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    Old 12-04-2005, 11:32 PM   #241
    TeeDee
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    Re: PICC line people

    Hello friends,

    Thanks so much for being SO encouraging when I've been feeling pretty punky. I'm having no fun on the rollercoaster but am learning new things all the time.

    In Sept. when the LLMD told me he thought I'd probably be seeing some good changes in the next few months, I really grabbed a hold of that and watched for every change I could catch. Problem with that was, I sort of pushed the "it usually gets worse before it gets better" concept he'd warned me about previously into the back of my mind. I wasn't into feeling rotten, I was determined to feel better and feeling rotten became just plain annoying.

    So I was really happy to see my parents, sister and some old friends but when I got sick that evening my spirit just took a dive. The day after, when we got back home I didn't feel like getting out of bed. But the next day was my birthday and my husband and kids wanted to take me out to dinner and I begged off so they made dinner at our house. I felt even worse that night because I'D RUINED MY OWN BIRTHDAY and knew they were worried about me.

    Then you (my Lyme pals) and several friends & family members went on an encouragement tangent. My other sister who lives out of state and wasn't at the birthday gathering called this afternoon to ask how I was feeling. I told her I wanted to talk about other things because I was just so tired of listening to myself talk about feeling like ****. She surprised me by getting pretty exasperated and saying I have every right to be mad about feeling crappy but don't really have the right to not want to complain about it when I'm offered a shoulder to cry on. After a real long and emotional conversation, for the first time in several days I felt relaxed and mellow. I've been feeling so awful about putting stress on my family with my health troubles that it made me even sicker.

    The holidays would start to take their toll also, but now I think I have a handle on that. I've always loved the decorating, baking and even the shopping but have decided to make major changes for this year. I don't have the stamina to do all the usual stuff and am not going to let it get to me. I guess I'm really taking a year off from the usual holiday things I've always done and will try to look forward to next year being the one when I do get better.

    I have so much to be thankful for and you people are a major part of that. I want to hear about your ups and downs and let you know that there will always be somebody out there who cares about you.

    Again, thank you for helping me through this latest bump in the road - or maybe I should say over this latest bump on the rollercoaster.

    Tronni

     
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    Old 12-06-2005, 05:03 PM   #242
    TeeDee
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    Re: PICC line people

    I was checking out some of the posts on the main Lyme board and saw that some people have been concerned about Marsha and Maureen. I was relieved to have seen both of you post on the PICC line thread in the last few days but wonder how you're doing now? Any improvement with the clinda/quinine combo, Maureen? And how's that testy PICC line site behaving for you, Marsha?

    I've taken to jotting down little notes to myself when I read the posts so I don't overlook something I want to say to someone. Problem is, my right hand is very uncoordinated and I find I can't read my own writing much of the time. Add to that my desk is a pigpen on a good day but now that it's also piled up with holiday catalogs, there could be small animals burrowing there!

    Any way, I had a better day today and hope the rest of you also felt some relief from this stuff. I'm adding "Please don't let the holidays make any of the Lymies worse," to my prayers.

    Hang in there and keep the faith!

    Tronni

     
    Old 12-07-2005, 08:54 AM   #243
    Betterdaysforme
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    Re: PICC line people

    Dear Tronni,

    I did fine on the clind/quinine protocol the first round (10 days) then I started the biaxin/plaquenil for 10 days and after 5 had to take a 2 day break. I feel it was side effects not herx. Then back on the c/q and for the first time felt I herxed at 4 weeks and a day. I am back on the b/p and my butts draging. Dr. C's paperwork says that is good. The worse you feel the better the meds are working. I have 6 more days on it and then the c/q one more time and then Dr. C decides whether to continue this or move on to something new. I should herx right around Christmas if the calendar is correct. At least if that happens it will verify the first one.

    My whole house is a disaster and my writing stinks too. I have always written such long letters with all my Christmas cards because we live so far from family but this year I ordered cards with our names printed on them. Next year back to normal maybe. Still wrestling with a tree decision but since Brent was in South Korea 2 years ago and Baghdad last year at Christmas we will get one up somehow. This will be the first time in 4 years the whole family will be here. Hope you can get done what you need to do. I have catalog ordered and my best friend picked up the last of the gifts the other day on sale. I wasn't sure Ronnie could handle it or even find what I wanted.

