Sujay Madwolf Anyone - Levaquin ABX Therapy?

Discussion in 'Fibromyalgia Main Forum' started by crissyfamily, Sep 2, 2003.

  1. crissyfamily

    crissyfamily New Member

    Have you had anyone been on Levquin antiobotic therapy. Husband was diagnosed with chlymadia pneumoniae and the PCR testing lab told our doc 2 weeks on levaquin and she has has us on Transfer Factor 100. Husband felt really really good after 2 weeks and his 4th day off Levaquin was yesterday. Still felt good with just a few aches and pains he thought was still the mycos dying. Today more aches and pains and he is scared coming back....Our Doc is not being very supportive and he is scared to see her again because she threatened to fire him (us) if this did not work.... She said that Levaquin kills the mycos whereas the other ABX's just suppress them.... He gave her literature that may need more long term but she is being not too receptive to say the least....

    She took my daughers off cipro and will not give them any antibiotics at this time and says they may not even have anything (they are symptomatic but not a lot so that they just think normal aches and pains and sore throats) but yes they are ill....we all got this last summer....now daughters are having more symptoms since off cipro last thursday. She thinks they need to rest their stomaches for a month even though we are on tons of probotics and good yeast she has prescribed for us and we're not sure she will put them on levaqun

    I feel better on levaquin and have 2 more days to go in my 14 day prescription. But still tremors and sore feet and odds and ends of other pain that changes from day to day.

    So if you have had anyone on Levaquin and if so for how long and did you notice anything good or bad? We called the PCR testing lab and they will only talk to doctors.

    thanks and take care
    crissyfamily
    [This Message was Edited on 09/02/2003]
    [This Message was Edited on 09/02/2003]
  2. crissyfamily

    crissyfamily New Member

    No lab in Texas.......lab is called MD Labs:

    Medical Diagnostic Laboratories
    East Gate Business Center
    133 Gaither Drive, Suite C
    Mt. Laurel, NJ 08054
    Tel 856 608 1696 fax 856 608 1667
    they do the following tests that I know of: Chlamydia, Herpes Simplex, ebv, cmv, herpes 6 a and b and of course
    mycoplasma

    Husband and I are on 500 mg levaquin for 2 weeks....he is done with his treatment as of last thur. and i will be done this thur..

    hope this helps...let me know if you need further assistance.

    take care Bek
    crissy and family (crissyfamily)
    [This Message was Edited on 09/03/2003]
  3. crissyfamily

    crissyfamily New Member

    hi dave.

    well, i had the tremors prior to the levaquin and also the foot pain...and feet feel a little better and tremors maybe some, but shoulders hurt more etc....
    if you don't mind me asking how long did they anticipate keeping you on it had it not caused your side affects?

    thanks...
    crissy
    [This Message was Edited on 09/02/2003]
    [This Message was Edited on 09/02/2003]
  4. crissyfamily

    crissyfamily New Member

    husband thought he was feeling better then today had panic attack and some pains......he is just hoping and praying it is gone but it appears not...

    cipro felt better and on levaquin he felt really good until got off of it and now 4 days later feeling some symptoms again....

    cipro I felt somewhat better, levaquin did feel better at first and now more aches and pains especially in shoulders.....

    wish we only knew.......let me know what you experience if and when you get on ABX therapy...

    take care as always..
    crissy
    [This Message was Edited on 09/02/2003]
    [This Message was Edited on 09/03/2003]
  5. crissyfamily

    crissyfamily New Member

  6. crissyfamily

    crissyfamily New Member

  7. kalina

    kalina New Member

    You know I'll be interested in watching this post. My two-week supply of Levaquin is still sitting on my shelf. I'm just waiting until I feel better to start it after the doc had me stop taking the Transfer Factor because it made me feel so awful. I just don't quite understand how two weeks on this antibiotic (even if it IS "new and improved") is supposed to eliminate a stealth infection!

    Glad you're doing better for now, but I'm sorry to hear the rest of your family is having a rough time. Hang in there!

