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.

Real Test Results

After two years and one month of Matthew being sick we finally know why(we think). We are still in disbelief that this is actually true and even a little skeptical. A month ago a good friend of the family told me that they found a doctor that has been able to help their son (who has been not well for several years also). We have done so many tests with Matthew so I have become a bit unbelieving when it comes to testing for something new. However, we continue to pray that God would help us to figure out why Matthew suddenly became sick two summers ago.

After this doctor looked over Matthew's blood work for the past two years(he has his blood drawn every month)he told me he was pretty sure that Matthew is dealing with a bacterial infection(part of my disbelief is why has none of the other doctors been able to see this?). More specifically he said that he thinks that infection looks like it may be Lyme disease. Matthew has already been tested for Lyme disease in the hospital when he first got sick two years ago. However, I have learned now that you can not test for Lyme disease right away and get a positive result. It takes a while to get the positive result. Something that I guess the infectious disease doctor that ordered the test didn't know. The other funny thing is that while in the hospital two years ago they started Matthew on an antibiotic thinking he had meningitis. He stared to improve while on the antibiotic, but when the test came back that he didn't have meningitis they stopped the antibiotic. When I questioned why they were stopping it since Matthew seemed to be doing so much better their response was that it was just a coincidence that he was doing better during that time. Ugh! I wish I knew then what I know now!

So to not make this super long here is what happened. The doctor that we saw last month talked to another doctor in Boston who is suppose to be an expert on Lyme disease. He told this doctor here what test to have ordered. I took Matthew to have his blood drawn last week and sent his blood off to Texas to be tested for 20 different species of these bacteria. I got a call from our doctor here today telling me that he just got the results back and Matthew tested positive for two of the species. Borrelia burgdorferi (Lyme disease) and Rickettsia Montanensis. The second one is a close relation, I guess, to Rocky Mountain Spotted Fever, or maybe even it. Not sure.

Just a little f.y.i. Both of these bacteria are usually the result of a tick bite that transmits the disease to the host. Often those that get these diseases don't ever remember getting bit by a tick. That is our case.

The next step is to find a doctor that knows how to treat these with the right antibiotics. We are trying to be picky as we look for the right one. After two years of "trying" things and seeing several different types of doctors we want the right one that knows what he/she is doing. Not someone who thinks they might be able to treat him. Lyme disease is not very prevalent out here in Arizona. That may be why even the infectious disease doctor that we saw a couple times here didn't catch it. I don't know and that is a whole other frustration.

I don't know the prognosis for someone after having both of these bacteria for so long. I don't know when we are going to find a doctor(the doctor here is helping us to find and infectious disease doctor). I don't know what the treatment will be like or where we will have to go for it. I do know that we are still a little leery. We don't want to get our hopes up and have someone else say that those tests results aren't accurate. Dave wasn't quite sure I should even post anything yet, but I already said something on FB earlier...oops. Oh well. So here is our request. Please pray, pray, pray. God has been so good and brought us this far in our journey with Matthew. Pray that He would lead us to the right Infectious Disease doctor that really really knows how to treat both of these bacteria/diseases.

I will update this blog in the next few days and let you know where we are at with all of this. We are so blessed to have so many friends and family that support and love us. Thank you for your prayers for Matthew. God is good all the time!