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:
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
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.