Friday, July 18, 2008


I think one of the hardest parts of this illness is trying to figure out whether treatment is working or not. I also don't know what to say I have. Do I have lyme? Do I have lyme secondary to cfs? CFS secondary to lyme? Do I have a little bit of lyme, a little babesia, a little epstein barr, a little of HHV-6?

Part of knowing means knowing or having clues to follow in terms of treatment. I'm learning that I can't rely on doctor's, even the specialists to tell me what to do. It's the patients' who are also suffering from this that I find I'm turning to more and more. Today I figured out that my current treatment protocol is in conflict. And, that studies have shown that colloidal silver causes cancer in animals and can have other toxic effects as well. I found that out from the lyme group I'm on. It's also contraindicated for the methylation protocol. I discovered that from the methylation group I'm on. So I've stopped taking the colloidal silver. Instead I'll take Olive Leaf Extract which also has antiviral, antibacterial, and is also good for helping with candida. My tongue is white and burns.

I was scarily exhausted today. I couldn't even push myself to clean. Usually I try to clean every day. Sometimes it's a drag because the cleaning uses up all my energy and then I have nothing left for anything kind of fun. Today I did the dishes and that's it. As I was doing the dishes I was so exhausted and became gripped by fear-what if I end up bed bound?

I'm also aware that it's just past 8 weeks since I started treatment. Spirochetes have a 4-6 week reproductive cycle or something like that so there can be symptom worsening during those periods. I took an epsom salt bath and drank a big glass of lemon water. I think it helped a little.

I need to be more disciplined about tracking my symptoms, moods, and activity levels. I write the dose and times I take medications on a calender but at this point I'm taking so many things I can't keep track of it all.

I got an email from my 9 year old niece. It was adorable. The title of it said "Hey" followed by a short adorable email. I was so glad to get it. I actually cried. Then I found myself googling "how to talk to 9 year olds." I found myself getting worried that I would alienate her somehow. I'm generally good with kids so I think this is indicative of my mood.

The past few nights and mornings I've been awakened by the TV next door. The man who lives there is 86 years old (the politically correct thing to say here would be something like "bless his heart"). I won't be politically correct. He's an self-absorbed dirty old man who has been incredibly inappropriate with a couple of the women in the neighborhood. He also gives me a hard time about not working every time he sees me. He probably can't remember that I keep telling him I'm too sick to work. It's a sore subject with me anyway. There's things I like about him but mostly I try to avoid him. He's always worn a hearing aid and has difficulty hearing but the volume of the TV lately is so loud that having my ear plugs in doesn't even help.

My dad is in Utah right now. He saw a urologist in Utah yesterday. Turns out they will be moving there on August 22nd-the same day my parents were married many years ago. The move came as a shock because of its suddenness. We still don't know why his bladder was throwing blood clots.

The acupuncturist's office called. I'd left them a message canceling my appt because it turns out I have lyme. I got a really nice message from the receptionist there. Then I got a call from the acpuncturists new partner. It sounded like they wanted to continue to treat me. I had this fantasy that they would offer to do it at cost given I'd been trying to get them to give me herbs for lyme all this time. Anway, I left 2 messages but have yet to receive a returned phone call. It's so typical of my experience there. Niceties, promises, get my hopes up but no follow through.

I have to decide what to do at this point. Do I find another acupuncturist or do I look for a therapist?

1 comment:

Anonymous said...

My favorite part of T.'s email to you was how she talked about the dog getting "nutterd". I giggle everytime I think about it!