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    Old 08-16-2005, 06:58 PM   #31
    Betterdaysforme
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    Re: PICC line people

    Dear lesley,

    I'm so glad everything went okay. Don't forget the probiotics to keep the good bacteria at an optimum level and the milk thistle to keep the liver clean. I guess prayer really does work. I hope she doesn't have any problems with all the meds. It's a lot. Just give her lots of tender loving care. I am glad she has a 3 day break each week. That should help when school starts. Keep us posted.
    BDFM

     
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    Old 08-18-2005, 09:49 AM   #32
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    Re: PICC line people

    Hi PICC-ers,

    Decided I've been lax about posting and I have to admit that it's because I'm feeling so darn good! My husband and I went to a movie last night for the first time in months and then met our daughter for a fun dinner out.

    Since starting the Florastor (probiotic) my problems have all but disappeared. I go to see my LLMD next month and can't wait to show him how much I've improved. I used to get all freaky about having to fly although it's just over an hour each way, but now I'm excited to go. My daughter's coming with me and we're going to spend a couple of days with my niece and her family and see my other nieces and their familes, too.

    I've been on the Rocephin IV for just over three weeks and I'm honestly seeing great improvement in energy and overall wellness.

    I pray everyone reading this has a similar story to tell eventually. My best advice - HANG IN THERE! Let the prayers being sent your way be your greatest ally and believe that you're going to win this war.

    My best wishes to all,

    TeeDee

     
    Old 08-18-2005, 07:34 PM   #33
    Betterdaysforme
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    Re: PICC line people

    Dear TeeDee,

    I could just cry tears of joy for you. How fabulous. I was on the rocephin for 9 weeks and only saw the little things go away. Of course you will never convince me that the steroids they gave me hasn't played a huge part in my recovery even if they were 3 years ago. Make sure you keep us posted and don't desert us even when you are well. Please make sure you continue the meds for some time after the symptoms are gone. We don't want a relapse.
    This will be such good news for Romans. There is hope.
    BDFM

     
    Old 08-18-2005, 08:35 PM   #34
    Lesley1954
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    Re: PICC line people

    Yes, Tee Dee, your post was a wonderful inspiration. Sara's only been on Rocephin for three days now; it's almost too much to hope that in another 2-1/2 weeks, I might be able to write about how much better she's feeling. Interestingly, although she tells me she's feeling worse, she actually looks like she's feeling a little better. Maybe that's just hope on her part, which hasn't been there for a long time.

    Tonight the suture holding her PICC line in place (it looks like a small metal bread tie) broke through the Tegaderm bandage. I'll give the home health nurse a call tomorrow. Sara's bothered by it and wanted me to try to trim it. I'm more concerned about the break in the Tegaderm (in terms of the potential for infection), but I figure it can wait until tomorrow. Is this anything to be overly concerned about? I guess those sutures stay until the PICC line comes out. She's still complaining about a fair amount of soreness around the insertion point. Hopefully, that will be better soon.

    Better Days, thanks for the well-wishes and the reminders about probiotics and milk thistle. We are doing both. What a challenge it is to schedule her zith on an empty stomach, 2 doses of plaquenil and 1 dose of Actigall with food, probiotics 3x a day, but not close to when she's taken abx. In addition, she has taken 6 salt tablets a day since February for POTS (postural orthostatic tachycardia syndrome). When she doesn't take them, she is very dizzy and lightheaded, but she is definitely rebelling against so many pills. We asked the doctor if he would order IV saline to replace the salt capsules. Hopefully, the dizziness will clear up as her Lyme is treated.

    Thanks to all for your support,
    Lesley

     
    Old 08-19-2005, 05:08 AM   #35
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    Re: PICC line people

    Hi Lesley. If you ever have a question about the IV dressing, I suggest that you call the nurse. It is better to be safe.

    From what I understand, you do not need to take Zithromax on an empty stomach. I have never taken it this way. Call the doctor or pharmacist. Maybe this will help a little with the scheduling.

    I hope Sara feels better soon.

