Friday, March 25, 2011

Two Steps Forward, One Step Back

I know my title is backwards from what you would normally say but in my attempt to keep a positive attitude I decided that I very possibly have taken two steps forward and the last day and half is only one step back. I don't really need to tell you that my hyperactive crazy good feeling that came on Wednesday did not last.  I knew it wouldn't but I was hoping for some continued forward progress at least. Unfortunately in a matter of about 24 hours things kind of got turned upside down again. I can say though that I am handling it better. The ups and downs and disappointments that is. It's so funny how when you think you have learned your lesson or that you can't grow any more God says, "Oh ya, watch this!". Okay God, I am trying to listen to see what lesson you have for me know. I will admit though, that it doesn't seem to take as much to get my attention. I am ready to see that God has something for me in much smaller things so He doesn't have to take a 2x4 and hit me upside the head like he did a little while ago. I would say that is progress.

So Wednesday was crazy in a good way as you already know. I was able to make it my daughters softball game, it didn't get rained out, she scored a run, and they won. Great evening! We get home, eat dinner and then Brooke (4) starts grabbing her ear and crying saying it hurts. She had tubes put in at about 17 months and she still has one of them in. Of course the ear that hurts is the one that the tube came out of a month or two ago. She was in a lot of pain. She has never complained about anything like she was that night. Just in tears over how bad it hurt. It was 10 and too late to take her to Urgent Care. She didn't have a fever just in a lot of pain. It was a long night to say the least. She woke up yesterday, still in pain, with a fever and then started throwing up. And so the fun began. Off to the doctor, full on ear infection, got the abx. The pain is subsiding a little and she is a little perkier today. She has continued to throw up though. This child has the worst time with upset stomachs in that she can go 24 hours without throwing up and then it starts again. Lots of probiotics to say the least. Hoping things calm down as the day goes on. I hate it when the kids are sick but I do love how cuddly they are. Unfortunately my wonderful feeling didn't last and I was in a fair amount of bone, joint and muscle pain. Plus I had some familiar pain that made me think I have/had an ovarian cyst. It wouldn't be the first time. Just what I need. Feeling a little better today though. I guess the blessing in disguise is that with Brooke being sick I couldn't work out.

I guess I need to back up and say I have been trying to get things back on track with a rough week last week and also with feeling better. I haven't done everything I should be doing on a regular basis, I admit it. Well I decided I need to start the physical fitness part of this recovery so I can build up some strength again before I get thrown back into my "normal" life. There is a gym really close to my house that is only $10 a month and no contract. I went in and checked it out on Wednesday and was so excited to sign up and go for my first work out yesterday. Well the sign up got postponed with Brooke not feeling good and so did working out yesterday. I guess with how I felt a little later in the day I guess that may have been a good thing. Let me just clarify my workout right now will involve walking about 45 minutes on the treadmill. I may do some lower body strengthening but can't do anything for upper body with my port. I realize this is just a little hiccup and I am hoping to sign up today and go tonight or for sure tomorrow.

To tag onto the idea of getting things back on track I have been of course trying to still work on the diet thing. It always feels good when we eat at home and eat healthy but sometimes life just seems to make that really tough. Last week was one of those times with softball 4 days, 3 of them nights which makes the family late on everything. Anyways, I have trying to do some more research on Lyme and different protocols and relapsing and hitting rock bottom and just everything. I am excited for my progress but as I kind of mentioned I am a little shocked I guess that things are improving. I guess the bottom line is I shouldn't question it and should just consider myself blessed that my treatment appears to be working. So many other people just don't seem to be getting better so it becomes confusing. I guess my mind set is that I need to do everything I can including everything I should have been doing but haven't to help my progress continue to move foreword. One of the things I have been considering is buying a portable FIR sauna. (Infrared Sauna) I have used one a couple of times and have liked it. It is supposed to be great for helping to detox and anyone can benefit from it. Now our friends bought a nice one and have offered it up for me to use. I still haven't taken them up on that offer and I don't know why. I am limited with my number of days I can do it with my port and I just haven't gone. I think having one at home I can do whenever I want and I don't have to drive anywhere would be the best. I know a few lymies that have them, and love them. The surprising part is you can get one for under $200. At this point, I think it is definitely worth the investment. So helping detox, working out, getting better on the diet...what ever needs to happen. My doctor also said he may be getting a coil machine which I can use. I'm not going to take the time to try and explain it all here but you can look up coil, Rife, or Doug Coil machines on line to see what it is all about. It has to do with different bugs, parasites, whatever, having their own frequency that they emit and if you send that frequency back it destroys them or something along those lines. Look it up if you want the real story. :)

