New to the Lyme Board, over from CFS board, have Igenex results.

Discussion in 'Lyme Disease Archives' started by Trevor1, May 15, 2008.

  1. Trevor1

    Trevor1 New Member

    Hello,

    I have been posting on the CFS board of this site for over two years now, I have been sick for 3 years and have had a running diagnosis of CFS for over two years. After every test in the book as many have had, I recently about a month ago got a new doctor, the only LLMD to come up on a google search for Arizona. His name is Dr. Murray Susser, at first I was hesitant to see him from some license infringements he had in the past, but he has the only LLMD that showed up so I really had no choice.

    Anyway, I finally had the Igenex test ran, I didn't think I had Lyme disease but it was a possibility of course since its symptoms mimic CFS so closely. I just recently turned 21 years old, and pretty much was set on just doing what I could to handle CFS, but it turns out I have full blown Lyme according to the Igenex test. I'm going to spend some time reading the many posts on this board to try and find out as much as I can about antibiotics and treatments.

    My doctors first approach of course was supplements, Samento bark extract, as well as Sweet Wormwood extract. Also an immune boosting spray. I have tons of supplements and this just adds to them. He said in two weeks we would talk about which antibiotic approach to take. I would like to hear the most common one being used if there is one on the board.

    These are my Igenex results fo you to look at:

    The IFA titer was 1:80 which is positive.

    The IGG results: Negative CDC result: Negative

    18 -
    22 -
    23-25**
    28 -
    30 -
    31** IND
    34** IND
    39**
    41** +
    45 -
    58 +
    66 -
    73 -
    83-93**

    IGM Results Igenex: Positive CDC result: Negative

    18 -
    22 -
    23-25** IND
    28 -
    30 -
    31** +
    34** IND
    39** -
    41** ++
    45 -
    58 ++
    66 +
    73 -
    83-93**

    So according to my doctor i was positive all over the place for what is required as a diagnosis for Lyme. I would like to hear your guys opinion on the results.

    I am feeling a little overwhelmed I don't really know what to think, my doctor wasn't assertive as I was hoping on what the plans were, he just said we will see you in two weeks and discuss an approach. I of course am going to do tons of research and hope to find a lot of info on this board. As far as what antibiotics people have been taking, for how long and if they have had any success.

    I still don't know what to think really, it feels good to see these positive results and bad at the same time. It feels good to know I have something to attempt to treat, but at the same time I guess im lacking any confidence in getting better.

    Anyway, appreciate those who read and give me some input, I have learned tons from reading the CFS board for years and hope to be posting on this board quite often. Thanks again,

    Trevor.

  2. highcotton

    highcotton New Member

    i had to skim your post because i'm in a fog right now but i want to give you a quick response:

    get a LLMD who will put you on combination abx therapy right away! there is no reason to wait. even if you have to get somebody to drive you eight hours, or take a bus or train, getting proper help is so very important.

    glancing at your igenex tests, it sure looks like you may have Lyme, and you could have coinfections as well.

    please check out lymenet.org -- go to medical questions, then click on the sticky for Newbie Information. There's a wealth of info to help you get started.

    best of luck

  3. buttercakes

    buttercakes New Member

    welcome to the Lyme club, good luck wih your Treatment.
    sandie
  4. reh1776

    reh1776 New Member

    Hi Trevor-

    Are you close to Phoenix? I have a friend there that has had lyme for many years. She was diagnosed and began treatment 2 years ago. I can ask who her doc is. She is feeling much better. she also has started hydrogen peroxide ivs and it has helped her tons. I can't find anyone around here to do it but I would do it in a heartbeat if I could find someone. Let me know if you are interested.
  5. munch1958

    munch1958 Member

    Glad you got a diagnosis finally!

  6. mollystwin

    mollystwin New Member

    The samento that the dr put you on is an herbal lyme treatment that works pretty well for most people. He may have just wanted to start you slowly on this and then give you abx. If you decide to stick with this dr I would advise you to learn as much as you can before your next visit so that you can figure out if you should stick with him or find another LLMD. Like the others have said, a good dr is really important.

    Take care,
    dar
  7. bunnyfluff

    bunnyfluff Member

    To the "Die Lyme Die" club!

    Please also post on the CFS board that you got a Lyme dx, finally, so others can see how many of us there are.

    Best of luck with your treatments, and HOORAY for finally finding out the truth!

    Bunny

    P.S. There is a lot of good info @ Lymenet as well. Many of us post over there, too.
  8. Trevor1

    Trevor1 New Member

    Hey guys, fist off a big THANKS to everyone who replied and shared your information with me, it is much appreciated. I am still having trouble wrapping my head around the idea of "false positives" and the fact I had high EBV titers, and still have high Strep titers.

    Also my onset was a sudden onset, I can still remember the date and time, almost 3 years ago now. Kind of crazy to think it may have been Lyme all this time. However, during my research it seems sudden onsets can occur with Lyme, so that was comforting.

    I always felt my brain fog and cognitive symptoms were worse then the majority of those with CFS. I think this is making me lean towards the Lyme a little more as well. Still, I have lived in Arizona my entire life, got sick when I was in California both low Lyme areas I believe.

    Anyway, my next appt is the 29th and I plan to pick my doctors brain as much as I can. I did the samento one night so far, just one drop and water and believe I herxed pretty bad the following day, just the feeling were I had to go to the bathroom real bad, was sweating, felt hot, and anxious. I believe it was a Herx, because I haven't had that feeling for some time.

    Once I visit my doc I will fill you guys in on what his "plan" is and which antibiotics he recommends, its still hard for me to accept this diagnosis but im trying. I still think there is just so much up in the air surrounding Lyme and im having trouble researching it and taking it all in. But in the end, my symptoms match so who knows.

    Again I appreciate all the support and information, I will keep you guys updated on my progress.

    Thanks again,
    Trevor
  9. Trevor1

    Trevor1 New Member

    Hello,

    Had the appointment today, I felt it went pretty well. I am feeling more confident that I truly have Lyme disease now. And am going to go ahead with treatment and see what happens.

    My doctor chose Cleocin ( Clindamycin HCL ) as antibiotic number one. He wants me to do 900mg a day for 3 weeks then he plans to add another to the cocktail. He talked about Doxy but I guess we will see when that time comes.

    Does anyone have any experience with Cleocin good or bad? Or anyone currently taking it for Lyme? He wants to see how my body reacts to 3 weeks on it, and if it seems to be doing ok we will stick with it. If not he said we can always switch up the antibiotic. Why he choose this one im not really sure.

    Soo thats the plan for now, im going to continue the many supplements im taking and keep up on the probiotics to fight off the antibiotic symptoms. Hopefully Lyme is the case and I can see some improvement in a few months.

    Ill keep you guys updated thanks for the support,

    - Trevor
  10. vcamlin

    vcamlin New Member

    I don't understand how the CDC result and the Igenex results are different? Looks like you had a lot of positives on there? I'm new at this and I'm going to order a test through Igenex, I feel sick as crap and having neurological weird stuff going on too. I've been thrown into this world where nothing makes sense.