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  • Rocephin not working--now what?

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    Old 01-06-2005, 06:49 AM   #1
    Darius
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    Rocephin not working--now what?

    I have taken 2g daily of IV Rocephin for almost 3 months now, without any significant improvements. Assuming my Lyme disease diagnosis is correct (still seems likely), what should I try next? Have I given the Rocephin enough time to conclude it will not work? (I also tried IV cefotaxime but was allergic, and I previously took doxy and samento for 1 month.) Is there another IV or oral antibiotic that could still work, even though rocephin did not work? My symptoms (beginning 2 1/2 years ago) are mainly neurological, and include brain fog, pressure in my head, and a low-grade fever.

    I am worried the lyme bacteria is located in a part of my brain that is extremely hard to reach with medication. I have read that some medications (including rocephin) do not reach the interior of the cells where the lyme bacteria may proliferate. Does anyone know of a treatment that can both cross the blood-brain barrier and reach the interior of the cells?? I am beginning to feel quite desperate.

    Thanks,
    Darius

     
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    Old 01-06-2005, 07:13 AM   #2
    sleeperwoken
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    Re: Rocephin not working--now what?

    Darius--Have you been tested for co-infections? I understand that it is important to treat those first, and I have read that sometimes when abx don't work it is because the co-infections have not been treated.

    Also, as far as crossing the blood-brain barrier, I have read that high doses of doxycycline will get through, high meaning 600mg daily and higher. I had neurological problems and took 600 mg doxy daily for the last 8 months (in addition to other abx). Neurological problems have lessened considerably.

    DMSO is supposed to get meds into the cells better, but I had some trouble with that, if you want to know more read the "sleeperwoken--DMSO" thread.

    Hope things get better for you soon.

     
    Old 01-06-2005, 11:48 AM   #3
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    Re: Rocephin not working--now what?

    After 3 months, Darius, I would seriously consider d/c the Rocephin. Rocephin, for all intents and purposes, was never meant to exceed 1 to 2 month useage tops. Mainly, the reasons for this are the risk of complications (gallbladder disease, picc line infections, development of autoimmune disorders, disruption of intestinal flora) and high cost (as much as 10-12 thousand dollars per month). It is much more common for people to have a trial of Rocephin for 1 month to 6 weeks and then switch to oral doxycycline from then on. Both Rocephin and Doxycline penatrate the blood brain barrier and into tissues very effectively. The difference between the two drugs is that Rocephin will kill bacteria (bacteriocidal), Doxycycline will inhibit its growth and reproduction (bacteriostatic). Both, however, at proper doses can be equally effective for ridding any symptoms including neurological---there are some studies I've read showing this. There are some schools of thought that show doxycycline users overall have a better outcome--this is because they are more likely to stay on it for long periods of time until symptoms subside versus those who take Rocephin for 1 month and stop treatment even though they still have symptoms. Of course, even if the majority of bacteria is destroyed in the brain and central nervous system, it may still take time for your body to repair the damage done by the infectious process. You may want to consider getting an MRI done to see if this is the case. Hang in there...if u have anymore questions, let me know.

     
    Old 01-06-2005, 12:05 PM   #4
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    Re: Rocephin not working--now what?

    Hi Darius. There are many different medications, IV and oral, that can be used to treat Lyme disease. What works for one person may not work for another one. It can be a trial-and-error process to find the best meds for each case.

    Have you been tested for co-infections recently? This is important. Many Lyme doctors believe they need to be treated first for Lyme treatment to be effective.

    Almost three months of treatment is not that long if you have been sick for two and a half years. Provided that you do not have a co-infection, I would speak to your doctor about adding an oral antibiotic while you are taking the Rocephin before stopping it altogether. Many Lyme doctors prescribe oral and IV antibiotics together. It can take time to tell if a medicine is working and it can take time to recover (again, especially when you have been sick for some time).

     
    Old 01-06-2005, 12:24 PM   #5
    itsmylife
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    Re: Rocephin not working--now what?