Back to the ups and downs or forward and backwards I guess. My emotions were turned upside down and I was thrown for a little bit of a loop last night in regards to work. I will say that my leave without pay was approved until June 1 which is great. At the same time I am really feeling like if I don't get well enough to get back by then that I may be done. That is just me. That is adding to the pressure and my resolve to get done with this sooner than later. Some other things with work didn't go as I had hoped and just the way my mind works I took it very personally. I am very lucky my husband is so grounded and can offer my a totally different perspective. The tears didn't last long but I am still a little emotional from it all. I had finally started feeling like some of the stress and worry had left and I was okay with where things were headed. All of this kind of just rocked my stability and made me questions everything all over. I realized fairly quickly though that God is still in control. Me worrying about things won't change the outcome and is probably not good for me anyways. I think this is God's way of saying, hey don't forget about me just because things are looking up. It's not that I am not praising Him in the good times but I have a tendency to start relying on me again when things go good. Well God got my attention quick this time and I still need Him as much as I did a month or two ago.

To switch subjects a little, I will say I think I have decided against Germany. I am so glad for my friend who has had great results over there and I pray they are lasting for her. My decision comes after receiving some advice from a very trusted person, not having access to that kind of money, and starting to see some improvements. So for now, I will pass on Germany and continue here. I must remember what a miracle it has been this past year and a few months to get where I am. Just to recap...I was referred to Dr. Joni Labbe (a chiropractor/nutritionist) who said in our first 20 minute consultation she thought I might Lyme. Although, I chose to move my care, if it was not for her, I don't believe I would be where I am today. She is amazing and has an incredible practice. If you just don't feel good and can't figure out why I would highly recommend seeing her. Once I felt that Lyme disease was the correct diagnosis, I had done enough research to know I needed an LL doctor, which is lyme literate doc. Those doctors are hard to come by and hard to find based on the fact that they often come under attack for their treatment. I went through the channels to get access to the "super secrete list" and found there were only two LLMD/LLND's in San Diego. I chose the lesser known of the two and have been blessed by her knowledge and care ever since. Extra cool that she is a Christian. She in turn referred me to Dr. James Novak in Pacific Beach as a primary care doctor. This was after my pc at the time told me my positive test results weren't true, that I didn't have Lyme, or anything seriously wrong with me at all. So glad I stood up for myself. Dr. Novak has been incredible. In fact, he is so well versed in Lyme that he and my LLND are treating my Lyme together. He did my port and does my IV's. He is the one that ordered this latest and greatest test. So I have been blessed with two doctors that work together. I keep each of them informed on what the other is doing and they usually support each others treatment ideas. In fact I have a long over due phone appt. with my LLND next week. I can't wait to talk to her and see what she has to say on a couple of things. I will certainly keep you posted after I talk with her.

Well know that this post has gotten really long and I have bounced all over the place, you at least know whats up. Keep the prayers coming as I can use them. I still need prayers for healing, discernment, finances, and just listening to what God wants me to do. Oh ya, and to stop worrying. He is in control. Thanks for following along and sharing this journey with me. I always appreciate your comments and questions.

