"take this more often"..."don't take this"..."take this instead"..."keep taking this"..."but only take it 3 days in a row each week"..."oh yeah, take these on the same 3 day schedule too"..."but take them 2 hours before or after the other ones"..."take this drug twice a day on Thursday June 4 and Friday June 5"(i'm not kidding)..."take 4 times as much of this one"..."take all these new supplements too"..."go to LabCorp and get blood drawn for these tests"..."your doctor has ordered 29 tests"..."we will need to draw 19 tubes of blood"..."do you know how much this is going to cost?"..."we're almost done. this is the last tube"..."oh, she's fainting".......................
It was a big day today. We stayed at a hotel near Carowinds last night. We woke up around 6:00 and got ready to go get some breakfast and go see Dr. Jemsek. We got to his office just after 8:00 for an 8:30 appointment. We spent about 3 hours there seeing everyone. Dr. Jemsek's feeling was that Lynette could not be in the condition that she is only having been infected since September. He didn't think it was possible for her brain lesions (indicated on MRI) to develop that quickly. He suspects she may have had a dormant infection for some time that just happened to show up when the symptoms flared.
Dr. J's strategy is all about pulsed therapy. There are a lot of different antibiotics. They all come with a host of efficacies and tolerabilities. Some of them can cause a lot of harm to the people who are taking them. Pulsed therapy moderates constant intake of antibiotic drugs. Instead you take them for a few days, then you stop for a few days. There is a lot of evidence that this therapy has many benefits.
One of the downsides to taking antibiotics on any schedule is that that the antibiotics kill much of the desired flora in your digestive system. You have to take probiotic supplements in order to replenish this desirable bacteria. It doesn't make sense to take the antibiotics and probiotics at the same time. Dr. Jemsek pointed that out to us today. If Lynette only takes the antibiotics and probitics 3 days a week, we can save a few coins those other 4 days.
The most popular IV antibiotic for Lyme can cause gall bladder disease. There is a crystaline metabolyte that builds up in the gall bladder of people who are taking Rocephin. If you aren't taking this medicine every day, you don't get the gall stones that happen occasionally to people who take this drug. This is another side affect is moderated with pulse therapy.
Dr. Jemsek was mostly in agreement with Dr. Fishman's treatment protocol for Lynette. He prescribed some different supplements and told us to increase others that Lynette was already taking. He also prescribed another drug which is an antibiotic, called Flagella. It seems to have a different mechanism than regular antibiotics. I don't understand how it works. I'll have to do more research on it.
Dr. J ordered a bunch of laboratory tests for Lynette. We came back to Winston-Salem with the order form and went to the local LabCorp facility. The lady that processed our order was pretty amazed that 29 tests had been ordered. The analysis that their system performed said the tests would require 19 tubes of blood. The first 5 came out of the left arm but it decided to stop producing. They put a needle in the right arm for the rest of the tubes. They got to the last one and Lynette said, "I need some Pepsi." I went to get a soft drink out of the vending machine. By the time I got back she had fainted and was back to reality.
In about 4 weeks or so, the next time Lynette sees Dr. Jemsek, he thinks she will probably be ready for IV antibiotic therapy. He uses a hospital in North Carolina, close to his old practice, that inserts the PICC lines. He spoke very highly of them. Even the IV antibiotic therapy will be pulsed. He suggested 5 months as an appropriate therapy. Lynette and I were both surprised because we expected something shorter.
Lynette really did well through the whole trip. We ate with Lauren and Danielle on the way down at Lauren's Olive Garden at Concord Mills. We entered and exited a hotel, including taking a shower. We visited the Doctor for 3 hours, had lunch in Uptown Charlotte where she had to walk 3 blocks between the parking deck and the restaurant, and came back to Winston for the whole LabCorp ordeal. She really is getting a lot more mobile.
Dr. J is adding a PA to his practice who is in agreement with his diagnosis and treatment philosophy. The PA is starting very soon and we were able to get Anna an appointment on May 11. Dr. J had a visiting physician from Wisconsin (Lyme endemic area) who was observing Dr. J's MO. We had Anna's IGeneX labs with us. He asked to see them. His conclusion based on him seeing Anna in his presence was that she would respond well to oral antibiotics.
Happy 15th Anniversary Lynette