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    Old 12-12-2005, 07:16 PM   #256
    Roman77
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    Re: PICC line people

    You're in mine as well Marsha. I hope that the new treatment regimen will help lessen some of the severity of your symptoms. I feel for you. We are all troopers to get through the rough spots and I promise you that you will get through this at some point...I just pray that you get a break from the pain soon, it sounds like you desperately need one. I just have one thing to ask you. What are you doing for detox? Besides the milk thistle? Anything? I know that I was hurting as bad as you a month or so ago and started taking Wobenzyme and an Anti Neurotox Formula and I can say that that has helped so much. Maybe that might be something you could ask your doc about or try out if you're not already doing something similar? Just a thought. Hang in there Marsha. Hugs.

    Shanna
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    Old 12-12-2005, 07:27 PM   #257
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    Re: PICC line people

    Shanna
    Thanks for the encouragement. I remember when I first came to the boards, you were the one having the struggle. Last I read, you were seeing some improvement????

    I use questran powder that binds the toxins so that the bowels can get them out and not let them be reabsorbed. Then I do the detox bath, peroxide and sea salt. I havn't added soda yet.

    I also have some of the toxin remover footpads. When I put them on the bottoms of my feet at night they are clear, the next morning they are black and smell like metal. I don't know if they really help, but I thought why not.

    I also take diamox which reduces the fluid from the toxins in the brain.

    I haven't ever tried the wobenzyme. Where do you get it.
    Thanks again, Marsha

    Last edited by Pearlscale; 12-13-2005 at 11:42 AM.

     
    Old 12-12-2005, 08:30 PM   #258
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    Re: PICC line people

    Dear Maureen,
    What a great idea! I think that when I feel well again I'm going to redo the holidays myself. I do admit that I've been feeling sad about having to get someone to help me or just do all the things I used to love to do myself. And you're right, the meds could very well be the culprits rather than depression. I'm happy that you're able to maintain your good outlook!

    Dear Marsha,
    I'm glad you're hanging in there, too. I went back over some of my notes and when I'd been on milk thistle for about a month it did help. I also noted that I felt a little better also after a few weeks of taking oil of oregano. I'm staying on the probiotics religiously and since I've been giving myself B-12 shots every three days, that's given me a bit more energy. I think we're all taking so many things it gets hard to know what helps and most things take some time to work.

    I need to tell everyone who reads this that I'm so sorry I've been on a downer and truly hope I didn't pass it on to anyone else. Time to pick myself up by the bootstraps and get on with it.

    My best to all,
    Tronni

     
    Old 12-13-2005, 11:40 AM   #259
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    Re: PICC line people

    Tronni
    Today went from really really bad to really bad which is a step up. One step closer to good.

    I haven't tried the oil of oregano. I do take alot of probotics and the milk thistle. I think those are the main 2 that have helped. I am increasing my iv an extra day this week, we'll see how that goes.

    I think It's time for a limb throwing party. Want to meet me at the tree. Everyone is welcome. Lyme does seem to cause us to be depressed, angry, lets go get rid of some of the anger.

    Derek, hows your picc site doing. Better?????

    Maureen, hang in there, I think Christmas in July is a good idea. If we can't have it in December because of some big bad herx, we can have it anytime we want. We don't know for sure when Jesus was born.

    Prayers to all. .............Marsha

    Last edited by Pearlscale; 12-13-2005 at 11:45 AM.

     
    Old 12-13-2005, 04:25 PM   #260
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    Re: PICC line people

    Marsha...

    glad to hear that today was a bit better. must be encouraging for you to see even if it's just a little. and yeah i'm still seeing some improvement, but it's slow going. but on average i'm out of bed, taking it easy more than in it so that's a great step. have slowed a bit now that i've switched meds to the clinda/quinine combo. am herxing badly almost immediately upon starting them up again after a break. so it's definitely stirring up new stuff. guess it just means i still have quite a ways to go, which i knew anyway. sigh. anyway about the wobenzyme, i get it from dr. jernigans (author of "how to beat lyme disease using god designed living") along with the anti neuro tox formula he recommends. the wobenzyme though i think you can get from lots of different places on the net. just make sure it's enteric coated so it survives the stomach acid. also just wanted to add that the wobenzyme is an anti-inflammatory and an immune booster as well as helping antibiotics penetrate over 40% more effectivetly in your body. i don't know how much of a detox they are though, that's why i take the other formula. if you decide to try them, i sure hope they help you like they seem to have helped me. every little bit helps.

    hope tomorrow finds you feeling a little better as well. take care.

    shanna
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    Old 12-13-2005, 09:20 PM   #261
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    Re: PICC line people

    Hi Marsha,

    So glad you had a bit of improvement today. I was up early and almost thought I was going to stay up when I realized I was cold and had a headache so went back to bed and read for a while. When I got back up I got dressed, put on a little makeup (!), combed my hair and went to the store (Fred Meyer). It was a zoo but I saw a couple I hadn't seen for a long time and they told me I looked better than I had when they saw me at the beginning of summer. Boy, what a little blush can do!

