Learning

This past week has been full of learning. This time last week we were so thankful to have some answers to why Matthew has been sick these past two years. We are still thankful, of course, but we had no idea of the work we were going to have in trying to get him treated. It didn't take long for us to figure out that there is a huge rift in the medical community on their belief of Lyme disease. HUGE. According to one of our doctors, other doctors have been run out of town for diagnosing and treating Lyme disease. It is crazy.

So you must wonder why. So do we, but what we understand it that Lyme disease is very hard to detect. The spirochete, or organisms/bacteria, are very tricky and don't always come through on the current FDA approved test. The ELISA and Western Blot tests are the current approved tests. However, they have a huge rate of inaccuracy. Why they are used I don't know. Very sick people have gone to doctors to be tested for Lyme only to have their results come back as negative and the doctors shoo them out the door telling them they don't have it. Then years later those people find a doctor that looks at them again and treats them for Lyme disease and the people are better. We know of friends of friends or read of people who have had such cases as this. Those first doctors certainly can't admit that they were wrong or there would be law suits all over the place. Instead they say that those people really aren't/weren't sick and that other doctors are over prescribing antibiotics. I'm sure there is much more here that I could say about this, but this is basically it in a nutshell. There is also a divide on how long to treat for Lyme if someone is treated.

We started to wonder if the test that Matthew had done was accurate. We have found out from a friend who has knowledge of labs and testing in the medical field that indeed the test should be considered reliable. Matthew had a PCR test that is done at the genetic level. The lab has all the right certifications for doing reliable testing in the proper manner. The problem is that it looks like this lab developed this particular test and it is not yet FDA approved. That makes a difference with insurance accepting it as a diagnosis. To us though we feel the confirmation that even if insurance won't help us at least we know we should still keep moving forward with this.

A blessing last week is that our appointment with our Rheumatologist went well. We had an appointment with her on Friday and that was the first that she knew of any of this. She is actually willing to think through this with us and talk to some doctors for us. We expected her not to believe any of this (as we know now of the rift in the medical community). So we are still looking for an infectious disease doctor who will talk to us. We most likely will be going somewhere outside of Tucson and probably outside of AZ as well.

Please continue to pray for us in this process. It is taking a lot of time and we are feeling spread thin right now. But, we feel the urgency of finding someone for Matthew soon. Please pray for Matthew as he is starting to be more sore in the mornings again. One of the reasons that the Rheumatologist was willing to look at this more with us is that Matthew's blood work keeps coming back worse these past few months. It should be getting better as he just started another new drug in April and was doing better at first. This his how it has gone with all four of the Rheumatological drugs he has tried. Pray for his little body to be protected. Some people get treated and are fine. Others are treated and then have long term effects from the chronic inflammation that the Lyme caused for so long. We are praying for total healing. Pray for us as we keep learning and have many decisions to make. Our hope is in our Lord and Savior, Jesus Christ, and not in the people/doctors of this world. He is where our peace and comfort come from.