posted
Took first dose in two weeks. Felt great most of the day, alert, energetic, good thinking. Then, as the night crept in, increased pain and this feeling that my whole body is pluggd into an electrical outlet. Buzzing, aching. So bad I can' sleep.l
Did the rocephin cause it? The only other things that changed were (a) colonic; couldhavesirred up toxins
posted
Wondering if I'm herxing again! Yesterday I felt a stabbing pain in my armpit! It literally felt like someone stabbed the center of my armpit with a nail and kept moving it around. It throbbed a few times then disappeared. A few minutes later it would happen again.
I changed my clothes - that shirt didn't bother me all day...and it was a comfy old shirt - but it happened again! Then it stopped for a few hours and started later in the evening.
The pain is pretty intense though it throbs instead of being constant. It's a bit comical to me though! Why my armpit and not another joint or muscle????
No wonder people think Lymies are crazy! Sometimes I think I am crazy too because the list of my aches and pains makes no sense at all!!
As an update, the Allegra has taken away 99% of the itching but it took a week to get to that point. Still no news on the insurance appeal. I'm getting better and my lab work shows that so I'm hopeful it will be approved. If not, the upside is I'm getting better. There's no price you can put on that!
Hope all of you are having good days with minimal herxing!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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Karen, I had these stabbing pains through a large part of my tx. I dont know if they are lyme or herx or both. Mine happened mostly in my hips, but also in my handds, arms, legs.
My herxing now is this dull, constant ache. And after a month being off painkillers, it's backc on tramadol and morphine. yuk
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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That is so interesting. I just asked my LLMD whether I should also be adding flagyl to this mix (rocephin + biaxin + flagyl) and she said yes, if you can tolerate it. I continue to be worried about the theory that rocephin drives the bugs into cyst forml I want to bust the cyst formm, or have them come into the L form, so the rocephin and my immune system will work.
So is anyone here taking flagyl also? I actualy want to ask this in another thread.
As for my daughter, all I can say is the medicine is getting in her regularly.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Hi everybody. I am officially a rocephiner now. its been four days (since Wednesday am) since I started but did not write bc there was not much to report. In fact, I was feeling better than I had in ages.
But now I feel like I am starting a herx from hell. Is this too early for a herx from the rocephin? The doc's assistant said it would be about 3 weeks before anything really started to happen.
My body feels so inflamed from the inside out and hurts/aches so badly. Skin hurts to touch and is hot, but I am cold. And my head aches. I woke up with a stiff neck and back muscles this a.m. and tonight it progressed to this whole body thing. The past two nights have been a little achey and inflamed starting in the evening, but this is magnified about 10 times.
I just took my temp and it is 99.6 and hour after 2 ibupofren and some white willow. I normally run low (98.2 or so).
Is this sort of normal for early stage rocephin?
[ 24. September 2006, 12:52 AM: Message edited by: luvdogs ]
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Thanks Jeff. Were you off abx when you started rocephin? Or did you go straight from another abx to rocphin? I took 1 1/2 weeks of between meds, and I feel like the chetes had started coming out a few days before starting rocephin. So now maybe thye're being slammed.
I duuno, but am feeling better this a.m. - just a llittle ferverish. I am sure the aching will start. Overall though, it doesn't sound too different but what you guys have been going through. I don't know about the fever part though.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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luvdogs, I had a fever with one of my herx episodes. It lasted for a few hours with the fever, sweating and every joint in pain. Later when most of the pain subsided, I still had a low-grade fever for the rest of the day.
I think that any symptom can be part of the herxing. I keep a journal updated daily with any symptoms I experience. I can't remember anything and there have been so many weird symptoms that I simply can't remember!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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Thanks karen. it soiunds like what I am going through except I think the fever gets worse into the night. This a.m. was only 99.2 and then I was sweating through my clothes all day. I took my dose at around 2 or so and by 4 the inflammation, skin burning, pain and fever started again. (also regular herx sx like stabiing needles, twitches etc.)
Now the fever is at 101 but no sweating. I have taken a few ibupofren, so I don't know what it would be without that.
I am praying that there is no allergic reaction. But there is no rash!
