posted
Watch your hemoglobin and hematocrit. Mine slipped so low I almost died - AND it was being observed by numerous doctors... Unfortunately, all the doctors did was watch the levels plummet.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
I have been on Rocephin for almost a year and it is the only antibiotic that helped with my neuro symptoms. I have had no problem taking it.Hope it works for you too, Good Luck
Posts: 8 | From South Florida | Registered: Aug 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Rocephin really helps some and others not so much, kinda' feast or famine. Keep an eye on your gall bladder, actigall is often prescribed with rocephin. It's also notorious for driving Bb into cyst form.
Generally, rocephin is used to bring down your overall bacterial load. It can often take 8-12 weeks to notice any improvement on it but then again everyone is different. I'd urge you to take milk thistle to help the liver process.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Watch for gallbladder troubles. If you have an attack, you will know it! Will you be taking Actigall with the rocephin?
(edited to correct med name, another lyme brain goof)
[ 12. August 2006, 04:11 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
My LLMD required a gallbladder ultrasound prior to starting the rocephin. And monthly gallbladder ultrasounds while on it. I was also on Actigall, to prevent gallbladder issues. I had no gallbladder issues while on 6 1/2 months of IV rocephin.
It took 4 1/2 months of IV rocephin for me to feel in the land of the living again.
I also had to have monthly blood cultures drawn from the picc line to check for infections in the line. One of these cultures caught a fungal infection in the line, so it was pulled.
I had weekly blood drawns from the picc line to monitor bodily functions.
Infuse slowly....I took about an hour to infuse. My heart was happier that way.
Good luck.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
the toughest part for me was putting something over my arm EVERYTIME I took a shower. It was such a pain because I like to take one everyday. I wore an ace bandage covering the site at all times and wore two when I took a shower. I also cut both ends of a large ziploc bag and used hair scrunchies on both ends to keep it in place while I took a shower. Perhaps others had better ideas.
Posts: 547 | From Maryland | Registered: Mar 2005
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posted
A couple of things that helped me--if you get pain in the middle of you, at the bottom of your rib cage, and wonder if it is gallbladder, drink the juice from a fresh lemon. If it is relieved quickly, it is likely gallbladder. My osteopath was able to help me keep my gallbladder and liver going so as not to have additional problems.
Second, my method of covering my arm was to use a veterinary glove (used for pregnancy checks on cows,or other similar uses). It is made of the material of sandwich bags, but a bit thicker, and is a long-sleeved glove which goes to the shoulder. A couple rubberbands around the upper arm, and it is fairly waterproof. Obtained at the farm store, they cost aobut $10 for 100 gloves. You can usually get 2-3 uses out of a glove before it is shot. Best wishes. Jen902
Posts: 23 | From USA | Registered: Feb 2006
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posted
I was also on actigall (preventatively) and monthly ultrasounds, no GB problems -
Tho when I started cleansing the GB/liver with alternative methods after IV, I did get allot of small stones and "sludge".. so I suggest maintainance organ cleansing you can do while on it (milk thistle, lemon juice in water every AM. things like that that you find are safe done dilligently) and also plan to cleanse after.
Also -
Xero sox is an excellent, heavy duty, you can shower - bathe - swim in it - arm cover. Keeps the site bone dry, and you don't have to worry or wrestle with other stuff.
- get a couple of epi-pens from doc, just for extreme safety should anyone have an allergic reaction - a heatpad for after the pic lines are put in -
We made good use out of getting one of the big rolls of the arm cover elastic/cotton tube stuff from Doc's office (it has a name that evades me) - I liked that better than making our own "sock" covers, because it is thin and snug and it felt "cleaner"..
I was taught how to do the dressing changes (sterile tecnique), which helped allot because that way at any sign of skin irritation it could be changed, also it felt better to me, than having different hands on the site every week..
Infuserve America in Florida is a fantastic company should you have to buy meds or supplies yourself at any point. They charge wholesale for supplies, and even if you get the Rocephin covered elsewhere, you can send it to them and they will premix and bag it and overnight it to you - or you can just get supplies.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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char
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Member # 8315
posted
Jeff,
You will need a place to keep your infusion supplies organized and available.
