Update

Discussion in 'Lyme Disease Archives' started by maps1, Apr 29, 2009.

  1. maps1

    maps1 Member

    Hi Everyone:

    Nannie glad to see your post have been wondering how you were doing.

    Nothing much has happened since last posting except for pain and exhaustion. Wanted to go see Under my skin a couple of weeks ago and did get there and listened to a doc first but could only stay for a few minutes of the film so I bought a copy.

    I watched it on monday night and then again yesterday, it is one of the best documentary i have seen in a long time but oh how totally devasted me emotionally. Getting it a little more into perspective now but I have ordered ten copies to give to my various doc's and family.

    My CFS doc gave me 48 days of doxy 100mg x2 for the fevers etc, but the pain that started in my rib cage has now moved to all lower body and almost feels like arthritis.

    I have purchased all the supplements recomended in the ILADS guidlines and have also added a product that helps the mitochondria and is a good detox. I know several people using it and it helps with inflamation, even my ex has reduced his fibro symptoms by 80% so figured my immune system could use the help.

    Have not heard anything about getting treated, have an appointment with the doc in two weeks that said he would treat me but he was supposed to call me and has not so I guess he has done some research and decided not to.

    Have sent blood for co-infections hoping that I have something that does not have lyme name and then maybe doc here can treat that.

    Have not been on computer for days as I can no longer sit here but just wanted to check in and see how everyone is did notice this post on lymnet though, do you think this is going to be significant

    http://www.lymedisease.org/news/lymepolicywonk/115.html

    AAPS objects to the overly rigid IDSA Lyme Guidelines (“Guidelines”) that were published in 2006.

    For example, on page 1090, the Guidelines mandate laboratory confirmation of an observed condition (extracutaneous Lyme disease) in order to diagnose and treat it.

    On pages 1089-90, the Guidelines prohibit clinical diagnosis and treatment of particular conditions associated with Lyme Disease if based on “clinical findings alone.”

    These Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease.


    Medical societies do not practice medicine; physicians do. (I LOVE THIS LINE)

    Take care all

    regards
    maps
  2. Nanie46

    Nanie46 Moderator

    Hi maps,

    I was just wondering how you were doing.

    Sorry to hear you aren't feeling very well...maybe a herx from the doxy, even though it's a low dose?

    Be sure to take your probiotics 2-3+ hrs after your doxy doses and don't take any supplements that contain things like magnesium and calcium within a couple hrs of your antibiotics either.

    Certain minerals can decrease the effectiveness of antibiotics.....so read about interactions online or from the pharmacy.

    Great idea to buy Under Our Skin for your docs and family. I have the version for Community Viewing so I'm just waiting until I get better to find somewhere to show it.

    I read that info on lymenet too...there has been some encouraging news lately.

    I hope a Dr can start treating you soon. Just do the best you can for now.

    I am feeling about the same....sometimes I sleep a little better and sometimes not.

    Come back as often as you can and I'll see you on lymenet also.

    Please take care.

    Nanie