How long do the rocephin herxes tend to last? or are they the constant types? I see that everybody is aching all the time, but is that aside from their big herxes..
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
I think how long the herx lasts and how bad it is depends on what your symptoms have been, how long you've been sick, etc. It will vary with everyone.
In my case, I've only been sick for a year and my symptoms were primarily joint pain and muscle weakness. I react quickly to abx, so my herxes have not been severe except for the one night. Other than not being able to walk fast without getting out of breath, I feel great...at the end of week 5 on Rocephrin.
My doctor said that typically patients don't begin to really feel better until about 6 months after the IV treatment. His policy is to treat for 56 days and then wait to see how his patients respond over the next few months. IF the symptoms get worse, he'll re-treat. I'm praying that 56 days will be sufficient to eradicate those spirochetes!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
I'm heading to my doc K today. Asking her if she would order a scan of my gall bladder.
To update, I have been herxing for about a week and half now and part of the herx are waves of intense abdominaldistention and pain, nausea and mucus in stool not diarrea.
So my ID doc said unless it was frank diarrea to not worry but of course worrying is my full time job now so I need to have it checked out.
So happy to hear the good stories here about healing on the IV. I also love the idea that 56 days of IV may be enough. Karen, next time you see your doc, ask how many people have to go back on it and how many are done.
Also, does he use orals after the IV and for how long?
I know cysts can live dorment for up to 11 months so I hope to have abx on board at least that long maybe longer. I am almost at the ninth month now and feel like hell (although better than I was at my very worst.)
Blessings today! Kim
-------------------- We are spiritual beings on a human journey...
I am doing better. Just the fatigue is still the same. Can't go for very long and then I get tired.
I had drenching night sweats, and today joint pain. This happened to be last month too. I think it is a herx.
I am going to try and get out a little more this week. I see my llmd on Sat. I defintely want to do physical therapy this month. The last two times I saw him he said no. I might stomp on his big toe if he says no again.
posted
Jeff, I am searching for where the heck I read that but I can't find it...Sounds wrong since people are sick for much longer than thtat sometimes.
Maybe because the ketes regenerate every 28 days and there will always be some deep in the brain and organs unaccessible to antibiotcs so the 11 months could keep starting over each month...but who knows, I will keep searching for this info.
BTW horrible experience this morning at my llPCP doc K. (She was the one who kept me on biaxin forever even after I developed new symptoms in my bladder and numbness in my legs..)
I asked a friend llID and he put me on the IV. So anyway, I met with her this morning to ask about a GB scan and she got really mad! She said "I am not Dr. S's intern"..."You never asked my opinion about the IV so you need to go see him for your treatment questions"
I was shocked. I always liked her and brought her updates from the newspaper on lyme. She just freaked out. So I asked her when I SHOULD call her since she was my PCP and she said "Oh do't put me in a corner!" (She wouldn't even offer advice on a good diet to preven sludging in the GB...
So forget it. I made an apptmt w/ Dr. S my friend and he will also be my PCP.
I am not having bad GI pain today so I will wait till the next flare to call him and ask for a scan.
Just really makes me feel alone with this...
Thanks for listening all sorry so long.
Kim
-------------------- We are spiritual beings on a human journey...
posted
An update after 2 days of increasing temps (102), burning skin, shaking freezing chills and drenching sweats -
My doc wants me to go off rocephin for 2 days. Then he wants me to go back at half dose for two days and then try full dose again.
I am wondering if the heparin is getting the babesia and that is why I am having the sweats and freezing chills and temps... I might try cutting back on the heparin dose when I increase the rocephin to isolate things and see what is doing what.
Are most people doing the heparin with the rocephin? I know it is not a mandatory part of the tx.. just curious.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Wow, Kim, yuk. She got a little defensive. Good choice to switch.
Luvdogs: Wow. Interesting reaction. I wonder why. Taking a small break sounds like a good idea. I don't take heparin because I have a gershong picc and heparin isn't needed. I can't imagine how heparin would treat babs -- isn't heparin just a blood thinner?
So I have my herxing @ day 26, 27, 28, 29 ... For a few hours after infusion I ache. And I added flagyl, 1500 mg / day, starting yesterday. I wonder if it will make me feel worse.
