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    Old 12-24-2004, 06:12 AM   #31
    cjFTWORTH
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    Re: possible lyme disease

    Morning betterdays,
    Hope this Christmas eve morn is a better day for you. I live in Ft. Worth, neighbor!
    I've been reading your posts and have a suggestion for you. If you haven't posted in several days and have a question for someone (like dear mother hen, Ticker ), write a new post and it will for sure be seen. If it's really pressing, you can even put the recipient's name in the post... like,
    Treatment question for Ticker or whoever???
    Like Ohio Hunter said, hopefully any and everyone with insight will jump in.

    I wish you the VERY BEST and will be hoping the doc continues your meds on your next visit. Blessings, cj

     
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    Old 12-24-2004, 07:37 AM   #32
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    Re: possible lyme disease

    Dear cjFTWORTH,
    Thanks for the encouragement. I get up every morning thinking this will be the day! I don't want to lie to the doc to continue the meds but I may have to embellish it a little just like his nurse said. I do feel a little better on some days and that is why I think I'm on the right track. Maybe after the hassle of Christmas I can relax and things will pick up healthwise. I would like the doc to keep me going for at least 3 months, surely by then I will see even more improvement and that will at least make me feel like I'm on the mend.
    It's funny how the docs in Texas don't believe that it could be Lyme. I don't know if I got it here or in Maine but I truly think I have it. I guess I'm just fortunate that he took the chance because he really is kind of a black and white person, but I went for my first visit pretty well prepared so he knew I wasn't just some nut case. He still isn't convinced so I'm really hoping I can prove him wrong and maybe that will help some patient in the future by opening his eyes. I know he has turned down a lot of people before me. Thanks again and have a great holiday season. I hope I hear from Ticker before I have to meet with the doc again. She's so helpful.
    BETTERDAYSFORME

     
    Old 12-24-2004, 07:39 AM   #33
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    Re: possible lyme disease

    Hi BetterDays - Don't despair - 6 weeks is not that long - as well I just wanted to mention that not every antibiotic is the right one for everyone - personally I think this is due to individual physiology as well as the fact that there are multiple strains of lyme bacteria. If your doctor is so narrow minded to think that this experiment with Rocephin is the tell all then it is time to find a new doctor. I hope that he will open his mind a bit and continue on this med or try a different one. Take care and try to enjoy your Holidays...I know it is hard when all this stuff is going on but try to carve out some time just to live in the moment. Take care...ncgirl88

     
    Old 01-13-2005, 02:27 PM   #34
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    Re: possible lyme disease

    Dear ncgirl88,
    I have written to Ticker a couple of times and haven't heard back so I thought maybe if I responded to your last e-mail she might see it. I'm really wondering if I'm doing this e-mail thing correctly. For anybody out there including yourself I'm looking for some answers. The
    pharmacist at my doctor's office called today and said the blood work on my liver that was done yesterday was extremely high and to discontinue the medicine until I go in next week for my usual blood work. She told me just to do the heparin every day to keep the line open and don't be overly concerned but needless to say I am. There had not been any problem since I started the meds on 11/10 and I'm wondering why all of a sudden it is elevated or whatever it is. She said I just needed to give myself a rest from the meds for a week, do the blood work and then go from there. Am I going to be safe going back on the meds again after this? I sure don't want to create another problem on top of the one I already have. And will the medicine I got yesterday (2 mg of Rocephin) still be good after a week in the fridge?
    Maybe you or somebody out there has the answers. I have completed 9 weeks of meds and it would be great if after the week off everything went away (symptoms) although I know that won't happen, I can dream can't I?
    Hope to hear some good news from one of my fellow "LYMERS". Thanks.
    betterdaysforme (I don't want to have to change my name, hah,hah!)

