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 go...am 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 lost...how 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.

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. 

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.  www.surfchaserphoto.com

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. 

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.

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.

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 issues...it 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.