We got all our supplies and rocephin for 90 days so we are set.
Medi-cal (medicaid) is paying for my daughters! That was a surprise. Home health and everything! Now we will see what my insurance is gonna do.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
There is a thread currently running on heparin treating babs. I ran it by my docs assistant when they called and told me to stop the meds. She was like "Oh my God, I forgot about that connection... we need to pay attention to that!".
So we will see. I am going to experiment a little and try and isolate the rocephin from the heparin, at least in the beginning when I recommence. I would be nice to know what is doing what...
How;s everybody else doing?
Hey, also, does anybody else with the PICC sometimes feel an ache in their chest where the line goes in? Last night I moved the wrong way and it hurt so bad. I am concerned my nurse yesterday pulled the line out a bit too far when changing the dressing and dislodged or something? I think I am being crazy about that, but she did pull it out about an inch by accident and never reinserted it. And now I do have a slight ache in my chest on deep inhalation right where the line goes into the superior vena cava area... I think I'll do a eparate thread for this. I want to know if I should be concerned and don't want to call my docs office and bug them about stupid stuff..
Posts: 589 | From Rhode Island | Registered: Jun 2006
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Wicked headache tonite. You know I never thought about the heparin and babs connection.
Luvsdogs I also had the drenching night sweats. This has only happened twice. Once each month I have been on rocephin and always in the second week of the month.
The day before and the day I had my line put in I had a low grade fever. I no longer have fevers, however my legs were hot the first four days of treatment.
I think I am herxing again. My legs are very sore especially the back of my knees.
KP what's going on, aren't you getting close to 56 days.
Jeff lets us know about the flagyl.
Posts: 175 | From Pa | Registered: Aug 2006
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posted
Maybe its just the Lyme causing the sweats.
2 days off rocephin and I was feeling great since yesterday evening, but the legs aching and inflammation is starting up again. Also some other Lyme sx. Da..ned if you do and da..ned if you don't! Now I feel like I need to go back on cuz I am relapsing!
But no temp. Its actually low - 98.2
Maybe its leg aching day for the rocphies...
Posts: 589 | From Rhode Island | Registered: Jun 2006
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I just went and read past posts to see what people have gone through, and I read that you were having your line pulled and then going on bicillin? I read as many as I could and that is where it seems to have ended.
Are your herxes any better? You were going through hell back there! The leg pain that you described is like what I have now. I can't sit, I can't stand, I can't do anything... it all seems to make it worse! I am thinking of a hot shower or my infrared lamps. Am tring to cut back on ibupofren. Don't know how to deal with this pain. It is unlike anything I've ever experienced (except for when I first became severely ill with Lyme)...
I just did lemon water... blender etc. but am trying to figure out ways to function and get through this wihtout resorting to heroin!
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Kim, I infuse the first thing when I wake up . . . @ 5 or 6 a.m. And then I go back tot sleep for an hour or two. The rocephin tends to make me nauseous and achey for a couple of hours right after. I also some days where I feel pretty good, and other days where I ache most of the day. The last two days I haven't had to take any pain medicine, and have been looking for a part time job. But the three days before that, I did have to take pain medicine. I think I must have terrible herx's -- people talk about their herx's, but mine are often intolerable.
My thinking is so clear, and memory is back, with the rocephin!
I started the flagyl yesterday. I will take it for a while, like a few weeks, then stop, then start again. So far so good.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Kat, You are right that my 56 days is coming to an end...only 20 days to go! My lab work indicates some great numbers so I'm hoping the numbers stay that way after I stop the abx.
luvdogs and jeff, have you tried infusing at night just before bed? When I started I was infusing around noon each day but I found that I became very sleepy and would have to nap in the afternoon which meant NOTHING ever got done!
Then I slowly moved it to evening and that has worked so much better. I do so much running around with after school activities that I'm often not home until 9 pm. I have much more energy this way to get things done during the day though I still nap on occasion.
To anyone who asked me to ask questions of my dr: I haven't actually met with my dr since the original PICC line date. I see a nurse every week and saw a PA once (not my fav). I think I'm supposed to see the PA next week - I'll try to write down all the questions!! My brain fog is clearing but old age is creeping in!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Does anybody have any experience with the best pain med for this? I had the worst night last night and nothing semed to help it. The pain was /is unbrearbale. Starting inh my legs and working into my arms, Arms/shoulder nerve pain I guess and I don't know what the rest is. Plus the neuro electriical sensa.tions zapping throughout body.
