posted
Posted already under IV ceftriaxone but understand that is the generic name for rocephin. Looking for information on side effects, intensity of herx reactions, effect on LD symptoms, especially head pressure and joint pain. Can anyone help from their personal experience?
Posts: 72 | From Scotland | Registered: Apr 2005
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I don't think this will be much help to you as I've only been on IV Rocephin since August 29th.
Initially, it made me extremely tired but that is lessening. I had one episode of vomiting (about twelve hours after my first infusion)(sorry). Exactly two weeks after that episode, I felt that urge again, but it didn't last.
I haven't had too many joint problems other than the shoulders and occasionally my knees hurt. I think it's a little too soon to tell.
I did have head pressure in the past and got the most relief from that with Bartonella Tx.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I have been on IV rocephin for 3 months. I belive I am slightly better (actually, today is much better).
I have decided to keep a journal...you may want to do the same, to really track how you are doing.
I just write mine on my calendar. "1" means I'm down. "2" means I can function, but I only do the bare minimum and I feel awful. "3" means I can function, and do something extra (like make cookies for the family or clean something). "4" means I can function, do extra and have some enthusiasm. "5" is a good day (for having lyme.)
In charting, I can tell where my bad days are (and they seem to be about 4 weeks apart); and if I'm improving.
I think I'm having more 3 and 4 days; instad of one or 2 days.
After 10 weeks, my shoulder pain lessened. I still have some head pressure...that varies on a day to day basis... Good luck.....Tina
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I slept for months!!!!!!!!!!!!!!! Didn't improve until month 6 really!!! Then *)!*)!*)!! 9 months total. Saved my life. I was really bad. So ill. Saved my life*)!*)!!!!!!!!!!!!!!!! Have stayed at 99.9% for years now on maintenance abx like Doxy & now amoxi- Thank GOD for IV ROCEPHIN!*)*!)*!)!
-------------------- 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
| IP: Logged |
WildCondor
Unregistered
posted
Rocephin is very commonly used to treat Lyme disease. It worked really well for me. As far as side effects, none really except the herxing! For some reason whenever I took Rocephin I got mood swings, either depressed or angry. It would come and go. If you find yourself getting really pissed off over nothing, it can be the medication. Also, it can cause gallstones and gallbladder sludging. Actigall is usually precribed in conjunction with Rocephin. Rocephin is also available in intramuscular injections (shots) form. It should work very well for you, and remember, as you go forward with your treatment you can add in Zithromax and Flagyl to be more aggressive. Good luck!
IP: Logged |
posted
Hi fellow ROC users-- I've just started IV Roc. (on 10th day,2 gram daily) and was very happy to see this post. Having mostly neuro and GI issues as my problems, I've been encouraged by seeing a little bit of change in my cognitive abilities come back as well as my bowels starting to work again.
For those that are going through Rocephin or have gone through treatment..can you add some insight of what to expect. I know we are all different, but hearing some shared experiences greatly helps. I'm only going into my 2nd week...but notice during the first week, my concentration/focus/energy/appetite was better.
On the 7th treatment, I felt good enough to go and get a haircut, take a short drive and make dinner for my family. A truly great day! :whoohoo:
Now, just a few days later, I'm noticed increasing tiredness/weakness than ever before, and I'm having alot of nauseau and irritability that I've never had. Also, I'm having pain in my left knee joint that's gone on for 3 days now...again, never had this problem in the last year and a half.
So, I know this is only near the end of my 2nd week...but to those that have been through Rocephin, are these some "normal" symptoms? Is there a better way to detox for IV users versus oral abx? Today, I feel like I'm back to square one (feel like I've been drugged the focus, concentration, irratibility AND nausea is so bad )
Thanks for your answers and help! JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
timaca, I really like your chart and have instituted it. THANKS.
I realize I had a near 4 recently, went to a 3, actually took a short walk, and the next day was a lousy 1.
Java, I'm only a little ahead of you with ROC, will finish my third week tomorrow. 2Gm five days on, two off. What you described is really really close to what I experienced. This week it's been a rollercoaster.
Monday was a 3, Tuesday 1, Wednesday 3, Today 2. But, boy that 4 was pretty nice while it lasted.
