Thursday, November 8, 2012

Do you NUCCA?

The past few weeks have been another roller coaster of ups and downs. They have been physically and emotionally exhausting, filled with fatigue and some down right scary moments one of which almost sent me to the hospital. In the end though, they have been filled with hope and I feel like things may be finally turning around. 

I can honestly say that the decision to change my diet ( really our diet as a family) and begin exercising again have been very important decisions on this path to getting better. Although I really wish I would have made those changes long ago there is no reason to dwell on the past. I didn't believe I could really alter my craving for junk but it has happened. I do green smoothies, juice and eat a lot of cooked vegetable almost daily. Most of which are organic. For me juicing and cooking my vegetables makes them much easier for my body to get nutrients out of. It has been so taxed that digesting raw food can take too much work. I have gone almost gluten free and have reduced grains as a whole by close to 75%. I try and eat sprouted grains instead. I have reduced dairy by 50 to 75% and most of what I do consume is RAW milk dairy. I definitely don't feel good when I eat the junk or the gluten. Sweet things usually taste to sweet now and I actually crave vegetables. Who knew. 

I can see some improvements in my body from just the 5 or 6 weeks I worked out with my trainer. It is a somewhat difficult transition trying to workout with out him but I'm doing it. The things he taught me about functional exercises just make so much sense and seem to resonate well with my body so I look forward to seeing how strong I get over the next few months. I will never view exercise the same again. These changes with diet and exercise are definitely changes that I will stick with for the rest of my life. 

I have had some blood work run recently to try and figure out some of the missing pieces to the puzzle. As has happened so often before the test results come back normal. I know it may sound weird but it is really frustrating at first. You get tired of hearing that "they" don't see anything wrong when you know full well something is not right. This time it was regarding my adrenal glands and hormones. What I had forgotten though is the tests that were done were really basic and not the most reliable tests. In fact I am starting to rely less and less on what the blood work says. Just because the blood work comes back normal does not mean things are functioning as they should be. 

I feel like I've been at a crossroads with treatment for quite some time. I was hoping that the blood tests were going to point us in a certain direction but that didn't happened.  I weighed my options and decided that I would try a local chiropractor that I had heard some great things about. I had been to chiropractors before, in fact the doctors from Hansa are both D.C.'s.  This doctor though uses NUCCA and that was something I had not tried. It was perfect timing too because anther Lyme patient was inquiring about NUCCA and I heard a couple stories of people benefiting from it.   Besides being local, the office also had a payment plan that worked for us. Really I barely have the funds to continue with my accupuncture so I needed something I could afford. What has happened over the past two weeks of seeing Dr. S has been huge and given me such hope that I am on the right track. 

NUCCA stands for the National Upper Cervical Chiropractic Assocation. Without going into to much detail because I would probably screw it up, NUCCA involves adjusting the very upper cervical spine area with minor pressure. It is not the typical snap, crack, pop visit and it focuses on an area that no one has ever dealt with. My first visit was a sit down with the doc to go over my history, my complaints, concerns, and few minor tests and x-rays. After that the doctor let me know that he thought he could help me. As much as he wanted to start working on me right away he knew it was important to review everything first. I scheduled a followup for the next day. The second appointment the doctor said confirmed that he really felt he could me. He said in addition to the NUCCA he would be doing bio-cranial work as well. He laid out a treatment plan and we agreed I would see him twice a week for 6 weeks and then once a week for 6 weeks. After that we will figure out how often I may need to see him. He did say I am a very complex case but he likes a challenge. What a surprise. We jumped right in with the first adjustment which only took a matter of minutes. He finished with a couple more followup x-rays. As much as I don't like to have the x-rays they ensure that he is right on with his adjustment. During these first two visits the doctor explained a little bit about how NUCCA works. Basically when things in the upper cervical area get out of alignment it causes problems with the information going to my brain. Bad information going in, means bad information coming back out to my body. I'm very twisted and have a lot of misalignment. The doctor almost laughed and just said no wonder you are tired all of the time. You are so twisted that your body is fighting against it self, against the muscles to try and put you back into alignment. It really was making sense. At then end of my session I was put on the MRS mat. I won't go into that right now but you can look it up. Its magnetic therapy that helps with pain and all sorts of things by kind of acting like a whole body battery charger. A lot of people with Lyme use them and so I am excited to have the chance to use on regularly for a while. I have found that I am very sensitive them which is normal in my condition so I can't do to much time on the mat.

My next visit started off with some muscle testing and energy work. The first thing he says is that my adrenal glands are definitely weak and not functioning as they should. My blood work said my adrenal glands were find which I know in my heart was almost impossible due to how long I had been sick and everything I had dealt with. Next he picked up the fact that I had a virus in my intestine. He worked his energy medicine and put me on a herbal adrenal gland remedy. I'm almost in tears at this point and he was so excited he was almost jumping up and down. He said he could just see things unfolding for me and that we were really gonna get some where. Hope. Dr. Spinato gave me hope. Everything he said made so much sense. It also matched up with what Hansa told me in January. Adrenals and viruses were my two biggest issues. Two different doctors, in two different parts of the world, not knowing what each other said and using slightly different energetic testing methods came up with the same answers. So cool. We did the bio cranial therapy next which is like a big stretch in the neck and upper cervical spine to again help open up the communication to/from the brain. I jumped on the mat and was out the door. With in 45 minutes of my appointment I started getting sick to my stomach. I was "sick" to my stomach the rest of the day and the next. In addition I had a really bad episode of dizziness, heart, just feeling really bad and weird to where I considered the ER. I had been here before though and knew the ER wouldn't help. Anyways I figured I must be having a healing crisis. This is a little different in that herx I have talked about before. This is because my body is kicking in a fixing things instead of a die off of bacteria. I didn't enjoy it by any means but took it as a positive sign. The following appointment the doctor agreed with my thoughts that it was a healing crisis. He was glad I knew enough to just push on. So I have continued to have some healing crisis this week but am taking it as a positive sign.

Here a quick glimpse of what my treatment involves right now. I'm on 4 different antibiotics, a number of supplements (vit d, Co-Q 10, magnesium, adrenals, etc...), silver, acupuncture every other week, NUCCA, sauna daily if possible. I still have my chest port but don't use it right now. My plan is to do the antibiotics for about 3 more months and then be done with them for good. My goal is stick with natural herbal remedies and alternative therapies from then on out and for my family as well. I can't tell you how much I  believe in energy medicine. I will never view medicine the same again. I will be taking my girls to Dr. Spinato soon and look forward to how he can help them. I will be using alternative medicine and therapies for the rest of mine and my families life. I am happy to share anything I can with you about it and highly encourage you to look into these options. They may just change your life. I can't wait to keep you updated on my journey over the next few weeks as Dr. S works his magic. Feeling truly blessed and I like I am on the right path to getting well.

Wednesday, October 3, 2012


I don't know how I did it. I honestly don't know how I pulled off being a full time working mom for 7 years. As much as I enjoyed my work, loved my co-workers, and needed the money I wouldn't go back to being away from my family like that. Although I will admit the full time job I have now, the one of fighting this dis-ease makes my life seem crazier then it did before. 

I really feel like we are at a crossroads with treatment and I don't know where to go next. I know I keep saying this, but it is beyond frustrating to not have a standard checklist of where to start. In reality Lyme is only part of the picture. That is why the name change to MCIDS (multi chronic infectious disease syndrome) seems better. Even with that there is so much more going on. You can have immune system, hormone, genetic, detox, a million more issues. There isn't even a standard list of tests to run. I feel fortunate on some level to have a lot of options presented to me over the past few weeks. Trying to research all of them and make a decision is proving to be very difficult. Then reality once again slaps you in the face and it really comes down to money. Money that my family doesn't have. Add to this that we have two children that we desperately need to get help and it just all becomes too overwhelming. With each passing moment there is mounting pressure on what to do for our girls. Every complaint of pain or some weird symptom almost paralyzes me and I desperately want to get them well so they do not have to endure this. What are we supposed to do? At this point all I can do is pray that God leads us where to go. I have at least 6 health practitioners that I am considering seeing. There is definitely a lot of information to review. 

With all of that being said, I am proud of the fact that I am really making progress in the areas of diet and exercise. It has become clear to me that there are multiple things out of my control and that I will benefit by focusing on what I can control. Diet and exercise are the two main things I have been working on. The 30 days of clean eating my family tried was really difficult but it was definitely a catalyst for change. We have continued to pursue changing our diet and it is getting easier as time goes on. We have reduced the amount of grain, sugar and dairy we are eating over all. Most of the dairy we do eat is now RAW. We have increased the amount of fruits and vegetables we eat,  most of which are organic. The amount of packaged food we eat is definitely reduced. I can't say that I feel amazing but I am losing my cravings for the junk and it just doesn't sound appealing to me anymore. My acupuncturist really wanted me to focus on eating cooked vegetables for a week and I really started to lose my cravings when I did that. I am happy that we are making improvements and that my husband is on board as well. The kids are not thrilled about it but they are coming around to the idea a little at a time. My six year old is still suffering from low iron so we are really focusing on bringing those levels up. An important thing you may not know is that dairy can actually bind the iron while vitamin c helps it be absorbed. So making our green smoothies with spinach and no dairy (use almond milk) or eating eggs with orange juice are things we are doing to help her out. We also just got a new juicer. I have researched and agonized over the blender vs juicer dilemma. The bottom line is you need to do what works for your family. We have a Ninja blender for our smoothies and are now using a Jack La Lanne Power Juicer for our juice. This just seemed to fit our budget and needs the best. Do what works. We are still getting amazing benefits and are eating healthier that we ever have. 