Ibupofren didn't seem to reallly make a dent, even at very high doses. I took klonipan and ativan and they might have helped a little. I was ab;le to fall asleep on high doses of those - but only for a few hours and then had to take more,
I am worried about my liver, but the pain could kill me too, it feels like.
This is after 2 days off of meds. I should infuse today but am scared. I have never experienced such unbearable pain before in my life.
KP _ Are you using heparin? I am definitely going to start to infuse at night - and am thinking that half dose, every other day, might be best for me. Otherwise I don't think I will make it. (Esp. when the fevers start again)
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
I'm sorry you are having such incredible pain! My pain was intense when it only affected my joints. When it went into my muscles it's been more of an on again/off again throbbing type of pain. There are at least a few seconds or minutes between pain (trying to be optimistic!).
No, I'm not on heparin. The type of PICC line I have doesn't require the heparin. I just flush with saline, infuse and flush at the end.
I am on 2 grams of Rocephin, Azithromycin every other day, 10 mg of Prednisone (almost ready to go off of this one), Milk Thistle (for liver), Allegra (for itching when infusing), and Advil as needed.
The Prednisone was prescribed as a last resort back in May because I was in such pain and unable to perform basic tasks (like dressing myself!). Although steroids and abx are usually not good combos, the LLMD thought it was best to remain at that level for the time being since it controls the inflammation and pain.
Have you tried heat for your pains? Sometimes a long soak in a hot tub can help...or a heating pad. You could also try Turmeric and Bromelein. They are herbal supplements that work on inflammation.
My rheumy didn't believe me but within 20 minutes of taking this supplement, the achiness of whatever was hurting was significantly less. It didn't take the pain away, it just made it tolerable. This supplement is also beneficial to the liver and digestive system.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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I wrote to my doc last night in the throes of the pain. I was hoping to reduce to 1/2 dose every other day. Between the fevers, sweats and pain, I didn't think it was looking too bright for surviving this for an extended period of time. I think I needed morphine last night.
It is better today, but I am very week and all sort fo sx are creeping in like mad.. msotly neuro.
Doc emailed back that they want me to go off roceph and are going to put me on IV zith. They are concerned I was reacting to the meds, on top of the herx.
I am happy, at least for now, but I feel like I could have done it, if we appraoched it a slower way.
SO, I am no longer a "rocephie"! I am sorry. But I sure was a nuisance on this thread, so now you guys can kick back and relax.
Honestly, keep up the good work guys. You have a lot of strength to be able to get through this. It is worth it to have your life back, but I felt like I could have died in the process. I hope the zith works well. I ahve been on plenty of oraal zith but never IV. I am not completely saying good bye to the rocephin yet. I am determined to make it work someday...
Thanks everybody!
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Hi Guys, I was able to paint for a few hours today (although I have really regressed since treatment...nobody will buy them...)
The nausea is still with me although bearable (not having the cramping grinding pain anymore thank Gd)
I have noticed this spacey depressed feeling. Kindof like I am angry, sad, not motivated. (I'm sure i'm not alone with this) "To the poor house"...this is prob the drug like you say...
Luv, so sorry about this horrible pain.. I find two cups of epsom in a nice toast tub helps my pain somewhat (or at least makes me very relaxed)..the Mg in the tub can relieve pain.
I suffered in the early months with severe herx pain and wanted to run my car into a tree. The docs wouldn't give me more than advil and tylenol w/codiene. At the ER I got percocet and it made me more sick...
Some have had pain relief with antidepressants like cymbalta or others that help with inflammation as well as seritonin. Others have used Tramadol...(I don't have connections to get my hands on the good so I just suffer like an animal in pain.)
I used to keep reminding myself that it would pass cause usually in a day or so even the worst pain would lessen...(then a new one would pop up)
I also had some discomfor around my chest where the line was...it went away after a week or so.
Jeff, I give you credit looking for a job the same week you start flagyl...(you must be an optimist )
Karen, glad you are running around doing errands...good to know that some folks are functioning somewhat with this treatment.