Brodie, not sure if this is what you're looking for.?
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
posted
Thanks to all who have replied to this one - lots of encouragement from all these positive posts. My husband has had LD for just over a year and had Doxy (usual useless 3 weeks) at the 3 months stage. If this antibiotic is making a real difference to people who have been ill for years, then I have high hopes. Thanks again all.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
CaliforniaLyme~ Thanks for posting about how long it took to get well...even on IV. That helps those of us who are wondering....
Pocono Lyme~ Glad you liked my charting idea. It was the only way I could get a handle on how I was really, objectively doing. Yes, those 4 days are nice (I've even had a couple of 5s but not nearly as often as the 4s).
One thing a doctor told a friend of mine, is not to look at the day by day charting, but month to month. Overall, does this month have more 3s than the last month, or more 4s etc.
It can take awhile to improve, so looking at the bigger picture is important.
Also, I have noticed a monthly set of "2" days....where I am really not doing very well. When I get my 2s I can look back and see that they occurred about a month before, so it is most likely the cyclical nature of lyme exacerbating...and that gives me hope that I'm not backsliding completely.
Hugs to all you IVers. Let's get well!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
At first, I was horribly ill on IV Rocephin. My heart raced, the room was spinning, I was exhausted, I thought I was going to die, literally. I felt so toxic. After 5 weeks I really saw some great improvement, almost overnight. I learned that it was best to do the infusions after dinner and before bedtime. I then just slept off the effects. I did have some pretty weird halucinations and dreams though.
It did get better. Rocephin took me to a higher level of wellness.
posted
Good to read other IV Roc user experiences...I can only speak for myself, but as cr@ppy as this disease is, I appreciate having you all around for the experiences and support...so my many, many thanks again.
I saw a little trend in that many of IV Roc users felt very "sleepy" with this abx. Unfortunately, I lost my sleep skills to this nonsense, and am hoping these IV treatments will help bring the sandman back again.
For those of you who are using sleep meds, do you notice any change in effectiveness of the meds...or perhaps a better time of day to take the IV's? Out of convience, I take mine after dinner as suggested by beachcomer. But that's because it works better with family's schedules. Anyone have thoughts or suggestions regarding this?
Hey Pocono (or anyone else who'd like an IV "Buddy" ), since we started about the same time, would you be interested in checking in on each other...seeing if there's some common things that "pop" up and offer support and hopefully, many high fives as we get through this?
Timaca- Just wanted to add, I like your chart idea as well. Very simple, to the point and easy to chart...great idea!
Sending along my hugs and healing as well to you all,
JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
| IP: Logged |
posted
Sorry, hit send on my last post before I remember to ask if anyone has any hints/advice on detoxing while doing IV's...or pretty much the same as on orals?
Thanks, getting tired again and wishful thinking a latte would fit inside the IV bag...hmmmm (hey, if people can do coffee enemas, while not just cut out the middle man!)
JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
BC, I know what you mean about feeling like you're going to die, although, thankfully I only had one of those episodes. It was about twelve hours after my first infusion,
Spinning, heart racing, sweating profusely,, then vomiting. I thought I was on my way out. Didn't last long, but long enough.
The tiredness I felt after infusing was like as if the blood was drained out of me. That lasted the first week and a half or so. The problem is that despite feeling so overwhelmingly exhausted, I still couldn't sleep.
I have Xanax to help with sleep, but doesn't work, so why bother adding another med..Slight depression at times, not bad though.
Java, I'd love to have a buddy and Shhhh, between us, we could bug Timaca since she's got a head start on us. Whatta ya' think, Coach Timaca?
I'm also on Actigall. Plus Zith and more. Well, love you guys but my hubby is home. G'Nite
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I have found that I start my infusion DURING dinner, since I am sitting down anyway...I might as well get some of it out of the way then (It takes me at least an hour to infuse).
I've learned a couple of things about infusing. When the last bit has gone out of the bag, and into whatever tubing is part of "you" then disconnect from the bag. If you don't (as I once found out) you will soon see your blood coming out of you, and back into the tubing!