Now comes the exercise. I know I said a few weeks ago that I was going to put it all out there so I was accountable to people other than my husband for my health. Although I probably won't post pictures until later I will say my starting weight is 152 lbs. This is one of those things that is very personal. I think especially for women. I know I shouldn't have a magic number but I kind of do. I am treating it more like a goal number but when I am comfortable with how I feel and look then that is what will matter regardless of what the scale says. So my goal would be to get down to 135 lbs. However since muscle weighs more than fat, I may not reach that goal. I just want to feel strong and be confident in how I look. So my journey to being in better shape has started. I ended up finding an amazing trainer and I have had the best workouts of my life with him. It has only been a few sessions but I am a total believer in his approach and can't wait to see my transformation over the next few months. The story of how I found him is really cool but I will have to save that for another day. The one thing I have not been happy with is my heart, but I am not going to quit. My heart rate was 183 during my workout out the other day. It is very frustrating but the cardiologist says its fine. I can't say I agree but they assured me I don't have anything life threatening. If I fall over and die due to a heart issue you heard it from me, the cardiologist said not to worry. 

I am waiting for some test results for my adrenal glands and have some more information on my thyroid issue but that too will have to wait until next time. Thanks for following along and supporting me in this crazy journey. For all my San Diego friends, the San Diego Lyme Walk is Saturday October 13 at Seaport Village. Would love to see you there! Hugs to all my fellow warriors out there. Don't give up. Take it one moment at a time and fight hard. (I will update my current protocol too)

Wednesday, September 12, 2012

Random Story

I really feel led to start off this post by sharing a story. There is always a chance I have shared this before but it was placed on my heart to share today even though it doesn't seem to relate to anything else I have to say. I have learned to not ignore those feelings. Someone needs to hear this. Here it goes.

About 6 1/2 yrs ago I found out I was pregnant with my second daughter. My husband and I had already decided during my first pregnancy that we would never terminate a pregnancy even if test results said our baby had significant health problems. We had been blessed with one healthy daughter already and although my first pregnancy wasn't a walk in the park I didn't have any significant issues. I wasn't very far along in my second pregnancy when I began having some severe pain. It was very similar to pain I had before from an ovarian cyst but of course being pregnant I was a little concerned. I called my OB whom had delivered my first baby and whom I trusted completely.  She said I should go to the hospital for an ultrasound just to make sure everything was ok. We went down to the hospital and the results came back that I was pregnant but I was definitely not as far along as I should be. There was some concern of an ectopic pregnancy and I needed to come back in a week or so. The pain continued on and off and I went back for my followup. We were blessed with an amazing tech this time. Although he couldn't confirm anything, he told us that things had changed and appeared to moving in the right direction. I remember it was a Friday and he said he worked all weekend and if I needed to come back everyday for reassurance he would be happy to help us. Little did we know what a blessing this man truly was going to be for us. We were definitely relieved. The afternoon of the following Monday, my OB calls. She tells me she just received the ultrasound results and I did not have a viable pregnancy. She needed me to come to hospital to terminate the pregnancy. Of course my husband and I were devastated and we just couldn't understand why this was so different from what we had heard a few days earlier. We got settled in the hospital and while we were waiting for my doctor we explained to the nurse what we had been told and how this all didn't make sense. She was kind enough to pull my ultrasound results and told us the notes indicated exactly what we had said. She told my doctor as soon as she arrived about our concerns. When my doctor finally came back she apologized and said she had been sent the wrong results. Everything looked fine on the new ultrasound. We were free to leave. Today we have a healthy beautiful 6 yr old little girl. One persons mistake almost cost us my precious daughters life. Like I said at the beginning, I'm not really sure how this ties into everything else I'm sharing but someone out there needed to hear this. Please don't sit back and rely on someone else for health and well being. 

Well with that out of the way I did want to give you a little update on my new "job". The first few weeks are always a little crazy and this is no different. I am signing a contract with myself outlining everything this will entail. The basic premise is I can work as much or as little I want. My pay is based on how much I work. I am kind of on call 24/7 but my schedule is really up to me. I have a a fairly good idea of what my daily assignments will be and what special projects I might be tasked with. I definitely have lots of meetings to attend (i.e. doctors appts). In fact I have had a few of those meetings this week. I saw the acupuncturist yesterday and had an ultrasound of my thyroid to day. I will be seeing the endocrinologist on the 25th to go talk about all of the hormone issues, adrenal fatigue, and thyroid problems I may be facing. I am hoping to hear my ultrasound results before then because I am relatively sure I will be told I have a least one if not multiple tumors growing and they need to do biopsy. If that is the case, it will be the third time I am facing the possibility of thyroid cancer. I guess I will know if a couple of weeks for sure. 

My first real assignment is to nail down a treatment protocol and schedule. As I have said many times, with this disease there is no one treatment protocol that works for everybody. Each persons case is unique, each doctor out there has a little bit of a different approach, and you really need to listen to your body and your heart to determine what is right for you. Although I don't know 100% what my treatment will hold I can tell you some basics. I am really leaning to toward options that focus on restoring my bodies balance and ability to heal itself. Things like what Hansa offers, bowenwork therapy, acupuncture, zyto, and Synchronicity Wave System to name a few. Diet, exercise, enough rest, detox and a positive attitude are also a must. I am on antibiotics right now but  I am not sure for how long. I have a lot to sort our and get straight before I make any big decisions.  Organization in this job will be key. 

I have a lot more to share with you and in a few days I hope to have an updated current treatment protocol, some starting point statistics, maybe even pics, etc...I definitely need to share what I learned at acupuncture a few days ago and the challenge he gave me for the week. Although this post is kind of all over the place and not what I had planned for it to be, I knew I could not ignore that voice that said you need to share your story. I'm praying that what I said may be a blessing to someone. I look forward to getting back on track and sharing some more with you in a few days. God Bless.

Friday, September 7, 2012

New Job

I've got some very exciting news to share. You can probably guess from the title, I have a new job. It has great benefits and I start tomorrow. I'll be working at Mind, Body, Spirit and the biggest part of my job will be working on me. Okay, let me explain. I have decided to treat taking care of myself as a real job. If I do good at it the pay and benefits will be better than any job I have ever had. Let me share how this whole thing came about. 

For the past 2 and 1/2 yrs of my life, I have been trying to regain my health that really I had spent almost a lifetime slowly losing. I have tried traditional medicine, alternative medicine, and all sorts of things in between.  I have had ups and downs, twists and turns, that I never could have expected. I have tried to come to terms with the fact that I will always be fighting this. Even the thought of a lifetime fight against illness, makes me tired. Because of this whole ordeal I have begun to learn a lot about health, fitness, alternative medicine, etc...especially over the past year. The more I learn the more I am amazed by the human body and how it was designed. I truly believe that no doctor, medication, or procedure can cure me. All of those things can only aid in restoring my bodies balance and function allowing it to take care of itself. Our body truly is a miracle, and God designed it to heal itself. 

A couple of weeks ago I decided to join some friends on a mission to eat clean for 30 days. Eating clean is kind of a "buzz" phrase right now and means a little something different to everyone. In any case, having someone to be accountable to besides my husband has been a good thing for me. Although my family still has a long way to go, we have definitely made some steps in the right direction. Shortly after we began this mission I started back on antibiotics. I am currently on 2 out of the 3 that my doctor wants me to take and I have felt horrible.  I knew I needed to really focus on detoxing and have made an extra effort to use the sauna, drink water, eat good. I even did some electro lymphatic therapy and got to see my acupuncturist after a long break over the summer. While I was hoping these things would make me feel great they didn't. It has been a rough week. In fact my excitement and motivation over starting this new job this morning was interrupted by left sided chest pain and shortness of the breath that was all too familiar. I prayed that I would know if and when I needed to call 911 but deep down I had been here before and knew there was nothing they would find or be able to do for me. That however has not deterred from my goal and in fact has made me realize even more just how much I need it. 

I have been seeing lots of great pages on Facebook dedicated to health and fitness. Although many of them seek to motivate you, I have been allowing them to make me depressed. I see these amazingly fit women, talk about doing it all and I think back to when I was even a fraction of how in shape they are and I just get sad. My self confidence is in the trash, I weigh more than I ever have, I feel horrible.  How nice for them to go run and lift weights and spin their butts off. They work hard for their fitness but that isn't even an option for me. It didn't take long for me to realize that this entire time, I have been standing in my own way. When it was hard to look at my acupuncturist yesterday and answer his questions honestly about what I had been doing I realized I had a problem. Who was I?  I had become the queen of excuses. I certainly wasn't acting like the person I want to be. I began to think back to what I had accomplished in my life. Admitting that I had unknowingly been sick for so long yet I managed to: survive a full time college load while working, getting my EMT certification, working for the US Forest Service including passing their fire academy and going through fire school at Camp Pendleton, having two children while continue to work full time, doing so well in class that the CA State Fire Marshals office offered me a job, walking every step of the Breast Cancer 3 Day (about 60 miles)...I knew I had to not only take pride in my accomplishments but quit making excuses for why I couldn't achieve the health that I wanted.

