posted
Well, my LLMD wants to start me on IV Rocephin now that I have IGENEX positive in.
In my heart of hearts i knew i would end up here at some point.
I am scared and welcome to any input/info from experiences.
What to watch for? What to expect? Does it really work? Any concerns?
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Cobweb
Unregistered
posted
Well- forgive me the self promotion but over in General you will find a long funny painful thread called Reporting from the IV Line-A Cautionary Tale.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I was getting ready to go on IV when my liver enzymes went whacko. In the meantime I saw the study about borrelia and mercury so I've decided to get that taken care of and work on co-infections before taking the step of adding IV. I may eventually end up on IV but for now, I'm putting it off.
I hope it helps you tremendously. CaliforniaLyme will hopefully be along to tell you of her experience. It really helped her a LOT.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I just had my PICC line removed last Friday (yea!). It was in for a bit over 6 months. Five months IV Rocephin.
I worked the entire time (not that easy in my opinion, especially in the beginning).
Had my line placed in the cath. lab at the hospital. Went real smooth, never had a problem with my line. I gaurded it well, but still was active after about the first month (horseback riding, gym, etc.). Recommend a hospital setting for placement. Get the line put in your non-dominate arm if possible.
Was on Zith and Flagyl at the same time as Rocephin (to get all forms of the bugs).
Detox, detox, detox. Probiotics - I take Theralac 2 times per day, another probiotic 2 times per day and Sacchromyces B. 1-2 times per day. I worked up to that level to find the right balance for me.
Epsom salt baths, sweating, chlorella for detox. I use detox foot pads (Podi patch). Good diet. Use bulky foods if loose stool (brown rice is good).
Don't put it off, especially if you know in your mind it is where you need to be. There is no good time to start, just start.
Insurance - mine paid. Many people's will not pay past 1-3 months. See if you can find out the reputation of your insurance company for paying. I found out from the home health care company that my doctor uses to manage the IV Rocephin and PICC care. I didn't contact my insurance at all. The home health care company knew based on past client experience. They were right about my insurance.
You can buy the supplies yourself for cheaper if going without insurance.
Overall, I got good results, switched to Bicillin shots after IV and stayed on the orals too. Better chance not to relapse when doing that. Not an easy road, but doable.
Take care. Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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posted
People will start thinking I have stock in the company...but, again, If going with long term IV, go with a Groshong. Avoid the PICC if possible.
No dressings! Simple care. No nursing costs... you can easliy do infusions yourself! Will last more or less indefinately. Less chance of infection and clots....
The higher cost will be worth it.
Posts: 70 | From AZ | Registered: Sep 2007
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posted
why is there less chance of infection with a groshong?
i am supposed to start IV soon too and i'm scared about it. i've been in treatment since nov. 2006 with incredibly little improvement (babesia treatment, bicillin shots, etc).
i am supposed to get a picc line put in soon. can anyone tell me if you can use an infrared sauna with the picc line. i am assuming no which is disappointing since i purchased an ifnrared sauna 6 months ago.
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
WOW! Groshong scares me even more than PICC line!
I see why it might be better toward infection but IN MY CHEST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
More I move into all this the more SERIOUS i realize it all is!
Did you ahve problems with clothing?
i worry about PICC line because i have always had trouble with IV's in the hospital. In one week, after spinal fusion, i had to have it moved 5 times.
After Csection - 2 days in hospital it had to be moved 2 times.
they just dont work well on me, never have. Is a PICC line different than the IV lines they put in at hospital?
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
My gallbladder surgeon hated groshongs- he told me, "A groshong is an infection waiting to happen." and wanted to take mine out!! (he was not anti-Lyme tx by the way, he hated groshongs because he said he had seen so many infections with them!!!
That said, I had a Groshong and LOVED it compared to the PICCs for ease of infusion.
PORTS are safest. Hickman port, but can't infuse yourself!!! At least easily anyway-
I had 2 piccs, one mid line, hand lines for a whole month and then a Groshong!