    Maureen

     
    Old 12-07-2005, 03:48 PM   #244
    TeeDee
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    Re: PICC line people

    Hmmm...the worse you feel the better the meds are working, huh? My meds must be working really well! I'm right there with you on the butt-dragging scene and hope we both perk up soon!

    I just got a call that my brother-in-law's 18-year-old son died this morning of an overdose (I don't know what he used) so the whole family's in a daze. We didn't know him well but knew they'd been struggling with him for several years and just a few weeks ago my sister saw him and thought maybe he'd straightened himself out. It's just awful when a young person goes under such terrible circumstances and my husband and I will have to go to the service to lend what little support we can. So sad.

    You be kind to yourself with holiday stresses. I had pegged tomorrow to do ALL my online shopping and am going to stick to that.

    Keeping you in my prayers.

    Tronni

     
    Old 12-07-2005, 08:11 PM   #245
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    Re: PICC line people

    Tronni
    I am so sorry about the dealth in the family. Try to take it easy. Hope your bladder infection is better. I'ts hard to stay positive when herxing severely. But remember you are killing them, you are winning the war. Youre a step ahead of me on the christmas cards. I havn't even purchases mine yet. I ususally send about 150. I don't know what I'll do this year. Tronni you mentioned that your family had went on an encouragement tangent. Last
    few weeks I've turned into a recluse. Don't want to talk on phone. Don't want to leave the house...I have been herxing severely.pain in my feet mostly heels. pins and needles. ringging in ears worse. overall more achey. headache, blurred eyes, face numb. digestion problems probably from the meds. I'm on Primixan IV 12 hrs apart. 2x day and also clindamyacin iv 12 hr apart 2 x per day

    Maureen:
    With the brain fog its a wonder I still manage to give my meds correctly. I am pulsing m w f and will stop if the herx gets unbearable I know you are all glad that Brent is home for Christmas. How is Ronnie doing.

    Derek
    Hope things are slowly improving for you. I know you have been discouraged with the service for maintaining the picc line. Do you still have It.

    Shanna;
    You are our inspiration. We need good news. Share all you can. Try to remember your limitations. We feel a little better and think we can tackle the world.

    Kim
    Your Dr told you to have patience as change will be slow in coming. I wonder if that same patient was the daughter of the physician what a difference it would make.

    I have been reading the post but with the aches and pains and brain fog, I just wasn't good company. Getting thoughts from brain to paper is not easy today. I do want you to know I read the new post even when Im to tired to post.

    Prayers to all who read thisl..............................Marsh a

    Last edited by Pearlscale; 12-07-2005 at 08:32 PM.

     
    Old 12-08-2005, 08:55 AM   #246
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    Re: PICC line people

    Hi all....Just wanted to drop in on the picc line and say hi. I am finally back at my parents, my mom drove me home from wi on monday. I had a 2 week "vacation" from my "being sick" cocoon and now am back, am sad but relieved. It was truly exhausting trying to live on my own again. Even with not cooking or cleaning or driving, only just the daily lounging around with my boyfriend, and the 3 laid back trips out to dinner or a movie that I took with friends was just plain tough and draining. The conversation and thinking and sitting up and the noise/light and just other basics took such a horrific toll. But I would gladly do it over again to get that nice emotional/mental break. All in all though I'm glad to be home so now I can recoopercate and recharge. It's pretty scary to me that the bare mininimum that I did while down in Madison ran me down so much. By the time I left I was hurting pretty badly. And the 5 hour car ride home was pure hell again...so sick and in pain. Guess it just goes to show that no matter how much I have improved over the last 2 months I am still a very sick puppy and have a very long way to go. But I'm getting better every day, or at least that's what I try to believe.

