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    Old 12-28-2005, 07:52 PM   #271
    Pearlscale
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    Re: PICC line people

    Went back to Dr today.
    I'm to continue Primaxin and Clinda (do T & F then M & T) Start Pulse of Flagyl for 4 days then drug holiday for week. Then will do Azithromyacin and Clinda with Mepron. I guess things are progressing, even if I can't see it.

    PA said I would probably have several good days on the end of the drug holiday.

    On the way to office, Larry and I stopped at Chick filet. Still had an hour drive when we left resturant. Got to dr office and realized I had left purse in resturant. Big time brain fog. Larry dropped me at office and went back to resturant. Took him 2 hrs to get purse and back to office. He got back 5 minutes before I got out. My purse was in the office when he got there and everything was ok. my guardian angel.

    Its time for a Picc update.

    Prayers..................Marsha

     
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    Old 12-29-2005, 09:56 AM   #272
    TeeDee
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    Re: PICC line people

    Hi Marsha,

    Larry deserves an award for patience and understanding. I'm so glad you got your purse back! I'm always trying to think of ways to reward my guy for being such a peach. I've hoped that if the situation was reversed, I'd be able to show the same patience and understanding. I tend to think maybe it would irritate me at times beyond belief, having a spouse with basically half a brain .

    PICC update here - the site still looks good and, in spite of Nurse Ratchett's dire predictions, seems to be holding up real well. I liked your explanation of a "drug holiday" and pray you do get those good days and that it sets up a whole new series of really good days. My doc put me on Azithromycin too, which he said might help the Mepron work better. I think it's done something because I actually feel better and have more energy after I take it. I was nervous before I started it because the side-effects listed are dizziness, nausea, diarrhea and most of the other things I had with the other things I'm taking. But I think this one's a keeper! I also feel good after infusing the Glutathione (every 3 days). Maybe both our docs are on to something with the Mepron/Azithromycin combo.

    Butch and I are hoping to go "home" for an annual New Year's Day party with a group of friends we've had since before we got married. In the last several years I've gone to some and ducked some depending on how I was feeling. I went last year but that was before the PICC so we'll have to wait and see. If I decide not to go I can stay at my parents' and visit with them while Butch goes to watch football. It's been a major fight to get him to go without me but I told him I'd feel a hundred times worse if he didn't go to tell everyone I was okay, just having a fatigue-day. We don't see those people often enough and they actually did begin as his friends but all the women and I have gotten close over the years. I'll keep you posted.

    You - and everyone on the board - have a wonderful New Year celebration. We usually manage to mumble "Happy New Year" to each other when the celebration noise wakes us up but those actual parties are way past us and I don't miss them!

    Blessings and hugs to all,

    Tronni

     
    Old 12-30-2005, 08:42 PM   #273
    Pearlscale
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    Re: PICC line people

    Tronni
    If you feel up to it, go to the party. Don't lose tough with your friends. I Know you and Butch will enjoy yourself. You've worked hard these last many months. I remember the hard time you were having when I came on as a newbie.

    My prayers go with you in what ever choice you make.......Marsha

     
    Old 12-31-2005, 09:22 AM   #274
    TeeDee
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    Re: PICC line people

    Thank you, Marsha. I've been giving this a lot of thought but trying not to obsess about whether or not to go to the party. Butch is leaving it up to how I feel tomorrow morning. I normally feel pretty yucky until around noon so the thought of riding in the car for an hour and a half is something I have to consider. I have the chicken wings I bring every year cooking and will also prepare the dip I bring but we'll decide tomorrow whether or not to go. On the one hand, I want to see everyone but on the other, maybe next year I'll actually feel good and show them my old self!

    Just lounging all day watching a movie or two sounds good. Decisions, decisions...so difficult with Lyme-brain!

    I'll let you know what happens and I wish everyone a happy, HEALTHY New Year.

    Blessings to all,

    Tronni

     
    Old 01-02-2006, 09:43 AM   #275
    damz68
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    Re: PICC line people

    Hey ladies,
    It has been a while but I am here to update. On Dec. 20 I had the picc line pulled. The line had come out about 2 cm because I could not put a stat lock on. The last month was hell, itching and oozing due to the stat lock, clear dressing and chlora-prep. They changed dressing to sorba-view and c-prep was changed to betadine with no stat lock. It was much better after that but because line had come out 2 cm they wanted chest x-ray to see placement. I felt like since it had been in for 6 months and would be coming out soon anyway I would get it pulled. Before they pulled it I got my first glutathione treatment. It did not work for me, at all, as a matter of fact the next three nights I slept 9.5 hours a night. I have not slept that much since I was a child and it was suppose to give me energy.