The piccs were a pain- and the mid line- the hand lines sucked- that was month 6-
and months 7-8-9 were when I had my Groshong and it was easy-
If I had to get a line again, I would probably get a Groshong again but maybe a HIckamn because
with a Hickman port- you can SWIM!!!!
You can have full body immersion in water!!! (Right guys? That's what I've heard!) With a Groshong you can shower but you still have to be careful- a Hickman port is also very very safe-
but VERY hard or impossible to infuse yourself from what I've heard.
Piccs, mids, hand lines, messy.
For one whole month I infused into my hands. BURNED if we went too fast. OUCH!!!!!!!!!!!!!
But it saved me.
I was dying.
First 6 months - nothing- but I hadn't been treated for Babs by the way- which may be why was resistant, I don't know- and then- BOOM! YAY*)!*)!!
LIFE*)!*)!!
I have a normal life today thanks to IV Rocephin.
I took out a second mortgage on my house and spent $50,000 and then got 3 months of it free.
I bless every penny.
It saved me*)!*)!!
In our local group, most full remissions are associated with IV Rocepihn- then transitioning to orals and then off*)*!)*)!!!!!!!!!!
They are working on an oral Rocpehin!!!
THERE is also- IM Ropcehin- but it is supposed to be painful-!!!! Rocepihn can BURN! OUCH!
Rocepihn gave me back the ability to walk and took my pain away- it amde me normal again!!! Best Rocephin wishes, Sarah
p.s. I LOVE 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
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posted
If you can swing it, the IV may shorten your treatment, which could be a very good thing. If you have a bad neuro case, you may need to at least do the IV for awhile, but even still, if you have an iron stomach and/or an iron will, orals will probably work, but take longer. As far as pain and discomfort, its a tradeoff; once you've overcome the initial queaze, IV is less trouble in many ways. The cost is a huge factor, for those outside or on the fringes of the "insurance loop". DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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quote: First 6 months - nothing- but I hadn't been treated for Babs by the way- which may be why was resistant, I don't know- and then- BOOM! YAY*)!*)!!
LIFE*)!*)!! [/QB]
The babs is a huge factor here- I had the same experience-- until I attacked babesia my progress against lyme was very slow or nonexistent! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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daise
Unregistered
posted
Congratulations!
You're getting IV Rocephen!
I had it for 6 months--I did pulsing, 4 days a week on Rocephen, 3 days off; now I get LA Bicillin IM shots in the rear. Love those kinda painful shots because they are very effective!
You said that you're scared and want to know about the experiences of others.
Will it be a picc line? Keep it clean. It can get dirty, fast. Use all the alcohol wipes you need--don't spare those, they cost $1.19 a box at WalMart, to use as extras.
Know ahead of time which arm the cathetar is to be put in (this is done as outpatient surgery.) Since I had severe pain on my right side, I opted to have it put in my left upper arm.
Listen to the home health care nurse, and take notes, so you know what to expect. How do you reach them--at home. During the day. What's their nighttime number to call for help?
When your doctor says you need cbc/liver enzyme tests periodically, be enthusiastic! Tell the doc--yes!--you want all those tests you can get! That way the doc won't apologiize for all the tests needed. Be willing to get these tests!
Do be sure you get ursodiol, to try and prevent gallbladder stones. It takes 6 months to work. Take plenty of high quality probiotics, different brands. Good brands: Source Naturals and Renew Life. Even though these are off-the-shelf, keep them in the frig.
Look for redness or swelling around the cathetar, and immediatly call your home health care nurse and tell your doctor. You just have to follow directions very closely, all the time.
You might cut an old clean (kind of thick) sock and use the top 4 inches or so of ribbing, to help keep it in place, especially with long sleeves worn in winter.
There is no great way to take a bath or shower with a picc line. I cut a big square of thicker plastic, then taped it over my cathetar with masking tape, and then repeated it with a larger piece of plastic over it, and did the masking tape again. Buy wide tape but not the thick IBM masking tape (it doesn't stick.) Make sure it's stuck-down good. Then take a quick shower! When you get out of the shower, the tape and plastic will be about half off, from the dampness. But that's the secret: take quick showers.
