It’s a Marathon not a Race

imageIt’s always interesting when your doctor tells you, “This will be the hardest month.” I saw Dr. Jemsek for my 6-month checkup on Thursday, May 1, the first day of National Lyme Disease Awareness Month.

Dr. Jemsek was pleased that I have been tolerating the treatment so well, and warned me that the 6th month treatment would be the most difficult of any of the months. He explained that we would be doing heavy biofilm busting the first week of the protocol and lots of clean-up the second week. The third week will include heavy hitting of Babesia. This will result in attacking the bacteria that have been in hiding and killing them.

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Month Five…Can it Be?

Receiving my Month 5 Protocol

 
Betsy and I drove down to Washington, DC, on Tuesday, April 1, to see Dr. Jemsek for my 5 month appointment. He told us that he was happy with my improvement thus far, and that I would now be entering the hardest two months of my protocol.

Dr. Jemsek writing out my plan

Dr. Jemsek writing out my plan

“Thus far, we’ve cleared out the periphery but now we have the biofilm to blast, which is the deepest layer. The disease likes to infect the bottom of the brain, and we need to get it out of there with some heavy hitters. We will be using IV Merrem as well as a new one called IV Tygacil to reach those layers.”
The nurse mixing up Tygacil

The nurse mixing up my Tygacil test dose

Tygacil can make a patient nauseous so he said that I should keep ginger, Zofran or phenergen on hand.
 
After they ran the Tygacil in the office, I went straight back to the hotel and fell asleep for four hours. I woke up for some dinner and slept another 12 hours but I never got sick. This was my prayer, and I was grateful to God for His protection.
 
Month 5 will require treatment for 3 weeks in a row with a one week break at the end. The first week I will be dosing with the Merrem and Tygacil on Monday, Wednesday and Friday. I will also be taking an oral antibiotic, antimalarial and anti-fungal Monday through Friday. In addition, I will be mixing xylitol with water and taking 2 tsp a day for 8 days along with a pill called Lactoferrin. This makes a sugar alcohol mix that acts as a detergent scrubbing open the biofilm that the bacteria hide in.
 
On the second week, I will be running IV Merrem and Cipro twice a day Sunday through Thursday. Cipro makes me queasy, and I’ve never taken it 5 days in a row so I pray for the best. The next week I will take the anti-malarial Coartem, which gave me intense nightmares and made me feel depressed the last time I took it. But I’m thankful it will only be for 3 days.
 
brain-answersThis month’s protocol will be pulling the bacteria out of the brain in the most powerful way yet. Thus, the side effects could be harsh, both physically and mentally. As always, I will need to think with my head remembering that God is there with me even when my emotions try to tell me otherwise. I’ve been very blessed with a core support network and a good God so I know I will get through it yet again. There is a lot to be hopeful about!

Halfway Mark

A shot right after finishing treatment

A shot right after finishing treatment


As of last night, I finished my last IV antibiotic for the month of March. This means I am at the halfway mark for the IV antibiotic phase of my treatment…4 months down and 4 more to go! Thank you, Jesus!!

Although I still have to take an anti-malarial for the next four days, I will actually be off IV antibiotics until April 1 when I will go back down and get tested for my next round. Please pray for safe travels down and that I will tolerate the test dose.

The Month 5 antibiotic can cause some pretty potent side effects. So please pray that once I begin Month 5 treatment on April 7, I will be focused on the end result and not live in the day-to-day effects that it might give me. I need God’s strength to get through the hardest phase of my treatment protocol.

Thank you,
Karen

Holding on to hope!!
 
 
“Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

Third and Fourth Month Visits to Dr. Jemsek’s

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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.

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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.

Duncan and Marcy...Two of my favorite people!!! :)

Duncan and Marcy…Two of my favorite people!!! 🙂

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

This is the dreaded Mepron, which is taken to fight Babesia. It is a neon yellow color and has the consistency of paint. It is not easy to swallow and makes my body sweat as the time arrives to take it.

This is the dreaded Mepron, which is taken to fight Babesia. It is a neon yellow color and has the consistency of paint. It is not easy to swallow and makes my body sweat as the time arrives to take it.

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

Month Two: Return to Dr. Jemsek’s for Next IV Test Dose

Return to Dr. Jemsek’s for Month Two Protocol

November 27, 2013

Here I am pictured with my angel Dr. Jemsek

Here I am pictured with my angel Dr. Jemsek

Happy Thanksgiving everyone!!

Betsy and I returned to Dr. Jemsek’s on November 27th, the day before Thanksgiving, to have my next IV antibiotic test run and to learn what this month’s treatment regimen would be.

Dr. Jemsek explained that my last IV antibiotic, Merrem, is a broad antibiotic that targets the extra-cellular spaces allowing it to kill the corkscrew form of Lyme. He said that I will staying on Merrem but he will be adding a new one.

This month I will be getting IV Clindamycin, which gets inside the cell walls. He said it will help limit the spirochete form of Lyme, and that it sets the foundation for killing the coinfection Babesia. Both the Merrem and the Clindamycin will be dosed twice a day on Monday, Wednesday and Friday at 8 a.m. and 8 p.m. They will each run for about an hour meaning I will be on the IVs for 4 hours a day. On the off days, I will be running a bag of Lactated Ringers to help flush out the dead Lyme bugs that the IV antibiotics will kill.

I will also be taking oral Septra DS, which is used for killing Bartonella but is also used as a base for the anti-malarials I will be taking this month to target Babesia. In addition, I will take the supplement Artemisinin and the prescription drug Mepron, which are anti-malarials that fight Babesia. They will also be dosed on Monday, Wednesday and Friday.

This is a heavy protocol in terms of time and in terms of the amount of medications I will be on. But I am fortunate to be living with a nurse who will be able to observe me and assess me throughout this month’s treatment.

I do not start this new treatment protocol until Monday, December 2, so I am grateful to be able to celebrate Thanksgiving with my family before the heavy hitters begin. May you have a very happy Thanksgiving celebrating the many blessings in your life and thanking the Lord who is the giver of all good things. “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17

Do pray for me that I tolerate this new round of treatment well and that it kills the things that are needed so I can get well!