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    Old 09-28-2005, 09:27 AM   #136
    TeeDee
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    Re: PICC line people

    Hi everyone. I was going to get to work on filling out reams of insurance paperwork until I read the posts and realize I have to touch base with all of you as promised.

    First Maureen, as for my leg/foot problems, when I was in Cal. two and a half weeks ago, my ankle swelled and it came and went for a few days but I wasn't concerned until my older sister saw it and insisted I see my local doc about it. She thought it was neuropathy (common with Lyme and MS sufferers I found out) so I saw the doc and she said since there was no pain involved it probably wasn't neuropathy and since I had an appt. the next day to see an orthotic specialist about my curling toes on the same foot, maybe it was all related to my difficult walking gait and he could give me an answer. So I saw him yesterday and he had great ideas for getting those toes straightened out, thus improving my gait and giving me better ability to exercise and stretch to get my leg stronger. I do have to call Dr. Harris and will let him in on all of this. I also want to discuss the negative test results for co-infections and ask if he thinks I might need to go back on the Artemisinin. It's all just so mind-boggling and our weather, which has been glorious, is supposed to change to rain and I want to get as much outside time as I can until it starts.

    Marsha, I hope things are getting much better for you! Nobody deserves that awful "D" along with all the other stuff we have to endure.

    Shanna, I'm SO sorry to hear about your latest battle with the outbreaks. We're all keeping you in our prayers and want to hear about any progress.

    My fuzzy brain wants to rest so I'm going to take a break outside for a while. Hope we hear something from Derek, Gomez and Lymegirl and anyone else I've overlooked but certainly not forgotten, to find out how they're doing.

    Have a good and peaceful day.

    Tronni

     
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    Old 09-28-2005, 06:57 PM   #137
    lymegirl
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    Re: PICC line people

    Hi Everyone!

    I just thought I'd put in an update. I posted earlier about my problems w/ the IV and my hospital stay. Unfortunately they had to take out the PICC line and that infection has cleared up. Back to the Lyme....

    I'm on oral abx now and taking some supplements inc cats claw. I've been on this for a week and have some major tremors (feels like an electrical current) in my legs. I don't know if this is a herx or not? Anyway my most minor symptoms have improved. My jaw no longer feels like it's going to dislocate when I yawn and my legs are SLIGHTLY less stiff in the morning. I take this as a good sign although I am having a hard time walking and my energy level is sooo very low. I spend most of my day on the couch laying down. With these more significant symptoms unchanged (if not worse) I don't look to my family and friends to be improving but I am hopeful from small improvements larger ones will follow. What do they say about slow and steady wins the race......

    Patience and Perseverance are becoming my mantra.

    Hope everyone has a good week and looking forward to hearing all your updates.

     
    Old 09-29-2005, 06:11 AM   #138
    damz68
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    Re: PICC line people

    Hey TeeDee and everyone else,
    I am doing pretty much the same. I am trying to help myself more know. I quit smoking 4 days ago. I only smoked about 6-7 a day and dipped 4-5 times a day. I dip 3-4 times a day know. I am trying to eat healthier, that is hard to do when I am to exsausted to prepare a meal and the wife works so a lot of frozen meals are made. I am trying to reduce stress and depression, man that is hard to do. If anyone has tips please let me know. I am drinking more water and less sprite, adding lemmon or lyme.

    My symptoms are all still the same and my doc has been trying o find a abx combo that will cause a herx. It seems everytime I add flagyl I feel a little worse. She is looking for more than a little. My hands have looked much better in last year, no more red spots, cracking, peeling and blisters. My right thumbnail has had nail fungus for almost four years, it is starting to grow out. I think that is due to the flagyl.

    Still not sure how medicaid is going to go over, so far it looks like I am going to lose it withen the next three months. I am still waiting for word from lawyer about disability.

    I hope you are all doing good and showing improvement.

