Cycling through Lyme disease

Last treatment day of the month!

Last treatment day of the month!

I made it through Month 6 and am grateful. I even get two weeks off treatment before I have to start back up on June 9th for month 7. Once again, I look back at my symptom journal and think, “Wow, that’s right. It really was that bad.” Having a reprieve is just so so sweet. It helps me look forward not backwards. During these off treatment times, I try to make the most of being with family, helping others and partaking of social engagements.

Here are a few excerpts and a treatment week picture. I’d prefer not to share them but then a person new to the world of Lyme might not know that no matter how dim it gets, there is always hope at the other end.

5/ 5: First run of Merrem and Tygacil. Queasy, back of head feels like its spinning, so nauseous. Stay very still in bed in hopes it stops the spinning. So hard to try to eat but I must eat in order to take my antibiotics. So hard to try to swallow them. So hard to swallow without getting sick.

Another month of battling Lyme disease

Another month of battling Lyme disease

5/7: Woke up this morning with flu feelings. Fever went from 99.8, 100.2, 100.4, shivers, cold sweats, aches, body feels so weak.

5/8: fever 101.4-101.7. Sick to my stomach. Dosing with IV Zofran before running antibiotics doesn’t help.

5/9: Temp 97.0 in a.m. Thank goodness. Horrendous flu symptoms all day. Stay under covers. Night time fever back. 6 more days til break-time. I can do it. I must do it.

5/18-AM-Really fun fundraiser last night. So blessed to be on break and well enough to go. Line wouldn’t flush this morning. Betsy tried changing the dressing and moving line slightly. Didn’t work. Went to ER. They put Renevase in it. It worked. Line flushed when I got home. Ran LR. Very bad headache. Tried running it slower. Head just pounded and pounded.

5/20: My brother’s birthday and my friend Brian’s. Lloyd and family to come home tonight. 2nd day of the anti-malarial Coartem. Woke up at 4 a.m. with racing heart, two awful nightmares and hot sweats. Can’t fall back asleep. Flu feelings back. Shivers, aches, cold sweats. I sure hope I can be in remission one day. Just one more day to get through and then break time!

My crazy friends showing some elbow at the bowling fundraiser

My crazy friends showing some elbow at the bowling fundraiser

One of the best highlights of the month was the bowling fundraiser that my friends had for me on May 17th. It was especially nice because it was my off treatment week so I was able to be there and enjoy seeing everyone. I feel so fortunate and blessed to have such a wonderful group of friends who are loyal, generous and so much fun.

I also was able to be with my family over Memorial Day weekend and then go to a friend’s picnic on Monday. I think things like these mean more when you only have a small window of opportunity to do them, and when you know each day of health is a gift.

In addition, I started working on a Karen’s Lyme Story Facebook page where I can post short updates not found on the website, share event invitations and offer encouragement for Lyme sufferers and their loved ones. To get notifications, go to: facebook.com/karenslymestory and click Like.

It’s hard to believe the Month of May is over, and Lyme Disease Awareness month came and went. You may not know that Lyme Awareness month was started so that you or someone you know does not have to suffer the way I have. The way I’ve tried to help in this quest was highlighted in the May issue of Main Line Today magazine. Hope you will enjoy reading the interview.

On the treatment front, Betsy and I trekked back to Washington, DC, for my next appointment. Dr. Jemsek said we will continue to go deeper to clear out the biofilm layers so I will be staying on the same regimen as last month. He said biofilm is found in the thalamus, which controls sleep. Hence, the multitude of nightmares…

Cycle 7 protocol

Dr. Jemsek writes up my Cycle 7 protocol

Dr. Jemsek tells me he is going to give me one more week off from IV antibiotics before starting up again. He wants me to take Minocyclin during this time to help eradicate Mycoplasma, which is another coinfection. He tells us that Mycoplasma is a one-celled pathogen with no cell wall. I wish I could tell you what this means in laymen’s terms but I cannot.

I talk to Dr. Jemsek about the difficulty I am having with nausea and swallowing pills. He tells me that the most important ones for me to take are my probiotics, my antibiotics, my magnesium and my Vitamin D.

I ask Dr. Jemsek when I will be able to go off of IV treatment. He tells me it will end when I’ve reached the maximum benefit of the IV portion of the treatment. Then I will be transitioning to orals. He says he cannot tell me at this point when that will end. I stay hopeful that God is in control and has my back.

I talk to him about what I thought was a swollen Lymph node. He says it is actually the nerves in my carotid artery that are getting irritated by the Lyme. He says it is very common in treatment and not to worry about it. When it is cleared out, this will go away.

He says I will be starting my next cycle on June 9, and I will be coming back the week of the 29th. I make my appointment for July 2, hopeful that I will be one step closer to health!

“For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope.”-Jeremiah 29:11

3 thoughts on “Cycling through Lyme disease

  1. Praying for you, Karen!! Thank you for being so strong and sharing your Journey. This means so much for so many!!! I am going to JSC on July 9th to see Rachael.

    Like

    • Hi Melissa,
      I can’t wait to hear how it goes. Ihave not actually seen Rachel but she has responded to my calls at times. She is good. I have seen Kim, and she is wonderful too. They have a top notch staff.

      Like

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