3/23/10

Utter frustration are my words for today.  My last visit with Dr. Forester in Louisana was very frustrating to say the least.  I felt, if it weren't for my research and knowing what questions to ask (even though I already knew the answer), we would have left in the same shape we came in.  Its frustrating driving 4 1/2 hours to see a doctor, that you have to remind that you have Lyme, only to have to yank and pull to get any answers or progress.  Not sure that made sense in words.  One of my questions was how we knew the Doxycycline was being effective since what I read was its not unless there high levels of it in your blood consistently for 48-72 hours.  I already knew the answer but was trying to direct Dr. Forester to take action, help me fight.  He said that a blood test is needed, and so, we should do one.  I don't remember a lot of things anymore unless they are triggered by something, but I specifically remember asking him if we could do that test there that day and he said yes.  I had blood work done at his office and along with HHV-6 levels being tested again, the Doxycycline levels were supposed to be tested.  He called days after this appointment to share with me that the blood work came back normal.  Again, he voiced his shock that the HHV-6 levels were normal.  I inquired about the Doxycycline levels and he said that test had not come in yet.  I waited a couple weeks and called and left a message, specifically inquiring about the Doxycycline levles.  Yesterday, I received a message directly from Dr. Forester with the results of all but the Doxycycline levels.  Chris call, left another message stating we wanted only the Doxycyline level results.  Today, I received a message stating that their lab doesn't do that test that maybe Labcorp in Texas could do it.  Are you kidding me?
So here I am on 3 heavy duty antibiotics that no one is monitoring.  I do not have a single doctor monitoring these chemicals.  Here we are at least 3 months into knowing I have Lyme, an answer, but I don't have a doctor on my side that is managing it and fight it with me.  Only a person who truly understands how complex, complicated and nasty Lyme is will understand my frustration today.  I have this bacteria in my body that has been having a party and multiplying for 10+ years.  It has made its home in every crevice of my body...tissues, joints, brain, heart, blood and it is so nasty and sly that it will hide behind fibroid tissue where it can't be touched.  To make matters worse, it takes on different forms.  No one medication can attack all forms of this vicious bacteria.  To make matters worse, it will take over a year just to clear this bacteria out of my body....even then, there is no test to determine whether it is all gone.  This is a disease that has taken my mind and my body.  No, I am not the worst off but I sure don't want to get there.  And yet, I can see even in this last week, a progression in symptoms.  My frustration with this disease increases with the symptoms and the fact that I can't seem to find a competent doctor that will fight this with me and see through to the other side.  I have been praying for God's direction on this.  I didn't feel we were supposed to go back to Louisana to see Dr. Forester and today's phone message affirms that.
Chris wants me to stop the injections because they are beating me up.  So I am faced with taking medications and throwing money down the drain and needlessly putting chemicals in my body because they working due to not being monitored. Or, I can stop taking them and then nothing is "fighting" the bacteria.  Sounds like a no win situation right now.  I just want to get well and have my life back where I can function as a mom and a wife and a friend.  Please pray for God's direction and for God to send us a doctor that will fight this disease with us and for us.