I thought I'd put a question out to all Rocephin IV users both past and present. I am just finishing my third full month on Rocephin IV.
At what point do you start to notice something? Anything? I don't see an increase in my symptoms but I also don't see any significant change to report.
I'm pulsing Tindimax now two weeks on/ two off and previously did pulse flagyl for 6 weeks. Flagyl was just way to toxic on my body. I am sure it was the flagyl because when I stopped taking it I was able to function once again.
I spent one year on orals and feel like I'm 70% back but I haven't noticed any changes in the neurosymptoms, tremors,myoclonus (at night only),vision,.
Most of what I've been told and read says nothing happens till 4-6 months.
Also did you notice hair thinning with the Rocephin???
What's been your experience????
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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posted
I was at about 6 months (been on almost 10 total) before my neuro symptoms started to improve.
The ones that led me to a diagnosis are improving on rochephin for SURE!!!!!!
Stopped dropping everything, stopped falling and my feet don't go numb or tingle anymore unless I am taking a cyst buster. My sinuses are clearer and my right side is'nt as swollen and painful unless herxing pretty bad (NOW)
I feel this is individual. If you have been sick for awhile I would give it some more time.
I know someone who never felt "better" on the IV but had brain lesions healed on it and thier spect scan went from yuck to clean. They did'nt feel good until co-infection treatment.
Good luck! I hope you get to 100%. Congrats on getting as far as you have!!
Posts: 111 | From San Francisco | Registered: Feb 2007
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CaliforniaLyme
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I didn't know that Cavey- !!!
Yup, I turned in the 7th month, had been on 6 still getting worse. Was on 9 months!!!
Lorie G from local group was well by 9 months too-
Karie M. from local group went on 3 courses of 1 months each got almost well each time but her doc took her off and didn't transition her to orals and she crashed first 2 times before 3rd time he transitioned her to oral tindamax and she went into full remission- she had MS diagnosis-
Jim H from local group was on 10 months I think- he was also diagnsoed MS and it got him better-
Annie was on over a year-
Glenn H has been on over a year-
Paul 6 months? I forget!!!
Rick and Chris both went to special clinic where they got 1-2 months of IV Rocephin and lots of other stuff- hydrogen peroxide and IV IGG- I forget frankly- this super expensive place back East none of the rest of us could afford- and this other local woman (owns pizza place, forget name!!) (super nice though, sorry if you read this that I forgot your name!) did same thing- she was on 3 months or so- but Rick was basically 99% when he went there, after year of orals, and Chris too was almost well when he went!
those guys were years back-
Kelly B turned at over a year and got into full remission after 7 years sick pre-IV. She was on IV Rocephin 2 full years!!! She was way well by months before 2 years but she wanted to make sure it was gone!! At one year she called me and told me there was no way she would ever be well and she just wanted to give up!! Now she has been in full remission for past 7 years!!!!!!!!!!!!!!!!!!!!
Melissa was on IV a long time and still is last I know and got rid of brain lesions locally and so did Aurora S who had 7 brain lesions that would have been diagnsoed MS if she hadn't have been diagnsoed Lyme-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Thanks for all the replies, I really appreciate it.
Sarah, you're amazing. You are truly an inspiration to all. The time you take to make us all feel hopeful is a great thing.
Thank you all,
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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SForsgren
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posted
I am interested in hearing about recent successes with Rocephin. One thing that concerns me about hearing all the ones from several years ago is that my LLMD acknowledges that it doesn't work as well as it did years ago. Some time back, people got Rocephin and walked and never had problems again. Today, it sounds like that doesn't happen. My fear with Rocephin is that how do you know that you won't get worse after you stop than you were before you ever started? It happens....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CaliforniaLyme
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posted
Karie M was not just from years ago- she JUST went into full remisison a few months back- and Melissa was recent as well. There are plenty of people from recently. I have never heard of any difference in Rocephin now related to the past!!!!!!!!!!!!!!
And Diana was recent as well- got better on Iv Rocephin- extremely articulate wonderful woman- a lawyer- also diagnosed MS-
also forgot- Mark- and Robert- !!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
Again, these are not all from several years ago AT ALL!!!!!!!!! I was referring to Chris & Rick when I wrote that!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I did IV rocephin for 7 months. After the 1st month my brain symptoms cleared up.
by the 6th month all my symptoms were gone. Did not herx.