I also learned (just this past week) that when you are attached to the infusion bag, that you really should keep it above your heart at all times. I was wandering around the house with mine, holding onto it, looking for a heating pad (because my back was hurting)....and I knew that the medicine wasn't "dripping" into the drip chamber, but I thought that was OK. Well, what was happening, was if it's not dripping one way, then it's dripping the other...and soon I had my blood once again backing up into the tubes...mixing with the medicine! I let out a little shriek with that one! Once I got the bag up above my heart, it started dripping, and all eventually got back to normal.
Beachcomber~ I'm a bit jealous that you saw lots of improvement after 5 weeks. I was hoping for lots of improvement. I'm at "little" right now. But, I guess that is better than "none."
JavaBeing~ Glad you like my chart idea too. I should mention that some days may have 2 numbers in them. For instance, a morning may be a 3, and the afternoon a 2; so it gets written on my calendar as a 3-2. I'll also note if I have unusual issues...for instance a headache, or lately I've had backaches (not normal for me). It just helps me keep track of "me."
Pocono Lyme~ I'd be happy to be a "coach." At least share my experiences....and the 2 points I can make right now is disconnect the line immediantly when done infusing, and keep the bag above your heart, or you're apt to see your own blood in the tube!
How long are you (any of you) supposed to be on IV?
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
Hi Timaca-First, thanks for stepping into be our coach/mentor... , I'm sure Pocono wouldn't mind me sending along our thanks for being the one in front with the flashlight so to speak, so we can help each other around this maze. (We promise not to throw any Gatoraid on you when we're finished either...but would be happy to buy the pizza and beer at the awards ceremony...there will be trophies right? )
Thanks for the hint about the infusion line...so far I haven't had the problem of any blood getting into the line, I've noticed the opposite though...I can't get all the IV to go downwards. We have above my heart, actually always above my head...and every time it gets down to the last say, 6 inches from the end, and then just stops.
My naturalpath doc says this is okay, won't make a big difference, but hey, as you know these bags cost as much as filling up your car now, and you want to get all you paid for. Any suggestions on how to get it to infuse completely?
Also, can you share any of your thoughts on detoxing while on IV's? Have you had to "up" the normal regime from orals?
Well, gotta get dinner going...Thanks again Timaca for being our lead...we will try not to step on your heels as we go!
Hugs and healing, JavaBeing
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
| IP: Logged |
beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Ok, Java, you have me totally confused. You say you have 6 inches of Roc. left in the bag and then it stops? Or is it 6" in the tube? If it's in the tube that is normal. My nurse told me it was ok to infuse while in bed and just fall asleep because it would stop a few inches from the end, which is what you want, if you do fall asleep. Otherwise, you would have to flush immediately so the blood would not draw back into the tube. You should flush with saline and lock with Heparin anyway. JMO
Timaca: I am concerned that the blood is coming back into the tube. It really isn't dangerous but, my nurse always told me to make sure the bag was well above my heart because it work solely by gravity. The few times I had blood come back into the tube was when I was trying to do something (not sitting still). I disconnected, flushed, reconnected and started the drip again.
What is really creepy is when a vein collapses and the blood just comes rushing back down the tube, along with the med. Happened to me a couple of times - managed to ruin my nurse's nice white sweater on one ocassion. I was a fountain. Was just so glad to be in her office at the time because my BP dropped way too low.
Pocono: Yeah, me too. I ended up in the ER a couple of times from the heart racing, etc. I think it was really scary. Almost as scary as how many red lights the ambulance ran. In time, I learned to recognize the symptoms and not to panic.
Posts: 1452 | Registered: Feb 2004
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Brodie,
Curious, Is your husband on Rocephin now or looking into it?
California and WC, Thanks so much for sharing your experiences. Did you treat coinfections prior to or during Rocephin?
Coach Timaca, Thank You and I promise, WE won't throw gatorade on ya'. That's got sugar that we'll be able to have again some day. We're gonna drink it. Besides we have to get really hydrated before the beer and pizza
BC, Boy I'm hoping to see that same improvement after 5 weeks. Don't know though as so neurological. Doesn't hurt to hope.
