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    Old 11-29-2005, 07:58 AM   #226
    Pearlscale
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    Re: PICC line people

    Update: Went back to Jemsek Clinic yesterday.

    Picc site has been giving me problems, one blister that was just healing and area under bandage was hurting. They removed the dressing and cleaned it and put different dressing on it this time. Within few minutes it had started forming new blisters under the clear dressing. Alot of pain. They had to remove the dressing, sterile bathe the site to clean. They said the alcohol wand they used to clean it with and they type dressing were causing the problem. The area had gotten so bad they wrapped it in sterile gauze, no tape. It has really been hurting.

    Hip pain was so bad, blood pressure up, so much nausea. They gave me phengran injection. The provider said blood pressure will probably be up alot. I'm on blood pressure meds.

    Did start clinda. Provider said to go slow. I'm set to infuse M - W - F twice a day but she told me to infuse based on how I was herxing. She doubted I would be able to do more an a couple times a week. Holding off on the mepron for awhile.

    She gave me RX for diamox250 that will reduce the fluid in brain to try to keep the headaches from getting so bad. Rx for potassium because I will lose alot with the diamox pills. I am to continue Primaxin with the Clindamycin. I am going to wait until tomorrow to start the combo infuse. I feel rough today.

    Derek, if you read this. Tell them about your blisters. Get them to use Bettadine. They told me that is the best for sensitive skin.

    Tronnie, Maureen, Brennd & Kim. (Shanna too) When is the tea party, neighbors? I need a friendly shoulder to cry on.

    Prayers to all. Marsha

    Last edited by Pearlscale; 11-29-2005 at 08:16 AM.

     
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    Old 11-29-2005, 09:44 AM   #227
    TeeDee
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    Re: PICC line people

    Marsha,

    I'm so sorry you're feeling bad. I'm drinking a cup of ginger tea right now to make my stomach feel better and am sending you prayers for you to feel better, too - sort of a two-for-one prayer.

    We're leaving in a couple of hours for "home" for a day and night and I have to put an ice pack under my puffy eyes to try to not look like I've been bar-hopping all night. I have to put on makeup and find something decent to wear. Small issues compared to what you're dealing with and I really hope things get lots better for you QUICKLY!

    My best to all of you and when I get back I hope I hear good reports from all.

    You're all in my prayers ,

    Tronni

     
    Old 11-29-2005, 09:49 AM   #228
    Pearlscale
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    Re: PICC line people

    Tronni,
    Have a great time and try not to overdo. Good stress is still stress. I hope in a few days, we can both say we are feeling better. And now I am going to join you in a cup of tea.

    Prayers.......Marsha
    I understand completely. Sorry.

    Last edited by Pearlscale; 11-29-2005 at 12:17 PM. Reason: Correct spelling

     
    Old 11-29-2005, 12:00 PM   #229
    TeeDee
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    Re: PICC line people

    We're just heading out the door and I checked the posts and had to make a comment that's really not of great importance. BUT before everyone starts spelling my name with an E, I wanted to say it's spelled Tronni.

    Now, everyone take care and feel well!

    Tronni

    Last edited by TeeDee; 11-29-2005 at 12:02 PM.

     
    Old 11-30-2005, 09:26 AM   #230
    Betterdaysforme
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    Re: PICC line people

    Dear Marsha,

    I hope today is going better for you. I took 4 days off of the meds because of the bad herx and went back on Monday. Too soon! I thought I was feeling a little better but boy what a shock. I was also up to 6000mg vit C too and something is kicking my butt. Ronnie went back and reread some of Dr. C's paperwork and we should be thrilled this is happening. I understand the herx but Ronnie is having a very hard time believing it unless he continually reads the paperwork talking about it.

    I agree with the nurse take it nice and slow. I honestly didn't have any problems with the clinda/quinine combo the first 10 days and then I did the biaxin/plaquenil combo and it knocked me down some after 5 days I took a 2 day break but the next 5 days were no problem. System adjustment I guess. Then I was on the clinda/quinine for 7 1/2 days and I told you all what happened. After going back on just for 1 day I had to start using the walker around the house and my arms are totally weak. I try to turn over in bed and feel like a beached whale because I just can't turn. I just decided to sleep on the couch last night because I couldn't go upstairs. Dr. C's paperwork actually said herxes last 3-6 days and sometimes 30 days. I don't want to be off the meds that long.

