And so it begins....

Hello! Well, this blog post is going to contain a LOT of information. So, I am just warning ya! :) Today was a big day for us as I had an appointment with my Lyme doctor, but I also want to give you an update on my last treatment round and inform you about Lyme Disease Awareness. So, let's get started. :)

First, I will give you an update on my last treatment round. This was the first time I took Zithromycin and also two days of Flagyl. The pain and fatigue were not actually as bad as my last treatment protocol. I was a little surprised. However, we had a lot of other things that got a bit worse. I took the drugs on Tuesday, Thursday, Friday and Saturday. On Wednesday, I developed what a lot of us know as "air hunger". It is not an asthmatic reaction, but is caused by a co-infection that is called Babesia (ticks carry this infection along w/ Lyme Disease). It attacks your red blood cells and depletes oxygen from them (that was the explanation from my new doctor). So, for about 36 hours, it felt like I couldn't get enough air. By the time it let up, I was pretty exhausted. Another thing that we noticed by Sunday was a decline in my cognitive ability to complete sentences and thoughts. This is so hard for me as you know I LOVE to talk. Brian noticed a quite a change from Tuesday to Sunday. I would start sentences and have no idea how to finish them. I was talking about our puppy Toby and how he had deodorant...I know... crazy huh!! It's so scary sometimes, but I have to focus on Christ and know that He is in control. The good news is that the farther I got away from my treatment round the better it got. So, obviously it's a side effect of the treatment that we will have to get used to. As far as my sensitivities, we didn't really notice any improvement and in someways, they got a bit worse. However, the Zith is fighting the bacteria, so it's to be expected. I am going to continue on my current protocol for now until we switch up to IV.

Yep, you just read it. After talking to my doctor today, she informed me that after looking over my case and speaking with me about my last reaction to the antibiotics, that I will need about a year of IV therapy. This was VERY hard to swallow. I guess, we always knew that in the back of our mind that it was possible; however, we were hoping that we wouldn't have to resort to this. However, after multiple doctors telling me how sick I am, it's time to face it. IV therapy will be EXTREMELY expensive for us. Insurance will most likely only cover 30 days and were not sure they will even do that. As you might already know from some of my old posts, there is a current battle in America: Patients and Lyme Disease Physicians against the IDSA (Infectious Disease Society of America). The IDSA is the one who develops treatment protocols on how to treat diseases and insurance companies treat these like the bible. Unfortunately, the IDSA refuses to see the light and accept that Lyme patients remain very ill after 30 days of IV treatment. Praise the Lord that we have Lyme Disease physicians fighting to do what is right and to treat patients correctly with long-term therapy; however, it puts them on the front lines and most of them have to battle daily. So, insurance companies choose to side with the IDSA because it's cheaper. It's SO SAD. This disease affects people on so many levels. The IV treatment is SO difficult to get through, but at the same time many patients go broke paying out of pocket to get well.

May is Lyme Disease Awareness month. As a graduate project and also to help raise Lyme Awareness, I created a video about my journey with Lyme Disease and also the journey of so many of my dear friends. It is my prayer God will use this as a tool to impact others and to gain support for a suffering large community of patients. Tens of thousands suffer from the disease and are fighting for their lives physically, emotionally and financially. Please watch (just click on the title below).

Lyme Disease, A Journey

So, how can you raise awareness? Here are some ideas for you!!!

-You can spread the word about this disease. Please feel free to use my video above and send it to people using every avenue possible! Here is the actual address that you can copy and paste in an e-mail or even on facebook: http://animoto.com/play/9hJZWPFBIi51BcbPnkFD1Q

-Please be praying for all of the Lyme Disease patients. Please pray for healing and that research would be done to help find a cure and to develop better medical tests so that detection of the disease can be easier and faster! Please pray that God would do a miracle and cause the IDSA to change their guidelines so that insurance companies would cover the cost of treatment instead of patients having to pay for the cost of medical treatment ($5000-$50,000) out of pocket. Please also pray for the physicians who treat this disease correctly. They are battling every day, but they have such a heart for their patients.

-If you are on facebook, you can change your profile picture to lime green (a lot of my friends have just used photoshop to paint their picture lime green) or you can get a pre-designed profile picture from one of the Lyme Disease groups (e-mail me and I can give you instructions).

-Finally, you can tie a lime green ribbon around your tree! One of my friends has started "Paint May Lyme Green" and it has caught on and will be nationally recognized. We are praying that every city in the United States will be covered in lime green so that this disease will be ignored no longer!

So, as I close, I would ask you to also lift up a prayer for Brian and I. The news that we received today was very hard to take even though we were somewhat prepared. We have a long and tough journey ahead of us both physically and financially. I won't be starting IV therapy until my doctor feels I am ready which will be a couple of months. However, once we do, it has the potential to cost $2000 to $3000 a month. As I do my IV treatment, it will not be good for me to be by myself because of how allergic I am to things and also because the therapy is so intense and can be somewhat incapacitating. We don't know very many people down here, so this is going to be a challenge. We would just appreciate your prayers. God has always provided for our every need and we know He will continue to do so. Please pray that God would reveal himself to us in a new way. We really need it! Also, please pray that I will be able to take the much needed supplements and drugs to help prepare my body for the big race (that's what I like to call it).

Thank you for all of your support. I know I end like this on every e-mail, but it is something we treasure. We couldn't walk this journey without our Heavenly Father and all of you! Know that you are loved with Christ's abounding love!