    Also I've been switched on my meds too, I'm now on day 7 of my first 10 day round of Clindamycin and Quinine. I think that's part of the reason I felt so awful down in Madison too, that these new meds are killing some new spyros and I'm feeling the effects. It's good news to know it's working and fighting stuff, but it's crappy to be feeling so icky again. To try to combat this I'm increasing my dose of Dr. J's Neuro Anti-Neuro Tox Formula in the hopes that it will help keep me out of a severe herx cycle. We shall see. Anyway I guess it's like they say....one step forward, two steps back. But at least at that rate I'll get to where I wanna be, just a little slower than I'd like.

    Anyway you guys, I just wanted to say hi and tell you that I made it home safe and sound and that I'm thinking of you all, wishing you the best.

    Shanna
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    Old 12-08-2005, 11:26 AM   #247
    TeeDee
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    Re: PICC line people

    Hi Marsha,

    I think you got me mixed up with one of the others (Maureen maybe?) about the Christmas cards. I didn't send cards last year but emailed as many people as I could to tell them we wished them a merry Christmas but that I just wasn't feeling up to doing cards. I didn't even do that this year.

    I understand about the brain fog and get some encouragement that those of us in right around the same phase of this battle are so similar. I woke up real dizzy this morning with a terrible upset stomach and know a lot of that is due to the stress that my sister's going through. My other sister called and told me to try to put all of that in a place in my head that knows I can't do much other than tell them I care. Easier said than done.

    I'm going back to bed to read for a while and do some hard-core praying. That seems to be the one thing that really does calm me and praying for all of you gives me a feeling of taking the focus off myself and putting it on others who I really do care about.

    Please know that I especially pray that the pain some of you have gets better quickly. I don't have the aches & pains a lot of you have, mine are all pretty much stomach-related and don't usually bother me too much.

    Big hugs to all of you!

    Tronni

     
    Old 12-08-2005, 02:59 PM   #248
    Betterdaysforme
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    Re: PICC line people

    Dear Marsha,

    Ronnie is fine. I have to tell you that one of the first symptoms I had, 5 years ago , was numbness and tingling in my left hand and toes of my left foot. It is still there but now on both sides post steroids. Maybe the meds are stirring things up and you just don't know yet that you are getting better. We can hope can't we?

    Maureen


    Dear Tronni,

    I didn't get to write until now but am so sorry for your loss. Even if there were problems it is still so hard to accept for one so young. Being the holidays certainly doesn't help either. Pace yourself and only do what you can do. My prayers are with you.

    Maureen


    Dear Shanna,

    I am glad to hear that you are somewhat yucky again but glad you had a good time. I am on the C/Q protocol every 10 days and switch it to Biaxin/Plaquenil the next 10 days. They expected the C/Q to be the worst but I did okay. The B/P is what gets to me. I am on round 2 of it and then 10 more days of the C/Q and then I guess Dr. C will decide whether to keep it up or change. I should herx right around Christmas . My rear end is dragging but I will survive. I started my muscle/joint neuro tox from Dr. J on Monday and the pale spike/silphitrin yesterday but of course to early to tell if it's working. How long did it take you and which of the neuro tox formulas are you on? The girl at the nutraceutical branch felt I should use the muscle/joint because of my mobility problems. I guess she knows best. Hope things settle down for you soon.

    Maureen

     
    Old 12-08-2005, 03:06 PM   #249
    Roman77
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    Re: PICC line people

    Maureen ~ think I began noticing some changes after about a week or a week and a half of being on the wobenzye and neuro antitox formula. think it kind of snuck up on me though. one day i was feeling crappy and then a few days went by and I was like "what? i haven't taken my pain meds in 8 hours? you've got to be kidding me!!!" ....it's kind of hard to explain. b/c it's not all just about the pain, i think i finally felt like i was a little more alive, had a little more energy and my body just seemed to be better able to handle my symptoms. don't know if that makes senses. but keep me posted on how things go with you and the new stuff from dr. j. hope you'll be seeing some improvements too. i'm on just the basic formula b/c i have major stuff in all the areas and couldn't bring myself to just focus on one area at a time. so thought that just attacking it globally all the way around would be a good thing to try out. so far so good. now if i can just get back on top of this clinda/quinine combo with this formula it would be great. glad to hear that your new med combo is doing some stirring up...sorry that you'll be perhaps herxing at x-mas that sounds like not alot of fun....but at least a step in the right direction of getting healthy again.

    shanna
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    Old 12-09-2005, 03:17 PM   #250
    Betterdaysforme
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    Re: PICC line people

    Dear Shanna,

    Since cj brought up the poo thing I figured I would continue it.

