Sunday, May 30, 2010

One Last Hoorah!

So last Thursday I had a doctors appointment with my llnd. We did it over the phone which was nice. Her price is the same for the appointment but I save on gas and time off. The results are in from all of the co-infection testing. To get to the point and not make this to complicated my blood work showed no signs of having babesia but did show signs for erlichia. Like so many things in life, and lyme, nothing is definitve, 100%, without a doubt. My llnd is not convinced that I don't have babesia but we aren't going to worry so much about tackling that first. Some of the lyme antibiotics will also tackle the erlichia which is good. We talked about the results, how I had been feeling, and then the big question...Do you think you are ready to start antibiotics? It is almost a trick question. I am ready because I want to get this over with as soon a possible. I am not ready because I am afraid of what may come. It's almost like I should be hoping to feel absolutely miserable because that means the medicine is working. How can you hope for that? So yes I am as ready as I am going to be. The decesion is to start on two different medications- doxycycline (from the tetracycline family) and tinidazole (in place of the more commonly used flagyl). I have to start the doxy slow because I have been herxing with just supplements so the doc pretty much says be ready. When I'm on full dose doxy it will be 400 mg a day. That is double a standard dose. My llnd explains that only 200 mg merely stops the nasty spirochete from growing but doesn't kill it. Because there are so many strains (if thats the right word) of lyme, it can take on different forms (ex. cyst form), and it can only be killed during certain points in its life cycle you have to tackle it from multiple angles with multiple medications. That brings me to use of tinidaozole. This is being used in place of the more commonly used and less exspensive flagyl. However tinidazole is much easier on the gut. With the amount and timing of meds, things like trying to control yeast issues and keeping your stomach as happy as possible become a priority. Lots of probiotics and a totally new diet. I am so blessed to have a llnd that believes and is knowledgeable in the natural things plus the antibiotics to kill this disease. She just released a book a few weeks after I became her patient called the Lyme Diet that tackles everything you need to know to make this process go as smoothly as possible. The only down side to that is I am a junk food junkie to the max. I have always had bad eating habits and I love and usually crave junk food (mostly the sweet stuff). So to give up things like dairy and try to go gluten free is certainly not the easiest thing for me to tackle. Trying to do that, plus eat enough so I can keep up energy, and squeeze it all around my med schedule and what I can eat when...I need a miracle. The other thing I wanted to mention before I sign off for now (I have a bunch of topics I could cover right now) is that a 1 month supply of my doxy, which is 120 pills, from Target without insurance $20. Thats is $20 bucks. The Target pharmacy is one of new favorite things for a lot of reasons. I figured my approximate total pills with meds I was already on, supplements, new meds...ya about 28 pills a day. I got one of those $10 pill organizers that holds am, noon, evening, bedtime for each day of the week. Crazy! All of those pills doesn't include my liquid and powder supplements. My husband said I'll be full from the pills and wo't have room for food. Let's hope he's not right. So now onto why I titled this post "One Last Hoorah!". That would be because I am in this odd state of mind just kind of numb today as I process everything and what the future may hold in the coming weeks with how bad this could get. I gave in to the craving for something sweet knowing I really need to change the diet starting, oh yesterday, or last month. But now the real stuff is coming so I sat in my car this afternoon, by myself, after running into the grocery store, and consumed a piece of triple choclate mouse cake. Margaritaville was on the radio and for a moment I wished there was a way to be in a hammock, on the beach, numbed by a good margarita, while fighting this stupid disease. Back to reality one final, kind of pathetic, hoorah and now the real battle begins!