     
    Old 08-19-2005, 06:43 AM   #36
    Lesley1954
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    Re: PICC line people

    Hi Ticker,
    Thanks for your response. Actually both her doctor and Karen Forschner's book say that absorption of Zithromax is reduced by up to 50% if you have food in your stomach. That said, the doctor and the pharmacist both said she could take it with a little food if it bothered her. The first week I gave it to her with food, but this week I started giving it to her on an empty stomach. She seems to be doing ok with it -- not much nausea, no diahhrea. The only problem is a significant amount of gas -- not particularly smelly, but definitely audible. Any thoughts on what might be causing that or more importantly, what might help with it. Definitely an inconvenient side effect for a 14-year-old getting ready to start high school in a few weeks.
    Thanks,
    Lesley

     
    Old 08-19-2005, 08:18 AM   #37
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    Re: PICC line people

    Hi all....TeeDee I am SO happy for you! It is soooo good to hear your progress and about your fun night out. A night out with a movie and dinner...how exciting!! Can't wait till I can say the same. And Lesley I do remember you from you're posts way back when now that you mention it...didn't make the connection the first time you posted here though. But I was relieved to hear that your daughter's PICC line went in well and that she is feeling worse - means it's working and that's positive news!

    I am still in the dark for good news. I've spent the last 2 days supremely nauseous, actually throwing up a few times which was a first for me for a long time and out of my mind in pain depsite the phenegren and vicodin. Tuesdya I turned the brightest red "lobster" as I have in months, actually looked like my skin was bleeding underneath. Yikes. But I'm up a little bit this morning as I have to make the 10 minute trek into town to see my doc today. The ten minutes always seems like hours and leaves me super exhausted, even though I'm only the passenger. But maybe he'll have some ideas of how to get my jaw back in joint so it'll stop hurting and popping all the time, that's the only motivation to go in there today. Well that and I'm pretty worried about my ciruclation again as my feet and hands look pretty yellow and pale, despite the huge bruises from the swelling in all my joints. Will keep you all posted as to whatever his ideas are...

    Bothrops and Gomez ~ how are you guys doing? hoping you are both feeling better and just having so much fun that you're too busy now to post!! hope to hear your good news soon.

    Lesley ~ tell your daughter she's in my prayers and to hang in there, we'll all get through this together. oh and did you guys end up getting the colorful covers for her PICC? hope she is styling in a lovely color...wish they had had that option for me in 1993 when I had my first bought with lyme. I had to settle for a plain white covering...imagine that!

    Later all...take care and have a good weekend.
    __________________
    "Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

     
    Old 08-19-2005, 09:26 AM   #38
    Betterdaysforme
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    Re: PICC line people

    Dear Lesley & Sara,

    I am glad everything is going fairly smooth. Romans is right the bad feelings may be some type of herx. I didn't have any sutures in my picc-line but then again I had a great doctor inserting it. Just joking. When I would go in once a week for bloodwork and to clean the site I met a gal who was on an IV of gamma globulin because her immune system was bad. Not lyme though, something else. Anyway she couldn't believe I didn't have sutures and said they were uncomfortable and how lucky I was.

    I also meant to tell you the other night to say "Thank you" to your husband (father) for all he is doing. We don't say it enough. Dallas/Ft. Worth Airport is one of the 2 major hubs the soldiers fly through to get home on leave from Iraq and Afghanistan and they have set up a USO out there and every day have at least a hundred people waiting for the soldiers when they return to shake their hands and say thanks. Pretty awesome for the people of DFW to do this. We have had numerous letters written to the paper from soldiers all over the states who have said what a great and unexpected welcome this was. Maybe when I get better I can join them. I was hoping my son would fly through here when he came back but for some reason ended up in Baltimore instead on his way back to Alaska. As soon as we got the call I just kind of crumpled and cried. In fact as I write this I am getting teary eyed. Have a good weekend.

    BDFM


    Romans,

    What are we going to do with you. Just keep adding the prayers I guess. I hope when you threw up the little buggers came with it. Then a good flush. I hope your appointment went okay and you get some relief from your jaw. If there is a symptom, I think you have it! I still don't get the "lobster" business but hopefully it means the drugs are working. I took phenargen one time for my stomach and it worked great but a few hours later my legs were sooooo restless I didn't take it anymore. My homeopathic gave me something called calm, little teeny white balls you dissolve under your tongue. I don't know if they would work as well with what you are going through though.

    I hope you didn't have any of the tornado type weather where you are. We are used to them in Texas but they are still so destructive. Here's hoping for some brighter days.