As much as I considered trying to be one of those do it all women that had a Facebook page and website dedicated to health and fitness I decided that it was not the time. Believe me, going through this experience has made me consider a career in holistic type health or fitness of some sort but I know I just need to focus on the task of getting myself well. If that leads to something down the road that would be great. I have also come to realize that I do have gifts of compassion and encouragement and that I hope this "job" will allow me to use those to the best of my ability. I have decided to track this whole experience here in my blog. I found that being accountable to other people will help me stay on track and I am hoping someone, can benefit from what I share. My plan is to be honest, Including before and after pictures, my true weight, basically the good, the bad and the ugly. This isn't just about physical health though. I definitely am starting to see the mind body spirit connection. Negative thoughts can affect you physically and I plan on working on my total health. That is the only way to get better. 

So here it goes. A new phase, a new challenge. No more excuses!

Thursday, August 16, 2012

MCIDS- Is that what they are calling it these days?

It looks like I inadvertently took the summer off from my blog. I certainly didn't mean to let things go so long but I guess after more than 2 yrs you try to think about other things in your life besides your illness. I say try and think about other things because the reality is, my brain is consumed by this illness a good part of everyday. It manages to creep in and interrupt what I am doing with every pain I feel, every commercial for flea and tick medicine, every Facebook post from a fellow brother or sister with this illness...No matter what I do I can't completely escape it. 

I wish after two years I was also able to say that I have come to terms with my situation, that I am okay with it, and it doesn't bother me any more. To say that would be a total lie. Just today, I broke down and told God I was over it, I didn't understand why my family was having to endure this, I wasn't okay with it, and I wanted it to end. The good thing about my God is, He gets it and allows me to have my moments of frustration and anger. Then He gently reminds me, He has got it under control. I continue to work on trusting Him and having faith that something good is going to come from this. 

Things have been a little bit "confusing", (I guess is the best way to put it) over the last few months. After coming back from Hansa the second time, I was dealing with the news of the girls and focusing on them plus dealing with the fact that I didn't feel much better and was a little frustrated. I was actually feeling somewhat worse. After a phone consultation we decided that I should try taking some colloidal silver and that we would try another remedy for Brooke as her stomach aches had not cleared up. I knew I needed to follow up with my doctor here and that kind of threw a wrench into everything. Although my CD-57 number had increased a good chunk, a lot of other numbers still were not good.  My vitamin D levels are still low and now I came back positive for Kawasaki Virus in addition to the two forms of pneumonia, Epstein Barr, and HHV6 that I had already tested positive for. Although these are not acute infections where I am contagious, they are constantly in my system and can reactivate at any time. My system is taxed to say the least. My doctor agreed that I should do the silver because that would be my best bet against the viruses but based on everything I should go back on 3 different antibiotics. Dealing with all of this information in combination with a super busy All Star softball schedule for my daughter my treatment got off track and I ended up on a break from treatment. The reality of that decision has set in and I seem to be failing fast. 

Part of the frustration and confusion in this is that there is no clear cut treatment. With other diseases and illnesses there is usually a standard course of treatment. It is widely recognized, accepted and agreed upon by most medical professionals. With this, not so much. As I may have mentioned in an earlier post my husband and I went a seminar on Lyme by one of the top Lyme doctors I think in April. The information that came out of the few hours with this man was overwhelming to say the least. My poor husband was so lost because he had not thrown himself into the hours of research like I had and a lot of the terminology was foreign to him. Heck, a lot of it was even over my head. Couple that with the amount of information crammed into these few hours and your head was spinning. One of the things that stuck out to me was the push to change the name from Chronic Lyme to MCIDS- Multi Chronic Infectious Disease Syndrome. The reality is that a large majority of people with Lyme have other on going chronic issues, such as viruses, co infections, pain, yeast problems, heart problems, fibromyalgia, neurological issues...the list seems to go on forever. Changing the name in and of it self doesn't change much but I guess it is a better description for the totality of what we are dealing with. Next came the fact that there are about 15 different things that need to be dealt with when treating MCIDS and they needed to all be dealt with at the same time. That was a new approach to the way I had been doing things. It made sense but also left me wondering where I even begin. My head has been spinning ever since with what my next step would be and where to I going natural, traditional, a combination of both? Do I go broke going to Hansa or try something new that is local? Where do I go next with my kids?

Here I sit a few months later just as confused and still unsure of what we are going to do. The only thing I do know is I can not sit here and do nothing. That little break is catching up with me at a rapid pace. I am filled anxiety every night at bed time and can't fall asleep. I wake up tired, weak and in crushing bone and joint pain. I have seizures almost weekly. I am short of breath and have heart palpitations. My short temper, anger, rage and depression is ramping up again and I feel like an awful person. I would rather feel like I am physically dying 24 hrs a day then feel for 1 second the way I do after losing my cool with someone, especially those I love most. The bottom line is, I am once again afraid for my life and wonder just how much longer I can keep this up. My brain function seems to be decreasing everyday. I can't remember simple things, I can't spell to save my life,  I am getting confused, and in all honesty there are times where I questions my ability to take care of my kids. As school, sports, and life seem to ramp back up to a frantic pace we have got to find a way to deal with this all. Ask for help, say no, cut down on the clutter anything to make things as simple as possible. 

We also realize the need to go back to some basics. Summertime bbq's, birthday parties, etc...have contributed to a slide in our diet. So this Sunday our family, along with another dear family,  and maybe some others are embarking on 30 days of clean eating. I am hoping being accountable to someone other than my husband may help my to stay on track. Drinking plenty of water, using the sauna daily, getting plenty of rest, some exercise and taking my supplements and meds are also on the list. I am hoping that over the next 30 days we may gain some insight, clarity, and direction for where to go next. 

I am almost ready to pay someone to take over my health care. Someone that can do the research objectively, look at the all the options and advise us where to go and what to do. In the end I know these are decisions that we have to make for ourselves. You just begin to get so long do you try something for before you decide it isn't working? When does a medicine become more detrimental to your health than doing you good. Once again, the reality has been made very clear, by top medical professionals in this field, I will be dealing with this for the rest of my life. For my kids, this will truly have been a life long battle. I know our situation could be a lot worse. We are blessed and still have the ability to bless others for which I am so thankful. I just need to know that we are making progress and getting somewhere. Thanks for "listening" and please keep us in your prayers. Will check in soon.

Thursday, May 31, 2012

Living Life In Spite Of...

I stole this title and kind of the basis for this post from a friend of mine. I didn't realize it had been so long since I had written an update about whats been going on. It's my same excuse as always, things have been crazy. I long for the day when things are no longer crazy. Until then, I guess I am learning, as so many others are to live my life in spite of Lyme, in spite of the pain, in spite of being tired, in spite of having no job, in spite of being a financial wreck...The past  two months or so have been really rough on me physically. My"symptoms", if that's what you want to call them have been really bad. I think I am approaching a week with out a seizure which is kind of big deal. I got to the point where I was having them daily, sometimes multiple times a day. I had my worst seizure ever just recently. I have had the most awful acne problem I have ever had in my life. I am almost 35 years old and feel like a junior high girl again. I am in need of nap almost daily but I can't seem to find the time. My brain function is starting to go again and I struggle to spell simple words or remember something for even 5 minutes. Then there is the pain. Pain of all types, in all places, daily, hourly, almost every moment. This has all been taking a toll on my emotionally. I have had some dark days and really had to fight to pull myself out of them. 

My kids are still struggling as well. The drastic improvement I was hoping for has not happened yet. Still we go on. Then just the other day, I found out that my dad had been bit by a tick while staying in Illinois. The tick was engorged and the bite was a little red. I sent my parents to the doctor right away. Of course the doctor told them they had nothing to worry about but they got him to give them two weeks of doxycycline anyways. Two weeks is not enough, but at least its a start. Three days later, the area around the bite was a swollen, red, and warm to the touch. Looks like one of the many Lyme rashes out there. Could we really be going through this again? At least we caught it early and I am praying my dad develops no symptoms from this. In the meantime another mom I know, in the same area in Illinois, daughter was just bit. It breaks my heart to think of someone having to go through this nightmare. I can't help but be extra concerned about my families trip back there next week. If any of us get bit, I am not sure I could it handle it.

With that all being said, some recent blood did show a significant improvement in my Cd-57. That leads me to believe Hansa was right, and my biggest issue currently may be more of the viruses or maybe the co-infections instead of the Lyme itself. I am definitely grateful for the improvement even if I don't feel better yet. 