    I just talked to a very nice gal at Dr. J's nutraceutical branch to order some products. Thanks Denise, Jeanne, and Romans. She was extremely helpful and I was going to order his basic neuro-tox formula but she really felt I needed the muscle/joint neuro tox, silphitrin, and pale spike. I hope I can remember all she told me. She feels that the lyme is lurking in the muscles and so that is the right mix to go with and should be fine even with my abx. I'll keep you and Tronni and Kim posted on this because I know we are all suffering from the mobility problem. She didn't ask me what size so I don't even know how many she is sending me. I hope I don't faint when the bill comes. If it's a lot it will just last longer I guess.

    I hope your picc-line site is healing now that they know the cause of the problem. Like I said be sure to keep a watch on the clinda. I thought I was free and clear but it creeps up on you. That or it is just a great big wonderful herx.

    I hope Tronni enjoys her little outing and doesn't overdue.

    Maureen

     
    Old 11-30-2005, 10:37 AM   #231
    lymegirl
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    Re: PICC line people

    Hi Maureen

    I will be interested to hear if those products work for you. I feel the bacteria is predominately in my legs too and probabally embedded in the muscles. I get aches all over (neck right now too) but the stiffness and pains in the legs is terrible.

    What Dr J are you talking about? Jernigan? Please let me know. I am still trying to get his book. It is out of print Borders tells me, after waiting 6+ weeks for them to get it for me. I'm sure there is somewhere on line I can find it.

    Hope you start to feel better soon
    Kim

     
    Old 11-30-2005, 12:34 PM   #232
    damz68
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    Re: PICC line people

    Quote:
    Originally Posted by Pearlscale
    Update: Went back to Jemsek Clinic yesterday.

    Picc site has been giving me problems, one blister that was just healing and area under bandage was hurting. They removed the dressing and cleaned it and put different dressing on it this time. Within few minutes it had started forming new blisters under the clear dressing. Alot of pain. They had to remove the dressing, sterile bathe the site to clean. They said the alcohol wand they used to clean it with and they type dressing were causing the problem. The area had gotten so bad they wrapped it in sterile gauze, no tape. It has really been hurting.

    Hip pain was so bad, blood pressure up, so much nausea. They gave me phengran injection. The provider said blood pressure will probably be up alot. I'm on blood pressure meds.

    Did start clinda. Provider said to go slow. I'm set to infuse M - W - F twice a day but she told me to infuse based on how I was herxing. She doubted I would be able to do more an a couple times a week. Holding off on the mepron for awhile.

    She gave me RX for diamox250 that will reduce the fluid in brain to try to keep the headaches from getting so bad. Rx for potassium because I will lose alot with the diamox pills. I am to continue Primaxin with the Clindamycin. I am going to wait until tomorrow to start the combo infuse. I feel rough today.

    Derek, if you read this. Tell them about your blisters. Get them to use Bettadine. They told me that is the best for sensitive skin.

    Tronnie, Maureen, Brennd & Kim. (Shanna too) When is the tea party, neighbors? I need a friendly shoulder to cry on.

    Prayers to all. Marsha
    Hey Pearl,
    I noticed a while back that the betidine was better, it is the adhesive that tears me up. I have not used a stat lock for three weeks and the line has already come out a little more than a centimeter.

    Last week my nurse changed it and put some of that tape on my skin, later that night it was itching so bad I felt like ripping my arm off. At about 12:30 that night I changed the bandage myself and as I was cleaning around the line it came out a little. I did not notice it till I put the sorbaview down. I figured when my nurse came back I could get her to push it back in. She was here today and told me it does not push back in and if it comes out much more they will have to pull it. I look forward to that day!

    So has anyone gotten better? I feel no differant than I did the day they stuck that line in me. Those negitive thoughts are starting to creep back, you know, do I really have lyme or will I ever work again. I guess it has been 4 months going on 5 that I got the picc and if I am not mistaken we all got them at about the same time. I hope someone has positive results, they did tell me it was a 70% chance I would feel better after 6 months of IV. That is a good number so someone here has to be feeling better.

    Derek

     
    Old 11-30-2005, 01:11 PM   #233
    Betterdaysforme
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    Re: PICC line people

    Dear Kim,

    Yes it is Dr. Jernigan I am talking about and I will definitely keep you posted. I am so happy for Denise's progress but blown away by Shanna's. I guess that is what pushed me to do this and as I said the girl at the 877 # was very informative as to what I should order.

