don't know why... I just feel like I was wrong to of stopped going to him previously... I feel like a retard. I don't know how to explain it. I just feel like I've made a lot of mistakes. I guess all I can do is make better decisions from here on out...

Hi

Just wanted to say hi to all that read my blog. Lately I've been getting emails from people that I don't even know, saying that they have been reading my blog. I've gotten emails from people who think they have Lyme Disease, asking for help. I've gotten emails from people who have had Lyme Disease and are now completely better.

I love getting emails from people. It really makes me feel like something positive is coming from this whole ordeal. Maybe what I am going through can help others. Plus it's nice to get emails from those who have been through what I'm dealing with... that is comforting.

So, anyway, I just wanted to say hi.

Going through the motions...

Well I don't have anything new to talk about. I'm feeling pretty much the same. I get tired of saying that, but it's the truth. I've just been taking my meds, herbs, and supplements regurarly, hoping for some change. I take so many different pills each day- it's unreal.

Fridays, Saturdays, and Sundays are the worse because I take so many pills/herbs on those days. I take 3 flagyls, 2 biaxins, 2 omnicefs, cumanda, samento, vitamin C, a daily vitamin, probiotics, and magnesium (today I took 2 because I was having an uneasiness feeling in my chest- I hate that!).

I've never been much for taking pills. I hate it. The whole time I was pregnant with Holden taking my prenatal was such a chore for me. I dreaded it. I would have to take it along with something, usually applesauce, or else I couldn't swallow it. I still detest taking pills, but it's just something I have to do. I have even gotten to where I can take it with just water... even the big horse pill antibiotics.

Anyway, just wanted to update this. Hopefully some good news is on the way. I'm sick of just saying the same ol' thing!