    The idea in mind with medication is to obviously rid the body of bacteria. At the same time, it is important to consider the weakened state of your body's nervous, immune, cardiovascular systems. (After a 2-3 year chronic infection.)

    While the medication is likely working it could take several more months to "catch up." Think of all the chemical modifications that your body has made to deal with the disease. Even if the bacteria is wiped out in a day, your body still may take many many months to recalibrate.

    If your symptoms are not worse after starting iv medication, you may be more fortunate then most.

    Last edited by itsmylife; 01-06-2005 at 12:24 PM.

     
    Old 01-06-2005, 01:48 PM   #6
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    Re: Rocephin not working--now what?

    Ticker, I want to clarify that when I stated Rocephin was never intended to be used for longer than 2 months at any one time, I stated that the reasons for this were to eliminate risk of complications and financial hardships. I did not intended my statement to implicate it no longer has usefullness past a 2 month period for Lyme disease or any other infection it is effective against for that matter.

    It may very well be that Darius needs longer antibiotic therapy, however, there are less risky and more cost effective alternatives for long term treatments such as Doxycycline, Minocycline, and Tetracycline which can effectively penetrate into the cells of the central nervous system and reach anywhere a spirochete may hide. After 3 months of Rocephin 2gm daily and no significant benefits noted, I would have to say that the likelyhood of any progress being made from continued Rocephin useage are slim. I would not object to continuing therapy with an oral medication which is much safer and much cheaper.

    To further note, Rocephin is highly active against Borrelia B., penetrates deeply into tissues, and works very quickly to destroy the bacteria that are susceptible to it. Most patients will notice at least some improvements within the first 2 to 3 weeks. If a patient notes improvement yet not all symptoms have resolved, then I could see continuing treatment...this would be a case where Rocephin is obviously effective and working. In Darius's case, there is little evidence of this. In my most sincere opinion, it is very likely that he/she could be sufferering not from a prolonged infection, but rather something else. Something else must be going on here. I would look into further tests (MRI, SPECT imaging, Sleep study). It's quite possible that any improvement in his/her condition with further antibiotic use could be purely a coincidence. You have to look at the patient as a whole...u can't just assume that we can blame every symptom a person has on one disease, ill defined at that. Antibiotics are not always the answer.

     
    Old 01-07-2005, 05:14 AM   #7
    itsmylife
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    Re: Rocephin not working--now what?

    My first three months of Rocephin therapy resulted in a 4-5% improvment, if that. It had to be treated for another year with doxy.

     
    Old 01-07-2005, 05:34 AM   #8
    Darius
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    Re: Rocephin not working--now what?

    Thank you all for your responses. It appears that I need to try another medication at this point, and I think I will try to convince my doctor to prescribe an "intracellular" antibiotic, such as biaxin or clindamycin. (Or I might go back to doxy.) Some strains of Bb apparently penetrate the interior of cells more so than others. Rocephin is not considered to be "intracellular," which may be why it has not worked in my specific case.
    Darius

     
    Old 01-07-2005, 07:38 AM   #9
    sleeperwoken
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    Re: Rocephin not working--now what?

    Hey "takemylife" that is the name of a song by the band Third Day. Is that where your name came from?

     
    Old 01-07-2005, 11:57 AM   #10
    itsmylife
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    Re: Rocephin not working--now what?

    Quote:
    Originally Posted by sleeperwoken
    Hey "takemylife" that is the name of a song by the band Third Day. Is that where your name came from?
    no, it wasn't

     
    Old 01-07-2005, 03:58 PM   #11
    laurie864bla
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    Re: Rocephin not working--now what?

    Hey Darius--

    Do you have any idea what state you were infected in? Reason I ask is, Dr. Jones has luck with different abx in different states. Some really thought to be "great" ABX do not work at all in some areas he has found. He has great luck in MD where we live with Omnicef but no luck in NJ and upstate NY. When he added the Omnicef to the Biaxin--major, major improvement. His anxiety and fear stopped right in it's tracks, as did his joint pain. He's back to being my little sports junkie. Basketball right now is his drug of choice--but it'll be somethin new in a couple months. Oh yeah...baseball again!

     
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