Check Engine Light

Happy New Year. It has been a lot longer since I last posted than I thought. Reality is I'm not sure much is different. In fact in some ways I'm feeling almost like I did when I started this whole thing. I guess after unintentionally taking a break from everything I'm ready to get back at it. I'm praying that 2015 is truly the year I can put this illness to rest at least for a while. 

Not that long ago, I was having a moment of frustration over how bad I was feeling. I kept thinking there has to be something we are missing, I actually still kind of feel that way today. While there are so many similarities in my case to many others I have met there are also some definite differences with me and I haven't quite found what the missing piece is. I usually think that being different and your own person is a good thing, but in this case it's starting to drive me a little crazy. I have heard so many times how my symptoms or issues don't seem to fit the box. Let me tell you this is one area of my life where I don't want to be special. So back to feeling like we had to missing something...the thought popped into my head how much my body is like a car whose check engine light is constantly coming on but no mechanic can seem to find the problem. My body starts acting up and I know its time for another doctors appointment. We go over the problems I'm having and the doctor has an idea and runs some tests. By doing that my bodies check engine light is cleared. Just like the mechanic plugging in the code reader and clearing your check engine light when you bring the car in. You no sooner leave and your check engine light comes back on so what they thought they fixed wasn't the real issue. I leave the doctor, the tests come back normal but the problem continue.

I can honestly say the only symptom I have had any relief from is my burning nerve pain. It is still there on occasion but the not nearly as frequently as it was. The intense weakness and pain in my arms that was one of the main reasons I knew something was wrong it back. I have occasional moments where the words coming out of my mouth are gibberish like I'm having a stroke. My heart has been acting up again and has caused me to almost pass out twice in the past two months. My fatigue continues to be my biggest issue as it is a daily problem and I am back to being in bed a large part of my day fairly often. Bone, joint and muscle pain, brain fog and memory issues, and my uncontrollable muscle movements are all still issues as well. (I'm sure I'm forgetting somethings but you get the picture) I also have been dealing with an increase in intense pelvic pain that has bothered me on and off for years. After multiple tests and doctors visits I was diagnosed with pelvic varices which is varicose vein(s) in the pelvis. I have one very large vein that acts up on the left side but as things go with me the doctor feels that based on my symptoms the procedure to embolize that vein would not provide me with relief so he didn't want to put me through an unnecessary procedure. I also still have my port although it has not been used in a few years.

I didn't really know where else to go for treatment and I am not sure my doctor understood how bad I was still feeling. I knew I needed to let him know that I needed to do something and attack this head on again so I saw him last week. I made it clear that I am sick and tired of being sick and tired. We decided that I would attempt the latest treatment in his office and I knew that in order for me to have a fighting chance of this working I had to address my diet and detoxing  like I never had before. So here is the game plan. 

Number one is putting myself first. I have to say no to things outside of immediate needs for my family. Unfortunately I allowed myself to take on the roll of team mom for Jenna's softball team but I won't allow myself to take on anything else with the exception of doing what I can for some very loved family friends fighting their own health battle. No helping the teacher, going on field trips, not even taking on photography jobs for the moment. It breaks my heart to feel like I'm checking out on life but I know if I don't force myself to do this now, my health is going to eventually do it for me. If that happens, I will be in a very critical situation and I certainly don't want that to happen. 

Second, after much struggle,I am really starting to dial in the diet. I am realistic about the fact that this will be an on going challenge for me but I have finally made some big progress on this front. My gut is a big priority for me. Most of your immune system is in your gut and I know mine is not functioning properly so I have to got to get it healed. 

Next I will be focusing on detoxing with my main goal to use my FIR sauna everyday. I am trying to do this for a couple of weeks prior to starting the bug killing part of my treatment. This is what Hansa in Kansas focuses a lot on and I know it seemed to help when I was there.

 

For bug killing and immune support I will be doing a couple of things. First I am excited to be starting an essential oil protocol. I have slowly been incorporating oils into our families treatment for the everyday cold and flu stuff and can't wait to really start using these to their full potential whenever we can. My doctor doesn't want me on any antibiotics right now which was kind of surprising but I admit I am happy about it. I will also be starting UVL therapy. I am definitely nervous about this as they cant use my port for this treatment and they have to use a fairly large needle. In case you didn't know, needles and spiders are the two things I hate the most. Basically twice a week I will go into my doctors where they will use a 22 gauge needle to access a vein and insert a two inch catheter. A UV light is put in to the catheter (they use UV light for sterilization in a lot of places) and as my entire blood volume passes by that point all of the bad things like viruses and bacteria are killed. My doctor recommended doing the hyperbaric chamber in combination with this but it is quite expensive. In its place I will be riding an exercise bike in a room with high oxygen levels in between treatments.

My daily routine for supplements and meds other than oils is looking like this:

Levothyroxine

Metoprolol

15 mins. of oil pulling with coconut oil

8 oz warm water with lemon (oil or juice)

8 - 12 oz bone broth

2 oz kefir with 1 tsp flax oil and 1 tsp hemp oil 2x a day

magnesium

vit d

kraut or other fermented foods

My latest lab results indicate low Vitamin D (on going issue) and severely impaired immune system. The CD  57 is an immune system marker specifically affected by Lyme Disease. One of the leading authorities on Lyme Disease has said anything above 60 is good for a Lyme patient. However to be in remission with little chance of relapse you should be symptom free and that number should be closer to 200 for a few months. When I first got diagnosed my number was just above 60. Shortly after treatment started my number dropped (which is normal) and the lowest I got was about 27. At one point my number was back up to close to 100. The results I got today have me at a 16. Which is probably one of the reasons I have been feeling so bad. Needless to say I have a lot of work to do and need to fix this before it gets any worse. 

As a side note we are finally getting both of our daughters officially tested and will be treating them accordingly. I will include more on their situation in another post. As always, thank you for checking in and your prayers are always appreciated. I will try and do a better job of keeping things updated when I can. Wishing you all a healthy and happy 2015.

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.