Wednesday, March 23, 2011


Yes I am using Charlie Sheen's word. Winning! It describes perfectly how I feel this morning. If you thought any of my other posts rambled on or bounced around you haven't seen anything. I am going to try to keep this short just because my brain is going 100 mph right now. It is a good thing. Not being able to focus isn't so good but overall this morning is great. I have not felt this way since at least high school. I honestly didn't think I would ever feel this way again. Even if it is short lived this morning, that is fine with me. Basically I am internally bouncing off the walls. I feel like I need to go run around the block or jump up and down. The energy can't seem to find an outlet. If I had someone to talk to this energy would be coming out of my mouth. You would probably wonder what I was on. There are a handful of people in my life that have had the "pleasure" of experiencing me when I have been this way. Sarah, Angie and one of my oldest and bestest friends in the whole world, Shauna. This feeling isn't sugar or caffeine related. I always said I was just high on life. I feel like I am in junior high again being my goofy self. I remember Sarah writing in our year book one of the things she remembered about our time in Jr. High was "Jessica's constant dancing". She was right. I was constantly dancing, just had the need to move. I still dance a little when a good song comes on. I would say there is no denying I feel like I am getting better.
I am not naive to the fact that I very well may relapse and I can't feel like this forever. In fact, last night I felt horrible. The fact that God has given me a little time to feel like this today though is a blessing. I feel like I could conquer the world. It actually made me cry a little. I don't feel like I am getting my life back. I feel like I am getting my first stab at life since I have had this disease for so long. Although I didn't feel horrible until later in my life, I realize that I have probably never felt as good as I could. I feel like I have to chase that down. Today has renewed my hope and gotten my really excited. This is just the boost I needed. This past week has been a little rough symptom wise. The lyme has definitely messed with my mood and had me on a roller coaster. I have had a short fuse with my family which I hate. So emotionally I have had some highs and lows and I know I still have a long way to go but I can't say enough about how I feel right now. Yay! I still need to rest and not over do it. I knew though that I couldn't let this moment pass without sharing it. You have stood by me as I have shared all of the tough times with this disease. It wouldn't be right for me to ignore the good. The power of positive thinking is something my husband tells me about all the time. I know he is right so here is to the good, however long it lasts. (Still internally bouncing off the walls. Love it!)

Friday, March 18, 2011

The Response from Germany

Let me start by saying this week has continued to be a tough one symptom wise. I still have some how managed to have this little improvement early in the day where even though I am tire I feel like I have had more energy than I have in a while. So that improvement has been sticking around which is good. Being my lyme cycle week though I have had an increase in my joint pain and been cold a lot. I have also had an occasional twitch and had a horrific headache. Now it is hard to say where the headache came from weather my back is messed up or what but Wednesday night I felt horrible. I haven't had a headache like that in a long time. Thankful it was gone in the morning. I have also had pretty awful stomach problems this week. They started probably Monday and are just starting to slow down. I ate and took my meds Monday and Tuesday but I didn't really take any oral meds Wed or Thurs due to how messed up my stomach was. I have been taking my probiotics like they were candy and taking activated charcoal. Finally this morning things are slowing down. I can't tell what the cause is which is always frustrating. Is it IBS type stuff that i have had for years although it doesn't hurt like that usually does. Is it one of the stomach bugs that has been floating around, is it medication related or just lyme related. Who knows. I am hoping I can continue getting rid of it today. I wanted to loose a few pounds but not this way.

