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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Don’t Look Back!

Month 5 Update

Karen SmilingAs of today, I am officially finished my month 5 regimen and on treatment break until May 1. I am happy to be finished such a difficult month, and am grateful to be feeling pretty well. As I read through my journal entries of these past few weeks, it is hard to believe it was really me who wrote them. I share them for those who are going through treatment thinking no one can relate to their suffering and that the suffering will never end. You really will get well. It just takes time and perseverance. I may be in my 5th month of IV treatment with my current doctor, but I have struggled for several years with other doctors prior to this, thinking this is how it would always be.

Running Tygacil

Running Tygacil at Betsy’s

Friday, April 4: I received my test dose of Tygacil last Tuesday and haven’t had any treatment since. So why do I still feel so awful from it? Woke up with such bad flu symptoms. Shivered all night long. No sleep. How is it I can be walking but really feel like I am dead? If I run the lactated ringers, which is supposed to be flushing out the dead toxins caused by the IV Tygacil, how can I still feel dead? If I get in the shower, it is good because it wakes me up but I still need to get back in bed, put on the heating blanket and lay there like a dead person. It all is confusing. Feel like the blood or fluid in my head is clogged and my brain is pounding, almost like something is squeezing it. Is this a headache? No, a headache doesn’t quite fit the feeling up there.

Saturday, April 5: I get woken up with a jolt with my heart racing and a nightmare night after night. I hate it but must tough it out. The itchiness drives me crazy. I’d like to scratch my skin off but I don’t. Feel so cold. Am under my down comforter but if I don’t turn the heating blanket on, I can’t warm up. My left eye lid is twitching constantly but Dr. Jemsek says it is only because the medicine is pulling bacteria out of the ocular nerve and it is being irritated. He says the nightmares and rapid heartbeat will go away as fewer bacteria are in there. He says it is coming from the bottom of the brain stem where the bacteria like to lie. It does not like to be stirred up. Ok. I will persevere. I have persevered for several years so what is a few more months?

Trying to stay still as the Tygacil runs through my body

Trying to stay still as the Tygacil runs through my body

Tuesday, April 8: Ran IV Tygacil last night. So nauseous. Dr. Jemsek says to take Zofran and two Marinol. Back of my head is spinning, spinning. What a freaky feeling. Medicine does not help. Still nauseous. Lay still in bed. So hard to try to lift my head up to take the oral medicines because the spinning intensifies. This Friday is the April Pennsylvania Lyme conference that I worked so hard at to make it possible for the attending nurses to get CEU credit. So disappointed I need to cancel and cannot give them their certificates. Hopefully I’ll be well enough to do it next year. Legs are aching, throbbing, and no appetite; need to force the food that Betsy gives to me. Ask her if I can have a smoothie instead. Maybe I will have more luck with that. Sheila brings me homemade soup. Tiny sips to keep myself hydrated.

Saturday, April 12: Made it through the week of Tygacil. Try to get out of bed but my knees are so wobbly and heavy. Get back in bed. Maybe it is too soon to get up. The nausea overwhelms me.

Running Cipro at Betsy's

Running Cipro at Betsy’s

Sunday, April 13: First day for my next set of IV antibiotics, Cipro and Merrem. So so queasy. Mom has tickets to the Phillies game. Try to tell her I’m afraid to go in case I throw up right there. She’s disappointed. Leif picks me up, holds my arms because I am so weak to walk. We bring a trash bag in case. I look straight out and don’t turn my head as we drive. We put my seat down so I can rest. Leif carries my shoulders. I look straight ahead, sit in my seat and don’t move. Can’t wait till it’s over. Oh how awful to have such good seats and want it to be over. Make it home without incident. Thank you, Jesus. Time to run evening dose. Fall asleep, wake up to my IV finished. Thank God I woke up.

Monday, April 14: Wake up again in the middle of the night with a jolt and heart palpitations. Wake up to the song, “Oh the Wonderful Cross.” “Love so amazing, so divine, demands my life, my soul, my all.” Very good reminder that no matter how bad this feels, God is on the throne, and He is good.

