Getting everyone up to speed

Some of you already know, but I'll give you the super condensed version of the history behind what is going on. Then, you will all have the background for the updates I post!

I got Lyme Disease 12 years ago when I was pregnant with William during the spring of 2000 as I cleaned the yard of the new house we had just bought out by Lake Perry. I chalked the resulting aches, pains, nausea and fatigue up to pregnancy morning sickness. My health which had always been extraordinarily good began it's slow decline. William was born seemingly healthy but he continued to get doses of Lyme through breast feeding and suddenly began to fail to thrive when he was 8 months old. We didn't know at the time why my breast milk was suddenly not good for him, but it wasn't. Although I wanted him breastfed, I followed my gut feeling and stopped and he recovered quickly on formula.

Around this time, I ended up with chronic hormonal issues, multiple fallopian tube infections, and ear infections. I was often battling some thing or another. I ended up in the ER for my tubes one night as they were about to burst with infection. I was told I wouldn't likely have any more kids from the damage done to my tubes and scar tissue from countless infections. We did nothing to stop a pregnancy and I went almost 4 years and got pregnant with Tom.

During my pregnancy with Tom, my symptoms flared and ear infections were every 3 weeks or so. A specialist said if I didn't get surgery I'd die from a brain infection as bacteria had whittled my ear bones away and were halfway through the skull bone behind my left ear. However, it couldn't be done while pregnant and I had 7 months left to go. So, when Tom was just weeks old, in 2004, I had a mastoidectomy and tympanoplasty to correct my ear problems. (removed most of the bone in my skull behind my ear, installed titanium ear bones and made a skin graft ear drum with skin from behind my ear.) So, no more ear infections!

In between these various problems, we lived a normal life and I was still much healthier than I am now. We didn't know the cause of all of this was Lyme and co-infections.

As far as Tom goes, soon after his birth, we discovered he was struggling with low T cell problems and was battling pneumonia and failure to thrive. His immune system was weak. He had a hole in his heart that typically would heal as a child grew, but his hole was enlarging and the docs were scheduling surgery for him. Unbeknownst to us, both he and Willy were born with Lyme and company and it was causing Thomas to sleep all day long and all night from birth. I had to wake him to nurse him because he didn't demand to feed. At 10 months old, when I didn't think he would live to age 1, we fed him an immune system support supplement and it not only turned around his T cell count but also eliminated a need for open heart surgery because his hole in his heart which was steadily getting worse suddenly spontaneously healed.

Fast forward to 2006. Jim suddenly has heart problems that are perplexing because he passes stress tests and echos, but it is affecting him daily. He misses 6 weeks of work for crushing fatigue, brain fog and chest pains. After 9 months of doctors and frustration, he finally gets a Lyme diagnosis. He responds well to treatment and a few months after he was returning to health I asked my doc about myself and we test me and all the kids. I wasn't surprised I had it but I had no idea about the kids. They all were positive. Lyme affects everyone differently. Hannah had chronic headaches, Jacob's legs hurt like growing pains but it didn't stop and Willy was having memory problems and learning delays. We began 1-2 years of extensive treatment. Jim even lost the tip of his right index finger to this insidious disease infecting his bone. We all responded well to the treatment, but it wouldn't take much stress and I'd be on the decline again and again.

For the past 6 years I've had good and bad times, but my bad days are worse and worse and my good stretches are shorter and shorter. We have tried countless treatments and there have been successes here and there, but all of them seem temporary.

In the past year I've gotten so sick we have altered our lives in many ways to compensate. We have spent multiple tens of thousands of dollars on treatments. Since many Lyme treatments often are not covered by insurance or expensive even when they are covered, we have struggled financially to keep our heads above the water. God has provided just what we need when we need it! We have experienced this in so many ways.

I am to the point now of needing more than just antibiotics. My organs and body are shot from treatments and I need to build up and support lost functions to have any chance of beating this. I chose to seek treatment in Oregon because I have family here and Oregon is more progressive. Laws allow natural and alternative treatments to exist alongside western medicine. When you are told by western medicine there is no cure for adrenal fatigue (because there is no pill for it/nobody to get rich off of it), then you are forced to seek someone who CAN help. Between my two doctors, in Kansas and Oregon, I'm hoping for a more balanced approach to treating this disease. It's become desperate and urgent that something happen soon. I've spent more time in bed than not this summer- sometimes up to 18 hours in bed and only 6 hours up for days on end. My memory is gone, speech/word finding center is not normal, body is in extreme pain, blood work is out of whack, and I have felt like I am more dead than alive for months. I'm hoping for a cure, or at the very least to tip the balance between my immune system strength and these bugs.

However, I believe there are reasons for everything and I am content and happy despite this situation and even if I never get well. Being sick has changed me in more positive ways than it has hurt me. It isn't what I planned for my life, but I have been more blessed by things I haven't planned than things I have planned. God has this too, I am sure of it. He works mysteriously at times through less than ideal situations (from our perspectives) and I'm happy to be used as a tool for His work if that is what He wants.

Now that the big one is out of the way, I can update as news or prayer requests arise! Thank you everyone for your concern and care for our family. I appreciate the prayers more than you know.