I have come to realize through all I have been facing and what a friend has been going through that we are doing are best to live our lives in spite of Lyme. Everyday when I get up and take my kids to school,  when I do team mom things for my daughters All Star team, when I wash dishes, go shopping, pretty much go any where or do anything I am choosing to live my life in spite of my disease. If I did what I physically and emotionally felt like doing everyday...I would not get out of bed, I wouldn't smile and tell people I was okay, I wouldn't give my life much effort at all. But I realized I am making a choice on a regular basis to push through the pain, to push through the tired, to push through all of the negative things and live my life to best of my ability. For once I am realizing that I need to give myself a little credit.  The house is not always clean, I don't always remember to show up and help in my daughters class, I don't get to work out like I want but I am not allowing myself to give up. Though this may not be the life I dreamed of as a little girl, it is MY life and I am lucky to be living it. I have been blessed in more ways than I can say. I still struggle with the thought that this may be as good as it gets. Will I ever be functioning at close to 100% ? I don't know. Instead of waiting for that time to come, if it ever does, I will choose to live my life in spite of...

As always, thank you to my friends and family for all of your support. Thank you especially to Caity and Joni for the inspiration. Caity you are a shining example of living your life in spite of Lyme. I love you both and am so thankful that if I have to go down this road, that I can down it with you. 

Tuesday, April 17, 2012

Do A Little Dance

People that know me the best know that I like to dance. Well actually I love to dance. It is almost torture to be some where, especially with a dance floor, when a good song comes on. I can't sit still. I have a constant need to move to the beat of the music, in church, in the car, at home...Anyways I think you get the point. So the other day I made up a new dance. I decided to call it the Trader Joe Twitch. It is so easy to do I figured I would share it with you just in case you wanted to try it. All you have to do is grab a shopping cart, walk into your local Trader Joe's, and then begin having a seizure as you push your cart around the store.

That's right, after almost 3 months of no seizures I had one the other day when I was grocery shopping. I felt like one was coming on for about 3 days. I tried so hard to make it go away but with no such luck. I needed to get my shopping done so I just carefully maneuvered my cart through the store trying to not accidentally hit someone or give them my almost famous seizure thumbs up. I tried to keep my vocalizations quiet enough as to not draw attention and I fumbled my way through a conversation with the checker, stuttering as I went. I had a few choice words running through my head as I let my frustration get the best of me. What the heck is going on? Why do I feel so bad again? I don't understand.

For close to a month now I feel like I have been starting to regress a little bit. I assumed that the transient pain that was starting to reappear had to do with stopping my remedies to early by mistake. However when I went back to Kansas last month, the remedies I thought would be responsible my body didn't want anymore. To make it even more frustrating, it looked as if my Lyme was under much better control but my viruses were really a problem. Any progress I had the second go around is gone and the last week, especially the last few days have been hell. I am beyond tired, my brain is pretty much worthless, the seizure, and the PAIN! Muscle pain, nerve pain, joint pain, bone pain. The joint and the bone pain are at getting fairly high up on my pain scale and it has been this intense for three days now. That has never happened. Time to e-mail the doc and see what his thoughts are. I have been trying to detox more than normal and don't feel like I am getting any relief.

I am so bummed out right now. I guess I just thought things were really moving in the right direction (which they may be) and that I was reaching a stopping point so I feel like I am so moving backwards. I have been reminded recently though that my treatment is almost for sure going to be long, really long, term. I have been sick for over 26 yrs and I can't expect to get better in a year or even 2 years. I feel like I am at some sort of cross roads though on what I do for treatment. Frankly weather I go back to antibiotics or stay on the natural road with Hansa or someone else we are out of money. So unless I win the lottery the best treatment for me at this point is probably not going to be an option I have. I just feel lost at this point. I don't feel like I am even able to make the best treatment choice anymore. I need a third person to come in and hear what all the doctors have to say, and do some research and help me sort all of this out. It is just to much.

To make things more complicated, we of course I dealing with the fact the our 8 yr old has Lyme. I found out this week she has been suffering from the ringing in the ears and her intermittent dizzy spells are happening almost daily. She also broke out in the worst case of hives she has had in years. I don't know if this is a healing crisis, if the remedies have stirred up the Lyme and the bacteria is changing form, or what is going on. Her pediatrician doesn't even know about the diagnosis yet and frankly can't treat her as she knows nothing about it. I so wanted to go the natural route with my kids but am not sure if that is going to work. Both of my natural options are probably out of the question financially. Switching the kids to my doc would work for a little bit but again the natural therapies would cost more than we can afford. If I stop all treatment I will go backwards and could end up not able to care for my family at all. Yet at the same time, I won't let my daughter suffer. This is really something only God can handle. I have to remember to just give it up to him.

I'll let you know what the doctors say and how things go over the next week. Prayers and positive energy are always appreciated. Oh and I finally have a website for my new business. Please check it out and let me know if you could use my services.

Tuesday, April 10, 2012

Frustrated but still fighting

As you can probably guess by the title of this post things are not exactly amazing right now. Let me say that I am blessed and my life is good. I have so much to be thankful for. I have been trying to increase my positiveness and stay positive and for the most part I think I have done a fair job. But as you may have learned by now I do vent when things aren't going so well. I have  gotten much better at not posting negative things everyday but there are times when it is necessary and this is one of them. I am trying to walk the line of being positive without making this disease look like its no big deal. There are days when this disease seems like it is the only thing you have going on in your life. The last week or so I am being reminded that this battle will be a life long one. 

Unfortunately this second round at Hansa has not produced the results that I saw the first time. I do believe that has a lot to do with how toxic I may have let myself get. I think because I was feeling so much better than I had in at least a year I was overdoing it and not taking care of my self the way that I should be. I know I have mentioned it in early posts but one of the things that is so frustrating about this disease is never knowing for sure why you feeling like you do.  Is it a herx, is it a flare, is it just part of the disease? Even with tracking symptoms sometimes you still can not tell. Over the past couple of weeks  I have had an increase in my brain issues. I am having a harder time concentrating and am more forgetful. I also feel more easily overwhelmed. Some of my heart and breathing issues have also increased a little. The biggest thing is some of my pain is back. After two months of being almost 100% pain free my joint and bone pain is back. It is fairly wide spread and random as was normal. My hips and knees get really sore when I am sitting or laying. My arms and legs are falling asleep really quickly and I have burning nerve pain. What the heck? This is obviously where my frustration comes in. I guess I had kind of convinced myself I could only go up. So this is my reminder that I guess I can go back down too.

My girls are still doing okay and I feel like Brooke (5) has had some improvements in mood and attitude. My family is plugging along with are better eating habits. I am beginning to believe we can do largely organic without breaking the pocket book. It comes down to my planning a little better but we will get there. I just have to remind myself to take this one day at a time and when we slip, we just need to get back up and move forward. There is no sense beating ourselves up over our mistakes. The girls are getting better at taking their remedies everyday. In about a week or so they will be all done. I'm hoping we continue to see some improvements with them both.

Our next issue is how we continue with my treatment. I wish I could be done but it is obvious I am not ready to stop everything. Hansa really wants me back in about another month or so. I still need to meet with my doctor here and see what he would like to do which I am sure will be to continue with the light therapy I had started at the end of last year. I am thinking I will be putting both girls through that as well just to try and help make sure we have done everything we can. I also have this CCSVI issue to address. It is a very complicated thing. The biggest road block comes back to finances. I hate that this is even an issue but it is. I am trusting God though that he knows what needs to happen and it will be taken care of. For right now I will continue the fight one day at a time.

I always like to end on a good note so I have a couple of things to share. An amazing person (and her family) who has become such an important part of my life have had a breakthrough in her fight against Lyme. She is lacking a major gene that is responsible for her bodies ability to detox. She is the second young person with Lyme I know personally who is facing this issue. I am so excited to see how this affects their treatment and how they feel. They have had little improvement much to the doctors frustration and this may be the answer. So I am beyond excited to see them start to get well. 

Last thing I want to share is some exciting news for the whole Lyme community. This Friday, the 13th, Dr. Phil is taking on Lyme Disease. Please watch it, DVR it, whatever you can do even if you don't like Dr. Phil. He has a LLMD and news reporter/Lyme fighter Brooke Landau in addition to some "bad guys" from the IDSA. The IDSA

Lots of prayers continue to be needed and appreciated not only for my family but for all of the families fighting this disease. Thanks for following along on this crazy journey. Sorry this update may be all over the place. My brain has just not been working lately. 

Monday, March 26, 2012

Return to Hansa: It's working

Sorry I took so long to write about my our last day at Hansa. The benefit is I can see things that we did are already working. Our last day was really good and sad at the same time. It has become almost a home away from home. The hardest part was leaving our friends. We have gained a life long friendship though and even though it was hard to leave I wouldn't trade it for the world. We love you Body family!

The day started our with me seeing the doctor. I was scheduled for an hour. He needed 15 minutes. That was it. I still have a lot of work left to do but we had made some progress and he got kind of as a far as he could go this time. So we moved right on to the kids. We did some work with the myasms which are those diseases, illnesses, and conditions in your family history that are passed down energetically. They don't always activate, and just because you have a myasm doesn't mean you will get that illness but you could. You just want to clear all of that out. The big one that stands out for me is cancer. I have it and so does Brooke but it has skipped Jenna so far. Hopefully getting these issues addressed in the kids means they won't pass them down anymore. Again doesn't mean that we would definitely get cancer but that energy is there and could activate at any time unless you get it taken care of.

