Crazy meds equals crazy entries...sorry ;)

*Editor's Note: I apologize to those who read this entry when I first posted it at 10:30 or last night. I had been writing it in bits and pieces for a week and when I finished it I signed off and hit "POST" before really looking it over. Turns out I had another version of the same information lower down on the screen and couldn't see it. I told you all, my brain is malfunctioning & I cannot be held responsible for having these entries make sense, or apparently even be in the right order...sigh. Anyway, once I caught my error I erased the bottom part that may have been quite confusing for people to read!!! Hope you are all having a blessed day!


I've been trying to write this entry since I met with my IV doctor on Tuesday. I would write a litte and then stop because I wasn't sure if I could explain everything clearly. I'm praying God helps me get the information across successfully.

I wrote in earlier entries that the Babesia was causing severe mood swings and even a lot of rage. I believe I also wrote about how the medication for it (Mepron) was turning me into a psycho lunatic with a tendency to cry at the drop of a hat. I need to stop here just to say a big thank you to my mom and M for putting up with me so well! I wish I could get away from myself when I act like that, so it's hard to fathom how they can handle it with such patience. When I say mood swings I mean one minute I can be laughing and seem fine and then within a minute or two I'm furious over something stupid or I'm crying hysterically. I thank God for their ability to continue to put up with me. Now back to my update...



I also wrote earlier about how the doctor was trying some different things to help me not feel so crazy. Before I even started the Mepron my doctor already knew I would not be able to handle taking it twice a day every day, so the plan was to take it every 3 days. Even with the 2 day break between the doses, I still felt like I was going absolutely insane! So then we changed my IV treatment to help ward off some of the Mepron side effects. The easiest way to explain is to give an example, so if I took Mepron on Monday I would get IV fluids during both my morning and afternoon treatment sessions instead of IV antibiotics that day. Then on Tuesday, the day after the Mepron, I would get IV fluids again during morning treatment and switch back to IV antibiotics for my afternoon treatment session. That did seem to help my rage issues but I was still having a hard time. I am amazed by the patients who can take Mepron every day but it just goes to show how everyone handles different medications in distinctly different ways.

I realized that I was having a much harder time with everything by Saturday, October 24th. I had a stabbing headache behind my eye for a few hours and by the end of treatment I knew a seizure was coming on. I may have written about this in an earlier post but my brain is mush and I cannot remember what I have told to whom. Anyway, with an Ativan injection at the end of treatment and an extra oral dose of Ativan and Valium when I got home, we were able to keep me from having another grand mal seizure. I just had a lot of right side tremors and couldn't speak very well. This went on again on Sunday and Monday but I HATE Ativan shots because it's a thick medication to inject so they hurt. I just did my best with my oral meds to keep from seizing and I did not have anything worse than the difficulty speaking (horrible stuttering) and major muscle jerks and tremors. I knew I was going to have my meeting with my IV doctor Tuesday (October 27th) so I could discuss all of this then.


Medically speaking, Babesia is easier to get rid of than Lyme or Bartonella or even Influenza A and B really. However, the physical symptoms that manifest in some patients are hard to deal with. I am dealing with really bad joint pain, muscle pain and twitches, and horrible headaches. Really my whole body is in pain. Babesia doesn't stop there though. It goes a step further and messes with your mind making you feel so horribly depressed that you can't even think rationally. I was definitely getting heading into what felt like an emotional black hole. The good thing is that God allowed me to see these dark thoughts were not my own. He made me see that they were not how I think at all. I can't begin to explain how weird it feels to have your brain working against you. The closest description I've found is it feels like someone else is behind the wheel instead of me and they are controlling what thoughts pop into my head. The end result is me feeling as crazy as the Mad Hatter in Alice in Wonderland.


Now to tell you what news came from my meeting with the doctor. It was evident that we were going to have to change my treatment plan yet again because my body was going to seize if things kept going they way they were. Treating someone like me who has multiple chronic illnesses requires a lot of "tweaking" to the medications. By "tweaking" I mean that I might stay on the same medication but take it at different times or take a smaller or larger dose of it. Medicine is a science but it's also called a practice for a reason. That is because even the best doctors can't diagnose and treat illnesses with the exact same medication and the same method for each patient. It's trial and error no matter how you look at it.

The decision was made for me to take the Mepron every 4 days instead of every 3 days. I'll still receive IV fluids during both treatment sessions on the days I take Mepron and through the morning treatment the day after as I explained above. I'm happy to say it seems to be helping. To keep me from having to go through another grand mal seizure my anti-seizure medication was changed so that I am taking triple the amount. This medication is good in that you can take up to 3,000 mgs of it without major side effects. I had been taking only 300 mgs at bedtime. Now I take 300 mgs with breakfast, then before my afternoon IV treatment session, and continue with the 300 mgs at bedtime. Also, the decision was made for me to take one more Ativan pill daily. The IVs push the toxins around and you often feel a lot worse after treatment than you did before. I was taking 1 mg of Ativan with breakfast, another when I came home from morning treatment, another before afternoon treatment and then one at bedtime. Now I will be adding one more after my afternoon treatment to ward off seizures.

