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    Old 03-22-2005, 12:48 PM   #1
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    Unhappy HELP!!!!!!!!!!!!!!!!!!!! Treatment expectations

    To anyone and everyone:

    I was quite sick with all kinds of things for 2 1/2 years (was diagnosed with Sjogren's Syndrome, Rheumatoid Arthiritis, Fibromyalgia, etc). I was finally diagnosed with Lyme this past November. I've been told that all of these (above) problems may be totally caused by the Lyme.

    #1 I'm curious,: How long have your doctors told you that you would be on IV treatment? And #2, how long do they say that it takes until you should expect to feel at least, a bit better?

    I've been on IV Rocephin for 4 months (plus one month before that was oral antibiotics) and i really don't feel much better. Should i be worried?

    My dr. is very uncommunicative. I feel like i'm completely in the dark here..... Anyone know how long the IV treatment typically takes? How long until you feel a bit better? I'm very anxious and concerned because i don't feel much better, and my dr. won't give me an idea as to how long i should expect to be on the treatment, how long to feel better, nothing.

    Anybody who knows ANYTHING, please tell me!!!!!!!!!!!!

    Last edited by bbird; 03-22-2005 at 12:55 PM. Reason: I need help

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    Old 03-22-2005, 01:03 PM   #2
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    Re: Treatment expectations

    Welcome to the Board, bbird!

    Sorry to hear that your treatment doesn't seem to be working AND that you have the added stress of a non-communicative doctor. I'm assuming that he's not an LLMD?

    Were you on Doxy oral the first month? Have you not experienced any Herksheimer episodes?

    Ticker - our "Answer Person", should be along soon to give you some good information. In the meantime, you'll find lots of support here!

    Old 03-22-2005, 01:22 PM   #3
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    Re: Treatment expectations

    Hi Bbird,
    Welcome but sorry you have to be here. Have you been tested for co-infections (other tick borne diseases)? Ticks can also transmit Babesiosis, Ehrlichia, Bartonella and Mycoplasma.

    Many lyme patients have co-infections which require different medications than lyme meds. Please find an LLMD (lyme literate medical doctor) if you are not seeing one. Just list your state and someone will help.

    Your doctor is right about the fact that lyme can cause your current problems. There is no set time frame for treatment. Everyone is different and if you have another tick borne disease it could keep your from making progress with your current treatment.

    Four months of treatment is not a long time especially since you were sick for so long before being diagnosed. Hang in there things will get better and please educate yourself further. Hope you are feeling better very soon.

    Old 03-22-2005, 02:29 PM   #4
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    Re: Treatment expectations

    Hi bbird and welcome.

    The treatment for Lyme varies widely from person to person. I am sorry to hear that your doctor doesn't communicate much. I've run across a few of those.

    I also relate to your need to know that someday you will feel better- there is no formula - there are no definitive answers. Frankly, it stinks to be on medicine for so long and feel no improvement.

    Hang in there and don't give up!


    Old 03-22-2005, 02:41 PM   #5
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    Re: Treatment expectations

    Bbird, I'm in a very similar situation as yourself. I was also diagnosed with Lyme Disease after having symptoms that very much resemble Chronic Fatigue Syndrome marked extensively by post-exertional malaise. I was put on Rocephin for 6 weeks and then Doxycycline for another 6 weeks. The end result was that I didn't feel any better either. My doctors decided that further antibiotics were not the answer for me, but much of the advice that was given to me was to see a LLMD and continue the meds. I don't know for sure who is right or wrong in this case, but my better instincts tell me that if I do indeed have Chronic Fatigue Syndrome as it is now believed, my condition can't be cured with antibiotics.

    Old 03-22-2005, 03:42 PM   #6
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    Re: Treatment expectations - follow up

    My current dr. is Steven Bock in Rhinebeck NY. He does homeopothy as well - supposedly. I did indeed have Babesea too. According to him, the orals killed it. The oral i was on: Doxy, Zithromax, & Mepron. Took that for 2 months. Then onto Rocephin for 4 months. (Overlapped w/both for one month). I feel so awful that i'm mostly in bed.
    I was on Methotrexate for the RA (before diagnosed with Lyme) - my liver freaked - which has me a bit concerned about the Rocephin.

    I've been having the 'hicks' reactions like clockwork every 4 weeks. They usually put me in bed for about 7 days of unbelievable pain. The problem is that i just don't see any improvement. Have blurred vision, horrible nerve & muscle pain, joint pain, severe fatigue, depression, ringing in ears. I don't test positive with regular test, but had the antigens which the dr. told me was a pretty good test.
    I feel like i have NO metabolism - gained quite a bit of weight (wasn't usually a problem for me) - now i cannot get it off no matter what. I feel like my whole digestion system isn't functioning. I noticed one guy really recommended enzymes for digestion. Any one else try that?

    I just don't know what to do - i just feel like i'm losing hope???

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