posted
Hi, I started on IV Clarofan 2 1/2 weeks ago. I think im herxing now from it. My legs are in a lot of pain. The nurse said that about 3 weeks into the IV's you normally herx.
Just one step closer in fighting this. The first week was the hardest. Getting used to having an IV in your arm was hard for me to get used to. Plus my arm was pretty sore the first week or so. But now it does not hurt and there is no pain in my arm. I really feel this will work. Good luck with your IV.
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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posted
I am treating babesia first then IV. Start malarone today. Off to see an alternative MD who does chelation, etc now. More later. keep in touch, any IV buddies...
Posts: 830 | From Colorado | Registered: Mar 2005
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I will call the surgeon for the PICC line today if I find the courage. Just wanted to let you all know.
Posts: 830 | From Colorado | Registered: Mar 2005
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I started IV 10 weeks ago. I am curruntly on mepron, IV clindo and IV Zith. I think I had a herx that lasted 6 days two weeks ago. I had real bad leg pain, so bad I could not sleep. My temp is at around 98.2-98.7, use to be 97.
Tomorow will get test IV of lavaquin.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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posted
Hi aliyalex. I'm doing IV claforan and I think I'm into my 3rd week, but I'm not 100% certain. Days are running together and I'm herxing pretty hard. The first week was easy for me and as time went by the herxing worsened. Hoping to get my groove back one of these days real soon.
Good luck with the claforan!
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
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posted
Well, today was the big decision day for me. I am setting it all up. My PICC and IV Primaxin for me. Will be starting soon. Want to be part of the IV buddy group!
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I'm also on IVs (IV Clindamycin). Been on it for almost 3 months now and next week my LLMD and I will need to decide whether to continue with the IV Clinda (haven't really improved on it, just felt more worn out) or switch to something else (most likely either IV Primaxin or IV Zithro and oral Mepron). Anyway, I want to join the IV buddies group!
I have an idea (and this might be too much work but thought it might be nice) - would anyone be interested in having a Yahoo! group for IV buddies? It's easy to set up and I'd volunteer to be the moderator (although I don't think we'd need much moderation). Any thoughts? Just say the word and I'll set it up!
I would love to be a buddy! I've had a midline (pulled due to inflammation) two peripherals ( waiting for picc to get set up) and my Picc was put in on the 9th of august. I was on rocephin for 7 wks until I had a little incident with Gallstones, took a week off then started the rocephin again until I got the primaxin which I started last Friday, 500mgs twice a day.
Annie , A Yahoo! group sounds awesome! How do you set it up? are you sure you'd want to moderate? I can get quite rowdy right before it's time to juice up!
Aliyalex , Have you gotten the Picc set up yet?
-------------------- -Kimmi Just keep swimming! Posts: 251 | From East Greenville pa, usa | Registered: Jun 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Well, I went ahead and created a Yahoo! group! Head on over to IV Lyme Buddies and join!! I am the group owner and moderator but it is an unmoderated group, meaning that the messages don't have to be approved before being posted. If there's a problem, though, I can step in and edit or delete posts (which I hope I don't have to do!).
posted
Wow! Or should I say, Yahoo! OK. Now I don't know whether to continue to write here or go to Yahoo. Since I still don't have a phone line from Katrina, I have to go to wireless parking lots to log on.
No, I didn't get a PICC line yet. Maybe I will set it up today. This "group" feels like it is growing in support. Yahoo!
Posts: 830 | From Colorado | Registered: Mar 2005
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I went to Yahoo, but I feel there is more interaction here at lymenet. Hope I didn't giveup too soon.
I am scheduled to met with the surgeon Tuesday to schedule the PICCline. She is going to do it in the hospital. Is this typical? The home health org is calling my insurance co to see my coverage.
I am so sick of feeling like cr*p.
Posts: 830 | From Colorado | Registered: Mar 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
The Yahoo group isn't that exciting yet but once we get some more members I think we'll have some more active conversations. I think of the Yahoo group as more of a long-term support thing for Lymies on IVs whereas here it's more of a specific question-oriented support.
I had my PICC line in 2002 placed in the hospital. They were going to try to place a midline (a shorter version of the PICC line) at home with home nursing but they weren't able to get it in so they scheduled it in the hospital with contrast dye used. It was pretty easy (except that I was allergic to the dye so that caused some problems) and I was in the hospital for a few hours.
posted
Going in Monday for a pic,very nervous.Going to try rocephin.I herx real bad on orals so im really concerned about this.After three and a half years of orals Im ready to try anything though.You would think i would know more about IVs after 4 years of lyme but I dont.Does a nurse come to my house after the first infusion and how often.Does the nurse check my blood every other week.Do I infuse myself,is it twice a day?Thanks Joe (Annie,since your local do you recomend any infusion co.)
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Joe,
I didn't realize you were finally going on the IV treatment. I hope it really helps you! (BTW, it was nice to see you briefly on Wednesday, wish I'd gotten a chance to talk a little more.)
Generally, a nurse comes to your house for the first infusion to oversee it and make sure you don't react badly to it (or you have the first infusion in the hospital after the PICC line is inserted, but that's never been the way mine has been handled). At this time the nurse also teaches you how to do the infusions and everything. After that, a nurse comes out once a week to change the PICC line dressing. If you have orders for labwork, the nurse can do that, too, to prevent you from having to go out to a lab every other week. Once the nurse teaches you how to infuse, you can do it yourself and it's really much easier than it may seem like it would be.
As for infusion companies, are you not already set up with one? I'd think that would be all set since you're getting the PICC line on Monday. My infusion company (who has been good overall) is Coram Healthcare. They're the only one I've ever used but they've been pretty good and I've been able to get everything I need without trouble.
Let me know how it all goes! And come on over and join our Yahoo group if you feel like chatting about it!
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