At least I can say that I am really fighting right now. Or, I think so. That is, after months/years of trying to find my way and not knowing if I'm getting it, I feel I am more significantly addressing my problems. Of course, I only see small signs of progress. There is nothing sustained, nothing I would yet call a "game changer" -- a term used by another Lymie about one of the medicines I am currently taking. What will turn the corner? What will turning the corner look or feel like? What is recoverable and what is not? When or do I get to that point?
Part of the isolation caused by this disease is in one's inability to answer or even address these types of questions. I still have no idea where I am going, where I will end up. And yet starting or moving in any direction is better than no changes at all. I do not even know if I am grabbing onto something significant or grasping at straws. I only know I have to continue to try, because I cannot accept where I am or where I have been.
I have now had two visits with a Lyme Literate Medical Doctor (LLMD). I can see the validity in the positive and negative comments I have read concerning him. Knowing that helps in maximizing the benefit of going to that particular practitioner. The good outweigh the bad significantly for me right now.
My most recent bloodwork revealed three interesting tidbits.
The first: In addition to knowing my Lyme and Babesia status, I tested in the "indeterminate" range for Ehrichlia. This lab, like most doing Lyme or tick-born illness tests, has a range falling neither positive or negative and usually recommends retesting. Many LLMDs feel this is unnecessary because an indeterminate test is like saying "you're a little bit pregnant." A woman either is or is not. Paying extra for multiple tests when funds could go to treatment also needs to be considered.
The second: One area of my blood count was considered high: MPV -- mean platelet volume. This measures the size (as volume) of the platelets. Is this related to Babesia? I have to ask the doctor, but I would think it might, since Babesia affects blood, especially red blood cells. I just tried Google on the issue and, wouldn't you know it, the first few references refer to Babesia in DOGS. Ugh. Vets seem more on top of this illness than MDs.
The third: I tested positive for the Epstein-Barr Virus (EBV). Numbers on some of the tested aspects were strongly positive, in fact.
I do not fully comprehend how this affects or changes going forward. For now, it seems my LLMD wants to hit Babesia the hardest. This is likely why in my questions about various supplements, particularly for detoxification, the doctor said it was "too early" for whatever I asked about (I have a whole host of potential things to take and "too early" basically put me in shutdown mode about bringing up further possibilities. Therefore, I did not get very far on the list.) Mainly, I wanted to ensure the doctor liked the probiotic I was taking. (He did; it is one of the Garden of Life RAW products with a sizable unit count and over 30 strains.)
Clearly, I have follow-up questions to the tidbits I listed, but Babesia seems to be the main focus. I have understood from my own readings and the experience of others that Babesia duncani (what I have) is the hardest to resolve or eradicate, so this focus makes sense. I went from taking 300 mg Clindamycin HCL twice a day to taking 600 mg of it twice a day along with 250-100 mg generic Atovaquone-Proguanil. I am also taking supplements like Hawthorn (for palpitations caused by the generic of Malarone), Cryptolepis, Artemisinin and a long list of other things (not sure if you want the list; most are oral and a few are topical).
I have one accomplishment to tout. While I have small gains in physical therapy, I have also been exercising my brain in various forms of game play. One game concerns a Flashpad which features a task called "Remember Me." The viewer sees a pad with rows and columns of disk shapes and you start pressing the lights you see in the same sequence that you are shown, from 1 to 2 to 3 and so on. A counter keeps the total of the correct disks pressed. The player only presses the disks lighted red; if any are lit in the sequence as green, the player must bypass that item while performing the sequence. So, it gets complicated when the number reaches above maybe 5-6. Yesterday, I got the highest total to date: 112. That means I did not mess up until I had to remember a sequence of 15 items. At least, that is what my math says.
The problem with that is of course it is a difficult progress to show, unless I carry that Flashpad with me everywhere. And why would I? What does it prove? In a way, I am backward from many Lyme patients whose illness is almost invisible to others, to the point that other people do not believe them to be ill. They are accused of "faking" or having a psychological problem, etc. No, my problems cannot be hidden. Being unable to walk normally or even stand for long is pretty obvious. Getting better or seeming to get better is what is elusive -- to others and even often to myself. I have the frustration of "getting across" what I wish to say/do as well as the frustration of not always recognizing what is better, what is just different and what is complete stasis (or what Newsweek's "Conventional Wisdom" feature would show as "<->").