Getting ready for my first LLMD appt

Discussion in 'Lyme Disease Archives' started by pepper, Jan 9, 2009.

  1. pepper

    pepper New Member

    Any ideas on what I should make sure I do? I will make a list of my symptoms but wonder what I should make sure is on there.

    I will list the places I have travelled to where I could have picked up Lyme since most doctors don't believe that we have it here. Maybe that isn't necessary?

    Are there other things I should make sure are written down? My mind will be mush because the appt is over an hour and my attention span is 5 min.

    Are there things I should do/not do for the appt?

    Thanks for any suggestions.

  2. Shalome1990

    Shalome1990 New Member

    just like you do of symptoms. I also write down questions as I have them. I just jot stuff down from day to day, and then the day of, or the day before, I try to put them in logical order.

    But, if you are going to see a LLMD, I don't think you will have to prove to him that you have Lyme. So, don't worry!!

    They don't believe we have Lyme here either, but I have it!!!

    I would also try to keep a time line of the symptoms. Sometimes that helps guide your treatment and it helps you remember that you are getting better.

    You might want to print out the symptoms list that I found. When to suspect Lyme. I highlighted all of my symptoms. And there were symptoms listed that I NEVER would have put with Lyme!!

    Sometimes I take my husband or mother with me, they tell them things that I forget.

    Whatever works!!

    Pepper, Good LUCK!!! ***HUGS***

  3. pepper

    pepper New Member

    My sister is going to come in with me. We have to travel and stay in a hotel so I sure hope this is worth it!

    I will jot down questions as they come to me. And I think that keeping a symptom journal after treatment starts is a great idea.

    I will check that symptom list on
    Thanks so much!
    ((HUGS)) Pepper
  4. becky713

    becky713 New Member

    I have heard people mention these before. Would you explain how you do them?

  5. Nanie46

    Nanie46 Moderator


    I am 5 1/2 weeks into lyme treatment. I keep track of my symptoms on a chart that I created.

    On the left side of the paper, I list the date. Across the top of the paper I list each symptom.

    Once a day, I rate each symptom on a scale of 0-10, with 0 being no problem, and 10 being the worst.

    This is just my method. You can do this any way you want to.

    You could even just write like you are keeping a diary.

    I also include medications and supplements, and anything else that might impact how I feel.

    See what works best for you.
  6. munch1958

    munch1958 Member

    It's on -- see discussion forum.

    It's hundreds of pages long and one of the topics is a list of questions for a visit with an LLMD. My initial appointment was 2.5 hours long. It will fly by in a flash if you have a good doc.

    They've seen thousands of patients just like you so don't be nervous. I think they've heard it all when it comes to bizarre symptoms so lay it all out there. I used to hear music that no one else could hear. I'd wonder around the house trying to find a radio or MP3 player that I was sure was turned on. Turns out musical hallucinations are a big thing with some Lyme patients.

    Remember to take all copies of your medical records with you if you can get them. If you tell your doctor you are taking them to another doctor they will usually copy them for free. Sometimes you have to provide the other doc's name and adress but they should send them for free as a professional courtesy.

    A travel list of the places you've been can be helpful. I've been in so many states and to Canada & Mexico numerous times. If they are telling you that there is NO LYME in Canada that's pure BS. Don't believe it for a second. Lyme is everywhere. Why do vets tell you to treat your pets with a flea and tick collar? And why do they sell that once a month tick treatment for cats and dogs?

    If you can tie your symptoms to shortly after a trip or say 6 months later that would be helpful. Your travel history can also let your doc know what co-infection testing to order. Say you got sick after visiting NY state. Maybe they'll want to order the NE panel vs SW or something like that.

    I would also bring a typed list of current medications, a family history of illnesses, your personal history (surgeries, hospitalizations, etc.), meds you tried in the past -- what helped vs what didn't, medication & food allergies, what your current symptoms are, how they affect your life, what your limitations are vs what you could do before, etc.

    I'd also think back to any weird rashes since Lyme starts out at first as a skin thing. But keep in mind that less than 40% ever see a rash.

    I'd also make a list of your hobbies to see if those put you in contact with ticks. I for example am an avid hiker, tent camper, gardener, bicyclist and cross country motorcyclist.

    Good luck!!!!