    So I was inspired to make it a good day and decided to have a detox foot-bath. My husband was at work and I'd promised to not take a bath without someone else being here so I threw a handful of epsom salt, a cup of baking soda and about a cup of peroxide in a bucket and soaked my feet in hot water for about 20 minutes. Guess what, it gave me a small boost of energy and I'm going to do some researching and go for a good foot soak every day. I'll let you all know how that goes. I've been a little hesitant to take too many real baths because I used to get yeast infections from that when I was just a teen. Maybe this is a good idea for lots of us!

    You keep getting better, Marsha, and same goes for you, Shanna. It does wonders for me to hear about you two getting any relief whatsoever. And Derek, how is that PICC site? My visiting nurse told me yesterday that I might want to try using baby oil to get some of the black gunk from the tape off my arm and I told her I couldn't care less how my arm looked, especially now that winter's here. Hope you're doing well, too. Same to everyone else.

    Blessings to all,

    :-) Tronni

     
    Old 12-14-2005, 07:58 PM   #262
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    Re: PICC line people

    Tronni,
    Noticed the time of the post. I'm not the only one who has problems sleeping at night, Am I?

    I liked the foot bath idea. I'll have to try that. I have to remember to get the baking soda first. If I write it on a list, I have to remember to take the list. My memory is not good.

    We are getting ready for an ice storm tonight. (NC) I am so ready for it to warm up. And it is only December.

    I made it to Church tonight. (Awana's Kids Program) I havn't been in several months to help on Wed night. That I made it tonight, I am so grateful. A good day once in a while makes the bad ones more bearable.

    I hope going out didn't cause you a set back. You have had a rough time of it. We all have. Shanna too. Haven't heard from Derek lately either. LOL. Maureen...LOL..

    I noticed the black on my bandage earlier this week. I'm with you. Long sleeves cover it. Maybe by spring we won't need the picc and can get rid of the whole mess.
    What meds are you on now and what week. How much longer, did your dr give you any indication. I pinned Dr Jemsek down to 6mo IV and 1 1/2 oral. MAYBE

    I've got to tell you about my sister in law. Maybe no big deal, but to me. IT WAS.
    My husband had a bad head cold at Thanksgiving and I was dealing with my first major herx. We did not make it to the Larrys family get together at her house. She sent out an E mail letter to all of his relatives saying we were both sick with a cold. She knew the situation, but chose to call it a cold. Lyme disease does not get the recognition it deserves. Maybe someday. It just made me angry and I usually do not get angry.

    Enough complaining, any good reports. Christmas Plans?????

    Prayers...........Marsha

    Last edited by Pearlscale; 12-14-2005 at 08:02 PM.

     
    Old 12-14-2005, 09:07 PM   #263
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    Re: PICC line people

    Hi Marsha,

    Glad to hear you made it to church. I have a friend who wants me to go with her to church (I haven't joined one since we left our home town ten years ago) and I'd like to start again. It just sounds SO exhausting to get up and get dressed on a Sunday morning but that's no excuse. When we go back home I go with my mom and aunt once in a while and it does make me feel good.

    I actually had another good day today after waking up feeling rotten. I never had morning sickness when I was pregnant both times and am even more thankful now that I didn't back then...it's the pits. By late morning I was feeling okay and my husband insisted on going to the mall! He had something he wanted to get for our son and I picked up a couple of things, too. It was good to get out but our weather is cold too (at least to us Oregonians - around freezing) and we might get snow, which is pretty rare here, yuck.

    As for maybe getting off the PICC, I have a phone consult with my Cal. LLMD next week and we're going to discuss how long this might go on. I started the IV's at the end of July and am on Rocepin, Mepron, Amoxicillin and Glutathione as well as a bunch of supplements. So I don't have to go back to look over your prior posts, can you tell me how long you think you've been infected? I figure I was infected as a teen and I just turned 50 so I figure I'll be at this for a long long time. But maybe the doc will give me some encouraging news!

    Don't waste a bunch of energy answering me until you have time to kill. And I'm on my way to bed when my husband gets home from a meeting he had to go to. Last night was a fluke as far as my being up that late!

    You take care and have an even better day tomorrow...or today if it's already tomorrow!

    Prayers and good wishes,

    Tronni

     
    Old 12-15-2005, 07:19 AM   #264
    Pearlscale
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    Re: PICC line people

    Tronni
    Setting here running my primaxin then will follow that with clindamyacin. This is wk 3 of clinda (wk one was poor attempt 1 x 3days) The first month I don't count. It was c diff and staff with pulling picc line.

