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    Old 09-16-2005, 09:28 AM   #121
    TeeDee
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    Re: PICC line people

    Hi Everybody!

    I got back late Tues. night from flying to Cal. to see my LLMD. I'm still sort of in a fog even tho it's only an hour and a half flight and my daughter came along to help. We stayed with my niece who did a lot of the driving (a one-hour one to the doc from her house where we stayed).

    Now I'm blown away catching up with all of you. Romans, glad you're hanging in there and sorry things haven't improved. Derek, I about screamed when I read about you and your wife. I thank God every single day for the support I get from my family. That's why I know I have absolutely no right to complain about any of this. If I have to live with some stomach issues and a few other inconveniences, so be it. I care deeply about all of you who I think of as friends and pray that all of you get well.

    The doc is happy with my progress even tho I groused about my mobility and fatigue. He's going to up the Rocephin infusions to twice a day, five days a week but not for a while until the diarrhea is completely resolved. He's ordered the Glutathione in IV form. Are any of you using that disgusting nasal spray? YUCK! I'm also going to start giving myself Vit. B shots three times a week. Now that I think about it, I guess I did do my share of whining this trip! I told him my son wants me walking by Christmas and golfing next spring and he said okay, let's aim for that!

    Let's set up some goals for all of you, too. I insist on progress for all of us and I have this fantasy about getting together with all of you one day. My husband says it WILL happen, so everybody better get with the program.

    All my best wishes and prayers go out to all of you.

    Affectionately,
    TeeDee

     
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    Old 09-17-2005, 01:00 AM   #122
    Roman77
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    Re: PICC line people

    good to hear your "voice" teedee and very glad to hear your trip went well with some new hope and motivation from the appt. i bet you are glad to be back home...hopefully you are resting up. your news sure does sound encouraging. i ope your 2 x d infusions will do the trick and have you reaching your goal of better by x-mas.

    can i ask what the vit b shots are for and what is glutathione? they sound very familiar but can't place what they do. thanks for the refresher.

    also you wrote..."Let's set up some goals for all of you, too. I insist on progress for all of us and I have this fantasy about getting together with all of you one day. My husband says it WILL happen, so everybody better get with the program."

    ~ i very much like the idea of meeting someday...i always ay where there is a will, there is a way...so you never know it just may happent.

    as to the goals...i am glad you have one and i pray you reach yours, but i am gonna pass on that as my last 4 have come and gone and now i am just tring to focus ontoday and getting through it, enjoying it when i can, and letting my healing come in small forms...disappointment at my past goals of not being well by this past spring, then end of summer, and now fall has been a bit too painful for me to set a timeline ever again. baby steps now by marking down some small piece of progress every week...even if it's only i was out of bed for 5 minutes more than the week before. so that's my goal i guess....baby steps.

    hope you all have a wonderful weekend...

    shanna
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    Old 09-17-2005, 07:55 AM   #123
    TeeDee
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    Re: PICC line people

    Hi Shanna,

    It was wonderful to hear back from you. You're so right about setting small goals but I'm going to keep my fantasy about meeting you in person on my long-item list.

    As to your questions, the Vitamin B shots are something I was introduced to by a naturopath I used to see. They gave me a small "blast" of energy and I told the LLMD that I'd like to try them again. He gave me a shot at the appt. of a super-B concoction he favors and I got that kick immediately.

    The Glutathione is one he prescribed but it was in a nasal spray that's just icky tasting and smelling. I've read that it's much more effective in IV form and he agreed. It is going to be a challenge to work that in 3 days a week because the infusion takes quite a bit of time and has to be done at least 3 hours before and after the antibiotics. If you do an internet search it'll tell you about its antioxident, toxin-flushing and immune-building properties.

    I know how fortunate I am to be in a position to do all of this. If and when I do get fully functional again my husband and I have promised ourselves to help others in this battle. What goes around DOES come around.

    My prayers are always with you and if you get a 5-minute bit of progress, I'd love to hear about it.

    My best,

    Tronni (aka TeeDee)

     
    Old 09-17-2005, 03:22 PM   #124
    lymegirl
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    Re: PICC line people

    Hi Everyone

    Thanks for asking about me Romans. I have had a very bad week and was in the hospital for 4 days. Fri night had fever uncontrollable leg shaking and my body was like jello - couldn't even lift my hand. I rode it out and the next day called the nurse who comes in for the IV. She said since the reaction happened 2 hrs after infusion probally not the problem. Try again & see. Within min of IV on Sat I was shaking, so weak I couldn't move. When ambulance got me to the hospital temp was 105. At first they thought bacteria was on the heart valve and I had to have afew extra tests - luckily they were negative. They took out the PICC line and I'm on high dose of antibiotics which are making me very sick. I see the Dr on Mon and if she can't change the abx or lower the dose I might have to go into the hospital for a week of IV.

