Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 >1. Question. I'm told that one month of the IV wont >come close to fixing my problem, But will I notice a >difference, towards the end of the 1`st treatment? > in my experience with rocephin, true, and true. i had no real problems with the picc line, and the only real side effect i had was diarreah (still can't spell it though). it gets pretty intense after about the 5th week, but nothing i couldn't handle. i want to blame a little weight gain on it, but i'm not certain that's the case. nothing crazy...just 5-7 punds, but that's a lot on a small person. >Symtoms: >1. Mind goes Blank sometimes you know, i had...............wait a minute, what was i talking about? ) >2. VERY Stiff legs!! oyyyyyyyyyyy!!!!!!!!!!!!!! do you have a rheumatologist? i've tried both heat and ice, neither seems to work,but i'm about to try aspercream. watch out for your hips and neck too. >3. Fatigued durring Mid day about 3:00pm geeeeez! it usually hits me by 10am....then again around 1pm and then again around 5pm. i've resigned myself to taking a few cat naps and NOT feeling guilty about it. hey...whatever works for YOU.... IMO, when your body is falling asleep, it's trying to tell you something.........YOU NEED IT! LISTEN to it...it knows what it's doing. >4. Just dont Feel good > i totally understand. i feel ya. i get so sluggish and just groggy and sometimes cranky, no appetite, dizzy, stiff, all around " bleech " . but the good news is, so do most of us, so you're right on track! i think part of the problem i've had is people saying stupid things to me like, " you look fine. " OK, well, i don't FEEL fine!!!!!!!!!!!!!!!!! GRRRRRRRR! i just want people to shut up about how i look and just LISTEN to me once in a blue moon! hang in there, ray. this group is so incredibly supportive and people will offer their experiences to you in a heart beat. one last note about your IV rocephin.........i went on for 5 weeks, and was stopped until i saw a rheumatologist. a few people have tried to take my picc line out. i wouldn't let them, because i've read too much about how much longer it takes (many months sometimes) on IV ABX. as long as you care for the line well, you should be able to keep it for a long time. don't let anyone tell you to do something medically if you have an instinct about going another route. if your doc pisses you off, or doesn't LISTEN to you, switch. if they try to talk you into something that you don't understand......ASK, ASK, ASK. research it, learn about your medical care. you MUST be an active participant in your care. feel free to email me on the group, or off if you have any more questions about rocephin, or whatever. good luck, and please know you can truly rely on this newsgroup for total support! xoxo jeni _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 Probiotics such as acidophillus should be taken in conjunction w/aggressive abx to avoid intestinal problems. Rita Re: [ ] IV Rocephin >1. Question. I'm told that one month of the IV wont >come close to fixing my problem, But will I notice a >difference, towards the end of the 1`st treatment? > in my experience with rocephin, true, and true. i had no real problems with the picc line, and the only real side effect i had was diarreah (still can't spell it though). it gets pretty intense after about the 5th week, but nothing i couldn't handle. i want to blame a little weight gain on it, but i'm not certain that's the case. nothing crazy...just 5-7 punds, but that's a lot on a small person. >Symtoms: >1. Mind goes Blank sometimes you know, i had...............wait a minute, what was i talking about? ) >2. VERY Stiff legs!! oyyyyyyyyyyy!!!!!!!!!!!!!! do you have a rheumatologist? i've tried both heat and ice, neither seems to work,but i'm about to try aspercream. watch out for your hips and neck too. >3. Fatigued durring Mid day about 3:00pm geeeeez! it usually hits me by 10am....then again around 1pm and then again around 5pm. i've resigned myself to taking a few cat naps and NOT feeling guilty about it. hey...whatever works for YOU.... IMO, when your body is falling asleep, it's trying to tell you something.........YOU NEED IT! LISTEN to it...it knows what it's doing. >4. Just dont Feel good > i totally understand. i feel ya. i get so sluggish and just groggy and sometimes cranky, no appetite, dizzy, stiff, all around " bleech " . but the good news is, so do most of us, so you're right on track! i think part of the problem i've had is people saying stupid things to me like, " you look fine. " OK, well, i don't FEEL fine!!!!!!!!!!!!!!!!! GRRRRRRRR! i just want people to shut up about how i look and just LISTEN to me once in a blue moon! hang in there, ray. this group is so incredibly supportive and people will offer their experiences to you in a heart beat. one last note about your IV rocephin.........i went on for 5 weeks, and was stopped until i saw a rheumatologist. a few people have tried to take my picc line out. i wouldn't let them, because i've read too much about how much longer it takes (many months sometimes) on IV ABX. as long as you care for the line well, you should be able to keep it for a long time. don't let anyone tell you to do something medically if you