     
    Old 01-13-2005, 02:57 PM   #35
    ncgirl88
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    Re: possible lyme disease

    Hi BetterDays - I am sorry you are having issues with your liver enzymes. I unfortunately have no experience with IV treatment. Ticker I believe does so we will wait for him/her. I would suggest maybe writing a new post that it is all by itself regarding this subject so she/he sees it more quickly. To do that you need to pull up the Lyme Disease list as you normally do and there is a POST button I believe at the upper left hand side...this will give you a new window and a place where you can start a new post regarding this issue.

    Hang in there and try to remain calm...stress won't make any of this better...easy for me to say, huh?!?

    Take care and keep us posted...and try to post that new one for Ticker.

     
    Old 01-13-2005, 03:05 PM   #36
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    Re: possible lyme disease

    It is the "New Thread" button you want to hit from the main list of posts and then You can title your new post and write a fresh one Does that make sense? Let me know if I can help any more with the technical stuff...I was a tech support rep. so I like helping...

     
    Old 01-13-2005, 05:54 PM   #37
    sugaragus
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    Re: possible lyme disease

    please update us if you get a confirmation on lyme disease. I've had a lot of similar run-around from the Doc's over the last 11 months and still dont know. I just had blood drawn today for the western blot test, I had to ask for it. I'm hoping I have lyme cuz I need to get better and this wait and see approach doesn't work so well. Although I really want this to have been some crazy virus that just goes away, wishful thinking.
    GOOD LUCK

    It's kind of weird how life seems so perfect and easy, and then one day you get sick and it feels like you'll never see what 'normal' is ever again.

     
    Old 01-14-2005, 08:39 AM   #38
    Komondor
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    Re: possible lyme disease

    Hi Betterdaysforme,
    I have had elavated liver enzymes but was not on IV. I was on orals and did not stop. My doctor just added milk thistle and things have been fine since. This happened last year.

    I was retested a week later and they were back to normal and I have continued taking milk thistle daily. Try not to worry as these things do happen and that is why it is so important to have that test done on a routine basis. Hope you are feeling better.

     
    Old 01-23-2005, 05:54 PM   #39
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    Re: possible lyme disease