    BDFM

     
    Old 08-19-2005, 01:50 PM   #39
    Roman77
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    Re: PICC line people

    Just got home from the doc...he said my jaw is out of whack/alignment from my face and jaw joint being swollen so I have to go on a soft food diet for 2 weeks to give my jaw a break from chewin and put hot/moist heat on it 2 x day in order to stop it from getting any worse. He also gave me some Lexapro samples to try since my mood has been going downhill pretty fast lately with all this stuff going on. Hopefully the Lexapro will help me get through this a little easier, if that's possible.

    BDFM ~ I like the thought that maybe I threw up some of those keets...ha! But just an explanation of the "lobster" episodes...it usually comes on suddenly and starts when I get this tingly/burny feeling in my head around my forehead, then it goes down my neck, hits my joints like elbows, knuckles, knees, and feet and anywhere else it wants to go...then the tingly/burny feeling turns to a severe heat and a red flushing/mottling wherever it is at the moment. Whereer it strikes it feels like a combo of posion ivy and the worst kind of sunburn imaginable. It lasts anywhere from an hour to a day. Dr C has told me it's quite normal for this to happen and is part of herxing for some people. It was pretty scary the first time it happens, and this last one was one of the worst ever. I think it's the keets moving around and getting upset or maybe even dying....either way it's not fun and is pretty painful. I have to put ice packs on and take benadryl to get me through it. Hard to explain but I hope you never have to have it happen firsthand!

    Lesley ~ Just wanted to say I agree with your daughter about the sutures...I had 2 sutures to start with, one holding my hickman in above my breast and the other at another spot about 6 inches above, near my collarbone where they had to go through to insert it into the vein near my heart. I was so glad when the dr was able to take out my first suture after 10 days, but the one near my collarbone is still there completely under my skin. And it has to stay under there until my body dissolves it on it's own. It's quite a bother and itchse a lot so I sympathesize with her!

    I'm off now to take a nap...pretty beat after all the running around today. Take care fellow PICC-ers!
    __________________
    "Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

     
    Old 08-19-2005, 05:48 PM   #40
    TeeDee
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    Re: PICC line people

    Hi All,

    This going to be a long post and I apologize for that and for repeating some of the things I said in a previous post (I'm also sending this to a couple of family members and personal friends).

    I don’t normally quote Bible passages...there are just way too many supposedly religious people out there and I personally believe that the majority of them are hypocrites and like to hear themselves talk. That being said, I need to quote the Bible because this passage pertains to me right now.

    “Pride cometh before a fall.” I don’t know which Bible book or chapter that comes from but it explains how I feel about something I did a couple of days ago. I wrote to some of my online “Lyme-Cronies” and reported on how great I was feeling after being on IV Rocephin for just under three weeks. I’d been pretty miserable with stomach/digestion issues until my LLMD steered me to a nutritionist who sent me a probiotic that cleared things up for me in just a few days. Then on the day before I posted that, my husband took me to dinner and a movie and I felt better than I have for over a year.

    But I made a couple of real bad decisions that night and broke some of my own rules. For one thing, I’ve been really careful with my diet - have avoided sugar, eaten as many fruits and vegetables as I could, I used to like a light beer or a glass of wine sometimes and I haven’t had any alcohol since April, I smoked years ago but will never go back to that, I’m seeing a physical therapist and doing my exercises EVERY day.

    But both my husband and I were in a celebratory mood, saw a movie we both thoroughly enjoyed and he bought some “Whoppers” and I got red licorice. It was wonderful to taste candy again and I felt like I deserved the rewards because I'd been SO GOOD. We had a wonderful dinner with our daughter at one of our favorite restaurants and my daughter and I shared a piece of Key lime pie (I thought it was funny at the time, but I was celebrating!).

    The next morning when I got up I still felt terrific and that was when I sent the “Lymie” post. I had decided I was going to give my house a good cleaning and started on that. That was when my stomach began to act up and within an hour I was light-headed and felt pretty awful so I lay on the bed and read until I fell asleep (when I really wanted to be cleaning house). I went to bed early that night, real bummed about my feeling of great health leaving me so suddenly.

    My husband and I discussed what might have caused this downward turn and he was feeling bad, thinking that he had tired me out. After giving it some thought, I said, “Let’s take a look at what I did that might have made me feel rotten.” Like eating sugar for the first time in months and it wasn’t just a little taste...I probably scarfed 10 Whoppers and at least that many mini-pieces of red licorice. That’s quite a bit for a previously goody-two-shoes in the diet department.

    The reason I wanted to post this is to tell the PICC-line people and my other Lyme-friends that you can’t let your vigilance slide. I learned that those **** skeets are just waiting for a chance to “get” you if you give them an opening. Please learn from my bad judgment and keep fighting the good fight.

