anyone understand chronic lyme and cd57 test?

Discussion in 'Fibromyalgia Main Forum' started by jasmine89, Mar 16, 2007.

  1. jasmine89

    jasmine89 New Member

    does anyone really know about chronic lyme. i am in such bad shape. i never got propper treatment 15 years ago. it took a year before a country dr even diagnoised me. was on iv claforan and it was wonderful but i was so sick during the herx that everyone panicked and it was stopped. i then went on orals. 15 years later and i have gone down hill severly. i dont have a life i have a miserable exsistance. i lost my husband and family over this. i am now living outside of phila. i need to find the best dr out there. does anyone know if dr burascano takes out of state patients. i like his aggressivness. its funny at the end of his treatment guide he mentions exercise. says that the more o2 we get the better since the bacteria does not like it. when i was living in sc i went to a dr that used h2o2 theraoy. it was a miracle. then the h2o2 scandal and drs were afraid to use it. why doesnt he use h2o2 along with his other treatments. it sure made me feel almost normal. unfortunately now that i have been off of it for 2 years and have been trying to listen to the drs that say oh you couldnt still have lyme after all this time. i tried it their way now for about a year and i am so much worse. i ended up in the er for a migrane that i had for over a week. am going thru the same things i went thru 15 years ago. mri of neck and spine for neurologist. gave me some samples of migrane meds. since he was running blood work i asked him to run a cd-57. the normals are 60-300. mine came back in the 40's. now from what i read online and in dr buriscano's lyme guide, the only thing that lowers that is the lyme bacteria. why cant i get anyone to listen to me. im not just looking at the test results. every part of my body is in pain. i am in such bad shape that i cant even make food. i get a shower but then put on a robe and lay on the sofa or bed. all that depends on what hurts most. its not those pressur points that are the worse. i get real bad neck/head pain and lower back/butt/down leg pain. of course they are on opposite sides so impossible to laydown to help both. its a nightmare. i exsist in pain and nothing else. i know with proper lyme treatment i will get better. its finding someone to help me and then of course hoping insurance will allow it unlike 15 years ago.
    so, if anyone knows a wonderful dr closer than dr b but as good please let me know. i live outside of phila. dr b is in ny about 4 1/2 hours. does anyone know if he takes out of state patients and how to i get in to see him?
    i truly believe in my case that if i clear up the lyme i can then clear up the yeast, epsein barr, c pneumonia, etc. once all those are cleared up we work on the addrenals etc so that the tender points go away. i dont really have tender points. my entire body is a tender point.
    im literally dying here. just getting to my car is like running a marathon. im so out of breath and light headed. i need so much help its not funny and i dont know where to get it. i dont want to get the same run around as i did 15 years ago. so far the neurologist cant help. i saw a rheumatologist a couple weeks ago. i go back this week. who knows what he will do. he doestn even beleive i have other infections since my system is fighting them. yeah so why are they reactivated and why am i fighting them. if they were not activated i wouldnt have such high titers. so back to the cd-57. what i read it is a breaktrough. lyme is the only thing that lowers it. so why dont drs get it?
    somebody help me
  2. mollystwin

    mollystwin New Member

    I'm sorry but I can't read your entire thread this morning but wanted to let you know what I understand about the CD57.

    I was diagnosed with lyme 4 weeks ago. My doctor uses this test to monitor progess with his patients. My number is 5. He wants to get to at least 15 out of 20.

    Most doctors do not understand lyme disease and the testing and that's why they don't use this test. It's very difficult to find a doctor who treats lyme and understands it. My sister and I are very lucky to have a doctor who follows Dr. Burascano protocol and understands lyme very well. And he takes our insurance.

    I think Dr. Burascano doens't treat patients anymore, but educates other doctors. That's what I heard anyway. There is a lyme seminar in June for patients that he will be lecturing at. My sis and I wanted to go, but it's difficult for us to travel right now.

    Have you tried other lyme boards? Maybe you'll get some more answers. There is a lyme board on this site, but it is very slow moving.