    Derek

     
    Old 09-29-2005, 06:23 AM   #139
    Betterdaysforme
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    Re: PICC line people

    Dear Marsha,

    I am sorry it took me until today to get back to you but we had a terrific storm come through last night and shut the computer down. We never got a drop from hurricane Rita here in the Dallas area so this rain was welcome. The temp here today is supposed to be a high of 79 and I thought maybe fall has finally come but the weatherman said last night that it will be 90 again on Sunday. It was 104 yesterday. Talk about global warming. Where the heck is fall?

    The stuff I took with the acidophilus is from Natural factors and is called Peppermint oil complex with oregano oil. It is formulated by a Dr. Michael Murray. It says it will aid normal intestinal and colon function. I took 1 20 minutes before meals and lowered it as I started to feel better (about a week) to just 1 before dinner. The only strange thing about it is if you have little burps you can "taste" it. Not bad just a strange combo. I hope it works for you, let me know. I actually now keep a box of it in case I have a problem.

    Maureen

     
    Old 09-29-2005, 06:45 AM   #140
    Betterdaysforme
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    Re: PICC line people

    Dear derek,

    I am glad you are trying to give up smoking and look forward to the day you say you don't smoke at all. I really don't think you should be drinking sprite at all. Way to much sugar. I seem to be only drinking water because I try to drink a certain amount each day and there doesn't seem to be room or enough time for anything else.

    I hope the medicaid continues. Let us know what happens with the disability. I haven't worked for years but to get some help we tried to file at the beginning of the year for me off of Ronnie's record and were denied but he talked to a friend the other day who just had 4 stints put in and is working with a lawyer and said we should too. We are thinking about it. I know it takes about a year but I don't think you have to do anything the lawyer does it all and then if they approve you have to split the first check which is retroactive from when you applied. They told me because I hadn't worked 5 of the last 10 years I didn't qualify but I think they tell everybody something like that. It really kind of ticks me off because I have a friend whose granddaughter has 3 kids,has never worked and is not married and is getting a 3 bedroom apartment with all utilities practically free and all the other stuff thrown in too like medical. Ronnie works all his life and I do some and we can't get anything. It just doesn't seem right. I hope yours comes through soon.

    GGB recommends yoga highly fort stress reduction. I have a tape and just watching it relaxes me. There are days too that I just shut off the tv for a while because sometimes it is so depressing. Do you have any hobbies you can do? I wish I could still cut wood and paint, it was so relaxing. Maybe after my trip to see Dr. Crist I will be able to get back to it. Try something different and maybe you will find an outlet.

    As far as the food thing, I cook a whole lot of chicken or beef and portion it out for meals in ziploc bags and then when dinner comes I just have to thaw it in the microwave and add some kind of sauce or pasta or something like that. I cooked 9 boneless skinless chicken breasts yesterday and tore the meat apart and will bag it up to freeze it today. I won't have to "cook" for another couple of weeks. This makes great hot chicken sandwiches w/gravy, or I can pour barbecue sauce over it, or sautee peppers and onions and then throw in the chicken for fajitas, or even just put it in a pie plate with cheese and spaghetti sauce and serve with spaghetti. It really makes for a quick meal.

    Maureen

     
    Old 09-30-2005, 10:29 AM   #141
    Pearlscale
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    Re: PICC line people

    Update: Saw my Dr yesterday, due to dehydration I'm on fluids for 3 days and off rocephin till Sunday. Then try every other day. Go back Friday. If I'm herxing its mild. She said yesterday, I've got a long road ahead. Between Lyme, Babesiosis, and mycolasma it will take time. She is thinking the rocephin is not going to work for the strain of lyme I have. Friends, I, too am getting sick and tired of being sick and tired. Keep me in your prayers. Couldn't even remember how to put my IV fluids in yesterday. Had to have my daughter come and do it for me. Marsha

     
    Old 10-01-2005, 07:10 AM   #142
    Roman77
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    Re: PICC line people

    Hi all....just wanted to say hi and touch base with everyone. I'm finally back on my primaxin iv after having to take almost 2 and 1/2 weeks off. Started back in yesterday so we'll see where i am in 2 days...hopefully it will go better this time round. Good news is that the acyclovir finally cleared up all the cold sores that my short 2 day "on" iv escapade brought on this past weekend, whew i can breathe again...that was just plain scary. But my poor face looks like its been through a rough battle. But at least it's behind me....now to start back in killing those keets.