Now onto the bigger news. I was able to get my labs faxed over and yesterday morning I received my response from Germany. I was nervous and excited at the same time as I tried to scroll through all of the attachments in my e-mail. The bummer was all of the prices were in Euros. I didn't know for sure it was Euros and when I did the conversion the first time I used DEM (I can't spell that out but I think you know what I mean -"d marks" ha ha) Shame on me for not being up on world currency. Well the D-Marks would have been better because the price was cheaper but then I realized it was Euros which was higher. Some people have been appalled at the price estimate I am about to share with you. I don't like it but I don't know if I am totally shocked. It certainly makes this a very difficult decision for me, or should I say us. Here it goes... For 21 days of treatment, room and board including 3 meals a day, and round trip airfare it would cost approximately $65, 000. Okay so that is a lot of money. I am not ready to just let go of the idea though. My treatment proposal doesn't get extremely detailed but covers lab work they would do, some of the treatments, general medications cost without naming meds, IV therapy etc...and I don't know, it just seems like where I want to go. There are a couple of issues that make this difficult besides the money. One is, my blood work says I am making improvement and two there are no guarantees Germany will do for me what it has for other people. I realize there are no treatment guarantees with anything but that is a big leap to go out of the country for three weeks banking on a big success. I have been blessed and with the cost of my treatment here and the way things are going I don't see us spending $65,000 out of pocket. At this point we don't have access to that kind of money. That is not say God won't make something happen but that is for Him to know. If Germany is where I need to be He will open the right doors. To try and set that amount of money as a fundraising goal seems a little crazy. Again I guess that is not really for me to decide. We could use some help to cover some of these expenses right now and I am hoping to figure out a couple of fundraising type of ideas. I guess the biggest thing we can do is just pray about it and seek God's guidance. I do feel so blessed with where God has led us so far on this journey as tough as it's been. I am not convinced we are out of the woods yet but only time will tell. I am really trying to keep a positive outlook but I also try to be realistic. I guess it really is good to hope for the best and prepare for the worst. :) There are days when I just know I have done to much or I am pushing myself to far. The thought of going to Germany and having 21 days to do nothing but focus on me and getting better sounds amazing. No housekeeping, taking care of kids, feeding the family, paying bills. As much as there have been times I have just wanted to check out of my life for a while I haven't been able to do that. Trying to find that balance of taking care of yourself and not just giving up on everything in your life is tough. My husband and I just had a big discussion on this. There have only been a handful of times where I have just been done and gone into hibernation. Most of the days you know I am alive and and around somewhere even if I am just hanging out on the couch. I push through pain and feeling sick. As much as I am vocal about not feeling good or about this stupid disease there is so much more that you don't hear. I try to not be a complainer and I have to say I feel I have done okay. I could do better but I do push through so much more than people realize. Anyways, I got off track. So with that being said- Germany or not, that is the question?

Tuesday, March 15, 2011

Update on Doctors Appt.

It's my lyme cycle week so my symptoms are a little worse than other days and I am super tired so I am going to try and make this short. I feel like a lot has happened and I don't  know that I am fully prepared to process everything but I am doing my best. Let me just stop a for a minute and ask that you keep all of those affected by the worlds recent disasters in your prayers. What a tragedy.

Although I am a little bit hesitant to admit it, I think I may be starting to feel a little better. My dad said he has definitely noticed recently just that I am smiling more and physically look a little better. This disease is hard to gauge so you don't know if it is the calm before the storm or what. In my case though, I may actually be improving. To my surprise, when I went in for my weekly doctors appointment, the doctor had just been faxed my Spirostat test results. I was expecting to have to wait at least another 3 weeks. The doctor hands me a piece of paper and says your blood work is lyme or co-infections shown. Now that shocked me quite a bit for how I have still been feeling and all I was expecting so see something. I think what I would like to have is another one of those Spirostat tests from 6 months or a year ago to compare. Since this is a different type of testing I don't have anything to compare it too. My doctor was pleased with the results. He said treatment must be working and we have managed to clear the lyme out of my blood. The lyme is not gone. I still have it hiding in some other places. But the progress is still good. The doctor did say there is no way to tell that the lyme is gone. So it does appear I will be dealing with this for the rest of my life. Still though we are making progress. Nothing will change in my current treatment. We will continue and hopefully in the next 3 to 5 months I will really begin to feel better. He won't do the IV for much longer than 8 months. So if I have not made significant progress we will have to try something else. He did say, when we get to the point that I am feeling much better that we will switch to some herbal stuff, colloidal silver, and do antibiotics for about a month every 6 months or so.