Wednesday, May 19, 2010

Not Sure What to Say

I figured I would become a blogging maniac since I almost always seem to rambling on about something. I'll admit sometimes the on-going chatter is only in my mind but it seems to be endlessly coming from me in some way. I attempted to do a little update the other night but knew I should be really going to bed early. I got a few things started and just decided to not bother and try again another day. So here I am, late afternoon, not at work because I had the day off for a field trip with my daughter. I really have some things around the house to do since I am not feeling to bad but I wanted to put a few minutes in to clear my mind and make sure I am keeping up somewhat on this journey. Knowing my last post was about a week into dealing with this diagnosis and what I was feeling and thinking I don't think I can say much has changed. I did go ahead with the rest of the blood work to test for co-infections that my doctor wanted. I did start something new. I did take the positive test to my primary care doc...Okay so let me go over that. Unfortunately, just as I thought my pc doc really didn't want to have any of it. He say the positive test results, still feels I don't have it and even if I did it's not a big deal. I mean he basically asked me or stated something along the lines of "You know you don't have anything seriously wrong with you, right?" My response was really just a blank look which he responded "I guess you don't fully believe that..." and continued to expound on why I have nothing seriously wrong with me. It took all I had to not explode in anger or burst into to tears or both. The more I thought about it, maybe he is right and I am wrong. Why on earth should a women in her early 30's who has been fairly active her whole life and has no crazy medical history be concerned when the last 6 to 10 years of her life, most specifically the last 2 1/2 yrs have gone something like this...dizziness/lightheadedness that would come out of no where, ADHD diagnosis, not able to fall asleep or stay asleep, fatigue that has just gotten worse, heart palpitations, shortness of breath from things like climbing one flight of stairs, heart rate that has exceeded 270 bpm at least once and spontaneously jumps to over 200 just because, muscle aches for no reason, numbness-tingling-weakness in arms, legs, and face, nerve pain-burning and pins and needles, asthma diagnosis, anxiety and depression diagnosis. Oh that's right it is all anxiety and I have done it to myself. No of those symptoms really mean anything. Are you flippin kidding me? This is where my ability to hyperfocus, talk a lot, and research online and through books plus (and most importantly) the help of God paid off. I know in my heart that LYME is what has been making me so sick. I am just dumbfounded that so many in the medical community are unaware and/or uneducated regarding this disease and that on top of it they won't admit it. Instead of telling me they have never treated anyone with Lyme, they haven't studied it much in recent years, they are not comfortable treating it...anything that would be an honest answer they would rather make me feel like I'm losing my mind, making things up, or that it may be real but don't worry, it's not going to kill me. Put your pride and financial gain aside for a minute and go back to treating patients the way you should. Don't throw medication at me that will mask or reduce my symptoms and be satisfied with the fact that you don't know why I have the symptoms to begin with. You don't have to believe in God to at least consider that our bodies were designed to function a certain way and when symptoms appear that were not there before it is a sign that something is not working right. Shouldn't you want to fix that as a doctor? If I were a doctor I would want to help people stay healthy to begin with and help them heal and get back to being healthy when something was wrong. I guess this is just part of the huge mess our "health care" system is in. Doctors getting bonuses from drug companies for using their drugs...Insurance companies making decisions that could save or take a persons life based on how much money they may lose. Guidelines for diagnosis and treatment of diseases being written by doctors who have something financial to gain or only using papers written by themselves or their universities when writing these guidelines. It is a very sad and disturbing time we are have to take charge of your own health. The doctors and insurance companies for the most part don't have your best interest at heart.

Thursday, May 6, 2010

Week 1

I've officially completed my first week of being a "lymie" or a "spirochick". Lymie is how a lot of people with lyme disease refer to themselves. Spriochick is a name I've seen a few times for some girls with lyme. The name comes from the nasty little spirochite bugs that are making us so sick. I still feel like I'm caught somewhere between a state of numbness and reality. The image of the test results seem to run through my head "POSITIVE"! Where on one hand I am so thankful I am not crazy and this isn't some pyschosomatic thing my brain made up...I'm not going to lie, I'm angry and I'm scared. My whole world is being turned upside down by some little bacteria just causing havoc all over my body. That inturn affects my marriage, my kids, my family, my friends, my job, my finances, etc...If this was just a matter of taking some antibiotics for a few weeks and getting on with life then no big deal. Ths disease has messed with me so long I'm not even well enough to start antibiotics without an almost guarenteed trip to ER. Add to it the fact that I look normal. If you saw me walking down the street or driving by you probably wouldn't have the slightest idea the pain and problems that are just begining to show themselves. I know though, my family has some idea. When my husband looks at me funny during church because the involuntary ticks and muscle contractions are making my whole are or leg move. I just have to shrug my shoulders. No one can tell right now when my face goes numb but I have to look in the mirror to see if paralysis has set in. I know when my heart has jumped up to 200 + beats a minute or I am out of breath climbing a flight of else may even notice. To think this is just the begining. I know I have to fight through this and take the medicine to get better. It's not easy when everyone says it's worth it in the end but you are going to go through living hell first...With the help of God, the loving support of my family and friends, the knowledge of my doctor(s), and my will to be here for my kids- I will get through this. I will survive and be a stronger person for it. I am hoping through my good days and bad that I can share what this disease is like, be able to learn something about myself, and provide support to others along the way.

Saturday, May 1, 2010

The Rollercoaster

I didn't think I was going to jump on the typical roller coaster of emotion that people normally do following a serious diagnosis. I guess I thought since I had done all of this research about Lyme and had just wanted an answer so I felt like I could move forward, I figured I was going to be okay with it. Over the last few days I don't know that I have been okay with it. I don't know how I have been with it. In some ways I have been almost numb. I am definitely scared. I wasn't scared before but I am scared now. I have a million questions going through my head that where I thought I had all of the answers. I knew so much already now I feel so unsure. I am realizing that the reason I have been tested to my breaking point so many times recently and had gotten to a place where I felt I couldn't take anymore and had to learn to totally rely on God was for this moment. I have no choice but to rely on God to carry me through this. I have to rely on the fact that God's strength and not my own is the only way I can survive and fight back. He has a plan in all of this and all things are used for good. I just have to allow His glory to shine through this time and let Him carry me.