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  • Need IV Abx... how do I get them without a positive Lyme test?

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    Old 02-11-2008, 07:24 PM   #1
    Lateralus112358
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    Need IV Abx... how do I get them without a positive Lyme test?

    I am very sorry if I didn't start this topic according to the format desired by the forum homebodies.

    My joints are getting so bad that it feels like I am risking serious damage. The clicking has turned into outright painful snapping. I know it's lyme, because of all the symptoms, but all of the serology keeps coming back negative (all blood levels normal except high white cell count), positive ELISA, but negative Western Blot (shows exposure but not enough to confirm active infection) My doctors are basically turning me away because of the serology's inability to prove the infection, meanwhile I am getting sicker and sicker.

    I really need a catheter so I can get IV abx (I think there's a 6 week treatment schedule), can I demand one from my doctor in spite of all the negative test results?

    has anyone else been through an experience similar to this?

     
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    Old 02-11-2008, 07:42 PM   #2
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    Hi there! Sorry to hear you're feeling so badly. You'll find a lot of poeple here you will identify with and vice versa. There's wonderful information.

    From what I can gather, a huge group of people with Lyme test negative. I was recently diagnosed with a negative ELISA and Wester Blot according to CDC criteria. Just curious, have you seen a Lyme doctor yet or are you still going through the endless circus of physicians who will only view Lyme through the lens of the CDC's very narrow guidelines?

    Just curious how you know you need an IV? Have you already gone the oral abx route with no luck?

    If you haven't found a Lyme doctor I would strongly suggest it. An LLMD won't look at your Western Blot as black and white positive or negative. He or she will look for Lyme specific bands. They'll be much more open minded and have a lot more knowledge about how Lyme affects you.

    I would definitely caution against demanding anything from your doctors, especially since yours seem to so be unwilling to work with you. It's a tough, horrible, demeaning thing to have an illness and be dismissed. But I have found that to be one of the hardest parts of this years long journey to get diagnosed. Even the doctors who believe in chronic Lyme and want to help sometimes have their hands tied depending on where they are affiliated, etc. What I've found is that we (the vast population of Lyme sufferers) get dismissed by so many doctors or told "it's all in our heads" so often that we develop a mistrust of doctors, but if you can find an LLMD who is willing to work with you then you can go back to being the patient and letting them do the work--the way it's supposed to be--we're paying them, after all, lol! Of course we all have to be our own best advocates, but the way I see it my LLMD went to school for a long, long time. He works for a nationally respected medical center and continually is learning about Lyme in a labratory setting and by continuing ed, etc, so his knowledge trumps mine, no matter how much I read on line, in journals, here at Lyme conferences or at my Lyme support group. I'm so relieved to just finally relax a bit (but not completely, I still have work to do) and feel like my doctor is working both FOR me and WITH me, rather than against me!

    Good luck to you and I hope you find treatment soon!

     
    Old 02-11-2008, 07:43 PM   #3
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    Hi Lateralus. No test for Lyme is completely reliable, and results can vary by lab. Some people who have Lyme do not test positive.

    Do you have a copy of your Western Blot? The CDC requires several bands to show for it to be positive; however, many people who have Lyme do not have this many bands. Lyme doctors often look at which bands are positive. Some are specific for Lyme.

    Didn't you say you have an appointment with Dr. H? Is this the one in Hyde Park? When is your appointment?

    It is very important to be tested for the co-infections also. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case.

    Whether oral or IV antibotics are used can depend on several factors such as how long someone has been sick, the kind of symptoms they have, if co-infections are present, other health issues, etc. Orals are often used first because they can be effective, they are easier to administer, are less risky, and less expensive. A knowledgeable doctor will know what treatment is best based on your history.

    Hang in there okay?

     
    Old 02-11-2008, 07:54 PM   #4
    Lateralus112358
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    well, I was on oral doxy for about two months. Once I finished that up I slowly got worse again. Now it's getting back to that point where I spend all day in bed, going through bottle after bottle of advil.

    I have an appt with dr. H on 3/3... more than three weeks... at this rate I will be hospitalized (again) before the appt comes around. I literally cannot move my shoulders without them snapping and hurting every time. If I sit in the same position for a while, they crack when I move and it hurts, sounds like biting an apple and snapping a twig at the same time. I think it's like super inflammation in the rotor cuff.

    I find myself spacing out all day too, it takes me 2x a long to get my chores done because I keep staring off into space and losing track of time before I catch myself.

    I really, really need something. Maybe I can make an appeal to my doc just to write an Rx for the catheter as a profilactic. I mean he could probably give me some oral doxy again, but honestly, how well will that work if it couldn't do the trick last time?

    The worse this gets, the more time it's going to be on the road to recovery...