have an instinct about going another route. if your doc pisses you off, or doesn't LISTEN to you, switch. if they try to talk you into something that you don't understand......ASK, ASK, ASK. research it, learn about your medical care. you MUST be an active participant in your care. feel free to email me on the group, or off if you have any more questions about rocephin, or whatever. good luck, and please know you can truly rely on this newsgroup for total support! xoxo jeni _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 read lyme-and-rife group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 I'm about to begin IV treatment with Rocephin and I hear that a possible side effect is gall stones resulting in having to have your gall bladder removed? Just wondering what others know about this or if anybody has any personal experiences they could share regarding IV treatment with Rocephin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 > > I'm about to begin IV treatment with Rocephin and I hear that a possible > side effect is gall stones resulting in having to have your gall bladder > removed? Just wondering what others know about this or if anybody has any > personal experiences they could share regarding IV treatment with Rocephin. > > > I was treated with IV rocephin for 8 months, no problems with gall bladder. I do know of another woman who did IV rocephin and did have to have her gall bladder removed. It is a side effect. It can happen, but the benefits out weight the side effects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 -- Read my post from November. I was treated with Rocephin via PICC line for 28 days this November. No problems with GAll STONES YET. I did take Milk Thistle while on Rocephin to support my Liver. Good Luck! I suspect it has a lot to do how toxic our bodies are from previous use of Rx and poor diet and lifestyle. Just my opinion. It is all accumulative in our system. -- Lida > > > > I'm about to begin IV treatment with Rocephin and I hear that a possible > > side effect is gall stones resulting in having to have your gall bladder > > removed? Just wondering what others know about this or if anybody > has any > > personal experiences they could share regarding IV treatment with > Rocephin. > > > > > > > I was treated with IV rocephin for 8 months, no problems with gall > bladder. I do know of another woman who did IV rocephin and did have > to have her gall bladder removed. It is a side effect. It can happen, > but the benefits out weight the side effects. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 I am a nurse, respiratory therapist I was going to due the same I did a central line with rocephin and keflex. I did have home health follow. but only because my Dr. felt better. The home health excepted the 80% I do not see a problem with what you suggest. Bud " Ann B. Mullikin " <think@...> wrote: Has anyone had the IV Rocephin treatment? Was if effective? I am faced with a dilemna. My insurance carrier will cover 80% of the cost for 28 days. I don't know if that is the best of care at this point or whether 28 days is long enough to really do any good? I need to know these things before I start with it. Sounds like an awful lof of money. Since I am a nurse practitioner I don't understand why I can't get a PICC line and administer the IV myself? Anybody done that on this list? Thanks for any info. ann think@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 I have taken a course of 12 weeks of IV Rocephin and this past week switched to Clindamycin. One more week for me then I'm done. I'm herxing pretty bad today. I take a bunch of oral abx too. Herxed really bad about 3-5 weeks into it. My doc (see separate e-mails) believed in aggresive IV therapy. I had been on orals for about 2.5 years prior with limited sucess. Good luck. Chris -------------- Original message ---------------------- From: " Ann B. Mullikin " <think@...> > Has anyone had the IV Rocephin treatment? Was if effective? I am faced > with a dilemna. My insurance carrier will cover 80% of the cost for 28 > days. I don't know if that is the best of care at this point or whether 28 > days is long enough to really do any good? I need to know these things > before I start with it. Sounds like an awful lof of money. Since I am a nurse > practitioner I don't understand why I can't get a PICC line and administer > the IV myself? Anybody done that on this list? > > Thanks for any info. > > ann > think@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Ann Just last week, I completed 28 days of home treatment at 2 gms per day. Hopefully, I am rid of the bug, at least for a while. A local infusion service delivered the gear and the abx weekly after the PICC line was inserted. A nurse gave initial instructions and visited once weekly to change the dressing. My wife did the infusion, but there were provisions so I could have done it myself if need be. My understanding is that if Medicare is the provider, they will only pay if everything is done in a hospital. Hope this may be of some help. W Baltimore Ann B. Mullikin wrote: >Has anyone had the IV Rocephin treatment? Was if effective? I am faced >with a dilemna. My insurance carrier will cover 80% of the cost for 28 >days. I