On the money side, God provided for us again and at the perfect time. The medical bills are beginning to come in. I had to pay for the Spirostat test, plus my part of the surgery, and now for the IV's. The great news is it looks like my IV's and weekly appointment will cost me roughly $95 a week. Less than what we originally thought so I can't complain. It is a lot less than what my other Lymie friends are paying so I feel blessed.

Last but not least I still am looking into Germany. With my test result in early, the e-mail with all of my labs has been sent over. Now it is time to wait and see what they say. Excited and exhausted. My husband and I have been taking in a lot of information lately and would just ask that you pray that God gives us discernment to sort through everything. You read good and bad, real and not, scam or best deal...on everything including disease, tests, and treatments. We just want to do what is right. Thanks for checking in. Will keep you posted on what happens with Germany and how I am feeling. have a blessed day.

Monday, March 7, 2011

Considering My Options

I really want to post an update but the task seems daunting. My brain fog and other symptoms continue making it hard to concentrate and use the right words. I will try though to clue you into what has been going on in the past week or so. Nothing has changed with my treatment. Symptoms are really the same. I am still waiting to do that new Spriostat test. I am praying the kits came in and we can do it in the morning when I go in to get my port accessed. I am really hesitant to say that I may have noticed a tiny improvement or change in energy. I am still very tired most days and have been sleeping more during the day than I was. However, there have been a  handful of mornings that I have been able to push through some tasks before really getting tired. I am hoping that this will last and continue to improve. My ears have been ringing a little more, I definitely have more muscle spasms, and shortness of breath. On a bad note the creepy crawly weak feeling in my arms and legs is back. Hate it. It makes me want to chop my arms and legs off. It is such an uncomfortable feeling. Anyways, I do have something kind of new and exciting to bring up.

I am looking into another treatment option after a friend of mine has seen dramatic improvements. For starters it involves going to Germany. I don't have a ton of details for you but I will go over the little bit I know. I would be going to a place called Privatklinik. It is run by Dr. Ursula Jacob. She is very well known. In the US she is probably most well known for treating Farrah Faucet's cancer for a while. The actual treatments I would go through would be really individualized for me. I know it would involve a lot of IV therapy, hypathermia (high heat to kill spirochites), and less antibiotics. They have some great testing that they can do to really pinpoint my specific problems and they make my meds and supplements for me based on what I need and will respond to. I would probably stay in the "apartments" across the street. The great part is...2 to 3 weeks and I get to come home. Now being away from my family for 2 to 3 weeks would be no small feat. However, the thought of being gone, with nothing to focus on but myself and getting well, and coming home in 2 to 3 weeks with dramatic improvement is beyond exciting. The biggest question will be cost. My plan of attack from here is to gather all of my labs, this includes waiting for the results of the spirostat, and sending them over to the klinik. They will review my medical records, design a treatment plan, and send me a cost estimate. It is very hard for me to be patient. I wanted to send them medical records as soon as I got off the phone with one of the Doctors. Just tell me a price now! But as I have been learning about patience through this experience, I know I must wait until I have all of the information. If this is the road God wants me to go down, then I will trust that He will open all of the right doors including making the finances available. Please keep this in your prayers. It is very disheartening when almost all of the lymies I have met are well into treatment months if not years and not getting better. My friend that told me about this place in Germany, is actually there right now. She tried for 2 years to get better in the States. She goes there and in about a week is seeing drastic improvements. She can't say enough positive things about what she has experienced so far. I would much rather intensely face this disease for a few weeks and then follow up then be involved for treatment that rules my life for years. So I guess that is it for now. Oh ya, and one more thing my last CD-57 was up to 51. So it has improved a little. God has continued to bless our family during these trying times and we are so grateful. So until next time...