Like some small and medium size bins for the packaged tubing, alchol prep pads, sterile gloves, etc. We put our supplies on a cart with wheels. I liked to tuck it away when we weren't using it.
Also, a couple of trays to set out the items needed for that day's infusion.
We had 2 in our house do IV abx at the same time and there is an economy there.
Mo especially thanks for the xerosox. I need to take daily epsom salt baths, they help my pain tremendously, and I was worried about it. Also, I love to swim. It sounds like a wonderful solution instead of fooling around with plastic bags and rubber bands etc etc.
What I don't understand is that the doctor wrote orders for home health to do this. But they haven't contacted us and the LLMD is on vacation.
Oh well . . . patience. It's a marathon.
I went on the internet and found my health insurance will not pay for rocephin, but I can buy the generic @ $1300 for 90 days. That's not bad. It used to be $100 a day.
Will we have trouble mixing it, or will all the supplies be clear on how to do it?
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Do you know where you are getting your supplies, what kind of bags, connectors, ect?
Mixing is easy - you just have to make sure you have all the right model "parts" which work together between med vial and bag.. initial organizing of this.
Don't know if you will herx - Rocephin turned out to be effective for us on the initial neuro-load of Bb. We both started out with major herxes, true Jarish-Herx reaction, which I believe always co-incide with the beginning of a new med that is killing infection - I believe the "monthly" or periodic episodes are really flares or other related issues in the body, not "herxes". If you have the initial Jarish-herxheimer reastion on Rocephin, that will be a pretty good sign it is doing something for your strain of Bb.
Here's to feeling like you were hit with a mac truck I did, and my brain started coming back after that long initial herx. My son had it even rougher than I did, much more so.
PM comin' your way as well ..
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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1. As many others have said, watch out for your gallbladder. I lost mine.
2. Don't run the IV too fast. I had a reaction (nothing too terrible, mostly trouble breathing and feeling generally weird, but a bit scary) when I accidentally let it run too fast. My LLMD eventually had me run it over an hour.
3. I have a port in my chest, and am not sure how the routine works with a picc line. But...don't get complacent about the routine!
Several months into it on a Friday nite, I was talking to a friend and not paying attention when I infused.
I forgot to use the saline and heparin and didn't realize it until I had de-accessed my port. The infusion company wouldn't come out and told me I couldn't wait til Monday to flush it. I had to go to the emergency room on Saturday where they took more than 4 hours to do the 5 minute flush!
4. Re: herxes - for me, neuro symptoms I'd never had came out, e.g., mild hallucinations, nightmares, sleep paralysis. Weird!
Good luck, I'm sure you and your daughter will do great!
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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posted
suggestion due to memory and other problems which may worsen:
write out step-by-step instructions on a separate piece of paper.
have this instruction sheet in front of you, at hand when you infuse. Usu. infusion companys provide literature/instructions. have these at hand as well.
follow the order of the steps; e.g. heparin and saline. you may need this if cognitive symptoms are severe enough. if necessary think aloud when following steps.
reason: i actuall got confused as to the order in which to do the heparin and teh saline.
years ago, an anxious lymie came on board and either said she used the heparin and saline in reverse order.
in case of... have emergency room number of 3 hospitals on instruction sheet.
try NOT to be alone when you do this. Have someone with you, before, during, and 1-2 hours after infusion, just in case.
Posts: 2708 | Registered: Feb 2005
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timaca
Frequent Contributor (1K+ posts)
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posted
I would not count on swimming, even with a xerosox. You have to keep the line clean and dry or you can get issues. Mine got a fungal infection somehow....maybe from the shower, maybe the hot tub, who knows? Maybe from the air.
You might get away with getting in a pool and standing near the edge with your arm out, but I would not swim with it.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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My son will be starting IV Rocephin soon. Hopefully this week. He has had hallucinations in the past and anxiety from the Lyme. I hope this doesn't all get to bad with a herx. The bicillin was hard fro him to handle so I hope this is tolerated better for him.
Jeff.. Good luck!
Posts: 488 | From NY | Registered: Oct 2004
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5dana8
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posted
Ask your doc about taking something for liver support,
and make sure to eat something substancle before you infuse.
Also, at all costs, keep the pic line dry. Even if you think it may have gotton wet have a dressing change. Limit sweating, if possible.