     
    Old 02-11-2008, 08:10 PM   #5
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    I suggest calling Dr. H's office and explaining your situation. Ask to be notified of any cancellations. Sometimes this helps to get an earlier appointment.

    What dose of Doxy were you on? It may not have been strong enough. There are many different meds that can treat Lyme. What works for one person may not work for another. The Lyme doctor can decide what treatment would be best for you.

     
    Old 02-11-2008, 08:46 PM   #6
    Lateralus112358
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    Excellent idea, I called the Dr. a couple days ago and asked to be notified of any cancellations.

    I was taking 100mg doxy.

    SuzyQ: I thought it was like a shunt that goes into your arm or something.

    Last edited by Lateralus112358; 02-11-2008 at 08:47 PM.

     
    Old 02-12-2008, 04:51 AM   #7
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    Great post, suzy! (I hope julie0513 reads it) Sounds like super scary stuff! I've only been on oral abx since May, and while I am not getting better, I'm not a whole lot worse. I really do NOT want to do IV therapy unless I absolutely have to. But your post makes me hope and pray I never need it.

     
    Old 02-12-2008, 06:57 AM   #8
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    i second that, IV does not sound fun. (as if anything about Lyme is fun, lol!)
    Good luck Lateralus, I will keep my fingers crossed for you that maybe the doctor will have a sudden cancellation!

     
    Old 02-12-2008, 11:42 AM   #9
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    I think that would be super helpful the reason i come here is to find out how Lyme affects real people and how many others are like me. It helps me feel "normal" when certain doctors throw the old "Well, the research says this..." line at me, as if I couldn't possibly be feeling what I'm feeling unless the CDC says I do. It's very useful to learn all the things doctors won't tell you, like how symptoms really feel, or what kind of experiences you've had with treatment. For instance, if we ask if a med is going to make us gain or lose weight, cause skin problems, etc, some doctors will just recite the package insert information (as if we can't read) or ignore us. The people who actually use the meds who share their experience are great, because even though we know everyone's response to meds is different, at least we know there might be someone out there who's had a similar reaction and we're not just imagining things.

     
    Old 02-13-2008, 08:42 AM   #10
    Lateralus112358
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    SuzyQ... thanks for the information. I'm very sorry to hear of your experience. I think this is one of the few places where Lymers like us can get any real sympathy. Most people just wanna brush it off like "Lyme Disease? You mean that thing with the ticks? Pffft... shut up crybaby." I haven't had it as bad as you, but I know, from your story, how much of a hassle and a heartache this has been. Things will sort themselves out, bit by bit.

    I got a prescription for some 100mg doxy... take two at a time? or just one? I took two at a time for the first two doses (12hrs apart) and I already have more energy.... had a nasty stomach reaction at first though. I think I'll go back down to 100mg at a time, just to stave me off until the 3rd.

    my immune system is completely blown. I got a cut on my thumb two weeks ago, and it practically turned into an ulcer before it healed, the scar is puffy and pink. Same thing with other little cuts and scrapes...they take forever to heal. There was a time when I could get a paper cut, and practically watch it heal closed. Now it's like everything gets infected, takes a week to close up, and leaves a scar.

    Something tells me that, in that sense, we're in the same boat... it's going to be a while before things shape up for the better.

     
    Old 02-13-2008, 02:02 PM   #11
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    Have you tried Doctor L. in Armonk, NY? He wouldn't just prescribe you IV without making a diagnosis, but he's very thorough, has a lot of experience with lyme disease and should be able to tell you what's going on.

    Last edited by Tom1900; 02-13-2008 at 02:04 PM. Reason: added info

     
    Old 02-13-2008, 11:08 PM   #12
    Lateralus112358
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    Re: Need IV Abx... how do I get them without a positive Lyme test?

    Quote:
    Originally Posted by ktp812 View Post
    I go to see Dr. H on March 4th for my second visit. It took me over two months to see him for my first visit. I am on IV Rocephin now for 5 months and have had no problems at all. My picc line is fine and I have no problems infusing myself. Do not be afraid of IV therapy if he recommends it. As long as you keep the line dry and clean you will have no problems. I do not use heparin only saline to flush so I wasn't involved in the whole contamanated heparin problem last month. Maybe Dr. H will say I have had enough I don't know. All I know is that
    Rocephin has helped me the most. I saw big improvement after only being on orals for a year. I am now on malarone for babs-rifampin for bart and plaquenil along with the cowden protocal and lots of supplements.. The great thing about Dr. H was that he KNEW exactly what I was talking about and gave me a treatment plan based on the office visit and my symptoms and how long I have been sick. He also did Tons of testing. I think they took 12 tubes of blood. He tested for everything!
    I felt so comfortable there and didn't feel as though they were looking at me as if I was nuts. Good luck and
    I hope your visit goes well.
    Jesus Christ man, sounds like you're in tough shape. My heart goes out to you.

     
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