don't know if that is the best of care at this point or whether 28 >days is long enough to really do any good? I need to know these things >before I start with it. Sounds like an awful lof of money. Since I am a nurse >practitioner I don't understand why I can't get a PICC line and administer >the IV myself? Anybody done that on this list? > >Thanks for any info. > >ann >think@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Since I am a nurse > practitioner I don't understand why I can't get a PICC line and administer > the IV myself? Anybody done that on this list? My daughter got a PICC line inserted. We get a week's worth of rocephin at a time from the home health agency. We administer it ourselves via the " eclipse " ball pump. It's easy enough to do. Once a week, the agency sends a nurse to change the dressing. But I know a number of people who change the dressings themselves. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 , yes, thank you very much - most helpful. Good luck and good health to you. ann think@... Re: [ ] IV Rocephin Ann Just last week, I completed 28 days of home treatment at 2 gms per day. Hopefully, I am rid of the bug, at least for a while. A local infusion service delivered the gear and the abx weekly after the PICC line was inserted. A nurse gave initial instructions and visited once weekly to change the dressing. My wife did the infusion, but there were provisions so I could have done it myself if need be. My understanding is that if Medicare is the provider, they will only pay if everything is done in a hospital. Hope this may be of some help. W Baltimore Ann B. Mullikin wrote: >Has anyone had the IV Rocephin treatment? Was if effective? I am faced >with a dilemna. My insurance carrier will cover 80% of the cost for 28 >days. I don't know if that is the best of care at this point or whether 28 >days is long enough to really do any good? I need to know these things >before I start with it. Sounds like an awful lof of money. Since I am a nurse >practitioner I don't understand why I can't get a PICC line and administer >the IV myself? Anybody done that on this list? > >Thanks for any info. > >ann >think@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 I had a central tunnel line (port) put in, had the home health care come long enough to show me how to change the dressings and do infusions, change the plugs, troubleshoot problems, etc., and I was on my own for 8 months. I'm still on oral abx ... in treatment 3 years now. I have good days and bad days. Flagyl always kicked my ass too. I've been on many different abx regimens. Minocycline is the best for neuro Lyme (and it's cheap). AM Annmarie Mikelski Coastal WGSD Rescue Referral www.coastalwgsdrr.org www.cafepress.com/coastalwgs www.cafepress.com/wgsdstore www.cafepress.com/caveformations www.caveformations.com www.cafepress.com/lymegreen www.friendsofdra.org --------------------------------- See the all-new, redesigned .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2010 Report Share Posted August 22, 2010 > > I did IV rocephin for 9 months. wow, isn't that extremely long? And without liver or gall bladder trouble? I got 8 weeks IV rocephin, which was (at the time) about the record in my country, more than 2 weeks is very unusual. For me it helped with the more acute neuro problems, but most of the other effects disappeared soon after the treatment. And I got gall stones, probably as a result of the rocephin (they didn't use the stuff that should protect against gall bladder trouble). I wouldn't do it again, mostly because of severe issues with the PIC lines that where rejected with a few days usually. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2010 Report Share Posted August 23, 2010 It was long. I had a port put in my chest for a year. We pulsed 4 days on 3days off. The 3 days off I was like a normal person able to swim and be freeish. I did regular detoxs with medical food and kept a pristine diet, lots of veggies, seaweed. No gluten, dairy or sugar. I rested a ton, moved to parents had family and friends around. I cut out every expense in my life except for drs, insurance and medicine. My gall bladder has had no negative effects. I do a lot of digestive enzymes too. It was not easy. Very emotional and tough herx's but on the other side I feel blessed to have such a great dr. And have a little more of a life back. Its all about gratitude and perspective at this point for me. Keep your eye on the goal! Monty Sent via BlackBerry by AT & T [ ] IV rocephin > > I did IV rocephin for 9 months. wow, isn't that extremely long? And without liver or gall bladder trouble? I got 8 weeks IV rocephin, which was (at the time) about the record in my country, more than 2 weeks is very unusual. For me it helped with the more acute neuro problems, but most of the other effects disappeared soon after the treatment. And I got gall stones, probably as a result of the rocephin (they didn't use the stuff that should protect against gall bladder trouble). I wouldn't do it again, mostly because of severe issues with the PIC lines that where rejected with a few days usually. Quote Link to comment Share on other sites More sharing options...
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