Test was positive

Discussion in 'Fibromyalgia Main Forum' started by Misfit101, Jun 8, 2010.

  1. Misfit101

    Misfit101 New Member

    I have lyme disease. My doc wants to make sure thats not a false positive. And she has to research how to treat me. Well see what happens from here. THANK YOU to all of you who started hopping up and down when i posted my perplexing symptoms. I owe you ALL a debt of gratitude and i thank you from the bottom of my heart. The journey begins....
  2. karynwolfe

    karynwolfe New Member

    First off you need to be treated by a LYME SPECIALIST (maybe the one you talked to on the phone for five hours? or that doctor of your husband's coworker?) because your current doc does not have to tools/experience to understand what's going to happen once you're undergoing treatment, and she may not do the right thing in response. I.e., she may stop treatment prematurely for any number of reasons and that would be horrible, and she probably won't give you all the recommendations for supplements/extra support that Lyme patients need in order to not develop EXTRA problems along the way. But it's amazing that she is willing to help you, at least until you can get to a specialist, if that's what you choose to do.

    I want to say "YOU'RE WELCOME!" but honestly, I just feel like the messenger... I am the one (we are the ones) who is honored to be able to help you. I ask God to use me and my experiences to help others, and you happened to come along and need that, so really, thank Him!

    I'm so "happy" for you that you can start getting this together... You are going to feel better now!!!


  3. Misfit101

    Misfit101 New Member

    I have the names of some LLMDs. Theyre a state away but thats doable. What i found astounding is when i was checking out and getting my paperwork the receptionist said i was number FIVE that recently tested positive. My doctor knows my financial status and we talked about the possibility of her being mentored. Shes researching now and im to call her fri morn. She also said shes not afraid of long term abx...that no one is going to tell her how she can treat her patients. That attitude is one of many reasons i love her. Im just so grateful i found this board and the ppl here for so many different reasons. You all may have saved my life. Dramatic sounding? Not to me...im in the tertiary stage. He works in mysterious ways. Through mysterious ppl.
  4. karynwolfe

    karynwolfe New Member

    Being mentored? Wow, that's one amazing doctor! And a very neat option--maybe you're going to convert her into an LLMD, herself, lol!

    And no, you're not being dramatic at all. With the level of illness I was at when I found out about my infections, it's a miracle that I started treatment before it did brain damage. Seriously, a miracle. I would say "how did I get away with that?" but we both know how...

    My doctor is about the same. She's very willing to learn and help me through things since my primary LLMD is so far away, but I still try to see him once a year or so. :)
  5. Misfit101

    Misfit101 New Member

    Finances dictate that i have to give her a shot 1st. I wish i could just make an appt and be on my way. Not so easy. Not even sure its possible. Maybe the more research she does and the more poor souls she dx'es with this...maybe shell become the 1st LLMD in this state! How awesome would that be? I told her if that happened shed be inundated with ppl seeking help. Its a bigger problem than they realize. And it makes me mad that so many heads are in the sand. Things need to change...
  6. gapsych

    gapsych New Member

    It sounds like you are CDC positive? If so, one option is a infectious disease specialist.

    Hope things go well.

  7. victoria

    victoria New Member

    So you are saying you actually came back CDC+??? Sounds like it if your doctor actually believes it!

    If she is willing to consult with other LLMDs how to treat a long-term case, that is fantastic!
    And the fact that she's not scared to prescribe as needed and has no problem being mentored by an LLMD. The fact that you're #5 is a big thing, I sure hope your state sits up and takes notice. If you don't mind disclosing it, what state are you in?

    As you've likely read by now, there's a huge political controversy with the inf. disease MDs as to how to treat it. I know my son, CDC+ also, would not have gotten well with what they recommend, and it would've been a rare MD of any specialty who would've continued with abx for as long as he needed... or considered other co-infections that are almost impossible to test for anyway.