    I'm so disappointed because I saw some small changes in the 4 weeks, and my ins co had already approved the 3 mnths. When I get rid of this other bacteria I can go back to Lyme treatment. I'm already seeing my small gains reversing.

    It was interesting to hear what the Infectiopus disease Dr in the hospital had to say about Lyme. My Dr made a face when I told her I had planned to be on IV for 3 mnths. Her treatment for Lyme is 3 weeks on abx. The emerg rm Dr brought in a book to read to me about herx. He said couldn't possibly be a herx since they always happen within 24 hrs of starting treatment. When is the medical community going to open their eyes and ears!

    Just taking one day at a time.

    Kim

     
    Old 09-20-2005, 10:53 AM   #125
    Roman77
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    Re: PICC line people

    Kim...I'm sorry to hear babut how hard your past few weeks have been for you. It's not easy dealing with iv treatments when we're soo chronically sick. I can tell you that I get very weak, feverish, and am definitely herxing wihtin minutes of taking my iv's every single day. SO I would wager to bet that you were herxing frfom your iv meds as well. I sure hope you can get back on your iv soon, I'm sure it was very frustrating to have to quit when you were seein some small changes. I can sympathesize with you abou tthat.

    As for me folks...I am off of my primaxin for a week per dr. c's orders. I was herxing so badly this weekend that i was in the er for the pain and my heart problems. I think I would just check myself into teh hospital if I thought they culd do anythign for me other than put me in a loud, bright room where I would just wanna scream anwyaay. I hate being this sick. The past few days have been really rough, in bed in tears in pain....it feels like i have about 100 little terriers chewing at my bones and joints instead of their chew toys...sigh...but one day at a time and today is a little brighter i guess.

    Hope you are all ok. You're all in my prayers.
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    Old 09-20-2005, 12:37 PM   #126
    TeeDee
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    Re: PICC line people

    Shanna and Kim

    Just wanted to tell you both I'm thinking about you and sympathizing with all you're going through. I seem to still be in this "fog" after my trip to see the LLMD. I've been home for a week now and am getting a little impatient with feeling so sluggish but it could be something as simple as a change in the weather and coming to terms with fall being in the air.

    It's hard to know exactly what makes you feel good one day and really lousy another. I'm hoping all of us are going through a seasonal change that's caused a downswing. Hang tough and keep the faith. Hope everyone watching this thread has a major UPswing!

    TeeDee

     
    Old 09-25-2005, 07:16 AM   #127
    Roman77
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    Re: PICC line people

    hi all...am back on my primaxin after a week off from my herxes...had a bad epsiode on friday (see main baord post if you want) when i tried to go to my sisters wedding...yuck. anyway am feeling awful and hating taking this iv but amidst all this i just wanted to check on you all and swee where you are all at...think some of your iv time are almost up and wondering what next step is for you all and if you're still seeing good imporovements....roll call gang.

    especially wondering about lymegirl ~ saw you were in the hospital recently, how are you?....and also about sara....how's scool been for her? any more improvements? and lesley did you get your tests back yet?

    you are all in my prayers daily.

    shanna
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    Old 09-25-2005, 06:50 PM   #128
    Lesley1954
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    Re: PICC line people

    Hi Shanna and the rest of the PICC line people,
    I am so sorry that you have had another very challenging week and I pray that this week will bring some glimmer of hope and improvement for you.

    Sara just finished her 6th week of IV treatment (2nd week on Claforan) and seems to be showing definite signs of improvement (although I'm almost afraid to commit that to writing for fear it will disappear). She was in school all five days, participated in something afterschool everyday, and didn't seem to experience much payback for her extra activity. She even won a small part in the fall musical, one of the few freshman to do so. A good week for her indeed!

    Yesterday, though, she came down with a bad sore throat and stuffy nose. Seems like it's probably a cold or fall allergies (I'm having sinus pain which supports the fall allergy theory). She told me many times today how lousy she feels. But as she danced around the kitchen tonight, I said, "I know you feel bad today, but as I look at you right now, this "bad" is nothing like the 'bad' days you used to have." She agreed, all except for her visual disturbances, which she says have been worse than ever.

