I have Lyme Disease...

Like Night and Day

2009-04-15T05:09:00.000-07:00

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

2009-03-27T07:09:00.001-07:00

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?!?!!?

2009-03-27T07:00:00.000-07:00

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

2009-02-27T21:23:00.000-08:00

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

2008-12-30T07:39:00.001-08:00

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...

2008-11-25T14:46:00.000-08:00

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!

2008-10-23T21:44:00.001-07:00

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

2008-06-28T23:06:00.000-07:00

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!

2008-05-21T20:51:00.000-07:00

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...

2008-05-01T13:38:00.000-07:00

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

2008-03-18T20:53:00.000-07:00

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

2008-01-18T15:45:00.000-08:00

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

2008-01-15T14:08:00.000-08:00

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...

2008-01-04T20:28:00.000-08:00

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!

Interesting

2007-12-17T14:27:00.000-08:00

I was reading an article about the herb Samento and it's effect on Lyme Disease. I came across an interesting statement: Lyme Disease is now thought to be the fastest growing infectious disease in the world. There are believed to be at least 200,000 new cases each year in the U.S. and some experts think that as many as one in every 15 Americans is currently infected (20 million persons).

Wow.

Often I wonder how many people have the disease and have no idea. It cost a lot of money to even get a diagnosis. What about people that can't afford it? I hope one day soon this disease will be more widely known. If I can get it- a person who lives in West Texas (where according to CDC there is minimal or no risk) and who isn't outdoorsy in the least, then anyone can get it.

So I went today and got two herbs that are used in treating Lyme Disease: Samento and Cumanda. My local dr. told me about these herbs 6 months ago (when I was first diagnosed). I finally decided to give them a try. I'll be taking them with my current antibiotics. I start tomorrow. I remember him telling me that it's been shown people who take these herbs along with their antibiotics have a better outcome. I spent $80 on both drugs (1 oz. a piece) so I really hope they make a difference. Getting sick sure isn't cheap!

I need to get this out!

2007-12-15T20:39:00.000-08:00

I've been holding in a lot of anger lately. I'm just so mad about how things are going. I'm not feeling very good these days. I'm just sick of it. I mean really sick of it to the point I just want to scream!

I always think in life that every decision turns you into different paths. Even the most miniscule ones, though most don't change your life that much. I think I went down a wrong path when I went to the Louisiana doctor in August.

I was doing so good on doxycycline (what my local doctor prescribed). I told the doctor that, but he insisted that I should try Zithromax since doxy is known to cause light sensitivity and it was in August. If I would of just stuck with the doxy for longer, even upped my dosage maybe I would be better now. I was only on it 3 weeks and was already feeling dramatically better. Why did I chang?!?!!?!?!?!?! I guess I'm mad at him and myself.

Then when I went back to doxycycline in October, it didn't do ANYTHING for me. How disappointing. I'm thinking the bacteria became resilent to the doxy since I stopped it before. AGHHHH, that makes me so mad.

I'm on Biaxin and Omnicef right now. I've been having some scary symptoms with my heart. Biaxin is in the same family as Zithromax. And when on Zithromax I had occasionaly heart palps, chest pain, and uneasiness feeling in my chest. So maybe this is just not a good drug for me. I'm going to call my doctor about this because enough is enough. I'm sick of being scared. I can't do it anymore. I won't. I need to take my health into my own hands.

Scary Stuff!

2007-12-13T13:47:00.001-08:00

Tuesday night I had a very scary thing happen. We were at the gym and I was doing so good. Orginally I was just going to workout on the eliptical for 30 minutes, but I kept increasing the time. I figured I could do it for one hour, which is way longer than I usually do. My heart kept skipping beats, but I just ignored it. The flutterings only lasted a few moments, so I really wasn't that worried.

I should of listened to my body and eased off, or stopped the eliptical all together. I was at 58 minutes- just 2 minutes away from my goal when my heart freaked out. I don't know how to explain it exactly. It started to beat erradically, almost like it wasn't fully beating, but vibrating in my chest. I was having trouble catching my breath and could feel my heart inside my throat. It was so scary.