We didn't really have any big revelations. Dr. J did say that Brooke's ear looked night and day better. She still had some pain at about 5 am in the morning so I was really nervous about our flight. He gave us a herbal remedy to take for the pain. Just to be safe I did give her some advil and found the ear plugs designed for flying that are open on the end to help regulate pressure. The kids did amazing on the flight and Brooke has had no complaints since.

Since we have been home things have been crazy as is usual around here. We have just been busy and I started not feeling good. I realized right away what my mistake was. When I was at Hansa I didn't really do any detox this time so I really should have come straight home and got in the sauna. Having the energetic treatments got things moving in my body and I wasn't doing anything to get the junk out. Then I started to have my usual sore throat that I get a day or two after flying. Weather it activates my Ebstein Barr or what I don't know but it happens I think every time I fly. This time I woke up with my eyes stuck shut and a bad headache. I kind of started to panic. Please not pink eye and no antibiotics. Well 24 hours later I am feeling much improved. I jumped all over detoxing and it seems to have worked. I did the sauna once Saturday, twice yesterday, plus took detox bath, and started taking my EmergenC. I also went to the health food store to try and find a remedy for my eyes. The lady suggested Rue Fennel drops mixed with purified water as an eye wash. 3 doses of that during the day yesterday and no problems with my eyes this morning. I will definitely be continuing this protocol for the next day or two to make sure I really knock it out. I also made Asian Ginger Chicken soup for dinner. It is has spinach and mushrooms and I threw in some chicken for my husband. It is supposed to be healing and was perfect way to end my day. 

Back to the girls. They both have a few remedies to take for the next 30 days. I was excited to hear it was only 30 days. Jenna is taking the same ones for Lyme and neurotoxins I originally took. I couldn't be more proud of my girls. These remedies don't exactly taste great and they do it 3 times a day without a fight. Already we have seen an improvement with Jenna's stomach issues. She has suffered with horrible gas since she was little. I don't think she has had any since we got back. It's the little things sometimes. It is just more confirmation that we are doing the right thing. I can't wait to see what happens over the next few weeks for both girls. I am expecting big things. I got our our paperwork and test results and took some time to look them over on the flight home. The one thing that really stuck out to me was Jenna's vitality. Her little body is only functioning at about 50%. We didn't talk about that specific number so I am going to email the doc and get some more information. Hopefully her numbers will increase rapidly now that we are on the right path. If she has done this will functioning at only about half of what she should I would say she is in for big things in her future. 

Our biggest challenge at the moment is this possible CCSVI issue for me. It is all so new and there are of course no guarantees that the "angioplasty" to open up your veins will work. There is just a lot of unknowns right now. I am still feeling okay with going to get the scans done if we can come up with money. Then we can go from there. Lots of research and prayers ahead. I am feel beyond blessed though that we found Hansa. We are on our way to better health and I couldn't be more excited.

Tuesday, March 20, 2012

Return to Hansa- This is where the healing begins

Things have been quite interesting since my post last night. I have a big break in my day so I decided to write part of my update now so I'm not having to write so much later. We went to dinner with our amazing friends who have been such a big help watching the girls during some of my treatments. We had a great night and come up to our room at about 8:30. Then out of the blue Brooke started complaining about her ear hurting. I was trying to figure out what was going on since we had been off the plane for over 24 hours and she had no complaints at all during our flight. I got her to sleep a little but the pain was waking her up in tears. That led to  borrowing my friends car in the middle of the night to go to Walmart. Not my idea of a good time but I had to help my little girl feel better. Long story short,  I didn't get a lot of sleep last night and neither did Brooke but with a little Advil, warm compress, and cotton in the ear while she slept...she is pain free and bouncing off the walls this morning. So all is well at this present moment. 

I was scheduled to see the doctor first thing this morning. I did forget to mention yesterday that besides seeing the doctor, I had a massage and did the LUX (the treatment that uses colored lights and gemstones aimed at different organs on the body). That is the same protocol today. They are trying to help me save money and do kind of the minimum but still get good results. I don't think the girls will do anything but see the doctor where you do get energetic treatments and some other stuff. I started my appointment, after discussing how I was feeling, with some basic alignment stuff. He did a little cranial release as well. We then went on to the neurophoton therapy with the glasses that show you the different colored lights. All of the standard stuff went really quickly with no issues so he brought out some homeopathics to test me with while wearing the glasses. We dealt with a couple of minor issues there. Then we moved on to colored glasses that are different then the colored lights. I flew through those as well with very little to deal with. So the doctor said I was going to challenge him today with what else to do. We finished up trying to address the ringing in my ears and I was done. I have a massage and LUX scheduled this afternoon and then the girls see the doctor. I'm hoping to learn lots this afternoon in their appointments and hope to start seeing some improvements.

My girls are doing so good with all of this. Convincing your kids to take herbal remedies and stuff isn't easy. Some of things I take are just plain horrible to chew up or swallow so they are troopers. Both of them gagged last night taking their first doses. I crushed up the pills and put them in applesauce this morning. It was better but not great. We will get through it though and hopefully soon they won't even notice. I have a lot of research still to do on this whole CCSVI thing and just trying to make sure I make the most of this short trip. I knew as soon as I got here I wish were staying the whole week and could just do everything. I am still really blessed though to be here and glad we are doing something to get our health in order.

This afternoon the girls got their turn to see the doctor and really their first experience with energetic treatments. Brooke went first because her ear was really bothering her again so I wanted Dr. J to take a look at it. Looking at ears isn't really standard for them but he did it anyways and said she needs to get back to the ENT. He really didn't like what little he could see but she has so much wax in the way he couldn't get a clear view. This has always been a struggle for Brooke and her doctors have had to remove the wax before. He said both ears were very red and kind of inflamed looking and it just didn't look good. Through BRS testing he did pick up a virus in the ear that is bothering her. He suggested some natural drops to try. He also showed me how to massage the area in her neck that would help open up her ears for proper drainage. Unfortunately I had to do another round of Advil before I get the store for the drops because they pain was so bad. Hoping we really get some relief before getting on the plane tomorrow. Once that was out of the way, he did some alignment stuff using energetic chiropractics and the percussor. Most of her issues were all in her sacrum. Then he did her cranial fixations with the percussor as well. Fairly easy for Brooke with the exception of the ear. She did great though.

Jenna had the same type of energetic treatments and use of the percussor to fix alignment and cranial fixation issues. He did note that both girls have a ridge in their "hard palate

Overall a good day. Looking forward to tomorrow but I definitely wish we could stay longer. We are going to miss our friends so much and I would love to keep working on the getting better but it will good to be back home with daddy and the dogs. We can also see how well we do over the next few months and then analyze where to go from there. So one appointment with the doc and then we will be saying good bye to Kansas and hello California.  Good night.

Monday, March 19, 2012

Return to Hansa- Survey Says...

I think I say this a lot but- What a day! This brings back memories of my first trip to Hansa. Information overload. I was ready this time and took notes but I am still not sure I comprehend everything. Of course as I start to process things questions come up so I will be making my list of questions for the doctor here shortly.  I wish I could take the "essence" of Hansa with me always. It is almost like magic that you walk through the doors and you swear you will eat right, take all of your remedies everyday on time, drink plenty of water, detox, meditate, think positive, etc...but then reality sets in when you leave and it starts you start to let those things go by the wayside. Once again, I am going to try really hard to to do what needs to be done to give us the best chances of health. Maybe it will stick this time because it has become about my kids much more than about me. So onto the day and what we learned. Sorry if my posts here are long but I so desire to give you as much information as possible. If anything I say here is helpful to one person than it really does make it worth it. Grab a cup of organic coffee, with stevia and a splash of almond milk and settle in for a read.

This morning started out with a CRT for myself and my 8 yr old daughter Jenna. My daughter did great during the test just like I knew she would. Next we went in to see the doctor and go over the results of the CRT's and then have the BRS(bio resonance scanning) for us and my 5 yr old daughter Brooke. Starting with me made the most sense. We reviewed how I had been feeling, what I was currently taking, etc...I admitted I screwed up and stopped taking my remedies a few weeks too early by mistake. I could tell than he wasn't thrilled but we were going to get through it. It may have been a blessing because my body actually tested that it didn't want to of the remedies anymore so that was good. Anyways, my CRT test didn't show a huge improvement but it is obvious by how I feel that things are improving. A lot of what I am dealing with may take 6 months to a year to clear up so that would make sense. In the overall numbers my inflammation dropped from a 4.5 to a 3. (0 is best 6 is worst) I will take any improvements I can get. Then when it came to vitality it went from 1.3 to 1.7. My body was functioning at about 40% at the 1.3 mark so again some improvement. When it came to specific areas there was not much change either. My thyroid is actually worse so I need to have it checked and may need to go back on thyroid medication that I had stopped in January. Hope to know a little more by Wednesday but will still need to have it checked. The biggest deal on my test was the fact that my head issues had not improved. This really confirms for the doctor that I am dealing with CCSVI. (chronic cerebrospinal venous insufficiency) Basically it is believed to be comprimised blood flow in the veins draining the central nervous system. The fact that I am having some lymphatic drainage issues in the areas at the base of the neck further supports the doctors suspicions. This is something they are finding in MS patients. Interestingly enough a lot of MS patients are testing positive for Lyme. (So if I could for one minute just say I don't blame Lyme for everything but the reality is many conditions appear to be caused by Lyme. Many of the conditions of really just a name for a group of symptoms like Fibromyalgia where as some of the other conditions may be actually illnessed or diseases them selves. I just encourage you to do your own research is you are facing a symptoms or have been labeled with a condition that may not make sense or has no known cause. Lyme has been associated with things like...Fibro, chronic fatigue, MS, alzheimers, parkinsons, arthritis, autisim, bi-polar just to name a few. Everything has a cause. Just saying. Enough of the lecture)

