Those are the words that rang through me like a loud sound does. It was my LLMD telling me I need to step it up again. He said that after I explained, over the course of our appointment, the symptoms I'd been experiencing since my last visit in April. (this post should haves come out late August....) The symptoms were not new ones, but some old ones cropping up again. They included facial twitching, leg and toe contractions (minor seizure activity), nightmares ( the three days before my Dad's funeral - stress), and finally, to top it off, I told him I had stiffening of my thigh muscles again, making it hard to extend my legs when walking. He called it "Stiff Man". I don't remember if I ever even told him about that symptom before. Although, I am sure he saw it on my first visit when I really was a 'stiff woman' all over. I couldn't turn one way or the other without doing so with my whole body. I had no range of movement.
He asked me if it happened for a few minutes or an hour or so. I emphatically answered "NO! It happens for days at a time" He looked a little concerned.
I had never heard the nickname 'stiff man' before, but, I've have my own names for 'stiff man'. One, is I called it the Sit And Stare disease. Impossible to get moving without an external stimulus. As soon as I heard a loud noise or voice, I was able to snap out of it. Yup, it's weird. Doesn't happen very often anymore. The second name I gave it was.....get ready......Early Rigor Mortis. Ha Ha. I did keep my sense of humor, right? Wrong. I was disgusted, actually. All in all, we were talking about the same thing. An inability to move due to a stiffening of the muscles. In MS terms they call it spasticity.
(I know this from the years it was thought I had MS)
Hence the words "I see no reason to wait" were heard. He saw no reason to wait to step up my treatment, as it was evident that I still harbor biofilms, which are expressing themselves when spirochetes escape, with those old Lyme symptoms. Great.
Of course I completely expect to harbor bio-films the rest of my life. My brain is so full of them one could say I have holes in my head and be correct. Dr. J seems to think we can get rid of them over time. How much time? Biofilms are one of the ways the bacteria hide and bring you into what some would call remission. I don't. I just stay in wait, because it never takes long for them to creep out again.
Long story evidently long, I am on a two week on/three week off treatment phase. He has included a new therapy for me which is lactoferrin/xylitol combination on top of antibiotics and my regular supplements/vitamins. This is a biofilm breaker. I feel like I take pills and meds all day long. And, honestly, I am sick of it. I see no way out of this infection, because even if we eradicate the spirochetes, the damage is done. I'll never be the same.
I am going to stop now. You can see I am not in the best frame of mind today. Lyme disease and it's co-infections can beat the crap out of you, and it has to me. Faith and friends may be the best treatment and survival technique out there. Thank you to everyone who has helped me in the variety of ways you have. It does make a difference.
I will end on a positive note. I was declared Babesia free!!! Am I? Who knows really. Since starting the new treatment, the fevers, sweats, stiff man, mental confusion, fatigue, etc., have all continued to plague me. BUT, I am moving in the right direction. Management and maintenance is where I am at now, mentally and emotionally. Holding strong, and doing my best.
Next post I hope to discuss the double MTHRFR gene mutation I have and what role it plays in all of this. It takes a lot of research to figure these things out, if I ever do. I apologize if this post does not flow well, I am in week 1 of holiday and I will blame it on that.
Now, go to lymelesslivemore.com and sign up for the video conference next week. A lot of alternative treatments will be discussed. I want to explore all ways I could help myself be functional, how about you guys? I love that name; lyme less LIVE MORE!!! OK! lymelesslivemore.com