Kath--how is your headache today? Still sweaty? Hang in there..you are still early in treatment and patience is the only thing we got.
Hoping to go to dr. j tomorrow...I'll keep you posted.
kim
-------------------- We are spiritual beings on a human journey...
posted
I am now at week 6, and I am afraid to type this but today I had a wonderful day. I was out all day long with a little fatigue. I know I will sleep good tonite. I felt normal, well almost.
Tothepoorhouse - I notice rocephin really effects my mood. I feel very depressed, and symptom wise things are getting better. This is very strange. In a way I can't wait to get off rocephin to see how I will feel.
Luv - just because you are going on zith doesn't mean you are dropping us. Wow our symptoms are very much alike. I think alot of my pain is nerve pain. I am still on rocephin I decided to keep my line so I have had no break in treatment. I am paying out of pocket for this month. Last night I woke in the middle of the nite with leg pain. My legs and hands are hot to touch. I thought today was going to be a killer because of last nite. My shins were very swollen prior to rocephin. Ask your doc for Zydone it is a pain med. When my pain gets so out of control that I can't take it, I take one Zydone. I wonder if we have babs, because of the sweating thing.
Human Being - I hope you have your appt tomorrow. I think that ultrasound of your gallbladder will really help answer alot of questions. Hang in there.
Karen - it is so awesome that you can be productive.
Jeff - good for you trying to interviewing for jobs. The only place I could get a job right now is at a sleep center.
Praying for better days. Taking it one day at a time.
posted
Oh God, do you think the flagyl will be that bad? Maybe I should wait about working. I could only work one or two days a week. But I am going nutsy with boredom, now that I can think clearly. It is true that the last time I started flagyl, about two weeks into it I was so depressed. So I stopped. Oh well, we will see.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Here are the rantings and ravings of a frustrated lymie.
My PICC line started "leaking" yesterday during infusion. So I went to the hospital that put it in. They would not see me without doctors orders. After three hours, I said BS and left.
I called the home health nurse, who was also cancelled by insurance, to ask her how bad this problem was. She is good -- she listened and told me to tape it up, they often have these small drips ... So I did that.
Today at infusion time, while clearing the line with saline injection and drawing back blood to see, it leaked all over me, including the blood. Not a good sign.
Went to PCP to get an order for them to look at the PICC line. Went to the hospital. Hospital won't do it because it was my LLMD who ordered the PICC not my PCP. Try to contact my LLMD, she's out of the office. I call, the hospital calls -- the lines are busy or there is an answering machine. Two more hours go by.
So I get in the car and drive to her office. They have a page into her, and say the orders should be at the hospital soon. I will go back. In a few minutes, after I have calmed down.
I used to be such a patient, rational person. This insurance crap is enuf to send annyone over the edge. I think I might be too anxious about new information in which I am not previously competent, like IV lines, PICC lines and all this HMO PPO POS crap.
So now I bet I will spend all afternoon at the hospital, just trying to get this problem with the PICC line fixed and so I can move on.
Why is this so hard?
OK. Venting over. LOL
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Bouncing back from the dead here. Thats Kat for the pain med advice. Jeff also had some good ideas and I need to have one, or both, lined up for next time that hits. That is not a human sort of pain. It is just plain deadly.
Jeff, what a crappy day!!!!!!! I am so sorry you are going through this. I hope it is all resolving itself. Did you start the flagyl yet? That would be a nice time for all of this to hit. Let us know how it all works out.
Kat, I know! And thank you I wish I could have stayed on it. Now they have taken me off abx until further info eg zith being approved by insurance co. I am sure it is expensive as hell.
Since my pain crisis subsided, I started to feel better, but infection started to brew in my face area - can't touch cheekbones, forhead painful, swollen painful ear glands, eyebrows painful etc... and some weird Lyme neuro sx. I feel like my body is in a very vulnerable place right now and the Lyme could start creeping around. I don't want it to find new residences, as it feels it is trying to.
So, when I heard that I might not be going on the zith until next week (wed or so), I put myself on old faithful biaxin and plaq. I thought some of the plaq anti-inflammatory would help too, since I am still in a bit of odd pain everywhere (arms legs, tendons and muscles. plus neuro).
