The Beginning
In 2005 Emily started having pain in her hands and feet. After a couple months of this her fingers started to curl and lock each night. After numerous doctor visits, blood tests and a swift decline in Emily’s condition she was diagnosed with Rheumatoid Arthritis. By the time she was able to see a Rheumatologist Emily could barely walk. The disease had spread quickly through her body affecting almost every joint. The doctors prescribed a series of medications that after a year allowed her to mostly live a normal life. After 3 years Emily was even able to take up running. She was able to, once again, be a part of her children's’ lives. This however was short-lived. By 2009 Emily’s body began rejecting the drugs that were suppressing her immune system. A big problem was that the doctors only knew how to treat her symptoms. Nothing was being done to fix her. The more medicine the doctors added the more side effects Emily had. This led to more medicine being added to counter the side effects. Emily’s body was now failing at a quicker rate. She developed stomach ulcers from all the medicine. Her liver was on the brink of failure. By the end of 2010 Emily was at her breaking point. She had a continual fever of 101°, severe pain in her joints, her skin felt paper-thin and hurt event to touch and she had a rash that covered her entire torso. She was in bad shape. The doctor’s only solution was to prescribe more steroids. Something had to change.
This was the beginning of Emily’s journey to find a cure. Over the course of the following year Emily saw many new doctors. In years past Emily had been told she could have Lyme disease. We were skeptical and didn’t take it seriously. Now we had to consider every possibility. Each of the new doctors we met with told her that all her symptoms pointed to lyme disease. We thought to ourselves how is this possible, Lyme disease is not very prevalent in Utah. So we started thinking back to when she first started having symptoms. At that time we were living in Sterling, VA. So we did some research and found out that Loudon County had the highest number of cases of Lyme in the state. At the time Emily was 7 months pregnant with our youngest. She had developed a rash over her body as well as intestinal problems. The doctors performed many tests, but didn’t find what was causing it. She also went into early labor. They prescribed a medicine to stop the contractions. Eventually the symptoms went away and our youngest was born. It was shortly after the birth that Emily started having pains in her hands and feet. At the time she just figured it was from all the stress of preparing to move back to Utah. So now returning to the present; We started treating Emily’s disease for what it was, Lyme Disease. This however presented a serious problem. Lyme disease is a hot button disease. Doctors won’t even talk about it. If you bring it up they drill you with condescending questions asking why you think you have it. We found a european doctor that took a different approach to treating the disease. Emily did not respond well to the treatment. She was still digressing. We tried many alternative approaches, some helped a little but not enough. We found a doctor in Seattle, WA that specialized in Lyme Disease patients. Their treatments helped Emily, but there was not a way that it could be sustained for very long. We would have had to move there in order for Emily to have a lasting effect. We had to find a local doctor that had an open mind to Lyme disease.
In January of 2012 Emily had digressed to the point of desperation. We had heard about a doctor having success treating people like Emily but we knew it wouldn’t be covered by insurance. However Emily was so sick we were afraid she was going to die. We met with the doctor in January and had a large amount of blood tests done. They confirmed what we already knew, Emily was in bad shape. Emily began going to the clinic every day. Normally they are only open Mon-Thur but seeing how bad Emily was the doctor came in on Friday, her day off, to treat Emily. Emily responded to the treatment. Emily had been going downhill for so long that it was hard to believe she was actually improving. After 2 weeks Emily was able to stand on her feet. After another week she was able to take baby steps. She could take about 5 steps before she was exhausted and would break out in a sweat and start to collapse. After a couple more weeks she was able to walk all the way to the front desk before having to sit down from exhaustion. Emily continued seeing the doctor every day for for the next 2 months. The progress was slow at times but we were seeing continual improvement. In May Emily was finally able to scale back her treatments to twice a week.
This doctor was able to bring her out of the downward spiral. Emily is improving. Now we are working desperately to raise the funds necessary to continue her treatment.