    TeeDee ~ glad to hear you are making progress with the walking. are you doing excerises for your feet or stretches? but either way sounds like your doc is on top of things. i ope that you continue to make great strides in regaining your health...your story gives me great motivation every day.

    Derek ~ GOOD for YOU!! Stopping smoking is such a huge step and hard...I watched my mom struggle for 15 years to quit, but she finally did it and hasn't smoked for about 10 years now. You can do it and you will feel so much better from your choice! Anything you can do to help your ody recover from this lyme is s tep in the right direction...congrats! It also sounds like you are seeing some little improvements...with your hands and nails....every little bit will give you a little more hope...I sure pray they keep on coming you way.

    Marsha ~ sorry to hear about your rough week. ive been there in your situation a lot, and most of my rounds of antibiotics ive ended up having to pulse due to herxes and such so i sympathasize. theres nothing worse than being sick and wanting to be better now, but having to take the meds slowly b/c the body can't handle any more than just a little at a time. but i can tell you that we will get better eventually...but like my doc says "we didn't get sick in a day, so it's going to take some time to get well"...i'll say an extra prayer or two for you. we'll get there together!

    lymegirl ~ how are the new oral antibiotics doing for you? how are you doing having had to stop the ivs and switch....betcha that's a hard adjustment to make. kind of like a step back....but no fear the orals can help too. in fact my llmd actually prefers trying to treat with orals first then iv...he thinks there is better recovery that way. he's working on trying to assemble some evidence to back uup this theory. so maybe this will help you take some more little steps forward.

    lesley ~ hope sara is still improving. has she had rehersals for her part in the play yet? oh and any word yet on your own tests?

    well try to have a good weekend all...as always youre all in my prayers...rest well and keep up the hope.

    shanna
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    Last edited by Roman77; 10-01-2005 at 07:12 AM.

     
    Old 10-01-2005, 04:21 PM   #143
    Pearlscale
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    Re: PICC line people

    Thanks Shanna, Today has been a pretty bad one. Between chills, aches and "D" not to mention head problems worse, I needed that. Marsha

     
    Old 10-02-2005, 07:41 AM   #144
    Roman77
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    Re: PICC line people

    hang in there marsha....we're here for you in spirit. hope the symptoms will take a hike for a few hours to give you some time to regroup and sleep so you can recharge a little. keep fighting...we'll all win the battle eventually.

    shanna
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    Old 10-02-2005, 03:49 PM   #145
    Lesley1954
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    Re: PICC line people

    Hi PICC line people,
    It's been an up and down week for us. Last week-end, Sara seemed to be coming down with a cold. By Monday, it seemed clearly to be a herx with terrible head and chest pain. She seemed pretty good shape by Thurs night. Unfortunately, she missed all the play practices last week Now this week-end, she seems to be developing an allergic reaction to the Claforan. Last three doses, she's complained of chest pain, difficulty breathing, tickle in her throat, and tearing eyes. It's gotten worse each time, which is why it's taken up 3 times to finally "get it." Home health nurse said to stop the IVs and call the doctor first thing in the morning. So, I'll keep you posted on that.

    My Western Blot IgM was negative, but the IgG was indeterminate. According to the 2005 Burrascano guidelines, however, it would be positive -- because I had positives on 41 and 18. I had lots of indeterminants on other bands. I have an appt on Nov 20 with a local LLMD. I also made at appt at the Lyme Evaluation program at Columbia Univ in December for neuropsych testing. I don't know if I should try (or even can) do anything before that. My symptoms are primarily neurological (memory, cognitive, restless legs, insomnia). I have some joint pain, especially knees. But mostly I feel pretty good most of the time, so it's hard to shift attention away from Sara to myself.