Then there were some new prescription medications added as well. Since I don't do well with codeine based pain killers (they cause more depression and can often cause constipation - sorry, but it's true), I am now trying an opiate based pain killer. The brand name is Darvon and I can take up to three a day. This has been a miracle drug for me as far as the constant pain is concerned. It doesn't take away all the pain - like the pain in my hands and feet - but it does allow me to sit in my treatment chair without wanting to cry out in pain.

The other prescription is an anti-parasitic drug (also used as an anti-malaria drug) that the doctor thinks I need. Apparently researchers are finding that people who have large biofilm communities in their blood tend to have parasites inside the biofilm. I am not sure if the parasites are causing the biofilm or just causing them to become much larger, but either way it isn't good. The doctor said most of her patients from the Southeast section of the country have a common parasite - of course I forgot the name of it - haha. Anyway, she said it's acquired by swimming in lakes, streams and rivers and swallowing water. Since I have swam in every body of water I can think of from lakes to rivers to rock quarries, I figure I probably have that parasite. Before I can start that medication though I have to go to the eye doctor first. One side effect of this oral medication is that it can often increase pressure in your retina (or cornea? - sorry my memory is shot & I'm doing good to type this much out - haha). So, the eye doctor will measure my eye pressure before I start the medication to get a "baseline reading" and will then recheck my pressure every so often to make sure it stays in a normal range.

Okay - last bit of news. I have broken up more biofilm - YAY ME :) Bad news is that this biofilm community unleashed another active round of Influenza A and Influenza B. That could also explain why I was trying to have another seizure. I think I wrote before that in immuno-compromised patients the flu can play some nasty tricks on the brain - seizures being one of the dreaded ones. So, boo for me having active Influenza A since before I got here and boo for having another active case of Influenza B since I had gotten rid of that in July, but remember, I have to get a lot worse before I can really get better. So even the bad news turns out to be the good news.

News from the non-medical front is that my chair mate and by now extremely close friend, Suz, will be leaving in 2 weeks. I am so very happy to see her headed home and that she can now switch to the oral treatment that isn't quite as hard on your brain. Orals are not easy at all, but when you take oral antibiotics AND IV antibiotics you can imagine how hard it can be on your body. So I am thrilled to see her make such progress and I know she will go on to do amazing things with her life. However, the selfish part of me will miss her tremendously. I thank God for sitting me next to Suz who has a huge, caring heart, who is amazingly creative capable of anything - drawings, paintings, handmade jewelry, photography, and really anything you can think of - she can do it. What I will miss the most is her wonderful sense of humor and her infectious laugh. I do love making her laugh and she makes me laugh just as much. Since we live only one building away from one another at our apartment complex we also spend a lot of time together outside of treatment. I am blessed beyond words to have met this beautiful person who showed me how to make the treatment clinic a place of laughter instead of tears. I cannot thank her enough for showing me the ropes and answering my myriad of questions about all things IV related!

As for me, we will be here through Christmas and will do some more re-testing in January to see what progress I'm making. I am no longer pushing for a "go home date" because I am beginning to truly understand just how sick I was when I got here. I have definitely learned that I can't speed this process up and that God is teaching me patience in ways I never thought possible. He is with me and He never lets go of my hand. I give all the glory and honor to Him for going before me in all things - for leading me to this doctor and this place of healing - for seating me next to girls that I love and pray for every day. I pray that the next person I sit next to has just one 1oth of the personality that Suz has, but even that is a tall order. She is simply her wonderful, unique, awe inspiring self and I love her more every day.

Okay, I may have forgotten some things about my doctor's meeting. I did get a 24 hour Holter monitor that I wore yesterday and today to track my heart fluctuations and I also got a very detailed echo-cardiogram done yesterday at the cardiologist's office so I will let you know if anything else pops up. For now I think God knows I'm just trying to handle the Babesia and the two strains of flu I have. I keep trusting in God and I keep finding that He is faithful to His promises and He never gives me more than I can bear.

This has been super long and I'm exhausted. I will close with this:

"O Lord, you are our Father. We are the clay, you are the potter; we are all the work of your hand." Isaiah 64:8

"It is good to praise the Lord and make music to your name, O Most high, to proclaim your love in the morning and your faithfulness at night." Psalm 92:1-2

God is working on me as a potter would shape a bowl. Once the shape is correct the bowl might go into the fire (or kiln) to harden - maybe I'm in the kiln right now? But I do know He will work on and in you if you ask for His help and trust in His word. I praise Him through all of this - even those dark and depressing days I praise Him for the little treasures He sends my way, like wonderful treatment friends who show me what strength, determination, and a positive outlook can overcome. I pray you all have friends like that or that you are that kind of friend to others.

Much love to you all -
K