I’m sure by this time, if you live in the Northeast, you’re wishing you’d never see snow again. For me, it seems every time I have an appointment with Dr. Jemsek, we have snow. I had just finished my third month of treatment and was scheduled to go to DC for an appointment on Thursday, February 13, to be test dosed with the new antibiotic and to find out about my 4th month protocol. Just like last month, they were predicting a snow storm on the day of my appointment. Unlike last month, this time I believed them, and left the day before it was going to hit.
In doing this, not only did I make it ahead of the storm, but I also got to meet a sweet gal who is treating with Dr. Jemsek and who happened to have an appointment with him later that afternoon. We spoke for a few minutes while she was waiting to be seen by Dr. Jemsek. It was so nice to meet after all our FB conversations. She is a tremendous help to me and a blessing in my life.
After this, I headed back to the hotel for some rest and to wait. Would it snow and how much would we get? Well, snow it did. Although DC called a state emergency that day and most places were closed, Dr. Jemsek’s office was open! In situations like this, a core staff stays nearby given the complexity of the patients and the distances they come from.
All went well at the appointment. I was tested on my new antibiotic, Cipro, and had no reaction.
In addition, they explained some of the changes/additions for this month. I would be staying on the antibioitic Septra and the anti-malarials Mepron and Artemisinin, but I would be adding another anti-malarial medication, Coartem, to continue to attack Babesia. I would also be adding some biofilm busters to the mix as well–Lactoferrin and Xylitol. Biofilm busters are necessary because these bacteria hide in clusters, and if these clusters are not busted open, the bacteria will only come out later. This month, on Monday, Wednesday and Friday, I will run IV Cipro in the morning and IV Zithromax in the evening two weeks on, one week off, two weeks off for a 7 week cycle this time, going back to Dr. Jemsek’s on April 1.
The addition of IV Cipro is to start hitting the coinfection Bartonella hard, and the Zithromax will be continued because Babesia must be treated for at least 100 days at my stage, with multiple agents in order to get rid of it. It will be a rougher protocol than last month since we will now be attacking the various bacteria and protozoans directly. I will try to live in the moment though, recognizing the end goal.
I went back to the hotel room straight after my appointment because, by this point, I was starting to feel its effects. I went to lie my head down and noticed I was feeling short of breath. This sensation of complete exhaustion but extreme shortness of breath lasted about 4 hours. It was alarming given that I was in a hotel room alone. I did call the afterhours service to ask them their advice and they told me to go to the emergency room if it got worse. Given that I’ve had most of these symptoms at one point or another, I have learned to try to ride them out. Thankfully, it went away on its own.
I left DC the next morning, Friday, February 14, to make my way back to Betsy’s. I then started my current round of treatment that Monday, February 17. This regimen seems to knock me out more than the previous treatments so I find I am sleeping more during the day as well as at night.
Honestly, I do not know what I would do if I had to work a 9 to 5 job right now. In fact, sometimes it seems like a lifetime ago that I had the energy to work the kind of hours that I did. I still hold out hope that I will be working to that extreme again … working full steam ahead in a way that makes a difference in this world. When I say working full-time, I may mean volunteering full-time. That’s not the part that is important. What is important is that there is so much heartache, so much suffering and so many who have so little that I want to be used by God to make a dent in these injustices. Whatever it is that I will do, it will be something I am impassioned about. Life is too short not to make it count. For now, I try to be faithful to the path He’s given me. It’s not one I would have predicted but one that does give me peace, joy and purpose.
One of the unexpected surprises of my time at Betsy’s is a boy named Duncan who just brightens up the house. He and Marcy (the dog) are always happy to see me when I arrive back from spending a few days with my mom. Duncan does his 7th grade homework in my room on the study chair and Marcy plops on the bed with me for her endless hugs. We have lots of talks while Duncan does his homework, and I get to learn a lot about how the mind of a 7th grader works!
On another note, my dad is on hospice at my mom’s, and I feel gratitude that he is well taken care of and not in pain. I talk to my mom daily and her positive attitude inspires me. I am fortunate to have a mom who sees the best in all situations. God has been so good to have kept my dad around for so long, and He is so good to have given my dad a wife who takes her vows so seriously. I feel she misses out on so much since she cannot be out the way your average retiree would be, but she does not complain. She is quite a role model to me.
Holding on to hope!!
“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of His Holy Spirit.” Romans 15:13
Month Three Visit
January, 10, 2014
During my second month visit to Dr. Jemsek’s, we had a snowstorm but Betsy and I were able to survive the elements and drive. This time, they predicted snow again but I assumed we would still be able to drive. Well, it hit so hard that all the roads were icy and the schools were closed. It was difficult for Betsy to go with me since her son is school age and was off for the day. I was concerned about missing my appointment and being off schedule. So … Betsy dropped me off at the train and, in spite of all the chaos of the trains being canceled and delayed, I made it to the appointment. I was 45 minutes late but I made it!
At this appointment, Dr Jemsek told me I would stay on IV Clindamycin but would be adding IV Zithromax. The IV Clindamycin would continue to target the spirochete form of Lyme, and the IV Zithromax would be added to start attacking Babesia head on. In addition, I would be taking the anti-malarial Mepron as well as the herbal Artemisinin to add to the battle against Babesia. Working these together helps prevent this protozoan from building up a resistance. I would be on a Monday, Wednesday, Friday schedule two weeks on, one week off, two weeks on, one week off. Because it is such a complicated science, this should only be done by a well-trained LLMD.
The protocol has been going well after a minor adjustment of adding some anti-nausea medications but unfortunately just the sight of Mepron, a bring yellow liquid with the consistency of paint, make my body sweat and go queazy. Dr. Jemsek says it has to be taken for 100 days to ensure we’ve gotten rid of Babesia, and this will be a day I will celebrate.
Holding on to hope!!
“The Lord is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song.” Psalm 28:7