    Kalina
  8. crissyfamily

    crissyfamily New Member

    hi....hope you get to feeling good soon to start on the levaquin. Husband is feeling a little better today. I emailed dr. garth nicholson yesterday about the 2 week levaquin antiobotic therapy and this is what he said re levaquin and I also asked if he could recommend a list of doctors who would treat with long term antiobotics: His response to my email which is dated 9/3/03 is below.
    ___________________________________________________________

    The antibiotic that was given has been reported to have good
    > results but we don't have enough experience with it to actually
    > recommend it to physicians. The main problem is that any therapy
    > must be given over a rather long period of time due to the
    > slow-growing intracellular nature of the infection, and also
    > because this infection has 'resting' phases where the bugs are
    > relatively inactive and much less susceptible to antibiotics.
    >
    > We generally don't feel that patients on antibiotics are contagious
    > based on experience and on the fact that blood levels of infectious
    > agent are at undetectable levels while on Abx.
    >
    > The IMM as a nonprofit organization and does not recommend
    > physicians, nor does it rate them or keep lists.
    >
    > Prof. Nicolson
    __________________________________________________________

    I was pleased to get a response even though it was quite generic I imagine he cannot provide advice to individuals.

    take care and let me know when you start levaquin

    crissyfamily
    [This Message was Edited on 09/03/2003]
    [This Message was Edited on 09/03/2003]
  9. sujay

    sujay New Member

    I'm sorry to hear your doc seems to be getting discouraged. I suspect long-term antibiotic treatment is essential, as you've been advised by Dr. Nicholson. Yeah, it's a generic answer, but then he's never met you. I'm impressed that he responded at all. Levaquin is very similar to Cipro, and I've had some success with that. The only patient of mine with both mycoplasma and chlamydia (like your husband)has been doing well, but I had her on antibiotics for 6 months initially, and now we're alternating between Biaxin and a TCN. As long as she herxes, but improves in terms of energy and mental clarity (and tolerance to chemicals) I'm planning to continue this routine, with Cipro/Levaquin held in reserve. Some doctors use pulsed therapy (10-14 days a month), but continuous antibiotic use seems to get better results, and ultimately what we are after is CURE. We just have to be careful the cure isn't worse than the disease, so I wouldn't try to second-guess your doc. We're just so used to having our concerns dismissed that it's hard to trust. I hope you'll be able to keep working together and that your family will continue to improve.

    Yours,
    Sujay
  10. starstella

    starstella New Member

    my doc prescribed levaquin for probable sinusitis that did not respond to zithromax therapy. lately i have been having serious hip, knee, and ankle pains and have been so depressed about this being a sign of my fm condition worsening. after reading this post i realized that the increase in pain coincided with the start of the levaquin. maybe there is some relief in sight! hopefully my productive cough symptoms will respond to this therapy.
  11. crissyfamily

    crissyfamily New Member

    it is nice to hear your thoughts on this...Kalina will be interested in it also as we go to the same doctor and she is worried also.

    i'll keep everyone posted on the abx therapy...

    i don't know what TCN is though? Would you enlighten me.

    Dr. Nicholson seems to be fairly good about working with people. My husband called him several months ago re: abx therapy and he talked to him for a few minutes and he was a little short....most of the time it was just saying it was very expensive to do what they do and would like donations, but he did tell my husband that they had very very good success rates with long term abx therapy but could not get doctors to prescribe abx long enough...

    I'm going to send Dr. Nicholson a donation for his time because it is so great that he does respond being i'm sure he gets zillions of emails and calls.

    Thanks for your time in responding also because I know you get all of us on the board asking you and madwolf questions and it takes a lot of your time also....and I hope that you and your son are still doing well..

    take care
    crissy (crissyfamily)
  12. crissyfamily

    crissyfamily New Member

    Hi, yes, i seem to have more pain on levaquin also...my husband got immediate relief (but he had less neurological symptoms) and thought he was "cured" after the first 8 days on levaquin.... his ringing in his ears is almost gone and it was for a few days....my ringing in my ears has not lessened and i still have pains, but not as many.....

    so there is hope that the pains are the little critters dying off.....hang in there and lots of luck to you.

    take care
    crissy
  13. starstella

    starstella New Member

    thanks for your good wishes.
  14. sujay

    sujay New Member

    Sorry about the jingo; it just slips through. TCN is shorthand for tetracycline/doxycyline/minocin.

    My son and I are doing well, thank you, although we're both a little nervous with school just starting. He's in 7th grade now, so there are a lot of new challenges, but he seems to be doing fine. I hope your girls are both doing well.

    Best wishes to your whole family,
    Sujay
  15. crissyfamily

    crissyfamily New Member

    Hi Bek:

    I think a while back you asked about dr. horsley...well, we go back to her now for the abx (levaquin) that the other doc would not prescribe....good thing we did not burn any bridges when we left her after several months last fall...she was really happy to see husband and get info from him on c. pneumoniae...she said she learns a lot from her patients. anyway....she does long term antiobotic therapy....she does say it takes long term abx and 2 weeks won't do anything, but then again she said she never thought of using levequin...

    I could not remember if you had went to her and ran away fast or thought about going to her and I was one of several who said run fast....but we are back...won't tell other doc I am still on abx though.....need both docs for a well rounded program...

    take care crissy.....