Leaving in 1 hour for 1st LLMD appt...really nervous

Discussion in 'Lyme Disease Archives' started by Junegal, Jun 26, 2008.

  1. Junegal

    Junegal New Member

    I have been on a roller coaster ride for 1.5 years with my CFS/EBV and not getting any better, actually getting worse over here. I got in with an LLMD (due to a cancellation) very quickly.

    I am mostly nervous about leaving something out. I have a 3-page sheet of info about my history/symptoms as well as my doctor's reports over the past 1.5 years. I also have my printout from my pharmacy of the timeline of the 22 antiobitics I have taken in the past 1.5 years. I *think* I have my ducks in a row but I can't be certain.

    I am also worried about laying out this amount of money (it is a LOT for us to afford) if I get the same response from her as I got for the past 1.5 years. Basically CFS/EBV, just deal with it. I need my life back and I will be really really upset if I pay all this money and this is just another regular visit, no different than most of the other 10 doctor's I've seen. I hope it is different and there are answers for me. Please keep your fingers crossed for me.

    You guys have been my support system over the past few weeks since I got the Quest test back with some bands showing + so I am onto the next step here. Wish me luck...
  2. victoria

    victoria New Member

    I have a feeling you'll get some results tho, altho actually the tests are not the most important thing, it's your new doctor's evaluation of you.

    all the best,

  3. erica741

    erica741 New Member

    I hope your appointment went well. You are definitely very prepared!

    If you had postive bands with Quest, that is strong indication you have lyme. Even if you don't end up having lyme, your time and money won't be wasted following up on your lab results. Seeing an LLMD with either get you properly diagnosed or enable you rule out lyme completely. And with CFS, being able to completely rule something out is a big deal!

    Still, I think with your Quest results there is a very good chance you will end up being diagnosed with lyme and maybe even some co-infections.

    Let us know how your appointment went! :)


    PS. Sorry I don't know your history, so don't know everything you've tried. But it is absolutely not true that there is nothing you can do about high EBV titers! Depending on what your LLMD says, you may want to try Valtrex or another antiviral.
  4. buttercakes

    buttercakes New Member

    Good for you!!! I hope you get the right answers. I know it is expensive, but your health is worth it. Now you can get on the right treatment, so your healing can begin.
    let us know what happens. Sandie
  5. Junegal

    Junegal New Member

    I should have posted an update but just left there feeling I think more upset than when I got there.

    She had to run blood work (I only had Quest) and saw other non-Lyme concerning things that she questioned why they haven't been addressed (sick for 1.5 years; 10 doctors....) She listened to my history, took notes, asked questions and I could tell she was trying to piece it all together. She didn't have any decent labs ran on me so she wasn't able to give me any definintive answers on the spot. Which of course was understandable.

    She kept bringing up my CFS and I told her I was kinda hoping I was misdiagnosed and that I had Lyme instead of CFS. She said (this is how I understood it) Lyme can cause the immune system (and body I guess?) to take a big hit, often causing CFS. She thought from my symptoms and history that I had both. That was rather discouraging.

    If I understood it correctly, she said there was a direct correlation with EBV/HHV6 and Lyme. Lyme doesn't cause them but if you have them and then Lyme, Lyme does well in the body with those things and vice versa. You have to attack the EBV/HHV6 at the same time as the Lyme and kill them off at once. So I'm on Valtrex and not handling it well, at all.

    I left there feeling really down and discouraged. It was nothing she did or said. She was very nice and seemed very through and like a brilliant doctor.

    I think I expected to go there and have her say "yes, this is truly Lyme, yes I can help you, you will have a life again in ___ months" and I left there feeling like I am in for the fight of my life. Like another huge mountain was put in front of me and I don't know where I'll get the strength to climb it.

    So now I sit and wait for the "real" results from the good labs and then start whatever protocol she decides upon. I'm sure in a few days I'll be feeling better about all of this, just now it is overwhelming to me. I am in that place where I keep questioning "why me?" I hate being in this mode!

    Thanks for asking. I'll post my numbers when I get them.