Monday, May 30, 2011

Toward a Diagnosis

I know some of you have been waiting and wondering about the results of Vance's doctor's appointment last week. I am sorry it's taken me so long to update. Things are just busy around here, and it's hard for me to get more than a minute or two together that aren't already spoken for by someone or something.

We went to see an Infectious Disease specialist at USF on Thursday. Unlike Vance's other doctor appointments, we felt like this one was actually helpful. The good news is that Vance does not have a life-threatening diseases. He doesn't have hepatitus or cancer. His blood tests have come back beautifully, ruling out autoimmune disease, adrenal failure, and other possible infections. The doctor also said that he's sure Vance does NOT have CMV.

So we're left with ... chronic fatigue. They don't really know what causes it, don't have a cure, and can't really treat it. It can last anywhere from a few months to the rest of your life. It can be mild, severe, or debilitating. As best I understand it, CFS seems to be the result of an immune system that just won't shut off. His body is running in overdrive all the time. Basically, the doctor told us that there was no one he could refer us to, and nothing traditional allopathic medicine could do for us. He told us to check out homeopathic medicine and dietary changes, and gave us the name of a doctor who uses some alternative treatment methods for CFS and Lyme disease.

In many, many ways, we've felt very relieved after Vance's appointment. It is, of course, unnerving that chronic fatigue doesn't have a cure or even a standard trajectory. The internet is my enemy here, since it is the outlet for the embittered and malcontents of the medical world. Start searching for information on chronic fatigue and it's all too easy to envision the future with Vance in a semi-vegetative state for the rest of his life.

I was initially feeling overwhelmed and discouraged as we drove home. I kept wondering, "What are we going to do if this doesn't go away?" But that evening, I was overwhelmed with a sense of peace and faith about all of this. We are back to where we were before Vance's "diagnosis": waiting for God to raise him up. I am content to be in that place. I believe that God will heal him, and while we will do everything we can to help him recover, we are ultimately and finally dependent on him to come.

So where do we go from here? We're still working that out. I'm going to be putting Vance on the GAPS diet first. It's often been used to help children with autism, adhd, and developmental delays, but it's a diet that has been helpful for people with UC, Chron's, IBS, autoimmune issues, Lyme's disease, and chronic fatigue. The purpose of the diet is to heal and reduce stress on the digestive system, which is closely linked to the immune system (70% of your immune system is located in your GI tract). I don't know if it will help. I know it's not going to be particularly fun in the beginning stages, but at this point I would spoon-feed Vance an elephant if I thought it would make a difference.

After that, who knows? Researching alternative treatments for CFS feels a bit like walking into a crowded room and shouting, "Who wants my money!?" Everyone has a corner on this market, and it's very difficult to know who is really able to help and who is a quack. And many of you know that my very intelligent, very scientific husband likes treatment backed by scholarly research and peer-reviewed journal articles.

The past two weeks have been particularly difficult, but I have been overwhelmed with blessings in the last four days. Vance has been feeling a good bit better, we had a good friend visit from MN, our friend Dave took Isaac and Claire out for a wonderful 4.5 hours on Saturday (and came back with flowers for me and Gatorade for Vance :), another friend sent us dinner on Sunday, and Dave came back today to mow our lawn and blow the leaves off our roof (thank you, thank you, Dave!). Someone prayed for us last week that the kids would be obedient and peaceful during this time--they've been playing dog and master since Friday for hours and hours. God is taking care of us, and we are beyond blessed.

1 comment:

Susan said...

GOSH! As much as I'd like to see you spoon feed an elephant to Vance I am not sure MY stomach could take it . . . SO glad you are trusting GOD everyday for HOW you all will get though this very rough and trying time in your lives!
Psalms 121
In Christ ~Susan Wilson