    As to how long I've had this. Larry and I went to Canada in 1987 (18 yrs). We went thru Niagra Fall (May) and then into Canada on a Hunting trip. There a week which was during black fly season. Black flies swarm 3 wks out of the year, we were there during one of them. If you walk out this black swarm discends on you to suck your blood. The day we left, I had 4 large red spots on the back of my neck. My glands were swollen, I ached, all the early signs were there. Within days went to my dr. (never heard of lyme) but my dr had. He drew blood to send off. Started me on Doxy. Had what was probably herx but I didn't know about herxes, went to ER. He took me off med thought I was having allergic reaction. (I was broken out in rash too)
    Few weeks later back to dr. He put me on rocephin for 10 days. The blood test came back pos for lyme. After the 10 days, I was told I was CURED. No other treatment till late summer this year.

    Since then, I have been treated for Fibromyalgia, 2 neck surgeries, possible MG then probable MS. All of which I now know were lyme. In a week I'll be 5 yrs older than you. I wonder how we would feel if we didn't have lyme. What would 55 feel like without lyme?

    I find my strength from my Lord. I couldn't have made it these years without him carrying me at times. Go with your friend to Church when you feel up to it. It does take an effort to get up and dressed. My energy is gone before I get there, but yet I get a blessing from being there.

    Hope you have a good day. As always prayers .............Marsha

    Last edited by Pearlscale; 12-15-2005 at 07:23 AM.

     
    Old 12-17-2005, 01:43 PM   #265
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    Re: PICC line people

    Dear Tronni & Marsha,

    Boy we are all about the same age. I will be 58 on New Years Day. I think Gerribear is the senior and then I am next on here. I didn't get to feel what it is like to be 55 either since this all started when I was 52. In fact my first symptoms started on Dec. 22nd just about 5 years ago. I guess that means I have an anniversary coming up.

    Tronni I had Ronnie get me some more baking soda so I could do the foot bath last night. Getting in and out of the tub has been a problem so I figured this is better than nothing. I think Ronnie expected me to dance out of the bathroom. I ended up with my legs twitching really bad but if I remember correctly takemylife said that is great. It means the lyme is scurrying around. I was afraid it would kick off a night of leg twitching but I popped another magnesium and it didn't happen. I know I woke a few times last night but went back to sleep but the funniest thing was that when I rolled over the clock said 5:34 and usually it says anywhere from 1:30 - 3:00. I wonder if the old footbath is what did this? I just might try it again. And that was with just 1/4 sublingual melatonin. If you have solved some of my sleeping problems I thank you.

    Marsha I am so glad you got to go to church and help. What a perfect place to feel somewhat "normal" for a change. As far as your sister-in-law goes she is no better or worse than most of the doctors out there so don't let it drag you down. I still say that anybody who disbelieves should spend just one day in any one of our bodies. They would see just how sick but strong we all are.

    I am pacing my self for Brent to come in Monday night but only doing what I can. He knows what a fuss budget I have always been about my house so I don't need to impress him. Ronnie has been a real trooper doing the floors (not my way of course) and I really appreciate it. We got a tree, not the huge one we usually get and the lights are on and I am adding about 10 ornaments at a time. No balls this year because of tree size but years worth of Hallmark ornaments that I collected. All presents are bought and a few wrapped. We may babysit Ava all day Wednesday because Rhonda has an interview in Tampa which is good because she is jobless. Ava's father left a big basket at her front door yesterday when she was out. It had 3 bottles of wine, a couple boxes of chocolates, a day at the spa gift certificate and a $1,000 check. I guess he decided to step up to the plate finally. I don't expect anything from this but maybe he's going to be more supportive. Time will tell. He has not even seen Ava yet because Rhonda said he could come over one day about a month ago and then she found out some stuff she wasn't too pleased with and cancelled. His mother has flown in from Denver twice to see her though. I think his heart will just crumble when he sees this little angel and he will regret his actions for the past few months.

    Maureen

     
    Old 12-17-2005, 04:36 PM   #266
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    Re: PICC line people

    Dear Maureen,

    I'm so glad to hear that you got a pretty good night's sleep! And if the foot bath had anything to do with it, that's just great. I've been looking at more info online about detoxing and a couple of people have mentioned using ginger, vinegar, sea salt and/or sesame oil in the bath. I'm going to experiment. One site said bentonite clay is a great detoxifier but to be careful about using it in a bathtub as it could very well mess up drains and septic systems. I might explore that one more and find out what the best way is to dispose of it (maybe in a weedy garden?). I'm still feeling better than I was last week and am also thinking it might be the foot baths.

    I take it Ava is your granddaughter, lucky you. I hope you have a wonderful time with her and with the rest of your family.