Thursday, April 17: Holy Thursday. Read Luke 21-22. I wonder what Jesus was thinking when he sat on that hill at night after he taught all day in the temple knowing that was the spot that Isaac was sacrificed and where he would be sacrificed the next day? Last day of treatment. Thank you, Jesus. Maybe the symptoms will subside. Gillian brings over potato soup for me to freeze. I now have homemade soup from Sheila, Anne Bradley and Gillian. Now I can take small sips of them. So grateful to have them. Still so nauseous so can only tolerate tiny amounts. Weak, body is so weak. Shower is a huge accomplishment. Back in bed to rest. Hard to breath. What is that about?

Friday, April 18: Last dose of Cipro and Merrem last night. Difficulty with sleep. The racing heart and nightmares go out of control. Chills, Cold sweats throughout the night. Didn’t realize my heating blanket was not on. That was why I was so cold. Feeling of the flu upon awakening. Run the lactated ringers to see if it helps. No relief. Keep my heating blanket on all day. This is the day the Lord suffers. How did he manage it? Was the fact that He knew the future any comfort for Him? The fact that He was humiliated, rejected, beaten is beyond understanding. It is beyond understanding that it was God Himself who took this on. Not a robber or a thief but rather God Himself. The perfect Lamb walked on this dirty cruddy earth and subjected Himself to the basest of deaths. Ok, I can get through this day if He could get through the Cross.

Easter Sunday, April 20: unbearable headache the last two days. God help me to enjoy Easter, the day you made our faith truth. God gives me some relief and I enjoy my time with my family. One of the greatest Easters. It’s so exciting to see the kids getting older, each with unique personalities. We celebrate Jack’s 7th birthday.

Monday, April 21: No IVs this week but must take the antimalarial Coartem the next three days. Excruciating headache is back. Lie still all day. Ok, didn’t know it was possible to have a headache this bad.

Tuesday, April 22: Headache is still there in the morning. Drink several bottles of the flavored water that Leif drops off. It leaves . With the exception of the wobbly knees, I’m feeling pretty good. Run two bags of lactated ringers to keep getting those dead toxins out. It works. Get to see Christopher and Colin. So proud as if they are my own. Can they be anymore perfect in my eyes? No, it is not possible for any of my nieces and nephews to be anymore perfect in my eyes. Nurse comes to see dad. Although he is failing, he is still holding on.

Wednesday, April 23: Last day of Coartem and last day of treatment until I go back to the doctor’s on May 1. Feeling pretty good. Feel happy, no nausea. No headache. Life is good. God is good. I made it through and I feel good! Allister Begg’s devotional today says: “Jesus wears the appearance of a slain Lamb as His royal dress in which He wooed our souls and redeemed them by His complete atonement. And these are not only the ornaments of Christ: they are the trophies of His love and of His victory for us. He has redeemed for Himself a great multitude that no one can count, and these scars are the memorials of that fight.” Thank you Jesus for fighting for me on that Cross and thank you for helping me to fight through these treatments. How would I survive in those dark moments without knowing this, without knowing the hope that you give?

On to month 6 soon. Seems impossible but it is true. Dr. Jemsek says month 6 will be harder but I will do it. I will because my God will fight the fight for me!

“The LORD your God will fight for you; you need only to be still.” Exodus 14:14

It is Well

Without the grief of my death on Good Friday, you would never understand the joy of my resurrection on Easter Sunday.

Three Crosses
I was at a Music Gala Benefit at the Kimmel Center here in Philadelphia last Friday where the last song sung was, “It is Well with my Soul” by Horatio Spafford. After watching and listening to such talented performers, it was soothing to me to hear this song and be reminded that no matter what circumstances come my way, it is well with my soul because God is on the throne.

For those who are not familiar with Horatio’s story, he was a great man of faith and a wealthy lawyer/businessman who was born in New York in 1828. He settled in the Chicago area, married and had five children.

In 1870, Horatio experienced the first of several tragedies. His only son, four year old Horatio, Jr., died of scarlet fever. Then, in 1871, the Great Chicago fire swept through destroying a third of the city and causing Horatio to lose most of his life fortune. In spite of this, he and his wife were grateful that their family and house had been spared, and worked tirelessly to help others. For the next two years, they devoted their time to feeding, housing and caring for the many victims who were trying to put their lives back together.