    By the way, I feel good now and I’m going to continue to progress upwards! You people are in my prayers (always) and I want to hear good reports from all of you!

    Your Lyme-comrade,

    TeeDee

     
    Old 08-19-2005, 06:18 PM   #41
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    Re: PICC line people

    Dear Romans,

    I will bet that the Dr. is right. The little buggers are moving around and not real happy that you've put out the "no vacancy" sign. Serves them right. I truly think that sooner or later the cycles of the new breed will start to decrease and you will just feel like crap like the rest of us. That's encouraging isn't it? Have a good weekend and enjoy your soft diet.

    BDFM


    Dear TeeDee,

    I was so excited for you but at least you are starting to feel better again. I know a lot of people on here avoid sugar completely. I don't do that but I don't actively eat it either. If my salad dressing or something like that has sugar in it I figure I'm okay. My husband brought home the yummiest looking coffee cake when he went to the grocery store this week and I am proud to say he has eaten the whole thing himself. I am almost afraid that if you completely cut something from your diet you will have the reaction you did. Kind of like an alcoholic. I eat so many fruits for my sweet tooth that I am surprised I don't have fruit flies circling me. Don't beat yourself up. It is only normal to try and celebrate and be "normal" again.
    I pray for a quick return to the better health you were experiencing.

    BDFM

     
    Old 08-20-2005, 09:07 AM   #42
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    Re: PICC line people

    Sorry I haven't kept in touch. Dealing with extreme nausea and joint pain. I just want to stay in bed and cover my head!!! I started adding the Climdomyacin infusion to the Rocephin, I don't know If i can keep it up!?! No fun at all!! I can't stand the thought of food, but I need to eat something before i infuse. Taking probiotics twice a day and that has helped the Diarhha, but I feel so sick to my stomach!! I have noticed some improvement with the "brain fog" and cognitive stuff, but that is the only thing that has improved at all. Everything else seems worse!!

     
    Old 08-20-2005, 09:58 AM   #43
    TeeDee
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    Re: PICC line people

    I'm sorry you're feeling so awful, Gomez. Have you told your doctor or nurse about this? Maybe you could get a prescription for something to get you through this. I know it takes some time for your body to adapt to the Rocephin but after almost three weeks I'm feeling remarkably good.

    I'm praying for you and everyone here, but especially for the ones who are feeling lousy. I hope you get some relief soon and can continue the fight against this nasty disease.

    TeeDee

     
    Old 08-20-2005, 12:00 PM   #44
    Lesley1954
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    Re: PICC line people

    I, too, am sorry to hear about the continuing tough road for Romans, and that Gomez is also feeling bad. Sara, my 14-year-old, has just finished her first week of Rocephin (4 days and now we have 3 days off). She also takes Zithromax and Plaquenil.

    Not much to report. No bad side effects, which is great. She seems like she might be feeling better, but when I ask her she doesn't think so. No apparent herxes. On the one hand, I'm glad to not see her suffer; on the other, I worry about what that means. Tee Dee, did you have herxes at any point during your first three weeks? Is it possible that you actually had a herx the other day and it was just coincidental that it came after your night of celebrating?

    Sara still complains about her arm being sore, mostly after she's been up and using it. Elevating it, using heat, and taking ibuprofen seems to mostly take care of it.

    I'll keep you posted and will be praying that this week brings improvement for everyone in the PICC line group.
    Lesley

     
    Old 08-20-2005, 07:44 PM   #45
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    Re: PICC line people

    I know this sounds pretty odd, but from the time I first started taking antibiotics (last Sept.), I made a conscious decision to not let myself even think about Herxing. I figured that if I had a bad day, I was just going to do my best to get back to a point where I was feeling better. Keeping myself up and in a good frame of mind is a big thing for me and I didn't want to give myself the excuse to feel bad by giving it a name like Herx. But really, with all the stomach problems, it more than likely was a pretty continual Herx for those first few weeks.

    My husband and I went to an outdoor wedding today and I'm exhausted. I didn't even eat a piece of wedding cake but ate some fruit (melons I don't usually eat) and my stomach doesn't feel great. I'm going to bed early and hope to report tomorrow that I feel good.

    Tell Sara to keep up the good fight and that we're all sending good vibes her way (and yours, too).

    TeeDee

     
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