    Dear Ticker,
    I couldn't understand why I hadn't gotten a response from you for my threads on 12/17 & 12/23 but I guess it was my own fault because I'm not always sure how to send threads and I usually attach it at the end of the last one I receive. I finally got a response from ncgirl88 and hopefully now I'm on the right track. Time will tell. You can also read my thread to ncgirl88 dated 1/13 and that should catch me up with you. A lot has happened since my last thread, in fact as soon as I wrote to ncgirl88 I started having chest pains and felt horrible. I went to bed and kept taking deep breaths to reassure myself that it wasn't a heart attack. I did get some relief from Pepto Bismol so I figured it was just major indigestion. When I went to the doctor's 2 days later we decided maybe it was a herx?
    They did my bloodwork on Wednesday of that week and on Thursday they called me in a panic and told me to stop the meds (Rocephin IV). My kidney and liver tests were high they said and I needed a week off. The next week when I went in they told me that the doctor would not give me any more of the IV because my liver enzymes had gone from 40 (normal I guess) to 787. I about had a heart attack when they told me. I sure don't want to exchange one problem for an even bigger one. I guess that was the problem a few nights before - not a herx. They paged the doc and he said I'm thru with the IV so they took the picc-line out. Was dreading this but didn't feel a thing. Maybe by next week I can take a real bath! At least one bright thing to happen to me! Anyway they redid the test and it is now down as of Wednesday to 120 and they said it should go back to normal but would shoot up again if I went back on the IV. I trust their judgement. I have an appointment with the doctor on Tuesday to discuss other options. His staff is really on my side and pulling for me thru this whole ordeal. I think that fate stepped in for me that day because I always go in the morning but my husband had to work so we went in the afternoon and the nurse and the pharmacist's boss came to pay them a visit while I was there. She was intrigued with my case and all the screwy things that have happened to me so she sat down at the computer and started pulling up all the info she could get on Lyme. She found numerous case histories and flagged them for the pharmacist to give to the doctor. I told her he didn't like website info and she said he would pay attention to what she pulled up because it was from some website that is basically his "bible" so to speak. In the website they talked about the IV treatment and Doxy and also Biaxin. I knew I had had Biaxin in the past for upper respiratory problems, not my favorite because it gave me a cottonmouth feeling but will do whatever it takes. Have you ever heard of this? It sounded as though people did the IV for as long as they could and then went to the Doxy. Does this sound right to you? I have been off all meds for 10 days now and hopefully he will put me on an oral come Tuesday. I feel as though I have taken a step backward by being off meds for 10 days? What do you think? I have to tell you that last night I was having a terrible time. This is definitely what I would think a herx would be like but maybe not. Starting at about midnight I was up every 1 1/2 to 2 hours with major diarrhea. I never once got to the bathroom on time and this went on until about 11:00 AM this morning. I am absolutely exhausted!
    I can barely put one foot in front of the other and just hope I am well enough to go to the doctor's on Tuesday. I have never had diarrhea like this before. Don't know where it all came from because I hadn't eaten even 1/4 of what came out of me. It got to be slimy and a lot of mucous after a couple of trips and smelled worse than anything I have ever dealt with before. I apologize for the graphic detail but maybe it will help you to figure out what was going on. I know there are numerous possibilities: a herx but I have been off the drugs for 10 days so could it be a herx, the buildup in my liver, but why would it take 10 days to expel itself (and the buildup in my liver - was this just the meds or was it some of the Lyme leaving me too. I never did get a good answer about why the liver elevated that way. I wish I had known about milk thistle before I started all of this. Or am I just reacting to being off the meds? Maybe it was just a good old cleansing but one I've never experienced before. What's your best "guess"? Last but not least what do you think about continuing the treatment with the orals? I'll definitely be taking the milk thistle on top of the acidophilus. Don't want any more problems. I guess they will still monitor the bloodwork but probably not as much as with the IV (weekly). It should be cheaper too! I'm just hoping that the IV gave it the old one two punch and the Doxy will knock it out! Can the Doxy actually get rid of it and I guess your guess is as good as mine in length of treatment.
    If you think last night was a herx then maybe I'm on my way. Hopefully you or somebody else out there has had what happened to me. I just hope the two weeks off hasn't set me back! I also hope the doctor is agreeable to continuing with some kind of oral meds. I do have to say that last night did not include an upset stomach just the horrible weakness on top of the other problem and a major problem with equilibrium. The weakness and equilibrium seem to have started to go back to bad since about 4 days after I came off the meds. Hopefully I'm not regressing. I'm not sure my husband will ever get me to hike again! Although I have heard that you become immune to Lyme after a bout like mine. Have you ever heard this. Not sure I will hunt for a tick to find out! Anyway that's about all for now I will keep you posted and again I thank ncgirl88 and I hope I have finally learned how to post a new thread. If anybody reading this sees that Ticker doesn't respond take pity on me and tell her where to find it! You probably cringe when you see a thread from me because it is always a novel, I guess that's my life but maybe somebody else will get some questions answered with all my queries too. I hope so! Thanks again. By the way good news - my son got back from Baghdad last Sunday and hopes to get home within the next couple of weeks. Can't wait to see him! Just glad he's out of there before the elections.
    betterdaysforme

     
    Old 01-23-2005, 07:28 PM   #40
    ticker
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    Re: possible lyme disease

    Hi Betterdaysforme. I really hope you are seeing that I have been responding to your posts

    Regarding liver enzymes, it is not uncommon for these to be high sometimes when getting treated for Lyme. Please be aware that this can also occur when taking oral meds. There is another post today regarding this. Sometimes the meds are decreased or stopped for a short time and then the person is retested. This has happened to me a few times, and it has been okay. Try not to worry. Do some research on Milk Thistle,--you can buy it at health food stores. It can help bring the liver enzymes down. Ask your doctor if it is safe to take with the meds you are taking.

