Answers, Explanations, and the Right Treatment

Its taken me a little longer to update about my Lyme Disease diagnosis than I had intended.  Its been a whirlwind week and a half.  The day after my last post I spoke to my doctor's nurse.  My MRI came back normal.  I was under the impression I was going to give the new medicines the doctor prescribed me some time to work.  However, that afternoon she called back and said that my doctor didn't want to wait to do the spinal tap and they were going to set it up in Medford at a sister hospital.  It was already late afternoon so the appointment for sure wouldn't be until Friday.  I got the call from the anesthesiologist to schedule the appointment on Friday morning.  At 3 in the afternoon I went in for my appointment.  A spinal tap is the same as an epidural except your legs don't go numb because they don't inject medicine.  The put a long hollow needle in your epidural space and you sit there for 30 minutes or so while the spinal drips into 4 tubes.  Each tube needs 1 milliliter each.  About halfway through the procedure I started to get a funny sensation in my head.  It was almost as if there was cool water around my brain.  The headache I had for 5 months got better and my head felt lighter and clearer.  It was really a strange feeling after it feeling so stuffy and full for so long.  When I told the anesthesiologist how it felt he said that I probably had some pressure around my brain and it was being relieved by the some of the spinal fluid being taken out.  I really hoped it would last.

Saturday we spent most of the day making firewood.  I posted a blog about it here.  Sunday morning the headache slowly started to come back.  By Sunday night my head was throbbing.  Monday morning it was so bad I called the anesthesiologist thinking it was possibly a spinal headache from the fluid still slowly leaking out where the needle was inserted.  He asked me a few questions but ultimately decided it wasn't a spinal headache because it didn't get better when I laid down and it hadn't come on for almost 2 days after the tap.  I didn't hear anything all day about my labs but I knew they would take some time.

On Tuesday morning I called my doctor's office and left a message asking about my labs.  About an hour later the anesthesiologist called to check on my headache and told me he got some of my labs back and none showed signs of infection.  They were still waiting on the Lyme antibody test to come back but he didn't think it would show anything because of the lack of any remarkable infection in the rest of the tests. He said my doctor would probably call soon to plan the next move.  Another hour later my doctor's nurse did call and told me the same things about the labs and that they still hadn't gotten the Lyme test back yet.  The nurse asked how my new medications were working and I let her know at that point I had been taking the maximum dose of the migraine medicine all weekend after the headache came back and it didn't help at all.  I told her I had been taking the nerve medication for the twitching since I got the prescription and it hadn't helped with the facial twitching either.  The nurse said she would talk to my doctor and call back.

About 30 minutes later she did call back.  My doctor wanted to see me again as soon as possible because clearly there must be something more going on than just nerve irritation and migraines or those medications would have helped.  Landon had his cardiology check up the next morning so I decided it would be easier to do all the running in one day rather than two.  I scheduled my appointment for in the afternoon after Landon's.

The next morning Landon and I got up early and made the hour drive down to Marshfield for his appointment.  Landon's dad met us there.  It was 3 hours long but it went well.  Afterward we all went to lunch together and Landon's dad took him shopping for a prize for doing such a good job for his appointment.  We had some time to kill between appointments.  We drove the hour over to Wausau stopping in Mosinee to see Landon's grandma and tell her how the appointment went and what the doctor said.  Landon's dad was on vacation so Landon asked to stay with his dad while I went to my appointment.  This ended up being a really good thing.

At 3 o'clock I went into my doctors appointment.  My head was pounding so hard I had to wear my sunglasses in the hospital because the florescent lights were just too bright.  The nurse checked me in and took my vitals.  My blood pressure was high but most likely because of the headache.  The doctor came in and talked to me about the medications not working and then brought up my labs on her computer.  The Lyme test hadn't been there in the morning when she checked.  As she started reading through she was saying how everything looked normal.  Finally she said Lyme Antibody Levels - Positive.  Chronic Antibody Levels.  Apparently this means there is both new and old antibodies present even after treatment meaning so far the treatment has been ineffective.  The relief to finally know I had been right all a long was overwhelming and I cried.  Finally I was going to get the right treatment.  What I knew all along was confirmed.

My doctor didn't skip a beat.  She said that explained why none of the medications she prescribed were working.  She called radiology to get me in to have a special IV placed called a PICC line.  A PICC line is a peripherally inserted central catheter.  A special kind of IV that can be left in for a long time.  It can be used for putting medication in and drawing blood out.  She put in a referral to VNA home health and a prescription for IV Rocephin once a day.  Shortly after a medical assistant came and got me with a wheelchair and took me down to radiology to have the PICC put in.



I changed into a gown and two nurses did an ultrasound of my arm and got me all prepped for the procedure and explained what was going on.  It actually happened really fast.  I laid on the table with a special xray machine over me to monitor where the catheter was.  The radiologist came in with an assistant.  They were laughing and joking which put me at ease.  The doctor assured me it would be fast and mostly painless.  They covered me with sterile sheets with just a small square of my arm exposed.  I had a sheet up by my face so I couldn't see anything.  I felt him put the Lidocaine in my arm and some pressure.  Then he was telling me they were done and just had to stitch the line to my arm and put the dressing on.  It was relatively painless.  Just the few pricks from the Lidocaine going in and the two stitches to hold the line in place.  A nurse walked me out to the entrance and I went and picked up Landon and went home.  That night my arm was really sore and uncomfortable.

Wednesday afternoon a nurse came from the home health agency and showed me how to do my infusion.  She changed the dressing too.  That was more painful than having it placed.  The catheter goes through a large vein in my arm, up over my shoulder and stops in a large vein just above my heart.  Its really important to keep it clean so I don't get an infection because it can go to my heart so easily. I do my infusion once a day around supper time. It doesn't hurt at all. The weirdest thing about it is that I can test and smell the saline when I do the flushes but that goes away as soon as the flush is done.

My PICC



I get my stuff out first. Alcohol pads, two saline flushes, the medication, and tape to tape the line back out of the way afterward.



I have to clean the end with an alcohol pad for 20 seconds.



Then I do a saline flush.



Then the Rocephin push. I push the plunger down 2 lines each minute. It takes 10 minutes.



Then I do another saline flush and tape the line back up. Its really simple. I get to do this every day for a month. My doctor will recheck my Lyme Antibody levels after that to see if I need to do anymore treatment.

So far I haven't had much improvement but I've heard it can take awhile after the treatment to get back to normal. I'm just thankful I'm finally getting the right medicine.