I did an extra month.
At 4 months post IV, I started herxing again.
At 7 months post IV, I'm starting to have brain symptoms with my herxing.
I don't regret the IV, I had some incredible months and I'm still not doing too badly.
Trying holistic treatments now.
Good Luck! I hope you go into remission!
Posts: 111 | From York, PA | Registered: Jul 2007
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Dawn in VA
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I noticed a huge difference in my symptoms after only a week. But then unfortunately relapsed about a month after I was off the IV.
I hope you start feeling better soon.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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CaliforniaLyme
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posted
Seems exactly the same to me and excepting scotts comment never heard that from anyone else!!
Lucky Doc M from CO didn't hear that new rumor! Or he wouldn't be alive!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
up for more input.
Posts: 188 | From ID | Registered: Jan 2007
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Cass A
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posted
up
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Haley
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posted
How does someone afford 2 years of IV Rocephin? I am on for one more month after a huge set back when I went off. It's all that I can afford. I am so afraid to go off of it.
Posts: 2232 | From USA | Registered: Aug 2009
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seekhelp
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Won the super lotto Haley!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I get my picc next Fri., and I wish I hadn't just read all this. My ins only pays 28 days, and I have had Lyme and Co for a very, very long time.
I have been on orals over a year, with no improvement at all. Firt, I just hope it works, it's like my last hope. Next, I will go broke. We are not that many yrs from retirement and surely won't have anything left!!
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
I was on Rocephin for 30 days and then had to go off. I thank God for it because I believe it saved my life.
If I was to go on Rocephin again, I would want to make sure that I was taking other antibiotics with it that kill each of the 2 other forms Lyme takes (ie: cell wall, no cell wall, and cyst form). From what I have learned, Rocephin kills the cell wall form.
Still I am thankful for the 30 days I did have and the progress that has been made.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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Dawn in VA
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I "ditto" to what MorningSong has said. Same experience and thoughts about combos while on it.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Hang in there Keltyl! We'll go broke together! Ha!
I'm on week three. My mind feels a little clearer, but that's about it so far. But really, what other choice is their than finding a way to pay for it and doing the IV? I mean, I feel like I have to do whatever it takes to feel better, and if this might help, then is HAS to be worth it!
posted
Well, its been almost a year. After switching to Clindamyacin and more Rocephin, I am still on the IV. I actually AM leaving this Summer for stem cells....
bcb1200
Frequent Contributor (1K+ posts)
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posted
Californialyme...thanks so much for all of the success stories. I NEED to hear them! I'm only on orals and day 15 of treatment but like to know people worse off are better. 100% better and LIVING THEIR LIVES.
See my other post re "will we get better"
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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richedie
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I am wondering now if I should ask my doc about this. She told me she hasn't had luck with her patients using IV. Maybe she didn't try Rocephin?
All I know is a friend of mine said all his pain went away after 8 months on Rocephin.
I guess it will not be covered.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Rocephin IV for one month and I was symptom free. Made a mistake did not take at the same time flagyl and something for L form so I relapse badly.
Second time rocephin IV and flagyl almost all symptoms gone except pins needles itching.
IV rocephin saved my job my life and is the chipest medication for me.
I bye it in Europe very cheap once a year go there for vacation and supply and do IV by my self.
Posts: 482 | From Nebraska | Registered: Feb 2010
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It took 3 months on the Rocephin the first time to be symptom free. Wasn't on any orals with it. I did another 2 months (maybe 3?) on orals, and then was symptom free, and taking no medications, for a year.
Then this past February, I got sick again. Back on the orals, and then as of April 12th, back on the IV Rocephin. As of my last appointment (early this month), I've been on Flagyl with it.
I actually feel a lot worse since we've added that in, my joint pain came back with a vengeance. But the horrible fatigue is getting better (I'm actually having days where I sort of feel like a normal person).
My husband's mentioned that he feels like I'm not getting better as quickly as last time I did the IV. Then again, I'm only at the 6 week mark.
I have my next appointment on the 7th, so we'll see.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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