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    Old 08-31-2005, 08:34 AM   #76
    Lesley1954
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    Re: PICC line people

    Thanks, TeeDee. So glad to hear the Herx was relatively brief. How long did it last? I know you expressed some reluctance about using the word Herx. Are you back to where you were before it happened?

    Romans, I too am sorry about the news about your insurance coverage. Did it come from someone with your insurance company or from the home health agency? Like you, Sara's current prescription is for 6 weeks of IV Rocephin, although the doctor said we would reevaluate the continued need for IV meds at that point. The person at the home health agency who deals with insurance was able to tell me that our insurance plan has been very good about covering long-term abx. I wonder if someone at your home health agency could give you more information about how your insurance plan customarily handles long-term treatment if the doctor requests it. I hope the news is good.

    Lesley

    Last edited by Lesley1954; 08-31-2005 at 08:36 AM.

     
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    Old 08-31-2005, 08:46 AM   #77
    TeeDee
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    Angry Re: PICC line people

    Honestly, Lesley, I'd have to say that the Herx lasted just under 24 hours. I searched for more information about Herxes and didn't really find a definitive rundown on what to expect, although I know I've seen that sort of thing. When I started feeling good again I decided to catch up on some more housework but I am going to do more research on Herxes.

    Tonight I'm going to take a serious detox bath and flush out more of those nasty critters!

    TeeDee

    Last edited by TeeDee; 08-31-2005 at 08:47 AM.

     
    Old 08-31-2005, 08:49 AM   #78
    Roman77
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    Re: PICC line people

    Just a quick clarification that I figured out this morning....my rx was only for 6 weeks so obvioulsy it's done and then my doc will renew it when I see him next week in MO. (oh and lesley it's not about my insurance though - they've been great, it's just my rx) I know I have nothing to be paranoid about, I'm sure he'll keep it going. It's the only thing that's started to help. So why would he stop it? He wouldn't....It just makes sense. Sorry to be so chicken little you guys.
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    Old 08-31-2005, 10:08 AM   #79
    TeeDee
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    Re: PICC line people

    You're not chicken...this is a very trying disease and I think you're dealing with it really well. You've had some tough times and remain positive so please give yourself a pat on the back and have a wonderful day!

    TeeDee

     
    Old 08-31-2005, 11:36 AM   #80
    sickandconfused
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    Re: PICC line people

    I am sorry if I asked this before, but I forgot if I did...... How did you all make the decision to go on IV and do the PICC as opposed to doing oral antibiotics?? To me, IV seems much safer, aside from the risks of infection from the PICC, since it goes directly into your blood, as opposed to the oral. I am nervous I will have to do the oral and I am sooooooooo sensitive to antibiotics. Even the smallest dose of antibiotics taken once or twice makes me sick to my stomach, even with taken lots of probiotics. My dr used to get sick of my complaining about abx and tell me that some people are just super sensitive to them! ;-(

    Thanks,
    Nancy

     
    Old 08-31-2005, 12:42 PM   #81
    Lesley1954
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    Re: PICC line people

    The internist who diagnosed my daughter's Lyme disease made the decision to use IV Rocephin based on her neurological symptoms. After consulting with Dr. Charles Ray Jones, a well-known pediatric Lyme specialist, he added two oral meds -- Zithromax and Plaquenil. She is also taking Actigal to help prevent formation of gall stones and Diflucan because she appeared to be getting a yeast infection from the antibiotics. She also takes probiotics, milk thistle, magnesium, and B12. There are other things I wish she would take, but for the moment we have reached the limit of what she is willing to swallow. Compared to getting her oral meds in her at the right time (i.e. empty stomach vs. with food and proper spacing between abx and probiotics), giving the IV is a breeze.
    Lesley

     
    Old 08-31-2005, 03:38 PM   #82
    Roman77
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    Re: PICC line people

    SickandConfused ~ Like Lesley's daughter sara, my dr put me on IV b/c of increasing neurological issues plus the fact I continued to get sicker despite the oral antibioitics I was taking. My CNS Lyme is so far advanced that I pretty much herx every day and when I was on orals I had an extremely hard time taking more than a sliver of a tab even a few days apart. My herxes were just so extreme and painful no matter what I tried. So last ditch effort has been this IV. I definitely wish I could take the orals and get better, but that was not possible. I understand your issues with the nausea and gut stuff, but truly I hope orals work for you...I would trade ya in a heartbeat.