And last, make sure she' taking lots of pro-biotics. Spacing at least 2 hours in beteen infusion & meds.
Good luck Jeff and hope your both feeling better soon
make sure to talk over everything first with your LLMD
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
veterinary supply stores have gloves that go to the elbow. see about these and how to use with the i.v. and shower, and other activities.
milk thislte, while good for the liver, has been found to be problematic when taken shortly before, or at certain times while taking certain medicines, and/or for a certain time period after having taken teh medicine(s). i don't know which these are. consult some pharmacies, and your doc before trying this.
Posts: 2708 | Registered: Feb 2005
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posted
I am hearing that neurocog and neuropsych issues may temporarily become worse. Yes? no?
I am concerned about the sweating ... I take a HOT epsom salt bath everry two, sometimes two. They really help my pain and mood. What am I gonna do without my baths? whine whine whine
Ok I won't swim.
Do you all recommend morning infusions or afternoon or evening?
I will write down the instructions, have emergency info ready and be ready for the worst.
I think the worst will be my daughter. It will make her psychotic and/or crazy with pain. But the only thing to do is go forward ...
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Jeff~ Everyone is different with regard to my herx. I tend to herx on day 10, 11 or 12 after starting an antibiotic. On day 10 I felt awful...just for one day. On day 27 I also was very sick...was horizontal most of that day. Interestingly enough, apparently 4 weeks after starting IV rocephin also tends to be a bad time (Dr. B states this somewhere...maybe in his guidelines).
At any rate, I was much sicker with my herx on doxy than on IV rocephin.
You may still be able to take your hot bath...just experiment and see. I sat in a hot tub at least twice a week while my picc line was in. I needed the relaxation it gave. I don't sweat much though, so it didn't affect my bandage much. Sometimes it would peel away a bit, and I'd add a bit more tape to the edges to hold it in place.
Now, whether or not the fungal infection that I evenutally got in the line came from the hot tub or where it came from I don't know. But, I would try hard to keep the hub of your line dry. Mine probably got wet from shower water on occasion or steam from the hot tub...don't know if that is where the contamination came from or not...who knows? But, I enjoyed my hot tub...they were necessary. I simply floated my arm on an intertube.
Glad you won't swim. Good boy.
I infused in the evenings....often I started while cooking dinner, or certainly while eating it. I took my time infusing...at least an hour...probably an hour and a half from start to finish (gathering supplies, ect). In the evenings I was sitting eating anyway, so it was not too inconvenient to do it then. I even did it once on an airplane...not really recommended, since it got the pilot involved. As it turned out, he had had lyme too, and been on IV antibiotics as well...so it turned out to be a good thing. He has gotten well, well enough to fly planes!
Do not freak out if you see blood coming back into your line after you infused. I learned the hard way that when the last drop goes from the line into the tubing that is attached to you that you disconnect the rocephin bag and line. I sat typing once, next thing I knew, my blood was coming out of me! The rocephin bag creates a vacuum that pulls blood out....so disconnect when it finishes infusing.
Good luck. Your daughter will do fine. You be positive. She'll follow your example.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Glad "Press and Seal" works great for keeping the insertion site dry. That's assuming it is in your arm. If you have insurance make sure they do what the say. Many of us are receiving denial letters even after intial approval.
Posts: 5 | From NC | Registered: Jan 2005
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posted
There are many posts here detailing special covers made for you to wear over your picc line while you take a shower. I'd just search for picc Lines and you will find some.
Good luck with Rocephin, It is one of the Lyme Allstar ABX. Especially with neuros. And plz plz plz, heed this info, TAKE ACTIGALL. Don't take any chances. My Doc Perscribed it along with my rocephin right off the bat. 300mg a day.
Posts: 31 | From Los Angeles, Ca | Registered: Oct 2005
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Hi JeffM, when I started IV Rocephin from about the second to fifth weeks I felt worse, neurocognatively and just more exhaustion and malaise. Now after about 10 wks, I feel about the same as when I started, maybe a little better.
I've read that in some people it takes time to see an improvement and my llmd was planning on around a year of Rocephin, so it might not help right way! Hopefully it does for you and your daughter though.
Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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