    Maureen

     
    Old 11-30-2005, 04:32 PM   #234
    Pearlscale
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    Re: PICC line people

    Derek
    No matter how tempting it is to pull the line just a little bit (I know you want it out) don't do it. You have to keep on fighting this. Don't give in even a little. Dr Jemsek told me I'm looking at probably 6 mo on iv and then 1 1/2 yrs oral. I am progressing at a snails pace. 2 steps forward 5 back. How long have you had lyme. Co-infections. Have any of the meds worked for you. Do you herx. Do you see Susan?

    Maureen
    Its good you have Ronnie. I know what a help he has to be. Larry is the same way. You mentioned herxing up to 30 days. I hadn't heard that.
    I will also question on the Vit C. I am not taking it, dr has not mentioned it. Derek, are you taking C.

    I go back on the 12th. My site is still giving me touble. I'm so tired of fighting this. Tired of feeling bad all the time. I started this lyme battle 18 yrs ago. Did'nt know then what we know now. It has had a long time to get well established and I know it will be a battle. But I plan on winning this WAR.......

    Tronni
    How was your trip HOME. Details...

    Hang in there, we'll beat this. Prayers..................Marsha

    Last edited by Pearlscale; 11-30-2005 at 04:51 PM.

     
    Old 12-01-2005, 09:23 AM   #235
    Roman77
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    Re: PICC line people

    Hi all....even though I no longer have my hickman in I just wanted to give you all some much needed support. Keep on fighting you guys. We've all been there, wanting to give up, sick of being sick, sick of being sicker from the meds, doubting there will ever be a time when we'll feel normal again....but no matter how hard it gets just keep remembering that there is still hope and each day we get closer to our goal of getting completely well. Maybe we don't feel tons better or even a scrap better at the moment, but it's hopefully one less day of being sick and one day closer to being healthier and feeling some what better and stronger.

    Also just wanted to let you all know that things here in Madison are going good...have had some hard days, and some scary moments but for the most part am feeling ok and glad to be finally home even if i do leave to go back to MN in 3 days. it was worth it, mentally it's helped a ton. i'm gonna post on the main board later today about my adventures down here so check it out there if you have some time. i'm also gonna post on the main board about a new combo dr. c is ordering for me, one i've only heard a little about. this is because i have started feeling worse and have seemed to stop improving since i've been on the zithro/flagyl combo. he thinks it's time to bring out some of the anit-co infection meds and see what happens. maybe some of you will know something about it. clindamycin, quinine, plaquenil,clarithromycin on 10 day roatations.

    Anyway I sure hope we'll all have some great recovery and progress stories to share soon....we all deserve it.

    Marsha ~ with the Primaxin just wanted to say I was there where you are and there's not much that seems to help with all the nausea and vomiting other than time. I know that the shots of Phenegren and the pills helped sometimes, but that Primaxin really tore my up. My heart goes out to ya. Hang in there.

    Derek ~ maybe this will help you keep chugging along a bit....that even when I was still taking my IV this summer and fall, and feeling worse and worse or not any better at all some how after stopping my IV, starting orals and being on them for a little over one month I am finally seeing some dramactic changes. so keep on taking those IV's as long as your docs will let ya....wish I could have had more, but my insurance put a stop to that. thank god I am doing so well on orals. I'm praying you'll see some changes soon that will bring some hope back for you.

    My best to you all. Hang in there. As always you're all in my prayers.
    Shanna
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    "Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

     
    Old 12-01-2005, 09:38 AM   #236
    TeeDee
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    Re: PICC line people

    Hi All,

    I'm back but am going to be doing some recuperating for a while. We had a wonderful time back home and lots of friends came to our hotel lounge to visit and get caught up with us. It was a bit of a mini class-reunion because the word got around and several of my high school friends were there, some of whom I hadn't seen since our last real reunion in '99 (our 25th).

    We got back to our room by 10:00 and then I began to feel real punky. I'd noticed that I was having a little problem peeing but that's something that's happended periodically over the years - common with MS. But it got worse and worse, I began to run a temp, got diarrhea and didn't sleep...still couldn't pee. So we headed for home and by the time we got here I knew I had a bladder infection. How an infection was able to get me is a mystery, but my husband got me some cranberry juice, made me eat and I finally got some relief. It's better this morning but I'm going back to bed and am staying there until after I infuse the Rocephin and hope that takes care of things.

