Just asking for prayers...

I am healing well from the surgery. However, all of the symptoms haven't gone away. We had my post-op appointment with the surgeon yesterday and she said some people experience the nausea, lack of appetite, etc. for more than just one week so we're praying it all passes soon.

We need many prayers right now. I started the Doxycycline and after 3 treatments I had to stop it. Something I never knew before going through treatment is that IV antibiotics can have really weird side effects - physical and mental - or maybe these type of side effects are just for people on long term therapy, or perhaps they just do these things to Lyme patients, I have no idea. What I do know is that the Doxy started making me horribly depressed. I would have accounted it to just having had surgery, or pain medication, etc. but the mental feeling I got was exactly how I felt when I was on Doxy in Kansas City. Back then I thought it was the stress of treatment or from being away from home that kept me depressed. Now I can say with certainty that a majority of that depression came from the Doxy. I was on my third treatment when I started crying for no reason, had bad mood swings and felt so angry all of the sudden. I cried and said, "I'm stopping this bag!" - basically turning the line off so that the Doxy wasn't going into my veins anymore. It only took about 15 minutes for me to start to feel more like myself mentally. I may have been able to handle those emotions more when I was in treatment with other patients who became close friends, but now that I spend most of my time alone I don't think it would be healthy to try and put myself in that mental state every day.

I saw some improvement on Doxy back then, but I was on it for 7 months and I think I got all the benefits I could from that drug. Honestly, we were only trying the IV Doxy because I have been scared to try IV Rifampin - it's a strong antibiotic that is usually only used for treating tuberculosis. It can be hard on the liver and it is the color of orange Gatorade when it goes into your vein which is just kind of creepy. We were going to try IV Doxy and oral Rifampin to see how I handled it instead. We know Gentamicin is responsible for 90% of my improvement but my kidneys can't tolerate it. It is one of the 4 IV drugs recommended for Bartonella, I'm allergic to one of the other drugs, one is only available in injectable form and I need something stronger than that, then there's Rifampin. The improvement I saw from the Gentamicin let me know what I already suspected - Bartonella is my main problem. So, now me and M are back to the drawing board once again. We are praying about how to proceed. We are praying to lift my fears about our next move. We are just asking for guidance as we make our next big decision. We discussed IV Rifampin with the doctor last time and he is okay with prescribing it to me, but he didn't want me to feel scared about starting it.

The main problem is that I am sliding back down to where I was before. It's hard to explain but it takes long courses of antibiotic therapy - sometimes 3 years - for some Lyme patients to "get their lives back". When we go off of antibiotics our symptoms will return until we reach a point in our treatment where we've killed enough of the bacteria and bugs to feel somewhat normal without the antibiotics. I was hoping I would be further along by now, but I clearly still need some form of antibiotic therapy. Good news is that I haven't had a seizure yet - which is a miracle since I've been off antibiotics for close to 3 weeks now. The bad news is that my sound and light sensitivity are back, I'm unable to handle anything very well - I get upset easily, can't think clearly, etc. I was on 40 mgs of Valium a day while in Kansas City to help with my seizures. On the Gentimicin I got to where I didn't need ANY Valium which was GREAT! However, I've had to start taking it again. Yesterday I took 30 mgs which is the most I've taken in 4 months.

Sliding backwards is hard on me and watching it happen is really hard on M since he so wants to snap his fingers and make everything better for me. It's easy to start to feel sorry for myself or for us both to feel as if the rug is being pulled out from under us. It's easy to question and cry and to be mad. But none of those feelings is going to help us - we know from experience that they will only make things worse. So, we're asking you all to pray that God will lead us in the right direction in terms of my treatment. We are open to stopping IVs and trying to just do oral antibiotics, but we don't want to pull the PICC line until we know whether my body can absorb the oral medications well. We just want to go in the direction that God leads us with no fear, feeling strong and absolute about our next steps. We need to make a decision soon though before I get much worse. We will be talking to the doctor on Monday and hope to have a game plan by then.

I appreciate all of your thoughts and prayers and will update as soon as I can about where we go from here. A couple of quotes from the book, "100 Days in the Secret Place" seem quite fitting for my current sitution. They help describes why it's so hard to give up trying to control your own life and how we must stop making our own plans instead of following where God wants us to go:

"Pray for strength and faith enough to trust yourself completely to God. Follow Him simply wherever He may lead you and you will not have to think up big plans to bring about your perfection. Your new life will begin to grow naturally."

"God is your true friend and will always give you the counsel and comfort you need. Do not resist Him! Learn to listen to Him in silence so that you won't miss a word of what He says to you. You know a lot about outward silence, but little about inner silence. You must practice quieting your restless imagination. Stop listening to your unrenewed mind and the kind of logic it has! Get used to coming to God and asking Him for help when He asks you for something you are afraid to give."
-Archbishop Francois de Fenelon written in the late 1600s

Much love to you all-
K