No answers, yet

Michele writes the following about yesterday’s visit to the neurologist:

I went to the doctor today and there is not a lot of new information. My blood tests are elevated but only
slightly. This is good and bad, if they were drastically off then it would be clear what the problem is but because they are only slight it is hard to determine a specific cause.

The dr. ordered a Lyme Disease Titer and I had that drawn today so hopefully in a few days we will have a better idea if it is Lyme Disease.

The dr. feels that there is a possibilty that it is Wilson’s. She wants me to see an opthamologist to have a slit-lamp test (from searching the web, it looks like the regular eye exam light they use to check the interior of your eye, the thing you rest your chin in and press your forehead forward) to check for Kayser-Fleischer rings around my corneas. These are rusty brownish green deposits around the colored part of your eye that are indicators of Wilson’s Disease. As soon as I am able to get the tests done
we may be able to eliminate a few diseases!

So, no answers, yet, but we feel like we may know more soon.

Latest news about Michele (Updated)

Our saga continues…Michele is still not improving and I am still at home just about every day to help with the little ones. We got a call from her neurologist’s office earlier today, requesting that we come in for another office visit next Wednesday morning (May 11). We’re not sure what this will be about. We were told that they had blood test results, but we weren’t told what those results were. We used this opportunity to specifically request a blood test for Lyme Disease. We don’t know if/when that will take place.

So in short, we’re still waiting for answers. It is really, really discouraging to wait weeks and weeks without any answers and more questions all the time. Such as, how long can we do this? How on earth am I going to be able to do my job? Will I even have a job at this rate?

We also feel intensely alone and isolated because of Michele’s ill health. We are very appreciative of the meals that some have made for us and the prayers of many, but we are struggling with deep depression and anxiety right now. Every day is a huge struggle. I know that may sound overly dramatic, but it is true. I have never felt more uncertain about [and disappointed by] so many things in my life: faith, health, finances, job, relationships, church, emotions, you name it.

We have confidence that God is working through our circumstances for our good…somehow. It is very hard to not feel doubt and hurt, though.

[I neglected to mention that all three of our younger children have had colds for over a week now, which makes them even more crabby and needy for attention than they usually are. All four of them know something is wrong, that we are upset, and they "act out" without really knowing the cause. E.g. Brinley has temper tantrums several times a day, Tristan listens and obeys even less than before, and Cohen has turned into a very aggressive (hitting, kicking) little boy. Keegan is also struggling. Michele and I feel a lot of guilt about all of this.]

Lyme Disease is a possibility

Last week Michele was doing a lot better for several days, and we got our hopes up that there was healing taking place. However, her symptoms returned on Friday. Saturday she had a fairly good day, yesterday, not so good. Today, also, she is somewhat weak and shaky.

We are going later today to have more blood taken for additional tests ordered by her neurologist. Michele also has a 48-hr. EEG scheduled for May 23, which will require an in-hospital stay. We will be talking to her neurologist again later this week.

One thing that a number of people have told us to do is to verify with the doctor whether they have tested Michele for Lyme Disease (see http://www.cdc.gov/ncidod/dvbid/lyme/). Apparently Michele’s symptoms mirror those of people who have had this disease. One website we have consulted lists dozens of symptoms and says that if someone has at least 20 of the symptoms listed, there is a high probability that that person has the disease. Michele identified 39 symptoms from the list that she has experienced. It gives us some hope that this might be the answer, but we really don’t know until/unless tests are done.

Most days I am staying home and trying to do work remotely when I can. We continue to appreciate the inquiries and prayers of many.