    Lesley ~ I soooo sympathize with Sara on taking all the pills. Like her I take about 35-45 pills a day. Like you said about her I also wish I would take more, but there are just so many right now that I can't stand the thought of adding more. What with the pain meds, lexapro for my lyme caused depression, plus vitamins, minerals, primrose and fish oils, melatonin for sleep issues, perscribed amino acids for my neuro issues, proibiotics, nystatin (for the yeast), and also actigall as well as milk thistle for my liver too. Some days I wanna go on strike from all the pills...but I feel so much worse when I don't take all of them so I force it all down throughout the day. Lesley...Sara is such a trooper. Please tell her I said hi and good luck with her first days of school. I remember how hard it was for me the first time I went through all this at her age. I had Lymes back when I was just 14. Unfortunatley I missed all of my 9th and 10th grade years and had IV treatments for most of that time. I was so ill I had to have a tutor. So I am very happy that she is okay enough to still go to school despite how yucky and awful she feels. Like I said what a trooper. I am so glad she has you to help her through this.

    Off to eat some supper all....have a good evening.
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    Old 09-04-2005, 07:46 AM   #83
    Roman77
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    Re: PICC line people

    Just wanted to see how you all are doing this weekend...I'm having a hard time with my heart. Thinking of going to urgent care. Posted on the main board b/c of it in hopes some of the gang may have some ideas about it, probably am just herxing in a new form so I'll ride it out. Lesley, Sara has heart issues doesn't she due to lyme? What are hers all about, I know you mentioned palpatations but is there more to it as well?

    TeeDee ~ still feeling better and better? I sure hope you are and are out enjoying some fun time living and making up for lost time! Let us know what's up if you get a chance.

    Lesley ~ How is Sara doing? Does she start school tomorow or did she start last week? If she already started I hope she is feeling a little better and starting to feel like a kid again. Oh and how was her check up on Thurs? Any new develpments? Also when I was rereading over all our posts on this thread saw that you sent in your own Lyme test...any news on that, has it come back yet? Sure hope it will be negative. Let us know if you can.

    Bothrops ~ how are you these days? are you finally feeling any improvements?

    Hope to hear from you all soon, you're all in my prayers.
    __________________
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    Old 09-04-2005, 08:55 AM   #84
    TeeDee
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    Re: PICC line people

    Hi Romans,

    Thanks for the nice post and for your caring about all of us. I really hope this heart thing is simply a Herx and when it's over, you'll be back on the road to recovery. You certainly deserve some relief and we're all praying for that!

    As for me, after this last Herx (if that's what was happening) I'm feeling pretty good but that dang diarrhea is back and seems to be hanging on. My balance and walking are still off, but they're not unmanageable. My LLMD called the other night and said my liver enzymes are slightly elevated so he told me to double my milk thistle dosage and to quit taking Samento and Ketek. My next blood draw is tomorrow and hopefully things will be back on par.

    I'm getting excited to get to Cal. to see him on the 12th. I have lots of questions to ask and I'll let everyone know what comes of that. My daughter and I are going to spend a night with my niece and her family and she has a pooj that we're going to lounge in the day after the Dr. visit.

    I got a new PICC line protective glove that really keeps things dry in the shower. I bought a packet of ten gloves and would be happy to send one to any of you who can use it (they were surprisingly inexpensive), but the problem is, you'll have to buy some Velcro to secure it because the order came with only one set of security bands. If anyone's interested, I'll make copies of the instructions that came with them and it'd be simple to come up with ways to secure it. What I really like about them is the glove is real thin plastic and has fingers so washing the hair is much easier. Everyone let me know if you're interested and we'll go from there as far as getting your address for sending one.

    My best to all and have a safe and happy Labor Day. I know we're all praying for the Katrina victims and our prayers are being heard.

    Sincerely,

    TeeDee

    Last edited by TeeDee; 09-04-2005 at 08:57 AM.

     
    Old 09-04-2005, 04:27 PM   #85
    Lesley1954
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    Re: PICC line people

    Hi Romans,
    I'm sorry to hear about the heart pain and palpitations. I agree with the others who recommended getting seen today, as unpleasant as that may be. I hope you were able to reach someone in Dr. Crist's office.