    Meanwhile, I'm still waiting for my Western Blot results. My doctor was out of town last week. I can just imagine them misfiled or sitting in a fax machine somewhere. But the Lyme Dot Assay on my urine was negative on all three samples. Good news, I guess, except if all tests are negative, it will leave me wondering whether and how to pursue the memory and cognitive declines I know I am experiencing. I certainly don't want to have Lyme, but that would be better than finding out I have early Alzheimer's. (I realize those aren't the only alternatives!)

    Shana, I feel silly even complaining about my memory next to what you have to endure each day. I truly hope there are some signs of improvement for you this week and thank you for always checking in on Sara. I know you're rooting for her!

    Lesley

     
    Old 09-25-2005, 08:20 PM   #129
    Roman77
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    Re: PICC line people

    yay sarah!!

    i am sooo happy for her and you as well. i completely understand not wnating to put it on paper so to speak, but i can not imagine how relieved and hopeful you must feel to see your daughter "returning" and dancing around like a normal kid again. brings a grin to my face just thinking of it! hearing her small and big steps in recovery give me hope that somewhere at the end of this road ill have something similar to post as well. so thanks for the boost! and for her to be awarded a part in the play while getting better...nothing short of amazing. i sure hope your good news continues with getting back your blood tests and having them be negative as well...know it will be hard to figure out what is causing your own issues but at least it won't be lymes. plese let us know what you hear when you hear...thx for the great update lesley and tell sarah congrats on the positive steps and her new acting career!

    shanna
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    Last edited by Roman77; 09-25-2005 at 08:22 PM.

     
    Old 09-26-2005, 05:53 AM   #130
    Betterdaysforme
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    Re: PICC line people

    Dear lesley,

    Too cool about sara. She must be in seventh heaven. Her freshman year may turn out okay after all. Just tell her don't overdue it.

    I picked up on the fact that you said you had some kind of sinus infection. That was the first thing that happened to me after returning from Maine and obviously being bitten and not knowing it. I was given amoxicillin and got better only to have major stress enter my life a few months later and the lyme reared its ugly head. If I am not mistaken there are a few others on here who had sinus problems to begin with. I know for sure takemylife was one of them. Keep an eye on how you feel and don't put all your faith in the test.

    Maureen

     
    Old 09-27-2005, 11:26 AM   #131
    Pearlscale
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    Re: PICC line people

    I have been reading this thread. I have had my picc line for 1 1/2 wk. Lyme 17 yrs ago, now know it was suppressed and also have Babesia. I see the same dr as GomezNC & Bothrops. I have a severe problem with Diarrhea. I do take many supplements including milk thistle and probotics. Started "d" after 4 days on rocephin. Added Flagll 4 days ago, Is the "D" herx or medication? Go to my dr on thursday and start clindamyacin and mepron then if all goes well. So many questions, & I know you guys have alot of the answers. TeeDee, any help on D. Shanna, hope you are feeling better. Derek, hang in there, I look at my Koi and feel the way you did looking at the salamander. Kim, how are you doing? Leslie hope you get answers soon and Sara becomes a STAR. All you others, I feel I know all of you after reading this thread. I have written your names down (as I would never remember them) and will keep you in my prayers. Marsha

     
    Old 09-27-2005, 11:56 AM   #132
    TeeDee
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    Re: PICC line people

    Hi Marsha. I'm way behind on catching up with everyone and have been intending to do that. I know how bad the "D" can be and I really believe that with perseverence I've mostly overcome it. I think the Florastor has been a huge help, as well as being super careful with diet...sugar is a real no-no for me. I'm just beginning my third month on IV Rocephin and figure I'll be on it for some time, figuring I was Lyme-infected as a child or teen (I'm turning 50 this year!)

    I'll get back to more updating later as I have a Dr. appt. today to try to figure out a way to make my walking easier, which I hope will help with fatigue and a bunch of other bothersome things.

    My best to all. You're always in my thoughts and prayers.