I immediately went downstairs to sit in the dressing room. After 5 minutes my heart was still doing this. I finally went and found Matt and told him what was going on. I decided to sit out in the car to see if it would go away. It didn't.

This went on for nearly 4 hours. My chest was hurting so badly at one point I threw up. It's not often that I'm in bad enough pain to cause that to happen. I kept contimplating going to the ER. We were just about to get Holden up to go when the strangest thing happened- I got this really really bad pain in my chest and throat and my heart flip-flopped... then just like that it started beating normally. It as almost as if my heart shocked itself back into the right rhythm.

I know this incident happened for a few reason. #1 I pushed myself WAY too hard. #2 I was dehydrated. I don't know why but I find it hard to drink that much. #3 I didn't get very much sleep the night before. And #4 Tuesday morning I started a new antibiotic (Biaxin).

From now on I'm going to do just 30 min. increments at the gym. Like get on the eliptical for 30 minutes...then go do weights...then come back to the eliptical for 30 minutes. And I'm going to make sure my heart rate doesn't get up to high. Tuesday night it was at about 175 bpm, even going up as high as 180. That's really fast for a whole hour.

We're going to the gym again tonight. I'm kind of scared I'll have another episode, but I've decided if I do, we will go straight to the ER.

FRUSTRATED!

2007-12-09T21:06:00.001-08:00

I'm trying to stay positive about everything. I really am, but it is getting hard. I still feel pretty much the same as I did when I was first diagnosed back in June. That is so disappointing. I take my meds regurarly and have even started exercising.

Lyme Disease is a very confusing disease. There is no set treatment plan because every person is different. There are so many different combinations of medicines you can take. I guess I just haven't found the one that will make me better yet. I just am so confused... you have no idea.

I'm also on the fence about my doctor. He is in Louisiana (10+ hours from where I live). My first visit with him back in August went so well. But since then things have gone down hill. First off I really don't like his office staff. They are cold and unsensitive. It's like talking to robots. When I call and leave a message no one ever calls me back.

I have a phone consultation tomorrow. I'm really hoping everything goes well.

I don't know what else to say. I had a lot on my mind, but I just feel so tired right now. I'm upset about so many things. I wish there was a magic wand that could make me better because I just don't know how to get better. What I am doing now is not working.

just an update

2007-12-02T20:10:00.000-08:00

I'm just now getting over a cold I've had for about a week. It was kind of weird getting a cold because I haven't been sick like that in over a year. Yeah, no kidding. When you have Lyme Disease your immune system usually goes on overdrive so you usually don't get sick with other stuff. Maybe my immune system is becoming weaker. I don't know.

All in all I'm feeling okay. Haven't been having any heart palps (knock on wood). Just been feeling normal for the most part with the occasional lightheadedness. I have a phone consulation with my doctor next Monday.

Well that's about it, just thought I should update.

Oh and just for my own personal note last Thursday (29th) I started taking 400 mg. of doxy. Before I found that hard to tolerate, but so far so good.:-)

Waiting to go to bed...

2007-11-11T21:23:00.000-08:00

Well I was laying in bed and it dawned on me that I forgot to take my medicine. I usually take it around 9. So I got up and took it... Unfortunately you have to wait 30 minutes before lying down. I don't know why exactly, but that's what the directions say. So I'm trying to pass time and thought I would update my blog.:-)

Let's see...

Not a lot of new stuff going on. I was hoping by now I would be feeling better. Last time I took doxy after only 2 weeks I was feeling significantly better. I still feel lightheaded a lot. I feel very tired almost like I'm in a fog.

Oh well, I'm sure I will improve in time. It's just hard to be patient!!

Another thing that has been on my mind are Christmas trees. We've always had a fake one. It's just easier that way. However I never really thought about ticks living in real Christmas trees. So anyone who reads my blog PLEASE take that into consideration when deciding on a real or artificial tree. I know the real trees are nice, but it's not really worth the risk in my opinion.

Had an appointment last week.