Two years later, Horatio decided to take his family on a much-needed vacation to Europe to see their friend and the great preacher Dwight L Moody. An urgent business matter wound up detaining Spaffford, but he sent his family ahead planning to join them as soon as he could.

Sadly, the ship they were on, hit another ship and sank within 12 minutes. There were 226 deaths and only 47 survivors. His wife, frail and weak, survived, but his four daughters perished. After reaching shore, his wife sent him a telegraph, stating, “Saved alone, what shall I do.”

Horatio quickly chartered a boat to join his wife. When they passed by the sight where the captain thought his daughters had drowned and his wife alone had survived, the captain summoned Horatio. Horatio found it hard to sleep that night and penned the words to his well-known hymn, “It is Well with My Soul.”

This song is especially apropos on Good Friday where we see our Lord mocked, scourged, beaten beyond recognition and finally killed on a Cross to pay the debt for our sins. This is the darkest day in history.

And yet, as tragic as this is, we know that Easter comes in two days. Thus, we grieve today with hope for tomorrow. Beth Moore puts it best when she says, “As sure as the earth will quake on Friday, a stone will roll on Sunday.” Because of this, we can join with Spafford, even in the bleakest of times, and say:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

Refrain
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

(refrain)

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

(refrain)

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

The Song and Story

Sources:
Jesus the One and Only by Beth Moore

When the Presence of Hope Arose by Chuck Swindoll

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.
 
My Month 5 protocol broken down by weeks

My Month Five protocol broken down by weeks

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

P1020692

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.

Image

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

Filling the Pill Boxes

Can you Fit Anymore Pills in those Pill Boxes?

This picture of me with my pills, pill boxes and organizational sheet shows a typical weekday in the life of a treating Lyme patient. It takes me anywhere from one hour to two hours to fill up these pill boxes. I have it down to a science as you can tell. It makes it easier that way.

This picture of me with my pills, pill boxes and organizational sheet shows a typical weekday in the life of a treating Lyme patient. It takes me anywhere from one hour to two hours to fill up these pill boxes. I have it down to a science as you can tell. It makes it easier that way.

I am on approximately 22 different supplements to keep my immune system boosted during my treatment. Most of these I take twice a day and I take more than one each time. So that makes for a total of about 80 supplements a month I need to take so my kidney, liver, WBC, RBC and cortisol levels do not take a beating and can eventually take over in keeping my infection in check.

In addition, I am on anywhere from one to 4 different antibiotics and anti-malarials–all taken twice a day with more than one taken at a time. These total about 24 to 60 pills per month.

Thus, as you can see, treating for disseminated Lyme disease is both time-consuming and complicated, and burn out is common. For me, personally, I find it mentally exhausting, and oftentimes I fight to keep myself awake so I can finish filling my pill boxes in one sitting. Sometimes it gets the best of me, and I have to take a nap before finishing.

Energy is something I used to take for granted but not anymore. There’s so much I no longer take for granted.

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!

Month One: PICC Line Insertion, Getting Test Dosed at Dr. Jemsek’s

Putting in the PICC Line

Tuesday, October 30, 2013

How cool is it to have a friend who offers to have you live with them so they can run your antibiotics in their home, change your PICC line dressings and assess you for the next 8 months. Talk about selflessness!!  Meet my friend Betsy who is a nurse and a homemaker, which allows her to be able to run the medicine and be here to make sure I don’t have a strong reaction to any of them.

My appointment to get my PICC line in was scheduled for October 29th, at 2 pm at George Washington Hospital, Washington DC.  So, on the evening of October 28th, I trekked over to Betsy’s house to get settled in for my 8 month stent.

In the morning I was laying in bed listening to Joe Focht talk about the book of Isaiah. In the middle of the talk, he said, “When you don’t know what God is doing, you still know who He is.”  I thought, “Wow!! How profound and how perfect for one starting on an 8-month journey of IV antibiotics to fight Lyme and its coinfections.” How perfect for all of us as we each fight our battles during various points of this walk called life!

Betsy and I arrived at our hotel in Georgetown around noon, dropped off our bags and headed over to the hospital. Since I had had a PICC line in in the past, I was pretty calm this time knowing it looked a lot worse than how it actually felt. The nurse who did the procedure was quite sweet and assured me she had done thousands of these.