    A day or 2 after starting the neuro tox I noticed mine had a green tinge to it. Maybe it's for Christmas. Anyway I know that when I took the detox stuff from the herballist it had chlorella in it too but didn't do this. I can't tell if it is just cleaning out some old stuff or if it is just the capsules since they are green. Have you noticed this? I'm hoping it is pulling stuff out of me and maybe all of it is what is helping to make me draggy as it goes thru my system?

    Maureen

     
    Old 12-10-2005, 08:02 AM   #251
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    Re: PICC line people

    maureen ~ green for xmas....very funny. thanks for the little chuckle. need it today as i am feeling super crappy (no pun intended) and am now taking an offical break from meds for a few days. are you back on yours yet or still taking a break? hope you are able to go back on them soon if not already on them.

    but about your question earlier i have to say that yes, i've noticed it too so i'm betting it's from the ingredients, although i know that after it was on it awhile it returned to a more normal color. so maybe it just takes our body awhile to adjust to it and start using all the ingredients correctly? just a thought. hope you have a great weekend.

    shanna
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    Old 12-11-2005, 01:47 PM   #252
    Betterdaysforme
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    Re: PICC line people

    Dear Shanna,

    Yes I am on my meds, day #8 of the B/P cycle. This is the one that gives me the most fits. One more cycle of the C/Q and we decide what to do from there. I had a herx when on it but it turned out to be the 4 week time period so not just the meds.

    Sorry to hear you are feeling puny but makes me realize that it isn't just me. It seems that all of us are.

    Maureen

     
    Old 12-11-2005, 09:17 PM   #253
    TeeDee
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    Re: PICC line people

    Dear Maureen and Shanna,

    Thanks to both of you for giving me something to chuckle about - even if it had to do with poo! I had a bit more diarrhea once again but it didn't entertain me with a color display. I seemed to have chased it off after taking an epsom salt/baking soda/peroxide detox bath. I'm beginning to feel better, less dizzy, a little more energy, not so blue. We have to go to that funeral tomorrow but I'll be happy to be with my sister, brother-in-law and parents for a few hours, albeit under very difficult circumstances.

    I've been giving this quite a lot of thought...do the rest of you think part of why we all seem to be having various upswings in symptoms might be because of being sick during the holidays? I've really had to work on keeping myself positive and not dwelling on all the things I USED to accomplish. Now I concentrate on what I can still do, if nothing more than calling people and giving them my love.

    Be well and stay strong. Everyone (in particular those of you on new meds), I'm keeping you in my thoughts and of course in my prayers.

    Tronni

    Last edited by TeeDee; 12-11-2005 at 09:18 PM.

     
    Old 12-12-2005, 03:00 PM   #254
    Betterdaysforme
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    Re: PICC line people

    Dear Tronni,

    I am not sure it is depression or anything like that that is making the symptoms worse. I am hoping it is the meds. I gave up a long time ago worrying about what I used to be able to do and now focus on what I am going to do when I am well. I love Christmas and used to decorate more than Santa and if I get well in July I may just get it all out and decorate anyway.

    Maureen

     
    Old 12-12-2005, 06:45 PM   #255
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    Re: PICC line people

    Just wanted to let you know I'm still hanging (by a thin thread, but it is holding) Its been a rough week. And I am just starting week 3. So many starts and stops its took me 10 weeks to get to this point. You've all been through this, so you understand. I'm having alot of vision problems, ringing, headaches, face and arm pins and needles, hip joint pain and just this last week my feet have been going pins and needles numb. I'm so tired of this.

    Back to Dr today. They are going to try meds M-T & T-F clinda and primaxin. Having to watch the liver functions and the C difficle. Both of these were major problems back in October. I am taking milk thistle and hope it helps.

    I have been keeping up with your posts just havn't felt like responding. You all are in my prayers.

    Marsha

     
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