2007-10-23T20:38:00.000-07:00

It took awhile for me to get on here and talk about it. Just been busy and tired, mostly tired. Well the appointment was somewhat of a disappointment. First of all I get to Louisiana and find out that my doctor is not there. This was my nightmare come true. I had thought a time or two before that it sure would suck if I went all that way and my doctor wasn't there.

I had the choice of seeing his assitance or rescheduling. Since we didn't have much time to burn and the receptionist wasn't even sure if he'd be there the next day, I reluctantly agreed to see the assistant.

Now if that wasn't bad enough we waited and waited and waited some more. Seriously we spent well over 3 hours waiting. The assistant was nice enough and seemeed to know a lot about Lyme Disease, but still it wasn't the same as seeing the doctor. Plus he only talked to me for about, umm, 15 minutes or so. That's a heck of a way to come, not to mention the waiting time, for 15 measley minutes. So I was a little peeved, to say the least.

The assistant switched me back to what I was on before... the combo my doctor here where I live had put me on. I'm happy about that but a little irritated at the same time. So basically I might of let 2 months of treatment go down the drain. I was feeling great on the doxycycline before, but when I went to the Lousiana doctor I was switched to some different meds to target Babesia. (Which I'm not even sure I have.) So for all I know I just have Lyme Disease and let 2 months go by, since we were focusing on Babesia. Ughhhh! That's is complicated to explain so sorry if it doesn't make sense.

This weekend I thought a lot about if I wanted to go back to this doctor. I decided to give him another chance. I feel if I just saw the dr. where I live I would have to be my own doctor. The doctor here knows some about Lyme Disease (which is more than I can say about most doctors), but he's not that experienced. I have more confidence in the LA doctor. This experience last time was TOTALLY different from my first appointment in LA.

Last time:
My doctor was here
He made me feel hopeful
seemed very condident that I would be completely normal again
he even talked about me having more kids (if I wanted) in the near future
plus he has/had lyme disease so he can relate

So I think I will stick with him, for now.

So it's been about a week on Doxycycline and Flagyl combo. I feel very sore which is a good sign. It means that the bacteria is being killed off and toxins are being released, thus I'm feeling sore, more tired, ect. It's kind of like when you're pregnant and the nauseous feeling is somewhat reassuring because it means the baby is thriving. So it's not a lot of fun, but it is a good thing.

slacking BIG time

2007-10-02T20:55:00.000-07:00

I can't believe I failed to mention Holden's test results came back!!!! I'm sure you can guess by my exclamation marks that it was NEGATIVE!!! Yay.. I'm BEYOND relieved.

Quick Update

2007-09-23T09:13:00.000-07:00

I'm doing okay. I'm taking my antibiotics and tolerating them pretty well! I've noticed my achiness getting a little more painful. First thing in the morning it's the worst. I have b-12 injections that are supposed to make that better, but I'm such a chicken about doing that! I need to get Matt to give me an injection today. Last time he did it (which was over a month ago) it hurt soooooooo bad. I don't know if he hit a muscle or what, but it was painful. Prior to that it had never hurt, so that kind of freaked me out. We still haven't gotten Holden's test result. I'm hoping we'll know by early next week. I'm so anxious about that, but I try not to think about it. My birthday is Wednesday, so I'm hoping I know before then.... and hoping that it comes out NEGATIVE. That would make my day, week, year!!!

Down in the Dumps

2007-09-15T17:43:00.001-07:00

I feel very depressed today. I started back up on my antibiotics today and I feel horrible. I guess that is a good thing, but right now I feel sad. I have no energy and I feel terribly nauseous. I'm so sick of feeling wiped out. I just want to feel normal. I feel soooooooo bad for Holden. I can't even hardly play with him. I am just so tired. I've been sleeping in so late in the morning. This morning I didn't get up until 10:30!! Yikes.

I'm sure this depression will pass soon. I just felt like writing about it because it seems to help when I put my feelings into words. I know things could be worse and that thought really keeps my head up. I read about a boy named Dustin who had lyme disease. It was so debilitating (sp?) that he had to stop going to school and be home schooled. He was 8 when that happened and he is now 11. I can't imagine how hard that would be. I try to think about him when I'm feeling down. His Mom posted on a message board I go to. She said that he never feels sorry for himself and that he doesn't get discouraged. He just keeps on going, keeping his head up. I admire that and strive to be more like him. Here is Dustin's website http://www.caringbridge.org/visit/dustineckert.