So what does CCSVI mean for me. One is the doctor believes this may be a big road block for me if it is not addressed and that would be sooner rather than later. Second I need to go get a MRI and Ultrasound to determine if this is definitely an issue for me. Being that this is a fairly new condition I am limited on the places that are familiar with it. The place that the Hansa Center works with regularly to address this issue is in Las Vegas. The imaging alone is about $3200 if your insurance won't cover it. Which I am guessing they won't but we will see. If the images show blockages you basically have to have something like angioplasty to open things up. That brings up a whole other world of is not guarenteed to fix things. You may not feel better even if it does fix things. You may "re-stenous" which means things block back up and then what. Factor in the risk and the cost of the procedure and well, this is going to be a big thing for us to deal with. Bottom line, I feel right now I need to try and proceed with the imaging and then go from there. In some cases it is genetic and something is malformed causing the issues. (Doc said this may be an issue in my case since Jennas test is leaning that way but they don't usually go down this road with kids. It could be other factors at this point for her) It could also be caused by some type of cervical impingement and fixed with some chiropractic type therapy. Either way surgery or other would involve me coming back to Hansa to continue addressing the issues and seeing what happens when that issue is taken care of. For some people, it is a huge turning point and they really improve after this. So bottom line is we have lots to think about. That covers the basics of me today. As far as the rest of my testing went with the BRS- my Lyme is definitely improving. I still have the ammonia in the brain(which is the main toxin released by the Lyme bacteria) but there was definite improvements. Started some new remedies to deal with the neurotoxin issues, the viruses which are major for me, and iodine for the ammonia I believe. Anyways I am excited to get back up and going and see some more improvements.

Now to what really matters- my girls. Brooke did really good with the doctor. In summary she has major digestive issues which I kind of figured. If you remember the top 10 list from last time Brooke only had a top six issues from each area. Children and healthy adults don't usually have 10 areas. For people with significant problems we have more than 10 but that is where they stop testing. Have to start somewhere. At least there is an end point for Brooke. From biggest issue to least her organs were- colon-stomach-thyroid-pituitary-pineal-hypothalamus and chemical/nutritional issues were metabolic-virus-lipid metabolism-yeast-allergies-hormones. Can't say all that means yet but should know more over the next two days. The hormone issue stuck out to the doctor and this is where the diet has got to change. Her hormone issues are stemming from the crap in our diets. So completely organic and hormone free meat and dairy or going dairy free is a must. What a wake up call. Dr. J believes Brooke has yeast in her colon so going to deal with that and forward we go. He also believes she may have some neurotransmitter issues contributing to her mood swings. She is also indicating stress on her autonomic nervous system. I believe it could be internal (illness type stressors) but it can definitely be external stress. Another huge wake up call. My 5 yr old and 8 yr old both are suffering from stress related issues. If these aren't indicators of how out of whack our world has gotten I don't know what is. The good news is although the doctor believes Brooke is carrying the Lyme bacteria she got in the womb she has no indications it has activated in her system. Lets hope with what we are doing here and the changes we make going forward her little can keep it in check and she never has problems. She does have some cranial fixations which may be affecting sinuses and some pelvic misalignments both of which we will deal with in the next two days.

My Jenna also has the cranial fixations which may be causing her more recent episodes of dizziness and pelvic misalignments. She has the indicators for stress on her autonomic nervous system too. She was indicating for a remedy that would help people who had gotten sick and not recovered properly. That is some big news for us. Jenna was born 9 lbs 4 oz to everyones surprise. By about 7 or 8 months old she was 18 lbs. She then got violently sick with rotavirus which caused her to end up in the hospital dehydrated and to have lost almost 4 lbs in a week. She has had ongoing stomach trouble and at almost 9 yrs old she weighs only 53 lbs. I am hoping we really begin to make some improvements in this area. Her top list of issues was as follows for organs adrenals-stomach-colon-heart-pituitary-pineal-hypothalamus-bladder. and chemical/nutritional were toxicity-bacteria-virus-hormones-allergy. She too has an end in site. The heart does concern me and they did pick up an arrhythmia which her pediatrician has also picked up but the Dr. J says he believes it may only come on  in response to what her body is going through at any given time.  The biggest news of the day was that Jenna is showing active Lyme as she has substantial quantities of ammonia in her brain as well. The bugs have started their cycle and are dying off releasing toxins into her little body. I almost cried when I heard the news but not because of what you would have thought. I am so thankful to God that we found out. My little girl stands a good chance to deal with this now and be done. No invasive antibiotics but getting her body to get back on top before it looses all control. I see myself in her at this age struggling with staying focused, being organized, remembering my homework.  Those same struggles in me were joke about lovingly in my nick name "Jessica Marie, tie your shoes, forgetful, Dlugos. I was a little bit of a walking disaster who always forgot things and well no one knew it wasn't just part of me. My body was being taken over slowly by these stupid bugs and their toxic waste and I was left fighting to get my life back. My little girl won't have to suffer the way I did. I couldn't feel more blessed. I am a little in shock and realize we may have some work ahead of us but we will overcome this. Dr. J believes her number one issue of toxicity is probably the ammonia and her body actually said it wanted the organs dealt with first. He does believe she may somewhat of a leaky gut and her allergies are really systemic reactions to what is leaking out. I can't wait for tomorrow so we can really get moving on these issues and hopefully start to see some improvements. Lots of questions to ask and things to figure out but feeling good about the direction we have chosen to go. I so desperately wish my husband was with me to help go through this and make sure we are doing whatever we can for our girls. I don't believe though this will be the last time we will be here though. So glad God has this under control. We couldn't face this battle without him. 

Now off to bed for some much needed sleep. Can't wait to share our exciting day tomorrow. Thanks for the prayers and support. Love you all.

Sunday, March 18, 2012

Return to Hansa

So the return to Hansa has begun. What an incredibly exhausting day it has been. I could not be more impressed with how well my girls behaved today. I even got a compliment from a passenger on our first flight for their behavior. What a great feeling as a parent. I made sure my girls knew how much I appreciated that. I wish I could say that today was stress free and easy but would fun would it be if everything went off without a hitch. Getting to see some of my favoritest people from last time made the whole day worth it.

Here is a quick run down of our crazy day. San Diego-Los Angeles-Houston-Wichita. We left our house by 5:30 to get to the San Diego airport for a 7:30 flight to LA. My husband offered to find a Starbucks for my daily coffee fix but I said no, I'll grab one at the airport. Well the commuter terminal has almost nothing in it and I figured no biggie I'll grab one in LAX. Of course by the time we landed and all, we didn't have as much time as I thought. Not knowing my way around I just wanted to get to our gate and go from there. Found our gate, almost time to start boarding and there is nothing really around. Our flight ended up being late and I could have found food and coffee but no one communicated what was going on. Let me say that our United plane from LA to Houston  was great. Free headphones if needed and tvs at every seat with free games, movies(good ones too), tv shows, music, etc...So for that United is awesome. However customer service at the airport is awful. Like I said, a late and oversold flight with no info as to what was going on. We of course are late landing. We get off the plane and I confirm our gate for our connecting flight. Totally different terminal, meaning you have to take a tram since the Houston airport is so big. I have less than 30 minutes to take off and all the lady says if we don't stop at all we should make it. No offers to help us by giving us a ride on one of the million little luggage carts cruising around. Me and both girls are running through the airport with all of our stuff only to get to our gate and find out they are behind. It was like a scene from Home Alone. We landed safely though which is the most important part. Although I am still looking for my mocha.

It feels good to be back only I wish we were staying for longer than 3 days. I am excited to see my progress and to get some more healing going but I am way more excited to hear what they say about my girls tomorrow. The anticipation is almost too much to handle. I have been having some symptoms return over the last two weeks so the timing couldn't be better. I realized the other day I screwed up though, by relying solely on my brain, and I stopped all of my remedies like two weeks earlier than I should have. I am wondering if that is why I am having a little flare up or relapse or whatever. By the time I caught the mistake it was too late to start everything back up so I will talk with the doctor and have all of my remedies retested to see where I stand on them. Part of my wonders if 3 days is really enough but I believe we should be able to accomplish a lot. The only thing I know right now is that Jenna, who is 8, are both supposed to have the CRT test in the morning. Brooke, my 5 year old won't. Just to refresh your mind, the CRT is the temperature test where they take your temperature at 100-200 different points (all above the waist) on the body and then subject you to cooler temperatures for 10 minutes then retake the temperature on all the same points. How your body responds to the cooler temperatures gives and indication as to what is malfunctioning in your body and your overall inflammation and vitality. Last time, my inflammation was high and my body was functioning at like 40%. Can't wait to see the results this time.