    Tronni

     
    Old 09-28-2005, 05:46 AM   #133
    Betterdaysforme
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    Re: PICC line people

    Dear Marsha,

    Isn't it a shame how much you have to go through to finally be diagnosed and treated properly? I am sure you have read that I was on the rocephin until my liver enzymes went crazy. I can honestly say that I didn't exactly have diarrhea but was very regular when on the rocephin. I don't know if that just meant I was clogged like takemylife says and was just eliminating what I was eating at the time or what. Maybe the diarrhea is a good thing because it is cleaning you out but definitely not fun. After coming off the acidophilus bio beads that I was taking I had what you could refer to as "exploding" diarrhea for about 3 days. I did this just a few days after stopping the meds and now know you need to continue to replace the good bacteria for at least a month when you stop abx. The health food store also gave me a package of pills that were a mix of peppermint and oregano and after about a week on these and the acidophilus I was back to normal. If you want to know the brand let me know. They were supposed to straighten out the intestines and did. Hope things get better soon.

    Maureen


    Dear Tronni,

    I was just sure you were up and running about. Didn't your leg problems get better until you had that night out or was it just the energy that came back? I am looking forward to seeing Dr. Crist on the 18th and finally putting an absolute for sure name on this. I am convinced it is lyme but need this peace of mind. Maybe my leg problems will be resolved too. I found it real interesting in the S. Buhner book that babesia impairs the legs and arms and must be treated first to resolve the lyme issues. I was tested through labcorp and it was negative for babs but who knows. I never had the sweats that people talk about just an overall feeling of being warmer and chalked this up to menopause since I am 57. I stopped taking the samento 6 days ago because I have to stop for 10 days anyway to see Dr. Crist and all of a sudden now I wake up during the night and the crease in my arm at the elbow joint and knees and face are damp. Not soaked but I have never been a peron to perspire even while playing soccer in 100 degree weather. Maybe the green caps, lymph drainage, detox caps, and enzymes are opening up blocked pores and releasing some stuff. If the doctor thinks I have babs and go on artemisinin (recommended in the book) or some other babs meds I will let you know how it goes. I hope your appointment goes well. I know romans and bothrops were feeding off your recovery. By the way can you believe how many hits and answers this thread has had? I am so glad I recommended it because all the new people on the picc-line have a place to go too.

    Maureen

     
    Old 09-28-2005, 08:08 AM   #134
    Pearlscale
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    Re: PICC line people

    Tronni, I pray your Dr. visit yesterday gave you some answers for your walking and all the other problems. I was told FM for 10+ yrs & MS for 3 yrs and then found out, I had been misdiagniosed (the drs would not believe I had lyme again and no way I still had it from 17 yrs ago when my lyme test (Elisha) now said neg.) We know how accurate lyme test are. Never in those 17 yrs was I ever tested for co-infections. Hang in there, we will get through this.

    Maureen, What was the brand of Peppermint & oregano? I've never heard of taking that. Regarding Bab, I have only once had the, "I know I am going to die" shakes, chills, nausea, aches in every spot at the same time. This spell was about 5 months ago, I had before it, spells of nausea. In the summer. I often have warm spells (where I have to change from to short sleeves to sleeveless and winter I just cant get warm). I think getting tested again is a good idea, although sometimes I wonder about the accuracy of all test. My western blot from IG in Cal. had so many inc. Anyone else have this problem, is it because of the Babesia?? Thanks for including me in the picc line group. I need all the strength I can get from all you guys, even though I have my familys support. Unless you've been there, you just cannot understand.

    Shanna, I do hope youre having a better day. You are due one.
    Marsha (age 53)

     
    Old 09-28-2005, 08:22 AM   #135
    Roman77
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    Re: PICC line people

    thx marsha for the well wishes and welcome to our little group...

    i too hope youre feeling a little better ....maybe maureens advice and teedee ideas will hellp you out as well. D is never fun especially added on to all that we already go through. in my case i think the D is part herx and part lack of good bacteria...i am trying to stay on top it with good priobotics but its a constant battle. it jsut weems like i cant beat the reoccuring y infections and thrush and the D...but im trying and thats all anyone can do. so i hope the oragne/oregano does the trick for you...any tool inour belt is a good one.

    as for me...ive been back off my primaxin. i was on it for 2 days and then broke out in the worst case of cold sores ever...they were all over my mouth, in my nose, and going down my throat, plus my mouth was full of canker sores and rashes. very painful. so dr c took me off the ivs and put me on acyclovir for 5 days to get the outbreak under control. i have never had more than 1 cold sore every so often and this was just palin scary. dr c just said my immunce system is so out of wahck and tired that it cant fight te normal sutff my body has in it usually...hence this crayz outbreak. so acouple of days off from the meds to let my body rest and heal and then i am hoping to be back on the primaxin in a few days. but for now am just laying low.

    alright all..take care...youre in my prayers.

    shanna
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