    Dear Marsha,

    Thanks for the update on how you arrived at this Lyme Twilight Zone! And even more, thank you for the uplifting words about your spirituality. I'm learning more every day but having come from a large family made up mostly of "doubters" I've struggled to find my way. I'm certainly a believer in a higher power and feel blessed that that higher power is helping me find my way.

    My best to you and yours and you're all in my prayers. Maureen, let's keep in touch about the foot baths and maybe one of us will make a real significant find for that.

    Tronni

     
    Old 12-17-2005, 05:01 PM   #267
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    Re: PICC line people

    I think it has been said before, but I would love to see a picture of Ava.

    Hairys the oldest, eh!!!!!! and Maureen a new years baby. (lets get together and celebrate our birthdays.)

    I know that this will be a special Christmas. With grandchildren, it has to be. I'm glad for Rhonda that Avas dad came through. I'm sure youre right, if and when he sees her, it will be love at first sight.

    Tronni, Clay is good for Koi ponds. Put in a koi pond and then you have the perfect place to recycle the clay. What is good for our feet is also good for my fish. I do use it regularly in my pond. Guess now I can use it first in a foot bath and then put in pond. Hydrogen Perxoide and baking soda are also good for ponds. I'm not sure about ginger. I may not know alot about lyme, but I do know whats good for my fish.

    My days are better than last week, but not as good as a few days ago. As far as Christmas decorating goes, I keep a guest bedroom decorated for Christmas year round. In December I take the 2 sm tabletop trees and move one (fiber optic) to the bay window and the other to my dining room table. Most of my gifts are gift cards. I take the easy way out these days.

    I would like to ask each of you to keep Dr Jemsek (my LLMD) in your prayers. He is having to fight charges brought against him saying he is treating without evidence of Lyme. See the post about this.

    Prayers................Marsha

    Last edited by Pearlscale; 12-17-2005 at 05:05 PM.

     
    Old 12-18-2005, 08:29 AM   #268
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    Re: PICC line people

    Marsha:

    I did see the posts about Dr. Jemsek and was shocked and saddened that these few medical people who are helping so many frustrated Lymies are coming under fire....sighhh prayers are always sent to them from me!!!

     
    Old 12-18-2005, 09:14 AM   #269
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    Re: PICC line people

    Hi Marsha,

    Thanks for the great idea about a Koi pond. When I told my husband about that he said, "Great idea, but the dog's water dish has been frozen solid on the patio all week. How would the Koi do with that?" Details, details, details .

    I'm horrified about Dr. J's problems, too, and am keeping him and others in like circumstances in my prayers. As if this disease wasn't bad enough, they're trying to bring down those who are trying to actually help.

    I did another foot bath last night (epsom/baking soda/peroxide) and feel pretty good this morning. I also found some glycerin in the medicine cabinet and am going to add that to the next one. The dead skin on my feet really sloughed off when I put lotion on after the soak and my feet are baby-soft. I think I'll also give the sesame oil a try because I love the aroma. One of these days I'll find my favorite soak formula and post it.

    Have a wonderful Sunday. It's a beautiful sunny but cold day around Portland Oregon but they say we might get hit with frozen rain tonight - ick!

    Hugs to all,
    Tronni

     
    Old 12-23-2005, 08:59 AM   #270
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    Re: PICC line people

    Hi All.

    I had promised to post after my phone consult with my LLMD and I talked to him on Tuesday. My main concern was how long he felt I would be on the IV abx and he said, judging by what symptoms I have and how I've reacted to the abx, I should figure on about 10 more months with the PICC line.

    At first I felt pretty down about that (was hoping not to go through another summer of watching out for overdoing the sun) but then it occurred to me that if I did indeed get off the IV's around October, then next Christmas I'll be PICC-free! I've been on an upper ever since.

    He prescribed two new things that he hopes might speed things along; Azithromycin (might make the Mepron work more effectively) and Actigall (to protect the gallbladder). I was nervous when I read about possible side-effects which included all the things I've fought since starting abx and which have gotten much better. And that first day (Wed.) after taking both new meds I felt awful...upset stomach, more dizziness, depressed, etc. Then yesterday I woke up feeling pretty punky but by late in the afternoon, started feeling good. Butch told me I had color in my cheeks! I did the abx. and glutathione infusions and gave myself a B-12 shot. I wrote email Christmas greetings until after 11:00.

    I'm very encouraged and am going to do another foot bath tonight because it does seem to help. And if I'm chasing those Keets out I'm going to use all the weapons I can.

    We're going to see a movie tomorrow night and go out to dinner. I hadn't been looking forward to that but now I am. My parents are coming on Christmas day and will stay overnight and I hope I show them that I AM doing okay.

    I wish all of you a wonderful Christmas filled with the spirit of God's love.

    Hugs to all,

    Tronni

    This morning

    Last edited by TeeDee; 12-23-2005 at 09:02 AM.

     
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