So now I can patiently wait to get on the zith.
I feel bummed that I failed on the rocephin. I was hoping it would be different than 11 years ago. it seems like it was serum sickness, but who ever knows. The thing that really makes me think that was the temps just kept getting higher, and the sx worse. I think I would have had a temp of 104 or so had I not been on the painkillers.
Anyway, I miss being in the group, but I'll drop by and say "hi" every now and again. But I will be watching to make sure you guys are living out my rocephin dream. And to make sure you're hanging in there.
Keep up the good work! Its going to help you so it is worth this hell,
Sara
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Well, it looks like that leaky PICC was a blessing in disguise! Congrats on the new PICC. I bet you feel a little bit better now - aside from being ****ed at all of the red tape you encountered today.
Sleep well with your new friend.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
Jeff, you mentioned going out to drink...you may want to rethink that while you're undergoing treatment. My LLMD gave strict instructions to avoid all alcohol during treatment. Apparently the spirochetes breed on alcohol which could be detrimental to your healing process.
I don't want you to feel worse!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Thanks, Karen. I know about the not drinking thing. But every once in a while I have to break out of this prison and do something I am not supposed to do. I drank zero alcohol for the first 1.5 years of tx. Now I will occasionally plan and have a party or something to go to and I will drink. Starting today, another long stretch of no alcohol. I start flagyl again. Yuk.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
As of today, I have 14 days left! I can't believe I'm almost done.
I was a little worried this morning that they were going to put me on hold for a few days. I've developed a cold with a lingering cough that keeps my family and most of the county awake at night. SO I had to go to my primary for some good codeine cough syrup!
I initially covered up my PICC line in hopes the doctor wouldn't ask any questions. But he did - he asked how I was feeling since I spent months harassing him to help me. I told him I an 6 weeks into IV treatment and am feeling better than I have in 6 months. He was surprised but happy for me.
Then I pulled out my spreadsheet that lists the lab results from all my blood work since last November. When he saw the progression of the numbers from dangerously high to nearly normal, he said "That's amazing! Most people don't respond so well."
I was really nervous that his response would be that I should stop the Rocephin until the cold was gone...but I think he was convinced that I'm truly getting better through this treatment! YEAH!!!
Off to infuse and get some of that codeine. I plan to sleep all night tonight!!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Karen, when you say 14 more days and you are done, what will you do next? How did you deetermine how long to take the rocephin? I now have a 6 month supply, and expect to take it all ... I also expect my daughter to be on this stuff for a year.
it is helping us both although today she had a meltdown ... 3 hours of rage ... poor kid, poor us
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Jeff, My LLMD only treats for 56 days as a standard treatment. I guess it also depends on how long and how sick the patient is. In my case, I responded very quickly to oral abx so he expected me to have a similar response to IV.
At the moment, I feel about 80% of what was normal for me. There are still some aches and pains, but if this is as good as I get, I'm thrilled. At least I can go upstairs to tuck my kids in at night as well as dress myself, etc.
I'm told that I will continue to see improvement over the next few months. If I suffer a relapse, he will prescribe another 56 days. I know he is bit more conservative than many LLMDs, but he had such a detailed explanation about various studies and statistices that I trusted him completely.
Although I never removed a tick, I'm fairly sure I was infected a year ago (this month!)when we were clearing our backyard to put in a lawn. I didn't get really bad until April so I guess that's why I didn't need a longer dosage? He may keep me on Azithromycin longer but I'm not sure.
How old is your daughter? That has got to be hard on a child to deal with infusing and picc lines.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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I am about 3 weeks into Rocephin treatment. I thought I was feeling better in a way -- good enough to go to a party Saturday, but I didn't last long. I had to go home when I could barely stand and my brain was crapping out on me.
Very strange. Usually I know when I shouldn't attempt to do something, but the way this happened took me completely by surprise!
I THINK I'm starting on a low dose -- 125 mg a day. I don't feel like I'm herxing yet, but maybe that's because my dose is so low? Can anyone else what dose you started out with, and did it cause you to herx?
My doc will probably raise my dose soon, and I'm just wondering what to expect.