    You asked about Sara's heart issues. She was diagnosed in Jan with POTS, Postural Orthostatic Tachycardia Syndrome. You may be familiar with it. It falls under the general category of dysautonomias and more specifically, orthostatic intolerance. Although it is often diagnosed through a tilt table test, in her case they did the "poor man's tilt test" where she stood quietly for 10 minutes while they continuously monitored her blood pressure. Her blood pressure dropped a bit (at that time it was running about 80/50 normally) and her heart rate increased from 70 to 129 in the 10 minutes of standing still. She feels the tachycardia and finds it unpleasant, sometimes describing it as a fluttering or a feeling like her heart flipped over. But she seems able to control it by sitting or laying down and it has become less of a problem over the past six months, perhaps because her blood pressure has risen somewhat. She takes salt capsules to increase her blood volume and raise her blood pressure. She's also put on about 10 pounds, which probably helped raise her bp a bit. There was a time her doctor was talking about giving her medication to raise her bp and another medication to control the tachycardia, which sounded like such a drag for a 13/14 year old girl. It wasn't too long after that the Lyme diagnosis came back, so her doctor is hoping abx treatment will eventually resolve her POTS issues.

    She starts her 4th week of treatment tomorrow. No dramatic improvements, other than she is no longer having chills all the time. This is a big quality of life improvement for my husband and I, who had a hard time driving around in 85 degree weather with the heater on! A few hours ago she complained about feeling really bad -- headache, sore throat, sinus pain, and hip pain. I thought, "Here it comes, the four week herx... just in time for the beginning of high school." Then, lo and behold, her latest "crush" called to see if she could go bowling and she was up here telling me about her miraculous recovery, no doubt due to the ibuprofen I gave her. It wasn't easy, but I said no to bowling, especially given her hip pain and the fact that her PICC line is in her right arm. Now, she's talking about a movie and I'll probably give in. I know she truly feels bad, but as you know, being with a special someone can lift your spirits and make you feel better.

    Her check up was basically fine. Doctor says he expects she will need a minimum of 6-12 weeks of IV Rocephin so it is good he's thinking beyond 6 weeks. He is not an LLMD, but at our request he has consulted with Dr. Jones and another LLMD in our area (who we will be seeing in mid-Sept). We also have an appointment to see Dr. Jones in Dec. Her doctor is an internist who has focused on CFS and FM and after his experience with Sara is clearly interested in seeing whether Lyme may be an issue for other of his patients. When the diagnosis was made, he was willing to start her on IV treatment right away and it seemed like the best way to go. There are not many LLMD's in our area who see children and the waiting lists are long. But there are things he doesn't know, like how to interpret some HLA genetic factor tests Dr. Jones wanted him to have run. She had several positive findings, but he didn't know how to interpret them. I asked him to consult with Dr. Jones about it. I guess it has to do with a predisposition to developing autoimmune disease as a result of Lyme. If there's anyone that knows more about this, I'm very interested. I think the factors they were testing for are HLA-DR2 and DR4, except those weren't the numbers listed as positive on the lab report. Also found out that he had ordered the wrong coinfections panel from Igenex. The one he ordered only tested for Erlichiosa, so we still need to test for Babs and Bartonella. Since her appt was Thur, it was too late in the week to do an Igenex test.

    And you asked about me. Yes, I had my blood drawn for an Igenex WB two weeks ago tomorrow. I asked my family practice doctor to order it based on the fact that I was bitten the same time as Sara and had been complaining to her about problems with short term memory and cognitive decline. I suspect I'll hear from her this week. (Gulp!) I don't know what I hope the result will be. My father died of Alzheimer's last spring and until Sara was diagnosed with Lyme, I feared I was seeing the early signs of Alzheimers. I also know a negative test doesn't necessarily mean I don't have Lyme. It's hard to think about potentially shifting my focus from her treatment to my own; at the same time, I don't want to regret not acting a couple more years down the road. I'll keep you posted.

    I truly hope this post finds you feeling better and I will certainly be thinking of you on Wednesday when you go to MO. You are very sweet to worry about the rest of us with so much going on in your life. Take care,
    Lesley

     
    Old 09-04-2005, 07:39 PM   #86
    lymegirl
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    Re: PICC line people

    Hi All

    I'm new to the boards but since I have an IV thought I'd check this thread out. Reading your posts have given me alot of info.

    I need a better solution for the shower. I tried the saran wrap (although it was not the press n seal type) and lately I've been using a zip lock bag w/
    bottom cut out and slid over arm w/rubber bands at top & bottom. Some water does get in so I need to try something else.

    I'm on IV Rocephin and my Dr just told me to add cats claw. I saw someone posted that they stopped taking that and I'm wondering why? My Dr didn't tell me about milk thistle but I've heard about it. Does anyone reccomend it and how about with cats claw?