Java, Like you, this Rocephin is good to the last drop. I don't know what kind of bag you have, but check for a flip open cap near the top of the drip chamber. This will allow a little air in to get better flow. Adjust your flow rate to catch it just before that last drop.
I don't take any chances on the air going in. It takes a whole tubing pretty much for an air embolism, but we already know how our luck goes.
Pocono
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I did a month of IV Rocephin (2 grams a day). Doc wanted 3 months but Blue Cross said "uh-uh."
I thought that even just that month improved my cognitive problems enormously.
My co-workers thought so too, and they're probably the best judges of that. (After suffering through my blank stares for months patiently.)
I did have some pretty ferocious headaches for a while but they let up.
I did my infusions in the morning while getting ready for work. I would drink a big glass of water at the same time.
I will also admit to drinking coffee before and after -- a girl's gotta stay awake to work, y'know. Staying awake is one of my problems and I've tried skipping coffee and we are talking about an upright corpse here. My LLMD gave me some Provigil which does help.
I don't know whether to blame the tiredness on the Rocephin or just plain old Lyme disease but it did seem worse on Rocephin.
Also, my liver panels went off the charts a bit so I had to take a week's break. LLMD asked if I had any abdominal pain but I did not. No other side effects that I know of, other than it cutting sorely into my LymeNet reading time in the morning.
It's good stuff!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
Pocono - to answer your question, my husband is the patient and he is going to be starting the IV in 3-4 weeks. Just waiting for a couple other test results first. Doc says they will probably follow up with orals - depends how things look after the 28 dys. By the way, I don't think his IV is going to be infusions - I think he said they may inject it straight into muscle - seems to be a common way of doing things here. Anyone know if that makes things worse? I suspect it does as you get the whole lot pretty quickly.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
You know, my Ehrlichiosis was treated pre-IV Rocephin but my Babesiosis not until after which may be why I took longer- I don't know!!! I *DO* know that if I hadn't have had the tick bite and rash I would NEVER EVER have believed it was Lyme because I was SO unresponsive to treatment for SO long!!!!!!!!!!!!!!!!!!!!! Makes me sad knowing many people who don't remember tick bite will give up in same proverbial boat!!!!!!!!!!!!!!!!
And Rocephin being wonderful- it was life to me- but it should only be a last resort for the sickest of sick because IV does have risks!!! IM is better if you can afford it to be- but for neuro neuro Lyme you need Rocephin usually- and THANK goodness I had a doctor willing to treat-
2 people locally have gone longer than me - and a few have done 9 months as well- one woman did 14 months and had 7 brain lesions ("MS") heal!!! One woman who was sick for 9 years was on Rocephin for TWO years and is 100% remission, off all meds. She also never ever thought she would get better then around 12 months for her she turned and stayed on until every tiny thing was gone and she was 100%. She is talking at our group this month. Her daughter, who was also sick, like mine, is 100% like mine- and it was funny because they were seeing the same (our daughters) pediatric cardiologists because of heart stuff*)*!)! Now they are both 100%(*)_(!_(_!!!!!!!!!!!!!!!!!!!
It takes time if you have been sick for years and are really sick- and the voice of experience- from having facilitated the local support group for years now- unless treated for BABS and EHR as well as Lyme people don't tend to get 100% or near! Ehrlichiosis and Babesiosis can be seronegative like Lyme can!!!
My little toddler daughter used to beg to infuse me. She would get such a thrill. It made her not scared of it. Now we have a local woman in the group whose little son does it, too. The kids like helping and it takes away the scariness of it. But that is how easy infusing is for those who don't know- literally- a two year old can do it!
Best wishes all, Sarah
-------------------- 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
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
JavaBeing~ I sure hope there is some kind of trophy at the end of this lyme mess! I used to backpack in the Grand Canyon and do races over 13,000 ft mountain passes, and dealing with lyme is a heck of a lot harder than those things! We deserve a trophy!
I chuckled at your words about our medicine costing as much as filling a car with gas. How true!
As far as getting the last bit of medicine into me. As it gets towards the end, I just lift the line up with my other hand if it is slowing down, and it seems to always go in....