Kalina
Posts: 18 | From Texas | Registered: Aug 2006
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posted
In the beginning I felt extreme fatigue immediately after infusing. And I had one night of terrible herxing...sweating profusely and every joint in my body screaming in pain. All along the way I've had some minor herxing...shooting or stabbing pains in various body parts.
I haven't had too many herxes in the past 2 weeks since I began to feel better. In my case, I've only had problems for a year...and only been REALLY, REALLY sick for the past 6 months. My LLMD said that because of that I was likely to respond quickly to treatment. (Although my rheumy told me the abx wouldn't help at all! He'll be getting an update real soon!)
I did find that infusing at night has helped alot. If anything was bothering me I could sleep or at least I didn't have to be in public pretending I was okay.
Karen (who has only 12 days left on IV!!!! )
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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Does anyone else have a reaction to the dressing over the picc line? I swear it drives me crazy with itching and burning.
You can tell when it comes off as I have redness and blisters. It's not the picc line, it's the tape doing it.
I told them at the start of the reaction I was having, so they switched it to what they called the "paper dressing". But it's the adhesive on both that I have reactions to.
I end up snipping as much of the bandage as I can all during the week to get air to the skin, but then it's time for a new one and BOOM! It starts all over again. :cry:
Posts: 867 | From PA | Registered: Jan 2006
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posted
Mine has only starting itching in the past two weeks. I think my skin is just wanting some fresh air!! They have used Tagaderm on me. My skin wrinkles from it which they are concerned about but I don't think that is causing the itch.
I think itching is worse than pain! I started itching from the Rocephin until they put me on Allegra. Thankfully that helped...maybe that would help with the skin too?
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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I figure I am almost in week #6. Things got worse during the full moon. Now they are a little better.
I still herx -- achey, tired, nauseous -- for about 2 hours after the rocephin. And I wake up with mild body shakes, until I eliminate the toxins.
Overall improvement: good.
My daughter: Also about 6 weeks. Feels it is making her worse. Feels crazy, emotional, more forgetful, bumping into things, and she is slurring her words. We are just telling her to hang in there. I think she might need a LONG course of rocephin.
How are you guys doing?
My PICC line itches -- seems to be the tape that covers it.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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quote:Originally posted by JeffM: Took first dose in two weeks. Felt great most of the day, alert, energetic, good thinking. Then, as the night crept in, increased pain and this feeling that my whole body is pluggd into an electrical outlet. Buzzing, aching. So bad I can' sleep.l
Did the rocephin cause it? The only other things that changed were (a) colonic; couldhavesirred up toxins
yes Rocephin can make your lyme worse but then you get better I had numbness get worse on Rocephin take Ursodiol 300 mg. it's to protect your gallbladder by DR. and their are side effects
Rocephin This page contains drug information on Rocephin. The information provided includes the following: what is Rocephin the possible side effects of Rocephin what happens if you miss a dose of Rocephin what happens if you overdose with Rocephin the most important information about Rocephin how to use Rocephin other drugs that may affect Rocephin what to avoid while using Rocephin
What is the most important information I should know about ceftriaxone? * If you are injecting ceftriaxone at home, your healthcare provider will give you detailed instructions on how and where to inject the medication. If you do not understand these directions, do not attempt to inject the medication. Contact your healthcare provider for further instructions.
What is ceftriaxone? * Ceftriaxone is an antibiotic in a class of drugs called cephalosporins. Ceftriaxone fights bacteria in the body. * Ceftriaxone is used to treat many different types of bacterial infections such as bronchitis, pneumonia, blood infections, bone and joint infections, meningitis, abdominal infections, skin infections, ear infections, gonorrhea, pelvic inflammatory disease, and urinary tract infections. * Ceftriaxone may also be used for purposes other than those listed in this medication guide.
