Update for follow up with my LLMD

Discussion in 'Lyme Disease Archives' started by EricaCFIDS, Apr 29, 2008.

  1. EricaCFIDS

    EricaCFIDS New Member

    Hello to all!

    I had my follow up (2nd appt) with my LLMD yesterday. This time it was over the phone, but that was easy and I'm used to it from my FFC doctor. However, I find my LLMD to be SOOOO much more personable and real to talk to! Somehow that is just so reassuring and amazingly refreshing.....

    He wants me to do my urine challenge test with the DMSA test for metal toxicity. I did it today and it made me tired and was kind of a drag, but at least it's done. He believes that is an important factor and will wait to see what it says.

    He went over my 3 IGENEX tests (Bartonella - negative, Babesia - negative, repeat of the Western Blot - negative, but with significant activity still in his opinion) and my CD57 test (very low normal). My repeat test of the WB was essentially the same as a year ago (negative) and I had less "+" bands this time. He only tested me for the IgM which is also telling about which is significant after a long period of time being sick. A year ago I was a "+" for bands 18 and 30, but this test they were negative. His explanation for this was that I simply wasn't making the antibodies now (if I have lyme). He said that more importantly, the bands that remained the same **31 as "IND", **39 as "IND", and **83-93 as "IND" were more specific to lyme and therefore more significant. He didn't comment on band **41 remaining "+" (my only "+" now).

    He asked me about my time on the doxy and how I responded. Based on that (feeling worse then better, especially mentally) and my clinical history he feels that lyme is very possible or likely. He can treat me and see how I do or he gave me the option of doing a very specific urine test. I have to be off of the doxy for 3-4 weeks and then I take high doses of 4 types of ABX that he "slams" me with for 5 days and I do urine challenge tests throughout. The first 2 days are by injection (Penicillin or Rocephin, I think) then adding in Zithromax, Metrinidizole and Augmentin (I'm quite sure I'm spelling those wrong).

    I chose to do it. I would like a definitive of some sort since my WB test is so murky. He said "welcome to the murky world of lyme!", meaning it's mostly a clinical diagnosis. I would like to do this test and see what I find out. He said it's much more definitive. If you have lyme, then these 4 classes of ABX will kill it and dead pieces of the organism show up in your urine (an antigen test). Have any of you done this test or heard of it?

    As to the CD 57 test, he does not use it for screening purposes, but as a predictor of a relapse. He said it shows the likelihood of lyme, but again falls into that murkiness category. To him, it adds to his clinical diagnosis, but isn't a definitive aspect. He said normal people have their counts around 150-200. Relapsing or very sick lyme patients are below 60. I was 60, so it's signigicant just not absolute. I'm getting the feeling that's how everything is with lyme!

    I do the ABX in 3-4 weeks then I go see him in person 3 weeks after that. He did say that my positive reaction on the doxy told him that if I do indeed have lyme, then he felt that I would get MUCH better with treatment. He was very positive about that aspect of it. I liked that and I really like him very much as an MD.

    Well, that's all I can think of for now. It was only a 15 minute appt, so it went fast. I would love to hear what you all think. I hope I made my results clear. It's hard to explain in writing and is all a bit confusing, I know. I have to go pick up my son, but then I will add to this if I think of more.

    Thanks! Hugs to all and I hope you are feeling well.

    ~Erica ( :
    [This Message was Edited on 04/29/2008]
  2. erica741

    erica741 New Member

    Thanks for the update! So you are going to be off your current medications for the next 3-4 weeks, and then take strong doses of various antibiotics for a few days while your doctor tests your body's reaction to them? It all sounds so interesting and I want to make sure I understand correctly.

    It will also be interesting to see how you feel during the next few weeks when you are off the Doxy. That could be a telling sign too.

    Your doctor does seem to really know what he's doing! I'm so glad your referred me to him and can't wait for my appointment in just a few days!

    Thanks for the update!

    Erica (Erica741)
  3. EricaCFIDS

    EricaCFIDS New Member


    I just can't say enough about the feeling, vibe or personal assurance that this doctor gives off. It's just somehow different and comforting. It will be interesting if you feel that too when you meet with him. I plan to write you back soon and will answer all of your questions, but I decided to post here first for everyone to see.

    I am so happy that you have made the decision to go see him! I think you will be very satisfied and learn a lot. I can't wait to hear how it goes and what he says regarding your case. I'm also in touch with someone else I found who has been his patient for a year and a half and has improved and had a great experience with him. When I learn more, I will share it with you. She too, went years being sick and seeing lots and lots of doctors with no success or answers. I think you will feel a renewed sense of direction after your appt.

    To answer your questions, yes, he wants me to stay off of the doxy now until I do this intense 5 days of ABX. I've actually been off of it since Friday and notice that I am more sluggish and tired. Although, I especially feel that way today, so I'm not sure. It also makes my clarity in my head worse not being on it. I'm all wishy washy, but when I'm on the doxy that seems so much better. It's interesting. I will let you know how that goes in the next few weeks.

    He plans to ask Dr. Mora in Sacramento to administer the ABX injections and send me the prescriptions for the orals on the other days. He said he's sending me paperwork explaining it exactly in detail so I will know what to do, expect, etc. I asked him how I might feel during this time and he said it will be similar to the doxy, that I won't feel anything for maybe the first 3-4 days and then "wham!" I'll probably feel really terrible since it's 4 strong ABX this time and all at once. Great. I'm really looking forward to that! LOL The things we have to go through!!

    This test is different because it is an antigen test, it will pick up the dead pieces of the lyme organism in my urine. I think by using the 4 different classes of ABX at once, if there's lyme in me, these ABX will find it no matter where it is or what form it is in and kill it. I find it very interesting too.

    I hope that helps! Thanks for writing and I'm so happy to hear you are seeing him and got in so quickly! That's awesome!

    Take care! I'll write soon,
    Erica (CFDIDS) ( :

    [This Message was Edited on 04/29/2008]