    Well, while I don't really want to say "Welcome", I know it's nice to have at least 1 diagnosis in hand and to start on the long road of getting better....

    so, you are now hereby officially a member of the "Die Lyme Die" club.


    PS: There are groups on FB for support as well as other online forums.

  8. karynwolfe

    karynwolfe New Member

    victoria I love the idea of a "Die Lyme Die" club; so appropriate!

    And Misfit...I'm sorry Ive forgotten your name :(...Starting now, since you're on antibiotics and will be for a long while, avoid sugar like it's the plague. Because it almost is, for someone on longterm abx use. Use Truvia or Stevia or Xylitol as a replacement whenever possible. Reduce or eliminate your consumption of "white" products--white rice, white bread, white pasta, baked goods--and make finding a refrigerated probiotic (order online or check a local health mart) one of your TOP priorities.

    It doesn't take long before the death of all your "good" bacteria gives the other stuff a chance to take hold (various yeasts, usually candida) and if that happens (and they WILL try to take over!), you could actualy have to STOP antibiotics! And you can imagne that would be very bad... Start reducing those yeast-feeding foods now, and you'll be glad you did!

    Even on all the support groups I was on, no one warned me of HOW serious that part was. I'm not pointing blame, but because it was more of a passing-by warning instead of a "pay attention now!" warning, I now have problems with it and wish someone would have made it more clear for me in the beginning. So I wanted to brign it up in case no one else says anything.
  9. Misfit101

    Misfit101 New Member

    I honestly dont know if my test was cdc pos or not. I THINK its lab test alone. But the 1st words out of her mouth were "youre positive for borrelia burdorferi". Rhe wants to make sure its not a false pos cos of what it says on the lab sheet which warns against false positives. I KNOW its not a false pos. It tested specific bands which are are absent but i know theres more to it than that. We did talk about a western blot but it might not be necessary. She said shes got a lot of research to do and wrote down dr b's name and some websites. Mentioned an id dr. But i think she wants to get her ducks in a row before proceeding. Ok...im not positive for the bands for cdc pos. She asked ME what treatment protocol dr's use. My borrelia burgdorferi IgM index was 1.18. Dont know what that means. Thank you for the warnings on the dietary restrictions. Thats going to be a toughie. Whatever it takes. I want to get well.
  10. Misfit101

    Misfit101 New Member

    Oh...im in oklahoma.
  11. isiselixir

    isiselixir New Member

    Good for you! I hope things turn out well for you. I remember hoping my lyme test would be positive but it wasn't. I was so sad in a way, lol.
  12. victoria

    victoria New Member

    No sugars/refined carbs.... and take probiotics in between abx as well.

    There is a good LLMD who is an ID doctor as well as an internist who is quite well known, hopefully she's talking to him also...

  13. Nanie46

    Nanie46 Moderator


    Congrats on getting an answer! I agree that you should not worry about being a false positive. That would be RARE.

    Tell your Dr to read this paper by Dr Burrascano. He wrote the guidelines for lyme treatment. you also need evaluated for common tick borne coinfections like Babesia, bartonella and ehrlichia. She should print it out and study it and so should you....


    Also read as much as you can from this site....


    There is alot of good info here too...


    This explains the 2 standards of care IDSA vs ILADS...


    Turn the Corner Foundation has grants for physician training programs...


    Also it is likely that your Dr will not understand that info from the IDSA will not help you. She should follow ILADS guidelines.

    I think I saw you on lymenet.org....right?

    I am Dekrator48 on lymenet.org. there are lots of intelligent people there who can help you.

    It is a long road back from chronic lyme...sometimes years. But time will pass anyways, and it's about attaining a good quality of life.

    At least now you have a chance to get treated and recover!!

  14. Misfit101

    Misfit101 New Member

    Yep...thats me over there. I wasnt able to type for awhile and when i regained the use of my hand again i jumped over there. But ive missed so many of the ppl here i had to stay awhile lol. Lots of kindhearted ppl here. I needed to hang out awhile...