Back at Square One...

2007-09-12T20:53:00.000-07:00

That's kind of how I feel. Since Friday I've been having unsettling, scary symptoms with my heart. Sunday and Monday night it was so bad I only got about 4 hours of sleep.

So I called my doctor yesterday and he said stop the antibiotics for a few days. I hate doing that, but I guess I have to. I've been off of them for about a day and can already notice a difference. I feel very lightheaded and am having some serious vertigo.

I had an appointment with my local doctor today. It went well. I told him what was going on with my other doctor and thankfully he agreed with pretty much everything he is doing. I'm glad to have them on the same page.

I'm going to start back up on the antibiotics on Friday. Plus I'm going to buy some natural herbs called Samento and Cumanda. They are supposed to be "natural antibiotics". Can't hurt, right?

My dr. told me to take benadryl and large doses of vitamin C and it should help make me feel better. It definitely has helped with the sleeping department. Last night I fell asleep quickly and slept all through the night!! It was nice.

Just some random things..

2007-09-09T21:04:00.000-07:00

I can't sleep, so I thought I'd update this blog.

*I'm really noticing the neorological symptoms of Lyme. For instance, earlier this evening I couldn't think of the phrase 'chill out'. I was going through all of these other words: chill up, chill over, chill down... Then finally the word came to me. Weird!

*I feel a little down tonight. I can't sleep because of my heart. It's doing all kinds of scary things. My chest feels heavy, I'm experiencing a dull pain in my chest, and my heart keeps fluttering. Oh and my arms and legs are going numb. I just never know how much I can take.. On days like this, I'm always comtiplating going to the ER. I'm just scared I'm going to push it too much.... like my heart is going to give out. That is scary.

*It's not normal to have these thoughts during the day. When it's just me and Holden, I worry what will happen if I do lose consciousness.

*At the store this evening my fatigue was horrendous. I was having to fight to keep my eyes open. I've been experiencing fatigue like that a lot.. usually only when I'm out of the house. I guess because I'm walking around? I just feel like I'm going to fall asleep any minute.

I'm tired!!!!!! I wish I could know what to do. Sometimes I feel so lost.. like I don't know who to trust. I don't know what path to take. What if the meds I'm taking aren't the right ones? What if I am getting worse? Ughhh.. I feel so sick of ALL OF THIS!

I just yearn feel 100% better again. I want that SO BAD.

Paranoia

2007-08-31T17:05:00.000-07:00

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

2007-08-24T17:44:00.000-07:00

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.

2007-08-21T20:01:00.000-07:00

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.

2007-08-16T18:20:00.001-07:00

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!

2007-08-10T02:58:00.000-07:00

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?

2007-08-09T14:04:00.001-07:00

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

____________________________________

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)

2007-08-05T15:40:00.001-07:00

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...

2007-08-01T14:27:00.000-07:00

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.

I'm so very blessed.

2007-07-31T20:35:00.000-07:00

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 babycenter.com. 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

2007-07-31T11:55:00.000-07:00

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... :-)

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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.

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

2007-07-27T14:25:00.000-07:00

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.

11:11

2007-07-24T16:08:00.000-07:00

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.

I WILL get through this.

2007-07-14T19:59:00.000-07:00

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.

Come on August 13th!!!!

2007-07-13T18:40:00.001-07:00

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.

So Much Anxiety

2007-07-09T14:00:00.000-07:00

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?

Support

2007-07-08T20:41:00.000-07:00

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.

My Test Results

2007-07-05T07:32:00.000-07:00

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.

Still hanging in there...

2007-07-04T14:24:00.000-07:00

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?

Better Day Today!

2007-07-03T16:31:00.000-07:00

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!!

HARD

2007-07-02T10:28:00.000-07:00

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.

Where do I start?

2007-07-01T14:18:00.000-07:00

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.