Below is a little bit about her treatment and what she went through for the first few weeks back in February 2012 with the German doctor: This is an excerpt from her blog:
The doctor said, “Emily you are in trouble, but the good news is we have a lot to work with. There are 25 levels on your blood work that are not normal. It’s going to be a long road with extensive treatment. There are 3 levels that are extremely out of control and in her words and are very unacceptable”. She is a German doctor and her accent is fun to listen too. I can imagine her accent in my mind as I am writing this. She said my Rheumatoid Factor level reached 600 or could be even higher than that with that being the highest number it ranges up to (Normal is 14 or less). With that being high and an infection being the highest she has ever seen 1280 (normal is less than 10). And my Eosinophil’s being high which measures my allergic response being 1725 (normal is 0 to 500). She said with these 3 being so high, those alone can be very deadly. She said that I have critical numbers and that life is fragile. She said that even though I still have life force, with so much inflammation and infection it’s not reliable knowing what will happen next. There is an urgency there to get intravenously treatment now.
The doctor said based on findings, the good news is there are angels watching over you. She said it just puzzles her how normal my heart beats are with that high of inflammation. She said by having that kind of inflammation throughout the body, my heart has to work that much harder with my input and output. She said my heart is strong. I kinda wonder if being a runner in the years past kept my heart strong and prepared me for this trial now to keep my heart strong. Who knows. =)
After that she gave us roughly an idea of what it’s going to take to get better. The Dr. stressed to Emily the seriousness of her condition and that it was only through Emily’s strength and sheer will to live that has kept her alive. To sum it up she said we need to do more than just address one part of the disease; we also need to address Emily’s whole system. The major hurdles to overcome are her nervous system which is entirely out of control, the swelling in her joints, the malnutrition from her body’s inability to function and finally correct the damage that has been done from the past year of being bed ridden.
I think it was about after a week and a half of treatment that I took my first steps. I am kicking myself for not documenting that. Kent and I were just too excited and amazed. I was hunched over holding onto my wheel chair. They had me use it as a walker. I could barely walk or move. It was inch by inch, but at least it was something. I had to relearn to move and lift my feet. To relearn to move your muscles you have to think through every little movement. I would try without success and think, oh yeah what muscle was that, how do I tell that part of my brain to tell that muscle to move. It was hard. Each night I would wake up drenched in sweat. I think that was my body’s way of getting rid of toxins. I remember for a full night straight and into the morning I peed about every 2 hours. (Poor Kent had to get up every two hours and had to stay constantly with me.) I lost about 15 pounds in the first week from my body clearing the inflammation.”
Improvement September 2012:
There are the little things that tell us how much stronger she is getting. She sometimes doesn’t even realize the improvement but others can see it. She still has a lot of up and down days. She calls them her roller coaster days, but her good days are getting better and better.
~ At the beginning of treatment to get in the hyperbaric chamber Kent had to carry her in a cradle hold to get her in and out of it. Otherwise it took 2 employees to get her out. Now she can get in and out with a little help. She can help push with her legs and move a bit around inside
~ Her strength and endurance has increased. On a good day she was even able to walk all the way to the park down the street.
~ She also has regained enough strength and movement that she can enjoy the freedom of driving again. Up to that point she hadn’t driven a car in over a year. She was overjoyed with the feeling of liberation.
~ Emily’s nervous system was severely out of sorts. She can finally scratch and itch and not flinch from the pain. She has even been able to enjoy a foot rub from Kent.
We are very pleased with the progress she is making.
“Under Our Skin” For those interested, this video is a Lyme documentary. It explains a lot of how I feel and has a lot of similarities of what I have gone through. About the first 5 minutes there is a girl who is very similar to how I am or was at times except I was more confined to a wheel chair and bed ridden when it was bad. Her name is Mandy with blonde hair. The other difference with Mandy is the disease affected her speech where mine is not. Lyme’s disease can manifest in different ways. Mine manifested in all my joints.
Kent, is currently working on bringing the rest of my history up to date 2014.
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