    There are many different meds to teat Lyme disease, including Doxy and Biaxin. It is important that the dose is in the range for Lyme treatment, which is usually much higher than for other infections. Were you ever tested for the co-infections?

    If the diarrhea continues you need to call the doctor tomorrow morning. Make sure you drink plenty of water. I don't know why you are having it. When you take acidophilus, make sure you wait at least two hours before or after taking the antibiotic or the antibiotic will not be absorbed properly.

    Unfortunately, you do not become immune to Lyme. You can get infected again.

    I am glad that you will be seeing your son soon. That is the best medicine! Let us know how your appointment goes. And please let me know that you have read my responses.

    Last edited by ticker; 01-23-2005 at 07:29 PM.

     
    Old 01-24-2005, 07:49 AM   #41
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    Re: possible lyme disease

    Dear Ticker,
    I did receive an answer to my last thread to you. If you responded to the 12/17 or 12/23 threads I never could find it. That's okay because so much has happened since then and you are now up to date. The diarrhea has really subsided and feeling a little better. I think I will be able to keep my appointment with the doctor tomorrow. I don't know what he will prescribe if anything but hopefully his staff and I will be well prepared and things will go smoothly. I know you said that the orals are usually a higher dose than normal, about what dose should they be? I guess this means that it will take longer to get rid of this than the IV but I don't know for sure.? What's your best guess? I know it is hard to pinpoint but I would love to hear from some other "threaders" as to how long they or loved ones have been on antibiotics so I could at least know a worst case and best case scenario.
    Anybody out there feel free to respond! I mostly have a headache today and still the fatigue but hopefully that will get better this week. I do know that when I was on the IV I was finally sleeping better and that leg twitching I told you about had all but disappeared, my hair wasn't falling out and had a little more energy. Some of that has gone backwards since I stopped the IV but not completely. Hopefully I'll start making progress again when I start the orals. By the way I was tested for the co-infections and there were none. Did you ever get a chance to investigate that website I told you about that my daughter's friend is involved with? The sarcinfo.com.
    The pharmacist at the doctor's office insisted it is a good treatment but that it is for sarcoidosis not Lyme specifically. She said it wouldn't help me because I don't have sarcoidosis. My daughter tried to tell me I'm throwing my money away on what I am doing and that the protocol in this website is the only thing that will get rid of the Lyme. She also said you never really get rid of Lyme that it is always in your system. Is this true? Don't you just love kids sometime! I'll keep you posted on my visit with the doctor tomorrow.
    Have a great day!
    betterdaysforme

     
    Old 01-25-2005, 03:39 PM   #42
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    Re: possible lyme disease

    Dear ncgirl88
    I actually found the new thread button you talked about and wanted to thank you for your help. I'm sure you can read my latest thread to Ticker -
    "Still Lyme". At least I have the feeling that the doctor is believing what is going on and things will get better if he just hangs in there. Thanks again for all of your help. His attitude has really changed.
    betterdaysforme

     
    Old 01-25-2005, 03:49 PM   #43
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    Re: possible lyme disease

    Dear Komondor,
    As I told ncgirl88 I'm sure you can see my latest new thread to Ticker (Still Lyme) just to keep you all up to date. I wanted to thank you for telling me about milk thistle. You said you have been on it for a year or so, does this mean you have been on Doxy that long? If so are you getting any relief? I sure hope so! It won't be so hard to keep a positive attitude if I can hear some real success stories. I hope one of them is yours. Have you ever heard about the other stuff I told Ticker about? I don't want to overdue it but 2 ways of fighting this has to be better than one. I'm sure that symptoms and the amount of time you have had Lyme plays a big part in recovery time. Again I thank you for any and all help and direction, it's what keeps me going.
    betterdaysforme

     
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