Dr. appoint. yesterday could have fallen out of my chair

Discussion in 'Lyme Disease Archives' started by wld285, May 9, 2008.

  1. wld285

    wld285 New Member

    I had Dr. appoint yesterday. Have been treated with Doxy for 3- 6 week periods and 3 Lyme tests in between. Of course my latest test was same as others - CDC positive. I am now expecting him to get a little more aggressive with my treatment. He told me he wasn't putting me on anything!!!!! I asked him if he was kidding. He said he putting me on the kutupressin shots to build my immune system up. Hey wait a minute, I have been on those since starting with him Sept. 07.

    Then he said "I listen to my patients, if you want to go back on the Doxy I'll put you back on it". He told me the next step would be the pic line (and I can't remember the med). Said there was really no other oral!!

    I was so upset I could have cried. Now I know he certainly will not treat the Lyme correctly. I have talked to the office of a LLMD who is suppossed to be the best in N.Y. Of course his fees are phenomenal. I am so beside myself today, but have to figure something out. I'll have enough doxy to last 3-4 mos.

    Sorry to be whiney, but I am just in a tither today. I feel like my appoint. yesterday was a dream.

    Hope everyone is doing ok.
    Best,
    Linda


    [This Message was Edited on 05/09/2008]
    [This Message was Edited on 05/09/2008]
  2. connieaag

    connieaag New Member

    I can see why you are in a tither today! Doctor visit's are so stressful anyway, and it's frustrating when you feel you know more than the doctor! I know LLMD's cost a lot, but it is worth it to have someone who knows what they are doing and not playing roulette with your health.

    Our PCP tried to treat my daughter with Doxy and Tetra and she did feel better. But then he didn't know where to go from there to clear out the rest of the Lyme. That's when we decided to head to someone who knew what they were doing and not someone who, like our PCP said, "I'll put you on whatever you want....."

    They have great intentions and want to see you get better, but sometimes I think it is a way of saying "I don't know what else to do" and you have to accept that and go forward.

    Just my thoughts and our experience. Keep your head up!
  3. victoria

    victoria New Member

    I cannot believe that, there are other abx to use, my son was also 2X CDC+ --but never did use doxy, hasn't used IV either by choice altho it was recommended...

    Since you're in the NE, there must be other doctors to try that are not that far away? What if you print out Dr. Burrascano's guidelines and ask him about using them?

    hope you can find some good LLMD that is not so narrow in his/her thinking!

    all the best,
    Victoria

  4. wld285

    wld285 New Member


    Victoria - I know you see a good LLMD. The one I am looking at is Dr. H in Hyde Park. First visit would be $750, and follow ups are also quite high. How often do you or your son have to see him? Am trying to figure it out financially to see if it would be feasible for me. My girlfriend in LI sent me a newspaper clipping from awhile back about him, saying Flagyl could cure a huge percentage of patients or at least help them tremendously.

    Femmedge - Any info on Doctors would be greatly appreciated. Conn. would be a long drive for me. And BTW, I always enjoy your posts. Please keep in touch.

    The doc I am seeing is not my PCP, I take a 3 1/2 hr. bus trip one way to see him in Manhattan. He is aCFIDS and Fibro doc. Suppossedly he has other Lyme patients. Everytime I mention something to him (ie Flagyl to break up the cysts), he'll say not so.

    Thanks guys for your help.
    Linda
  5. victoria

    victoria New Member

    My son's doc charges about the same, and is much further away for you as he's just south of Charlotte... The frequency of visits over past 3 years has totally depended on how he's been doing, varying from 1X/month to much longer periods between app'ts, like 3-5 months.

    I hope y'all don't abandon here, this is the only way the people first coming to the main board will find out about lyme... as well as many 'oldtimers' may finally just investigate.

    The posts over there just need to continue to point out the overlap in symptoms between CF/FM/ME and lyme etc and especially by those who HAVE gone undx'd for so long, imho! And then refer people to the posts here as a springboard at least....

    all the best,
    Victoria

  6. wld285

    wld285 New Member


    I lost everything when I had by computer reconfigured.