    I took a holiday from 20-27 . On the 23 I started getting real achy and more dizzy/spaced. My sleep went from 9.5 hours a night to 7 bad hours of sleep due to leg pain. I am still dealing with this now.

    I started orals on 27. The orals I am on are augmentin and minocin M-F with flagyl every other week.

    So after 8 months of abx treatment the only thing I have noticed is a huge decline in left fank pain and I am not as exsausted after doing simple things like sweeping floors, still very exsausted though.

    My symptoms now are dizzyness, disconnected/fog, fatigue, buzzing, burning sensations, coldness, full ears, stuffy nose, muscle pain(very bad in legs), acid reflux and many visual problems. Pretty much the same.

    So how have you all been doing? Has anyone here noticed improvement?

    Derek

     
    Old 01-02-2006, 11:27 AM   #276
    TeeDee
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    Re: PICC line people

    Hi Derek,

    Good to hear from you again. I'm so sorry about your picc troubles and really disappointed that the glutathione wasn't helpful. That seems to be one thing along with Vitamin B-12 shots that gives me a boost. But my brain fog is awful, too, and I'm getting very impatient for that to improve. I'll certainly keep everyone posted on that.

    I had promised in an earlier post to let everyone know if I made it to that New Year's Day party and we didn't. We stayed home and packed up Christmas decorations and then our son came and helped my husband put things in the attic. I was bummed about missing the party but called them and told them that next year we'd be there "with bells on" so I set myself up to get motivated again to get well. I'm very glad that the holidays are over because none of us needs any stress, let alone holiday stress!

    I'm keeping the faith that 2006 will bring lots of improvements for lots of us Lymies. Derek, please keep us posted on how things are going and don't give up! There might be something just around the corner for all of us.

    Hugs and good wishes ,

    Tronni

     
    Old 01-02-2006, 02:56 PM   #277
    Exdancer
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    Re: PICC line people

    Well all, I have decided to see about starting IV treatmeant, Dr. J wanted to start me on it almost a year ago but I wanted to try orals, I'v done that for almost a year and Im ready to see some MAJOR improvements!! I have improved some on the orals but I'm calling the clinic tomorrow to run this by thema nd to make sure they still think IV is a good idea. I'm thinking a port would be better then the picc line since I was as a nanny and I don't want the kids pulling on the line! Any idea how much time i'll need off after having a port inserted be4 i can go back to work?

     
    Old 01-02-2006, 05:20 PM   #278
    Pearlscale
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    Re: PICC line people

    Derek:
    I had been wondering about your picc line. I hope the orals work for you. I can't imagine Flagyl every other week. I'm on day 2 of 4 for flagyl. I'm feeling so sick.
    I really hope someone comes on here soon and tells us their are well or close. I'm not desperate, but getting closer every day.

    Tronni
    I hate to hear you didn't make the New Years Party. But you have a whole year to get ready for the next one. and you will be there!!!! I'm with you on the Holiday stress. Dealing with this is hard enough and then all the places you go and can't do what you use to do or just can't go at all. It is down right depressing.

    Exdancer
    I hope if you decide on the port that placement goes smoothly. If it is anything like the picc, plan on several days.

    I don't want to be a pessimest, but I wonder if you ever really get over this. (for some of you its been a year) Then again, maybe with all the studies on lyme, a cure will be found next year. We can hope????

    As you can tell, I am having a really crummy day. Between primixan, clinda, and flagyl I am not a happy person. The expanding foam is back in my head and I ache. The good news, I have a week drug holiday that starts Thurday an ends Monday. (at least that is 5 days I don't have to do any meds. Then I start on the Babesia.

    Prayers.......Marsha

     
    Old 01-02-2006, 06:07 PM   #279
    Exdancer
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    Re: PICC line people

    Pearlscale thanks for responding, so sorry you're not feeling well!!! Enjoy your med holiday! I'm on one to! I refuse to think that far into the future, i prefer to stay in denial and not think about the possibility of of never getting better. I honestly don't think thats God's plan for any of us! It may take some time but I think we will get better and beat this terrible disease! And be all the better and stronger for it! Ya'll are always in my prayers!

     
    Old 01-03-2006, 09:45 AM   #280
    TeeDee
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    Re: PICC line people

    Hi all,

    Sorry you aren't feeling well, Marsha. Hang in there...your med holiday just might give you the break your body needs. I feel like I'm having a holiday when I don't have to infuse the abx. on Tues. and Wed.!

    Exdancer, I love your optimism about God's plan for us beating this disease. Sometimes just hearing that from someone else puts me back on the right track of hopefulness.

    Derek, please keep us informed about how you're doing on the orals.

    My prayers are with all of you, too. I finally started doing some of my stretching and leg-strengthening exercises again and it feels really good to feel some muscle aches in my legs. Shows a sign of life, anyway!

    Warm hugs,

    Tronni

     
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