She assessed the blood flow in my veins, scrubbed up, covered me with some sort of light blue paper, and injected a very painful needle into me that apparently had numbing medicine in it. I watched the ultra sound machine as the nurse figured out if the line was going into the vein correctly.

After she finished inserting the line, I noticed an intense pain running from my elbow down to my finger tips accompanied by stabbing and tingling. The nurse told me to squeeze my fingers and it would go away. I kept squeezing but the darn pain would not leave.  Finally, the nurse told me that the pain would probably stay there until the line was removed at the end of treatment. I looked at her stunned thinking, “OK, Lord, I really don’t think I can accept that.  I need a miracle here. This isn’t just a tiny pain. This is a big pain!”

After we left, I made a quick phone call to the IV nurse manager at Jemsek’s office letting her know that this was not what I had signed up for. She encouraged me by saying that they’ve had this happen before and it usually goes away within two weeks. She told me to try not to think about it and they’d look it over in the morning when I arrived for my appointment. I shot an email to some loyal friends and prayer warriors, letting them know the situation, and when I woke up, the pain was completely gone!  Not just a little gone but completely gone!
 

First IV Test Dose at Dr. Jemsek’s

Wednesday, October 31, 2013

P1020547-001My PA Kim Fogarty doing an assessment while I am test dosed with IV Merem

The way things work at Dr. Jemsek’s is he runs one dose of the IV antibiotic in his office to make sure you do not have any sort of allergic reaction. If you have a trained professional who commits to running your IV and changing your line, you can go home with IV bags in hand so you can have it administered in the convenience of your house.  Given that none of these treatments are paid for by insurance, one cannot have it infused in a doctor’s office, hospital or by home care nursing.  Fortunate for me that I have a friend who has years of experience as a nurse, is married, not working and also has a soft heart.

We arrived for my appointment greeted by a nurse Rita. Rita did an assessment, started running the antibiotic and trained Betsy while it was running.  She explained that I would be receiving IV Merrem, a broad spectrum antibiotic that targets the extra-cellular spaces allowing it to kill the corkscrew form of Lyme. Within a half hour of the run, I could feel pounding in my head.  I asked Rita if this was ok but she said it just meant that I obviously had something up there that was being killed. Next I felt a stabbing pain at the base of my skull. Then I felt it down my neck and into my spine. Next it was over and under my ear.  Rita tells me that I need to be prepared to experience discomfort, for this means there is Lyme in my system, and it means it is getting killed.  I stayed calm coaxing myself that it gets worse before it gets better, and I need to stay the course no matter what the next 8 months bring in terms of symptoms.  I thought about what CS Lewis says, ‘God whispers in our pleasures but shouts in our pain, “I am here and I am good.’”

In “The Lion, the Witch and the Wardrobe,” Mr. Beaver tells Edmund, Lucy, Peter and Susan that they are about to meet Aslan, the Lion. Susan says to him, “Is he safe?” Mr. Beaver says to him, “Safe? Who said anything about safe? ‘Course He isn’t safe. But He is good.” Unfortunately, it seems I am learning what CS Lewis means by this statement.

After we finished at Dr. Jemsek’s office, Betsy drove us home so I could rest.  The stabbing pain in the base of my skull, neck and spine was still there when I woke up. I emailed Jemsek’s office just to make sure again that this was ok and asking if slowing down the infusion rate when I started on Monday might keep the pain more manageable. For this Monday will be the start of my first dose at home, and instead of having it run just once as had been done in the office, I was going to need to have it run twice that day. The schedule will be twice a day Monday, Wednesday and Friday, three weeks on and one week off, with lactated ringers run on the off days.
 
I received an email back from Rita saying, “Slowing the infusion down, might help keep it from happening immediately, but unfortunately, probably will not prevent it. We want to stay ahead of that pain. I want you to take Lyrica, as it helps with nerve pain.”

Unfortunately, the Lyrica has not helped yet as the pain seems to be stronger than when I left the office.   Monday is right around the corner, and I need to just stay the course pushing through the pain and trusting that although my God might not seem safe, He is good.  Honestly, it just plain stinks that He can’t just teach me this in a more benign way. But He is God, and I am not.