This was my experience over the four weeks I spent in Scottsdale, Arizona, May 11 through June 9th. I expected to stay for a week or two at most, but it turned into almost a month, as I watched God make provision after provision for me to stay longer and complete various tests.
What did I do there?
What did they find?
Well, there were several things that came to light but nothing too surprising. One of the most significant discoveries is that my small intestine has a significant motility issue and is quite slow (not a surprise to me but now it's actually documented). The emptying study that revealed this was also supposed to give information on the colon, but since the capsule of the radioactive material that was supposed to coat the GI tract never left my stomach, they were unable to collect data on that portion of the test.
My autonomic nervous system has some neuropathy but that's to be expected with whatever is causing my underlying condition.
I am allergic to cats, grasses, ragweed, dust mites, and mold and have asthma symptoms so they'd like me to start using a daily inhaler. This may be part of the reason for my shortness of breath.
I was told I was anemic, had Chronic Fatigue Syndrome, and Fibromyalgia, but none of this was new for me. I had two iron infusions during my time there and am scheduled to potentially have two more at home. I continued to stay on TPN for my nutrition for 12 hours each night (intravenous feeding), but they replaced my g-button to my stomach with a longer g-tube for the purpose of venting (releasing air/pressure from the stomach).
Thankfully, other things were ruled out through the tests such as a more serious muscle disease, immune dysfunction, etc., but they were unable to determine the underlying cause for these conditions.
Where do I go from here?
I was encouraged to take every step possible towards better health, including using a recumbent exercise bike for a few minutes a day, doing breathing exercises, taking a drug that may help with motility, getting better sleep, and trying to see what my tolerance is for sipping liquids (an ounce per hour) and building up from there. These are all great things which will definitely help me if I am faithful to implement them, but I believe there are other things I need to add to this list as well.Although I have been ruled out for some of the most common mitochondrial diseases, the neurologist recommended I seriously consider having a muscle biopsy to test for other mitochondrial diseases or have one of my siblings do the biopsy. This is something we could consider down the road.
I had a follow-up appointment with Dr. Mozayeni here in Maryland this past week, and he believes he can help me move towards health with some very specific treatments. The first thing he'd like me to do is to have Hyperbaric Oxygen Treatments (HBOT) three times a week for several weeks to a month. The hope is that the extra oxygen that is made available to my cells while I spend time in the pressurized chamber will bring healing to organs, cells, decrease inflammation, and possibly increase my GI motility. He believes I have some type of protozoans in my system which most likely came with my original Lyme disease and babesia infection and are continuing to make me sick. There was evidence of this on a blood test I recently had done. I also may have a fungal infection. With either one, I would need to be treated with strong drugs, and my system is not strong enough yet to handle these. In the meantime, he wants to do all he can to build me up by doing the HBOT, improving my sleep, regulating my thyroid, and getting more protein into me.
I am also praying for clarity and faith to step out in a specific path when it comes to trying to get my body to accept food/drink and determine what diet could be the most successful/healing. I am still leaning towards the GAPS diet, but diets high in fat are very difficult for people with motility disorders. I have been trying some baby food squash and other non-dairy and low fiber foods and am so grateful that I've been able to swallow these things, but it has been very difficult for my system to take them. I've gained a good ten pounds or more lately, and haven't been at this weight since prior to 2008. Now I need to get physical therapy going and get some muscle back.
I could keep going, but I think this post is already getting quite lengthy. There is simply no way I could begin to thank you all for the countless prayers that you have lifted up on my behalf. I hope you know that they truly sustained me and were heard and answered!
It has been hard to consider the path ahead as I realize just how long it could be, but every time I begin to crumple and despair, I hear Him reminding me that I only need look at this present moment. There will be strength for the next one when it arrives. The quote below has been a great source of hope for me lately. I pray it encourages you as well.-------------------------------------------------------------------------
It doesn’t matter how complicated, how desperate, perhaps even hopeless your life has become. No matter how overwhelmed you may feel by your problems, if your trust is in Jesus Christ, you can be sure that he is praying for you now and through that prayer he will provide for you the resources to bring you relief or enable you to carry on.
The most important thing that you and I need to learn about prayer is this: first of all and ultimately, prayer is not something we do but what Jesus does for us.
— Richard B. Gaffin
"Christ, Our High Priest in Heaven"
*I'll try to write a separate post on some of my non-medical highlights from the trip. :)
