I thought I'd post my updates under this title and see what happens! If I end up with PLD or RLD because I couldn't get enough doxy soon enough, I can join the case studies. Don't get me wrong, it's too soon for me to be bitter, and I'm going to try again Monday to get a longer, higher dose. (I have an appointment with a ID guy Sept 17th, but I gather he could be even less aware of the new protocols - and more biased against them - then my current Doc is.)
The Story: So my friendly NLLMD called me back today, unfortunately right after I left work and before I got home. So I'm juggling my purse with my swollen achy hands and my sore forearms, trying to find my notes and get to a quiet street because who knows what will happen if i don't talk to her right now, right? She's got the names of three ID guys for me and agrees to fax me my labs and a script for massage so my insurance will cover it. (Hurrray!) I give her a quick report of my new and increasing in severity symptoms and she asks if I'm taking any ibuprofen. I say not much cause I sort of want to keep a sense of what's going on (read: in case I have to "prove" to someone that I have disseminated LD to get more meds?) She says she's worried about long-term damage from the inflammation, that sounds reasonable, so I agree to go back on the ibuprofen.
I get up my courage to ask about a higher/longer dosage. I can even quote that the IDSA protocol for Lyme Arthritis is 28 days. (She gave me 21 days)
But I freeze when she asks me about when I heard about higher dosages. I obviously don't want to say "some cool people on the internet". (Though you are. All. Really. Really. Cool.)
So today I actually printed out the ILADS guidelines and I'm really reading them. Then I'll get back on the horse Monday, present her with these findings and ask her:
"What if it's possible that my (2-month old) LD doesn't respond to 100 mg 2x daily, and it could be cleared by a higher dose? What's the risk/benefit analysis and will you consider it?" Cause the clock's ticking, lady!
Send me courage to keep asking for what my instinct tells me. Sometimes I feel like everyone wants me to just take my doxy and wait and see. Wait and See with LD seems like a very very risky proposition. (I feel like I had my chance on the phone today, I blew it, and now I get to enter the "annoying/crazy patient category" by calling again). That's just my fear talking.
And, I keep forgetting to take my probiotics because of the timing - 1/2 after meals but at least three hours before the doxy...this weekend I'm going to make myself charts of what to take when and eat what when, etc etc.....I could go on and on but the wrists say noooooooooooooo moooooore typing! massage us with arnica, please!
Oh yeah, my husband's Nurse Practitioner refuses to give him a Western Blot with the Elisa. I have explained to him 1000 times that the Elisa is 35% or more false negative, but she said the Western Blot costs $200 and there's no way she's going to do it unless he gets a positive or an inconclusive on the Elisa!!!!....he was in same tent in the same woods as me for the same week, and I never got a bull's eye or found an attached tick, argh, argh, argh. And it took me a week of begging to get him to even ask for a Lyme test. I don't want to seem paranoid, but his ankles hurt! End of rant.
God/Buddah/Higher Power/Your Inner Guidance Bless Us All!
I'm going to watch a movie and try not to think about any of this for a while......and not eat anything so my stomach will be nice and empty for my yummy doxy at eight!