The good news and the bad news...

I had my appointment this evening with my IV doctor. I knew that with all the set backs I have had (kidney stones, emergency surgery, etc.) that we had not been able to make the progress we had originally hoped for back in early June. Back then the plan was to treat me with the IVs for 3 and 1/2 months, then re-test and see if my body was making progress and if I was knocking out all these chronic infections. We knew that the plans would change, I mean, you can't predict how your body will react to treatment. Plus, they think a lot of these infections have been living in my body for 30 years hiding in that sneaky biofilm. Had ANY doctor in Alabama ever been able to properly diagnose me with - much less treat me for - all these infections (Lyme, Bartonella, Influenza A, Whooping Cough, Chronic Mono, Chronic Strep, etc.) then I could have started treatment years ago. However, that makes no difference because it didn't happen. So, my whole body has been getting worse each and every year. Had I not gotten here when I did, who knows, my heart may have just given out because it was having to work so hard and it was wearing itself out.

Good news is that treatment is working and I am breaking down the biofilm in my blood that allows all these nasty things to hide out in. As the biofilm breaks down we knew there may be more infections that would come out. Basically my blood tests had been negative for a lot of things because the infections were protected by that biofilm.

Bad news is that after 5 or 6 tests for Babesia that all came back negative, we finally broke down the biofilm enough so that my most recent test was positive for Babesia & it came out fighting mad. Babesia is rough. It can make you feel extremely angry, upset, anxious, nervous, etc. and it causes a lot of bone pain (which I have been having for a long time but they couldn't figure out why). The bad news is that no medications work on these symptoms - Valium and Ativan won't help me feel less anxious because they don't work on Babesia. Narcotic pain killers won't stop the bone pain either. You just have to kill off the Babesia in order to get rid of the symptoms. The treatment is hard because of the medication for it has to be taken twice a day but spaced 12 hours apart & you can't take it within 1 hour of ANY other medications (other prescriptions, supplements), not even IV meds. So we'll have to find a way to fit that in somewhere. We won't be treating it for another 2 weeks though because the doctor wanted to wait a full 6 weeks from my surgery before we push my body any further.

Now, here is the part I expected all along, but had hoped wouldn't happen. Normally I would be getting all those re-tests done in a couple of weeks since I will have been in treatment a little over 3 months by then. However, there's no point in doing those tests then because we haven't been able to get enough of the meds in me to really make a big difference. The tests cost money and many aren't always by insurance so I'm glad the doctor realizes we don't want to waste money on tests if they know the tests won't show much change. Bad news is my new date for re-testing is now mid-November. So, another 2 months in Kansas City doing IVs and taking pills.

I wish I could tell you that I truly believed that the tests in November would show amazing progress and I would be home by early December. But, I know my body pretty well and while I KNOW that with God anything is possible, I also know how sick I am and how difficult it has been to treat me because these "bugs" have made a stronghold inside my body. I know God is with me now - I know He has great things in store for me - and I know I trust His plan. I don't like the idea of staying up here for a long time, but I do like the idea of regaining my health. God lead M & I here, to Kansas City, to this doctor so that I could be healed. So, I can't complain if I don't think God's working fast enough!!! We prayed dilligently about all of this and tried to follow where God was leading us and we trust that He will lead me back home in His perfect timing. He will get me back to my sweet husband, family and friends and when He does, I bet I feel better than I have in YEARS!

Oh, I still have the flu. I am knocking the numbers down though. For Influenza A to be considered "active" the ratio has to be higher than 1:8. Originally I was 1:64 and after 5 rounds of Relenza I am now 1:32!!! Also, my blood levels are ALMOST normal. I'm 11.1 as of last Tuesday and the normal range starts at 12. Remember that just 4 weeks ago post surgery I was dangerously close to getting down in the 6's so this is a BIG deal.

Other good news is that my electrolytes are back to normal, my potassium and my Vitamin D are both normal now, and I think she said my B-12 is normal now too. This means things are working. Treatment IS working - it just can't be rushed. Oh and I am going to try taking the IV antioxidants again on the 9th. They took me off of them after the first week due to nausea but I am hoping that I can handle them now. They are like supplements and can help me strengthen my immune system to fight even better.

I'll write more later when I've wrapped my brain around all of this more. I recorded the session with the doctor and will have to listen to it tomorrow to make sure I understood it all. I had been really hoping to not have to deal with Babesia so after I found out I had it, well, I think I zoned out a little for the remainder of the meeting just trying to focus on what the next step would be.

I love you all and I ask you to please pray for my mental strength as well as my physical strength. I had an episode this weekend where I felt such rage and anger and I knew there was no logical reason for me to feel that way. It scared me though because even though I knew it wasn't logical, I also couldn't seem to control it. Turns out that was the Babesia rearing its ugly head. So I pray that God keeps me from acting on these feelings and that He keeps my bone pain from getting any worse. I know I can handle this - I am a fighter & with God fighting my battles, there's no way I can lose.

I'll close with the sweet scripture verse my friend Christy sent to me today:

"The Lord will sustain him on his sickbed and restore him from his bed of illness." Psalm 41:3