Well I guess that is enough and I should really get some sleep. You know I will be filling you in daily about our trip. Your comments and questions are always welcome. Thanks to all of my family and friends for their wonderful support. By tomorrow at this time, I should have an answer to my most burning question...Do my daughters have Lyme also? It is comforting to know though how I will handle it. I believe we can get their health on track and that they won't have to suffer and go through all of medications and everything I did. We will get their bodies to deal with what ever they are facing the way God designed them too. Big couple of days ahead. Here we go...

Friday, March 9, 2012

Second Chance

My life may not be going the way I planned it, but it is going EXACTLY the way God planned it.

My husband and another dad took the kids out for dinner and a movie so I have the evening to myself. You would think I would be doing something much more exciting than this but the truth is I don't feel very good and wasn't up to going any where. I also realized it had been quite a while since I wrote an update and I figured there was not better time than this. My life has been really busy and I haven't had much down time. I have to say that is a good thing. I am amazed at how quickly I could forget how sick I was. In some ways I think it is a good think. However, it does create some issues with not over doing it. In my opinion my energy is still horrible and I still wake up tired not matter how well I slept. (I am sleeping much better by the way) I try and remind myself though, that I am doing much more than I was 6 months or certainly a year ago. So my energy is better but I know I still have a long way to go. If I could only have that bouncing of the wall feeling a few days a week that would be great.

Overall, I have done fairly well since coming back from the Hansa Center. I have not had any seizure episodes. My muscle spasms are 95% better. My pain has been almost non-existent and my brain function has improved somewhat. I had a little reality check though this past week with some joint and muscle pain, poor brain function, heart issues, etc...It has been a little frustrating but I can't really complain. It is interesting that this has been happening during the full moon and solar flares that have been happening. It seems really consistent among most of us with Lyme at least that feel worse during the full moon. I am hoping that is all it is. I got my new herbal remedy for this horrible allergies I have been having. Within 3 doses my symptoms had improved dramatically but they have come back. It seems like taking the remedy things clear up fairly quickly for a little bit but they come back within a few hours. Hoping we can get them under control soon.

As far as my treatment doctor here in San Diego had wanted my to start back up on the light therapy a few weeks ago. I am holding off for at least a little while more. That treatment is not cheap and I don't have any measurable results. That makes it hard to know if it is working. I have continued with acupuncture fairly regularly and am doing my epsom salt baths and the sauna. I will admit I am not doing the sauna nearly enough so I am trying to get up and do it first thing every morning. I did reach my 60 day mark since starting my remedies so I have stopped them. So other than my heart medication, the remedy for allergies, vit d, and one other pill I don't take anything. To go from almost 50 pills a day  and IV's to this is amazing. It is really evidence as to how far I have come. I am hoping to redo some of my blood tests, like my CD 57 to see what they are indicating within the next month or so.

The really good news is I am going back to Hansa in a little more than a week. Although I only get to stay for 3 days I am really excited to get a tune up and see how much I have improved and what else we can tune up. The best news is I am taking both of my girls. Although my husband doesn't get to go I can't wait to find out what they see in my girls and what we can do to get them on the right track. It is a total blessing that my friends from when I went in January will be there at the same time. I can't even say how much I have missed them. Plus, they are helping me with the girls while I am in treatment.  You can bet I am going to blog about that whole experience when we go.

I feel like I have so much more to tell you but I guess it will have to wait for another time. If you wouldn't mind praying for our trip which is March 18-21. Please pray for safety, answers and improvements for myself, Jenna and Brooke. Also please pray for our financial situation and some big decisions we have coming up. God is continuing to bless us and it will be exciting to share all of the details of my photography venture and what God is doing over the next few months. As always, thank you for your continued support, kind words and prayers. I will try to get back to blogging more often so you know what is going on and where I am on this crazy journey called life.

Tuesday, February 21, 2012

Finding Balance

I apologize for the long break since my last update. In reality, I haven't had much down time and I guess that is a sign right there that things have improved somewhat. Unfortunately I don't have much time now either so this update may be brief. I promise to give a proper update soon. Overall the improvements I had made since going to Kansas have held pretty steady. I don't have the energy I want and need yet but I guess the fact that I have been so busy means it is better than it was. Since I had a few days here and there where I was bouncing off the walls I guess I desire that everyday. At a minimum I know I can have more energy than I do.    My pain is definitely less. I don't have pain very often anymore and when I do it is milder than it was. My temperature issues are somewhat better, my seizure type stuff is better and my heart may be even a little better. So overall I have held onto some improvements but don't feel much better than I did 3 weeks ago. There is one thing that has been really bad but I do take it as a sign of overall hayfever is out of control. I have had some bad allergies before but it has been probably mid to late nineties since they have been this intense. They have never lasted this long. They are intense everyday and have been for about 3 to 4 weeks. It would be really interesting to see where allergies show up on my top ten list now since they were number 10 when I had gone to Kansas. I finally decided to try a remedy from Hansa to see if it helps. Hopefully it will be here this week and I can get some relief. I had one little flare up about a week and a half ago that was a little strange. I was really having an amazing day or few days I should say. Then out of the blue I got sad and super depressed over that matter of a few hours. I wanted to crawl under the covers and be left alone. Some of my physical symptoms came back also. My feet got really cold, I had some pain and was sick to my stomach. What that was all about I don't know for sure but it did clear up. I am still learning to find my balance as I still have the ability to over do it. When you start feeling better you want to run out and try to make up for lost time and I catch myself paying for that every now. I just have to remember to take my remedies, get enough rest, and keep on my detox and diet.

God has really blessed my family and continued to take care of us this past month. I really feel like God has confirmed the direction we are going and I am working on continuing to trust Him to meet all of our needs. I have definitely has some ups and downs. I realize though that those down moments come from trusting man and not God. There are some big decisions in our future and I am excited to see where God will take us and how He will continue to provide for us.

One of those big decisions is  about going back to Hansa. My goal was to go back here in the next few weeks, with my husband and two girls. There is a good chance my husband can't go which make me sad but it is a must that I take my girls. My youngest is having increasing complaints of pain and stomach problems and I just want to go and get them back on track to healing whatever the reason. Of course money is always the big factor. I need a fourth person to go if my husband can't because my girls need to be watched while I am in treatment. When I looked at air fair it would cost us like 1500 for all 4 of us to fly.  That does make it cheaper to drive even with fuel being closer to 5 dollars a gallon. How we will pull this off I am not sure but I have an urgency about going back. I want to continue to heal and get my girls well on their way to healing as well. I would rather postpone starting light therapy again as that is not cheap and go back to Hansa again first. Lots to figure out in the next few days.

I wish I had time to tell you more but that is about all I can say right now. Please continue to pray for me and family and our upcoming big decisions. Oh and one last request,please look up Surf Chaser Photography and like my page on Facebook. Then share it with all of your friends. The future looks exciting and I can't wait to share more over the next few weeks.

Saturday, January 21, 2012

Because of Lyme

I can't believe it has been a week since I left Hansa. Where does the time go? I don't think I realized how different my life would be when I came home. One of the big reasons is because I have gone back to school. Not anything crazy, just one class. But for someone who has been living the life of the chronically ill this can monumental. I am taking a class because I want to which is also different for me. This is not out of necessity. Of course things are different too because I am healing. I am getting better. I still am not sure how to say I feel physically. I am still having a lot of my symptoms but a week later I would say they are less. Next week is my typically bad week so I am excited to see how it goes. Emotionally and mentally well the positive attitude thing is a bigger deal than I ever thought. It is an everyday struggle to not fall back into bad habits. I have to fight to keep  my mind in the right place all day long. I am finding though that I am happier. My husband certainly notices that difference. People seem to be nicer. I'm getting lots of smiles, and hellos, and people wanting to start up conversations. So I am now a true believer in the power of a positive attitude. Gosh I have so much I want to say about some life long friendships I have made, and details on what specifically has improved but I am going to save that for another day. I have been thinking all week about this experience, the power of the positive and how blessed I am and I started realizing there are a lot of things I have because of Lyme. I feel like they are important to share with you all. So here it goes.

Because of Lyme:
My faith in God grew
I've learned to give up control and totally rely on God
I've learned what is really important in life
I've learned what real friends are
Because of Lyme:
I am making healthier choices for myself and my family
I've seen a whole new side to medicine and healing
I've learned to be okay with needles
I've made some amazing new friends
Because of Lyme:
I've learned to be positive
I've learned that I am good an empathizing and sympathizing with people
I've found that I can be a great support to someone else
I've learned how to live with less
Because of Lyme:
I've learned to speak up for myself
I've been given the opportunity to chase my dreams
I've learned how truly blessed I am
I get to help lots of people

I guess I could go on and on, but the point is, Lyme has given me so much more positive than negative that I wouldn't trade it this experience even if I had the chance.