    Shana and Marsha, I hope this week brings some improvement and hope for both of you. To Tee Dee and everyone else, hope you're doing well and look forward to hearing from you all sometime soon.

    Lesley

     
    Old 10-03-2005, 04:48 PM   #146
    Roman77
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    Re: PICC line people

    hope sara is fairing better today. did the dr have any idea what's going on? i sure hope that this is just a short herx for her and she'll be baack to feeling stronger soon. keep plusggin away you two....youre both are in my prayers.

    shanna
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    Old 10-03-2005, 08:47 PM   #147
    TeeDee
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    Re: PICC line people

    Hi everyone! I just checked my emails for the third time in about a week...have been extremely tied up with various things. Tomorrow I've set aside some time expressly for catching up with all of you. You're always in my thoughts and, of course, in my prayers. I'll send my update tomorrow.

    Fondly,
    Tronni

     
    Old 10-04-2005, 06:48 PM   #148
    lymegirl
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    Re: PICC line people

    Hi All

    Thanks for asking about me Shanna

    I do feel like it's a step back to go from IV to orals, but I'd be afraid to try IV again considering the problem I had, and the 4 days hospital stay. After two weeks on I have herxing going on in my legs (where my worst symptoms are) so I guess this is a good sign. I'm fairly new to this so I'm not definite it's herxing or I just feel worse than I felt the day before. Sometimes I can't remember how I felt the day before, just know it wasn't good. It's all running together. I have to start up with my journal again. Can't remember a thing! I'm pretty sure it's herx though because these leg pains are fierce like an electrical current that comes every few minutes. My LLMD said you are going to get worse before you get better. She was right about that.

    It's been nice chatting with you all but since I'm a former PICC line person I won't be posting on this thread anymore. I will continue on the board so I will keep up to date with all of you.

    Hope you all make huge strides with your IVs.
    Best Wishes for all our good health in the near future!
    Kim

     
    Old 10-05-2005, 02:57 PM   #149
    TeeDee
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    Re: PICC line people

    Here I am, following up at last. I realized this morning that I am getting better since being on ABX because all of a sudden my family and friends are seeing a difference and making me get up and around more. My social life has picked up and I'm pretty tired!

    I'm still fighting fatigue but last week began giving myself Vit. B shots and now that's beginning to make a difference. Today I did my first Glutathione infusion through the PICC line and that went well. I'm very happy to not be using the nasal spray any more (yuck) but since I ran out two weeks ago and knew I was switching over to infusing it, I realize that being off it for two weeks might have caused problems in itself. I've been a little dizzier than usual and my balance is terrible. So I'll keep everyone posted about how I feel doing the Glut infusions 3x a week.

    I've been going over the posts from the last few weeks and was sorry to read about negatives that any of you have endured. Once again, I thank God for this group, and keep all of you in my prayers. I just could hardly stand things at times not having a place to vent with people who understand.

    My next hurdle is going to be seeing an orthotic specialist a second time to be fitted for some devices that we hope will help train my toes to uncurl in order to make walking easier. I saw my physical therapist this morning and she's still very happy with my progress. I have to keep reminding myself to be a bit more patient, but since the LLMD said he thinks I'm going to see good progress in the next few months, I can't help but be so ready for that.

    I'll keep getting back to the board and send my best wishes to all of you.

    Sincerely,

    Tronni

     
    Old 10-05-2005, 04:20 PM   #150
    outinthe_woods
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    Re: PICC line people

    Hi, Tronni! I would only say "keep the faith and welcome each new treatment enthusiastically, whether it works right away or not"....Attitude has a great deal to do with healing and persistence with finding what's right FOR YOU will get you better!

    Gerri

     
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