    I've been on the IV since 8/15 and I'm waiting for something to happen, good or herx. Sometimes I wonder if this is working. In the last several days my rt leg has been getting strong throbbing almost like contractions. I've had this before but this is sooo much stronger. In the past if I was walking I might have to pause for a second, now when it starts I actually have to hang on to something until it passes. Since it can happen every few minutes I must look pretty funny walking down the street and grabbing trees, cars, lampposts and hanging on!! Does anyone get anything like this?

    I don't know if this is a herx or not but since this afternoon it feels like it's subsiding some. I have lots of other symptoms almost all neuro. My Dr says I probally had this along time. Was dx w/ another disease 6 yrs ago and only recently tested & treated for Lyme.

    I'm sorry to hear what everyone else is going through. I hope Romans feels better very soon. I know it stinks but doesn't the herxing mean the meds are working?

     
    Old 09-05-2005, 08:47 AM   #87
    Roman77
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    Re: PICC line people

    Hi Lymegirl...glad to see you found this board and our thread. This place is such a wonderful place of support and info! You have a lot of questions and I'll answer some of them now, and maybe others can fill you in on more later.

    I take milk thistle everyday, it is supposed to help cleanse your liver and kidneys...something very important while on IV meds. I feel that it really helps me out and has kept my liver enzyems in check during my IV course.

    I think teedee has found something great for her picc line, I have a hickman line in my chest so I can't offer you any good advice for your arm IV. But I do sympathazie with your frustration...wish I had something dependable to try for mine as well. Maybe some of the others will have some good ideas for you to try.

    Don't know what to tell ya about herxes, maybe what you described could be...herxes are so different for veryone. Most have patterns of 3 - 4 weeks and then herxing, mine are pretty much constant. As long as I am on antibiotics I feel much much worse and have new symptoms, these only fade and lessen when I take a break from treatment. But I've had CNS lyme for a long time. But if you are herxig that's a good sign, it is hard to get through but at least it means the syprochetes are dying.

    Keep posting and am sorry you have to be here but glad you found us.
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    Old 09-05-2005, 01:23 PM   #88
    Lesley1954
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    Re: PICC line people

    Welcome Lymegirl,
    I wish I had more to offer in terms of your questions, but I'm pretty much a newbie here myself. My 14-year-old daughter is starting her 4th week of treatment.

    She does take milk thistle, thanks to advice from others on this board. A woman at the health food store recently recommended an extended release 500 mg tablet made by Nature's Plus. I bought it primarily because it is only taken once a day. I had been giving Sara a 175 mg capsule twice a day. At this point, anything that reduces the number of pills she takes a day is very important to her. I'd be interested to know if anyone thinks that dosage is too high.

    As far as showers, her home health nurse recommended taking the bag our newspaper comes in (The Washington Post delivers its paper in high quality plastic bags and the paper usually does stay dry even when it's raining; also great for picking up dog poop!) Anyway, Sara makes an opening in the other end and secures both with a scrunchie hair thing. After reading about Tee Dee's velcro strips, I bought a package today and will see what I can fashion out of that. It's working pretty well, but not perfectly. Hair washing is the hardest so we (read me) has been doing that at the sink.

    During Sara's second week, she had lots of twitches in her legs, which I attributed to a herx reaction. She was also feeling really badly. What you're experiencing sounds more intense than her twitches, but in my very uneducated opinion, it certainly seems possible that it's a herx.

    Best wishes to you and I look forward to talking to you here.
    Lesley

     
    Old 09-06-2005, 02:40 AM   #89
    Lesley1954
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    Re: PICC line people

    Thank you, Tee Dee. That is very sweet of you. I actually think we have an arm glove. Is it a relatively thin, transparent plastic glove with fingers that extends up to the shoulder? My mother gave me two left from her carpal tunnel surgery. The first time Sara used it, secured with a scrunchie on top, the finger tips had quite a bit of water in them when she was done and her PICC site had gotten a little wet so I have not really encouraged her to use it again. That was the only time she has washed her hair herself since the insertion. I really don't mind washing her hair for her and she doesn't seem to mind (except when I accidentally spray her in the face or ear!) Kind of like "playing beauty shop." She seems able to manage everything else and keep her site dry with the newspaper bags and scrunchies. Thank you again. Lesley

     
    Old 09-06-2005, 08:26 AM   #90
    TeeDee
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    Re: PICC line people

    Sounds like the same thing. She's very lucky to have her mom to play beauty shop with. It took quite a bit of training to teach my husband to do a fair job washing my hair but I'm liking the fact that I can do it on my own now.

    Hope school is going well for her and that she gets well very soon.

    TeeDee

     
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