Friday, January 13, 2012

Hansa Day 10- This is Only the Begining

A hindrance to everyday miracles is that everyone looks at the lives of the people around them and sees only mutual misery. When disease becomes the norm most accept the disease as their lot in life by saying, "Why should I strive for anything else?" You must separate yourself from what the world says is normal and align all that you are to what God says is true (Romans 12:2).- excerpt from Everyday Miracles by God's Design by Dr. David A Jernigan

I am officially done with my last day at the Hansa Center. I do believe I received an everyday miracle of healing here and I am more thankful than words can express for what I have experienced. Each day going forward, I am expecting continued healing in my body and I know things will only get better.

Again today it has been hard to put my finger on what is different, but things are changing. After talking with the doctor I agree that it is like an "energetic" shift I am feeling. If you just went down my list of 20 some odd symptoms and asked what was better I wouldn't say a whole lot. But there is this underlying feeling of health and vitality mixed with bouts of energy that has me bouncing off the walls like a kid on a sugar high. I had to fight to keep my mouth quiet and my talking to a minimum the entire day. There are a few friends and family out there that know exactly what I am talking about. I talk a mile a minute, about anything and everything and just wear people out. This feeling makes me smile though. It is just like about 8 or 9 months ago when I had a random episode like this. It was almost like going back 18 or 20 years. It reminds me of the true me that go lost in feeling bad. There is a reason multiple people over the course of my life "randomly" would nickname me Sunshine. Well my sunny disposition is back and I vow to never let it get lost through life's trials again.

I may have a long journey ahead of me to get to complete healing but I am well on my way and I am going to learn to live in the moment. Each moment is a gift and I am going to do my best to appreciate them and to share God's love and light with everyone I can. I am learning that I am someone who can feel other peoples energy as well. The benefit of that is that I can now let my positive energy overwhelm someones negative energy instead of letting them be a drain on me. I think it also allows me empathetic towards other people. Gods going to use me in big ways. I can't wait.

Besides all of my positive energy there are some things to share on a more physical level about where I go from here. First off, I have totally changed my view of medicine and how I will proceed in mine and my families overall health. Biological and energy medicine will become a big part of our lives for sure. More on that later though. As far as I go...the doctor feels I am stable. The goal, as I may have mentioned earlier, is to get you stable if not better before you leave. I am stable but certainly have areas that I will continue to heal in as we go. One of the surprising things to me though, is how well my body cooperated. The doctor got to do things he normally doesn't in someones first two weeks. I don't think I realized how strong my body is. Over the last few years, I had fallen prey to some ideas over how sick I was and what the chances were of me getting better. After all, we believe I have had Lyme for about 26 years and it's not curable so what will my new normal have to be? What a sad way of thinking. There is no reason why incredible health and great things are out of my reach and unavailable to me. I am not reduced to a life of pain, sadness, and IV antibiotics. For those of you who are chronically ill, guess what , you don't have to be either. You can be well. You need to expect "everyday miracles". We serve an awesome God and nothing is out of reach.

Sorry for getting off track. So back to treatment. The plan is for me to stay on my remedies/supplements for about 60 days. I am not going to start or stop any medications or supplements in this time barring emergencies of course. I will be using my sauna multiple times week if not daily as well as doing daily epsom salt baths. I will be continuing to see my acupuncturist and maybe a new chiropractor as needed probably once or twice a month. I will do the ionic foot baths and massage as I can. I will go back to biophoton light therapy as my doctor wants. Both doctors at Hansa seemed really impressed with my doc and I really see some great things happening between them all in the future. I am so glad that this is working out. I don't know if I will go back to my LLND or not. Right now I think things are covered but I do believe she is a great doctor and I am glad to have her as a resource.

As far as coming back to Hansa...the doctor would like me back in about 6 maybe 8 weeks. I need to have my port removed not because they said but because I am done with the IV's and I am not going back. I am also going to try and have my retainer removed. Interestingly enough, Dr. J thinks the removing the retainer could cause me more issues then having the port removed.

Your body doesn't pay attention to names. It doesn't know what we call the bacteria and it really doesn't care. So just like when I gave you my top ten lists that would work for my kids. Although they maybe able to confirm that Lyme bacteria is present I just want my kids healthy and I believe we can get a good head start with out antibiotics or invasive methods by bringing them here. I am not going to worry about how this may all come together. I am keeping the faith. God has been working behind the scenes with my family and some things and I know this is a big year for us. I couldn't be more excited about the future than I am right now. Oh, we did challenge my vagus nerve this morning and got a little something to resolve but it may not have any affect on my heart. Again, as I continue to heal new things may come up. We were certainly able to get beyond the top layer of my problems and as things get resolved new things could show them selves. Its not that they are just happening but more so that they are uncovered now that the more pressing and serious issues have been resolved.

Well, I am feeling like that is a good place to end for now. I still have some pictures to upload. I will end up blogging about my trip home and will certainly keep you posted on how I am feeling. I may just do it once a week for a little while to give us all a break. I wanted to take one minute and talk about some of my new friends. First off Caity (and her amazing mom Joni), Sabine (and her wonderful husband Jack) and I all came here and started treatment for the first time last week. We are have become good friends as we have shared our journeys together over the past two weeks. I am so blessed to have them in my life and am going to miss them all. Second the staff at Hansa are all amazing and I will miss them. Crystal, my massage therapist, is AMAZING (not just at what she does, but as a person). Thank you for the amazing work you did and how much you helped me. Lastly the other families and people I met this week have been incredible as well. Nothing but stories of love and healing pouring out of this place. Some new like me others back for their third or fourth time. Some with strokes and ms, lots with lyme, so many different stories each seeming to have their own everyday miracles. And all the glory goes to God. It is Him, working through people. This is an experience I will never forget and I will do whatever I can to help other people experience everyday miracles. You don't have to be sick or come here for miracles to happen. They can and do happen right where you are at in your life! Many thanks and love to all of the people who have supported me in prayer or through an encouraging words. It means so much. Check in with you all soon.

Thursday, January 12, 2012

Hansa Day 9- Short and Sweet

Be Still and know that I am God- Psalms 46:10

Other than excessive yawning, I haven't really had any symptoms today. I got through all of my treatments great. My foot bath was not as clear as yesterday but clearer than its been. The doctor lovingly "kicked" me out of my appointment early because he couldn't find much that needed attention right now. As I continue to heal, more things may come out. He challenged me to go and do something which would normally make my heart rate go up and see what happens. So I will climb some stairs a little later and see how my heart responds. This is more just to help us get to the root of the heart issues I was having. We will discuss it tomorrow and he may also stimulate my vagus nerve a little bit and see what we can get to show up. Other than that, at this moment in time, I am feeling great. I am so blessed. Thanks again for your support. Can't wait to tell you how my last day goes and how I feel tomorrow. Lots of people hear getting healed and still needing prayers. Love you all!

 "Thank you Lord for what you've done for me. Thank you Lord for what you're doing now. Thank you Lord for every little thing. Thank you Lord for you make me sing"- from Bob Marley, Thank You Lord

Wednesday, January 11, 2012

Hansa Day 8- My Ancestors

The heart of the wise teaches the heart and adds understanding to the lips- Psalm 16:23

Today was another interesting day. In fact I don't think any day here is not interesting. As has been the norm I didn't sleep great. I usually feel my best in the morning, after I get up and get going. So although I was tired I didn't feel too bad. The first thing I did was the Ionic foot bath. I always look doing that later in the day because I have usually stirred some things up and then I am removing them in the foot bath. So I wasn't sure what this mornings would look like. It pulled hardly anything out. To me that means one of two things- it didn't have anything to pull out since I did one later in my day yesterday or I am really making progress. Hopefully I will be able to tell by what tomorrows looks like.

I was tired but still had that kind of energized feeling at the same time. My brain was definitely having problems today. My head was spinning with thoughts and I couldn't read to save my life. I would one sentence and not retain any of it so I would read it again and again. It was very frustrating but maybe part of the retracing process. I could also tell that I am starting to get "hyper" in my talking. I am talking faster and more so that is definitely some of the old me coming back. Good or bad...I guess I will know when I talk to my husband.

By the time the afternoon came I seemed to quickly go down hill. I had a couple of dizzy episodes, and my  arms and legs just seemed week. My forearms hurt a little. My heart had been acting up a little and I had some shortness of breath. So that was perfect timing for me to see the doctor. My left shoulder started burning right after I got on the table so he worked on that to release some tension. Then we did more neurophoton therapy involving delta waves (I believe). This is what helps me stay asleep. We definitely had some things to resolve there. I only had to take about half as many homeopathics as yesterday but I did come away with a new remedy. This one is for myasims. Not sure on the spelling. Basically these are things my ancestors have passed down through the generations "energetically". So diseases or problems my ancestors had, would be passed on in the form of energy that imprints on the cells. They may or may not manifest symptoms but by resolving these, we can hopefully keep them from passing on (if I were to have more children) and they may resolve current symptoms. Basically we came up with syphilis which is really common in most families, cancer, and something that dealt with OCD, alcoholism, etc...Dr. J even said I could have obtained some of that from my husbands ancestry as well. Anyways, it was really interesting. Glad we got some of those things resolved.

Overall a good day and I still feel like we are making progress. The doctor certainly believes we are. I feel lucky that I am moving on to things a lot of people don't get to do this visit. I am looking forward to feeling better with each passing day. Thanks for following along. Keep the prayers coming, especially for sleep.