For detoxing...I don't do anything special. My GI tract moves several times a day so I figure that's good. I carry a water bottle with me at all times, and drink a lot of water (a hold over from my backpacking days--but a good practice for now too). So, I urinate frequently.
I sit in our hot tub probably 3 times a week, so I sweat there. I wrap my arm in Glad Press and Seal and float it on a kiddie intertube, so it doesn't get wet. I also leave the jets off to prevent splashes.
So, in essense, I sweat, pee and poo regularly. I don't really want things coming out of my nose, mouth or ears, so I'm leaving my detox at that for now....
Beachcomber~ I would not want to fall asleep while infusing, for I could not be sure that the medicine would not all drain out and then the blood start coming back in the line! The one time I did let it drain out, I was sitting at the computer typing. I wanted to finish what I was typing, and so didn't disconnect right away. Soon, there was blood coming not just into my line, but the other line as well! So, for me, falling asleep while infusing would worry me!!
Michelle~ Your description of an "upright corpse" brought a chuckle to me. Thanks. We need all the laughs we can get!
Brodie~ If your husband is going to do IV; then they won't be injecting the drug into the muscle. That is IM injections. Now, you may be thinking of a drug that is injected slowly (over 5 minutes or so) into the IV line; instead of using a drip bag which we all seem to be using. I have heard of the "injections" into the IV line.
I spoke with my pharmacist about that, and he said basically "call me old fashioned if you want to, but I prefer the slower infusion of a medication near the heart. This stuff is caustic, and I'd rather you put a little in at a time, than a lot. I don't want you having heart problems 10 years from now."
So....I do my drip bag, and if it takes over an hour, I'm fine with that. I did notice that the first time I had an infusion, the hospital did it over a 30 minute time period and my heart wasn't happy!!
Hey, beachcomber, and others who had heart issues...how fast were you infusing?? Just curious.
Take care all...what a good discussion! Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
CalifoniaLyme~ Thanks for posting again, and encouraging those of us who have lyme to hang in there with the treatment.
I will definately question my doctor about he co-infections. I have tested negative for those, but we will look at the symptom list too....
Blessings....
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Timica:
I started my infusions in the AM for 30 minutes before work - I was rushing. Eventually, I figured out that doing them at night for an hour worked so much better for me. But, I have fallen asleep in my chair while doing it. Never had a big problem with the blood coming back into the tube while asleep, as long as the bag was still above my head. No air either. Not sure about letting air into the bag, was told never to do that.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Thanks for your post Beachcomber. I asked the visiting nurse yesterday about infusing while dozing and she said that even if the blood were to come back into the tube, it would not be a great amount, and would stop at some point (good thing, huh? )
It does seem like infusing slower is better; as you realized too.
Thanks for the wishes to hang in there...I'm trying!
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Hi!
Just wanted to add my two cents about Rocephin.
It's been the ticket to survival for me!! It took several months before I began to feel better and it was a trend rather than instant improvement one day.
The good days became more frequent and the down days not as bad.
I have been using Zith plus Plaguinel along with it.
Good luck...it takes time. I was sick for many many years and had no idea that it could be Lyme.
I too would never have believed it to be Lyme if I hadn't had the bulleye....I may have given up way before I started to get better.
Healing smiles....lightfoot
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Hugs to all you IVers. Let's get well!
![[Big Grin]](biggrin.gif)
![[Eek!]](eek.gif)
![[Wink]](wink.gif)
![[bow]](graemlins/bow.gif)
, I'm sure Pocono wouldn't mind me sending along our thanks for being the one in front with the flashlight so to speak, so we can help each other around this maze. (We promise not to throw any Gatoraid on you when we're finished either...but would be happy to buy the pizza and beer at the awards ceremony...there will be trophies right? ![[lick]](graemlins/facelick.gif)
![[woohoo]](graemlins/woohoo.gif)
![[sleepy]](graemlins/sleepy.gif)
for I could not be sure that the medicine would not all drain out and then the blood start coming back in the line! The one time I did let it drain out, I was sitting at the computer typing. I wanted to finish what I was typing, and so didn't disconnect right away. Soon, there was blood coming not just into my line, but the other line as well! 
Printer-friendly view of this topic