    I think this might have been another case of holding out on getting sick until it's more convenient. I got to see my family and all those old friends and felt fine for that but crumbled after it was over.

    I prayed for all of you and asked for some extra help for all of us during this busy time. I'm going to rest but wanted you to know I made it back and think maybe all of your prayers made it possible for my great time. Thank you, my dear friends.

    All my best,

    Tronni

     
    Old 12-02-2005, 10:15 AM   #237
    Pearlscale
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    Re: PICC line people

    Shanna,
    I am so glad you are having some good days. I know when I first came to the board you were having such a hard time. It give me hope knowing that you are slowly seeing improvement.

    Tronni
    Hope the bladder infection is better. It is strange how we can get an infection while taking all the meds we are taking. I was glad to see you had a good day while you were home for your "reunion".

    I'm on combo therapy now of Primixan and Clindamyacin 2 times a day M W & F. Just had my first full day treatment. I'm waiting to see if the clinda knocks me off my feet.

    Last night I had a "first". I had been on my feet for maybe 20 minutes and they went pins and needles numb. One second they were fine the next a painful pins and needles. (My whole left foot to the ankle and my right foot from my toes 1/2 way up my foot). I'm used to this in my arm but never my foot.

    Hope everyone is having a good day. Prayers.................Marsha

    Last edited by Pearlscale; 12-02-2005 at 10:20 AM.

     
    Old 12-03-2005, 11:12 AM   #238
    TeeDee
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    Re: PICC line people

    Hi Marsha,

    So sorry to hear about the pins & needles and hope that's the only bump in this new abx. road for you. Praying that this combo is the one that really brings on huge improvements for you!

    I had a rough day Thurs. but began to feel better that evening after pouring down tons of cranberry juice, water and tea. The bladder's still testy but at least working a bit. Yesterday I actually felt almost good but took it easy. This morning I'm loading up on the liquids again and think I'll kick it. I had been on my two days of no Rocephin infusion and now that I've gone back on that am sure it'll be ok.

    Going back over some of the latest posts on this thread, I came across Derek's post and got to thinking about all of us PICC people. We are all in the neighborhood of that 4-month period and that seems to be a tough time for most. When I felt better yesterday I gave myself a good talking to and said REMEMBER THE ROLLERCOASTER! This is not fun but I'm so thankful to not be doing it all by myself.

    So keep up the good fight Marsha, Maureen, Shanna, Brendd, Kim, Derek and all the rest.

    Hugs to all,

    Tronni

     
    Old 12-03-2005, 11:48 AM   #239
    lymegirl
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    Re: PICC line people

    Hi All

    Tronni

    so glad you're back and had a good time while you were visiting. I am sorry you aren't feeling well. Sounds like you're on the road to recovery though and you will be feeling better soon. I bet it was worth it to see friends and be out. Giving our spirits a boost is important too.

    Shanna

    your good news encourages us all. Thanks for keeping us updated as we need to hear the success stories to give us HOPE and you do that.

    Marsha

    Like Tronni said this disease is a rollercoaster. Hang in there. We are all pulling for you.

    Maureen

    How are you doing? Hope the new combo abx you are on will bring improvements soon. Keep us posted as some of those products from Dr J maybe good for me too. I have looked everywhere for Dr J's book, on internet for out of print books, etc. The publisher's phone # is disc. I will call Dr J's office on Mon. By the way I have a red 67 mustang. What a coinsidence!

    Derek

    I don't think we have talked before but I read your posts and am hoping you see some improvements soon. I was on IV for only 4 weeks and didn't think I was improving but after the 4 weeks when I went off (not on long enough to see lasting improvements) I realized looking back I had made some small progress. My Dr tells me to have patience as change is going to occur slowly.

    I know I have probabally left someone out and don't mean to. I am praying for all.

    Hoping everyone has a good weekend
    Kim

     
    Old 12-03-2005, 05:28 PM   #240
    Betterdaysforme
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    Re: PICC line people

    Dear Kim,

    I have been off the meds for a few days because the herx just didn't want to completely go away but no matter what will start back tomorrow. Monday we start our quarterly real estate data gathering but thankfully I'm just the navigator and folder holder. I was hoping to get my stuff from Dr. J today but it didn't come, probably Monday. I am pretty sure you can order the book from his office. I will definitely keep you posted on how it goes.

    Maureen

     
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