anyone better on oral antibiotics only?

Discussion in 'Lyme Disease Archives' started by m1she11e, May 29, 2009.

  1. m1she11e

    m1she11e New Member

    Hi,

    About 2 years ago I had a negative IGENEX test with a few positive bands. My doc at the time (who doesnt accept insurance) was very into Lyme. I love him but I had a hard time with all the people he was suddenly diagnosing with Lyme after attending a few Lyme conferences. I tried a variety of rotated oral antibiotics for about 6 months. This doctor keeps us on the latest so I am sure he knows all the in's and out's of oral antibiotic treatment for Lyme. I never had a herx or any improvement. At that point he said I could try IV Rocephin but I could not afford that. I gave up on the Lyme thing and then about a year ago I went to a doctor that specializes more in the virus angle and I had off the charts titers of HHV6. I tried Valcyte on and off for 3 months. I would get sick and back off and in total I took maybe 15 pills in 3 months and realized I just couldnt do Valcyte. I tried Famvir about 5 months ago and by week 3 my "old" neurological symptoms (numbness and weakness in right side of face, leg, and arm. It changes daily. I can feel it move from one location to the next) came back after 10 years and with a vengeance. Now I am on nothing but natural things but they include some of the stronger natural things like targeted Transfer factors (for HHV6, Lyme and co infections), I rotate Cumunda and Samento, and I take basic things to support my body. My neuro symptoms get worse by the day. I do have an appointment with a neurologist but I know both Lymes and HHV6 can misdiagnosed as MS. I wont do the MS drugs either way.

    So, I am thinking of going back on the antibiotics for Lyme just in case the anti virals triggered some kind of a Lyme attack? I am not seeing many people getting better on oral antibiotics alone though. Most have done IV pic lines and spent ALOT of money out of their pocket. I cant do that. I dont want to destroy my gut with oral antibiotics if it rarely eradicates the Lyme.

    Anyone get better on oral antibiotics alone? (without IV's)

    Thanks,
    Michelle

  2. Nanie46

    Nanie46 Moderator

    Hi,

    Yes, people have gotten better with just oral antibiotics.

    There aren't many people on this board, but there are alot more people on lymenet.org.

    Of course most of the people who have gotten better have moved on to better things, and don't spend time on the boards.

    I take 3 antibiotics at one time, sometimes they change.

    It takes a long time to get better. 6 months is not considered a long time. At my last LLMD appt, the patient before me had just been off her antibiotics for 2 months and she had treated for 2 years.

    Did your Dr follow the ILADS guidelines and Dr Burrascano's guidelines? Usually taking one antibiotic at a time does not help alot.

    The lyme bacteria has to be attacked from alot of different angles.
  3. m1she11e

    m1she11e New Member

    Hi,

    I appreciate the response. I am just so confused at this point.

    I took Biaxin and then moved into Flagyl at some point. I dont know if my doctor follows Dr. Burrascano's guidelines to the letter. I did feel at the time that maybe I had read about other antibiotics that could or should be added. It has been some time since I have talked to him so I was hoping he had perfected the protocol he was using that much more...??? I am trying to prepare myself for my 150.00 phone consultation on Thursday...

    Also, you treated for virus' if I recall before moving into the whole Lymes thing didnt you? Did you get those virus' under control or did you decide that they were secondary to the Lyme? Are you currently only on oral antibiotics and if so do you mind telling me which ones?
    Oh, one more thing, are you addressing the Lyme neurotoxins? I know my doctor didnt prescribe Cholastaramine the last time I asked about it. We used Chlorella and some other herbs. I really feel like that is an area that needs to be addressed as well.

    This darned puzzle!!!

    Michelle

  4. maps1

    maps1 Member

    neighbours daughter diagnosed lyme 2 years ago has been in treatment for 8months with 750mg biaxen and 500 metro d flagil.

    have spoken to her several times, she is now 10 years old and back in school and living a very normal life. She said she still gets some pains but she also said and her father agreed she had no problem with the oral antibiotics.

    it is so nice to actually talk to a real live lymee. So hope for us all.

    regards
    maps
  5. Nanie46

    Nanie46 Moderator

    Hi,

    I did take Famvir for 6 months, and a year later I took acyclovir for 3 months. I don't think it really helped me although I felt better following the elimination diet.

    Right now I am taking Plaquenil, Biaxin and Omnicef. The first 3 months I took Doxy, Plaquenil and Zithromax.

    I am not taking anything specifically for neurotoxins, but lots of other supplements.

    My Dr says that probiotics and fish oil (lyme bacteria build their cell walls out of cholesterol) are the most important ones.