When to change antibiotics?????

Discussion in 'Lyme Disease Archives' started by connieaag, Apr 13, 2008.

  1. connieaag

    connieaag New Member

    I have a question regarding when you know it's time to change antibiotics and move on to the next one. Do you take the 30 days of the one Dr. C prescribed and then move on to the next one regardless of how you feel? Or do you continue on the first one longer??? I can't seem to find the answer in the info he provided and thought other patients could fill me in on the basics I need to look for with my daughter.

    Thanks, Connie
  2. connieaag

    connieaag New Member

    Yes, I read all that, but it doesn't say how many days to take them. He gave a sript for 4 abx (ceftin, Zithro, flagyl and the combo thing that almost killed you!) each for 30 days, so do assume he wants her to each for 30 days since neither has a refil? She is herxing with the Ceftin -- not sure if it's all the med or some weather too -- headache, extreme pain in knees and now hips today, rally bad flare basically. She can keep taking the Ceftin tho. That's the part I did understand :)

    The other underlined and bold instructions say to keep on the abx if you are getting better and better. If you are still herxing after the 30 days, to still switch?

    Maybe I need to call the nurse, but I figured I wasn't the only one who had a question about this. I PM'd you on lymenet.
    [This Message was Edited on 04/14/2008]
  3. connieaag

    connieaag New Member

    That's fine, it was intended for any and everyone! I am just not sure when you know to change or stay on the antibiotic you are on, as the info says, if it's working stay on it???
  4. connieaag

    connieaag New Member


    30 ++
    31 IND
    29 IND
    41 IND
    58 +
    83-93 +


    30 +
    41 ++
    58 ++

    Dr. C mentioned the 30 Band is most relevant to him??? Not sure exactly what he meant. You know I kind of need a follow up appointment after I read thru all the material :) It's overwhelming when you go there and leave with all of this stuff.
  5. connieaag

    connieaag New Member

    The phone consult is in May. I think it's becoming more clear, just overwhelming, and like I mentioned, I am not the patient, so it is hard being a middle-man when determining symptoms versus Dr. C's recomendations.
  6. connieaag

    connieaag New Member

    I read somewhere on the chanrges for Nurse's, Phone Consults, etc. Oh well -- cheaper than a hotel and gas!

    She herxed when she started the Ceftin and is just having so much knee pain now -- 2nd week. No bumps so far, but will advise her. She started MS Contin too, and was having constipation issues, so we backed off a couple days and the pain came back last night worse than ever.

    Working hard on detox right now.
  7. cherylsue

    cherylsue Member

    Dr. C's office will bill you $10 for each call you make to them. Also, they will bill you for RX scripts.

    I found I couldn't tolerate the amoxicillin or azithyromycin. I'm on the doxycycline since December and Dr. C said to just stay on that and double the dose. Actually, I lowered it and am feeling better.

    Dr. C also makes surprise phone calls and will bill you $75 for them as well, so be prepared.

    Cut back doses to what feels best, and slowly vamp up. Be patient. It takes a long time to feel good.

  8. connieaag

    connieaag New Member

    I remember when I scheduled the phone consult she said the rate was based on time and content......

    I just called and left a message for the nurse regarding test results I rec'd in the mail and what he wanted me to do. The recording says there is a charge for nurses to call you back.

    Phone is ringing..... I guess they will bill me??? She didn't ask for any payment information.
    [This Message was Edited on 04/21/2008]
  9. munch1958

    munch1958 Member

    I've seen roughly 203 (maybe 206) doctors by now since I'm a professional patient -- just read my profile.

    At first I didn't care for that because it struck me as billing more appropriate for a lawyer. Gee, I spent 15 minutes on that case. Let's add it up to the bill.

    Now that I've read his paperwork 4 times and been a patient for about a year I think it does two things.

    ONE: You get an answer to your question within 24 hours.

    How many times have you called a doctor to be left hanging for a days, a week, a month?

    If it takes $3 or $5 per call to cover their expenses and to get an answer when I need one I'll pay. Cheaper than a copay to a worthless other doctor who doesn't help me.

    TWO: They have a record of every time you called. When they called you back. How long you were on the phone.
    How many times they've been in touch with you.

    Kind of for their protection too because treatment for Lyme is so controversial. Doctors are being investigated left and right just for treating us.

    How many times have you gotten your medical records to find there is no log of your phone calls asking questions to the doctor? Or your lab results? There is no hounding the doctor!

    With Dr C, I get copies the very same week a test is done with his notes on it for my records. I know he's reviewd my results and has signed it "C".

    This glowing review does not to say that I think he's "GOD" but I was feeling better than I've ever felt in my life in January. BEFORE the osteoporis compression fractures.

    I don't have that kind of fatigue that I used to have. It's dogged me my entire life. Getting this as a kid means you have to pull deep within yourself to get any energy to do every day things. A shower or laundry is an accomplishmet.

    I remember being a kid and walking with my mom and siblings to the store. My brother PJ can tell you I used to stand in the street and sob or cry all the way home complaining "I just can't walk anymore!" That kind of bone crushing fatigue is gone and I don't want it back ever.
  10. munch1958

    munch1958 Member

    I never did answer your question about when to change Abx.
    DUH! I'm a "Lymetard" I'll admit it.

    PJ pretty much summed it all up.

    I gave each Abx a 30 day shot. If I didn't get any results with an Abx after finishing it up I indicated that on my return paperwork for the next office visit.

    If I got a herx I reported that too.

    You are looking for the Abx that makes you feel worse (herx) than better. Some people don't herx. I'm not a big herxer. Just 4 days of headaches, more sweating, some joint pain, etc.

    But you will know when it's working because you will feel better than you have in ages. For me it's been Rifampin (Bart), Malarone (Babs) and Minocin or Doxy (Bb). Then I stayed on those meds for as long as I felt good.

    Minocin is my most favorite Abx but I can't take that with heparin. Zithromax cleared up my brain and allowed me to concentrate to read a book. It's a macrolide so I got good brain penetration across the blood brain barrier.