What should I discuss with my healthcare provider before using ceftriaxone? * Do not use ceftriaxone if you have ever had an allergic reaction to another cephalosporin or to a penicillin without first talking to your doctor. * Before using ceftriaxone, tell your doctor if you have � kidney disease; � liver disease; � bleeding or blood clotting problems; � gallbladder problems; or � a gastrointestinal (digestive) disease such as colitis. * You may not be able to use ceftriaxone, or you may require a dosage adjustment or special monitoring during treatment if you have any of the conditions listed above. * Ceftriaxone is in the FDA pregnancy category B. This means that it is not expected to be harmful to an unborn baby. Do not, however, use ceftriaxone without first talking to your doctor if you are pregnant or could become pregnant during treatment. * Ceftriaxone passes into breast milk and may affect a nursing baby. Do not take this medication without first talking to your doctor if you are breast-feeding a baby.
How should I use ceftriaxone? * Ceftriaxone will be administered by a healthcare provider intravenously (into a vein) or intramuscularly (into a muscle). * If you are injecting ceftriaxone at home, your healthcare provider will give you detailed instructions on how and where to inject the medication. If you do not understand these directions, do not attempt to inject the medication. Contact your healthcare provider for further instructions. * Do not use any ceftriaxone that is discolored, has particles in it, or looks different from your previous doses. Throw away any unused ceftriaxone after the amount of time determined by your pharmacist or doctor. * Dispose of used needles and syringes in a puncture resistant container out of the reach of children. * Your healthcare provider will store ceftriaxone as directed by the manufacturer or give you detailed storage instructions if you are storing the medication at home.
What happens if I miss a dose? * Talk to your doctor if you miss a dose.
What happens if I overdose? * Contact your doctor or seek emergency medical attention if an overdose is suspected.
What should I avoid while using ceftriaxone? * There are no restrictions on food, beverages, or activity during treatment with ceftriaxone unless otherwise directed by your doctor.
What are the possible side effects of ceftriaxone? * If you experience any of the following rare but serious side effects, seek emergency medical attention or contact your doctor immediately: � an allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, face, or tongue; hives; or a rash); � rash, redness, or itching; � severe nausea, vomiting, or diarrhea; � mucous or blood in the stool; or � unusual bleeding or bruising. * Other, less serious side effects may be more likely to occur. Talk to your doctor if you experience � mild nausea or diarrhea; � yeast infection of the mouth or vagina; or � pain or tenderness at the injection site. * Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome.
What other drugs will affect ceftriaxone? * Before using ceftriaxone, tell your doctor if you are taking any of the following medicines � probenecid (Benemid); � a loop diuretic (water pill) such as furosemide, bumetanide (Bumex), torsemide (Demadex), or ethacrynic acid (Edecrin); � warfarin (Coumadin); or � another antibiotic. * You may require a dosage adjustment or special monitoring during treatment if you are taking any of the medicines listed above. * Drugs other than those listed here may also interact with ceftriaxone. Talk to your doctor and pharmacist before taking any prescription or over-the-counter medicines, including vitamins, minerals, and herbal products.
Where can I get more information? * Your pharmacist has additional information about ceftriaxone written for health professionals that you may read.
-------------------------------------------------------------------------------- * Remember, keep this and all other medicines out of the reach of children, never share your medicines with others, and use this medication only for the indication prescribed. * Every effort has been made to ensure that the information provided by Cerner Multum, Inc. ('Multum') is accurate, up-to-date, and complete, but no guarantee is made to that effect. Drug information contained herein may be time sensitive. Multum information has been compiled for use by healthcare practitioners and consumers in the United States and therefore Multum does not warrant that uses outside of the United States are appropriate, unless specifically indicated otherwise. Multum's drug information does not endorse drugs, diagnose patients or recommend therapy. Multum's drug information is an informational resource designed to assist licensed healthcare practitioners in caring for their patients and/ or to serve consumers viewing this service as a supplement to, and not a substitute for, the expertise, skill, knowledge and judgment of healthcare practitioners. The absence of a warning for a given drug or drug combination in no way should be construed to indicate that the drug or drug combination is safe, effective or appropriate for any given patient. Multum does not assume any responsibility for any aspect of healthcare administered with the aid of information Multum provides. The information contained herein is not intended to cover all possible uses, directions, precautions, warnings, drug interactions, allergic reactions, or adverse effects. If you have questions about the drugs you are taking, check with your doctor, nurse or pharmacist.
-------------------- I feel like their's corruption with some Doctors about lyme disease Posts: 23 | From Westchester NY | Registered: Oct 2006
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