To help keep the syringes clean, I used a plastic tray and cleaned it with alcohol wipes before each session. My home health nurse appreciated using that, too.
Walgreen's has cheap antibacterial soap. And I made a plastic sleeve for paper towels, to keep them clean as they were used by me and my nurses.
In addition, your home health care nurse may be able to pull your blood to send to your lab. This was helpful! You might ask the nurse about it. And if the nurse can, let your doc know.
Nurses are great! You have someone in your corner, who's right there in your home, once a week. Many nurses have left hospitals to find work in home health care because the patients are very glad to be home--not in a hospital--and they're happy. Glad to see their nurse. I cherished my nurses!
The home health care company used to deliver supplies once a week (ROCEPHEN MUST BE KEPT REFRIGERATED--I USED A PLASTIC TRAY IN THE FRIG JUST FOR THE--BAGGED--ROCEPHIN.) If that is not good for you, you may be able to drive to the home health care company and pick up your supplies. The supply box must always have one or two ice packs on the Rocephen, when you pick it up.
Each week when you order a new supply box, make sure you make an inventory of what you have so you'll know what you need.
Yes--A picc line is not to be taken lightly. However, IDSA doctors make it out to be worse than it is. According to them, you should never use Rocephen because your line might get infected. What the Lyme community says to that is, well yes, but if you don't, you will never get well!
Just make it your part-time job to care for yourself with the PICC line and Rocephen and then feel confident in that.
The nurses came, at first, apologizing that I had Lyme. Are you kidding? I had a smile on my face the size of Texas! I was so thrilled--grateful, and so glad to see them. "May I get you something to drink? You wanna sandwich? What do you like to drink or snack on and I'll make sure I always have it for you. I'm so happy to meet you! I'm so glad you're here!" They'd never seen someone so happy to have a picc line! (In New Mexico.)
Cathetars are used for a lot of medicine. What makes the difference is that you tend it--and your nurse. There is empowerment in that.
Come to think of it, you might try to make things comfortable for the nurse. Ask what arrangements are best for them, with chairs / a table / a tray the nurse needs to do her work best.
After 6 months I had had no PICC line problems whatsoever. I did get small gallstones--no big deal. And I got c. difficile. I kept testing positive for it, although I never had diarhhea. (But my PCP sides with IDSA and didn't want to give me any more antibiotics, that's why she tested me for c. difficle. I now have a new PCP!) It took a colonoscopy (and letting the gastroenterologist know ahead of time to look for c. difficile) to be pronounced: "Even though the blood tests say you have it and you've done multiple courses of metronadizole (flagyl) and one high dose course for 15 days of oral vancomycin, I did not see evidence during the colonoscopy, there's a chance you have a very small infection of c. diff, but I didn't see any evidence."
Hurray!
Have you been to www.ILADS.org? On the left is a menu. Click "Treatment Guidelines" and it'll take you to Dr. Burrascano's 33 pages of tips. I highly suggest you make a copy for the wonderful information in general about Lyme. Included is a referral order for physical therapy. If you need physical therapy (to increase range of motion, etc) that referral is great: put it right in front of your doctor for their signature, for the insurance. I went to a physical therapist a year and a half before that, and she was very helpful. With the picc line in I saw her one time and asked for a list of range of motion exercises to do at home. (When the Rocephen therapy was almost done, I went back for several visits and was also introduced to weightlifting machines, by Dr. Burrascano's referral order. Yes!) Your therapist will see on the referral order that aerobics are not allowed (we must conserve our energy, yet our muscles, joints and brain need weightlifting.) With a picc line cathetar in your arm you can't lift anything heavier than 5 pounds or 1 gallon. The therapist needs to know that. If you can get into a gym, I suggest machine weightlifting--however, if the cathetar is in your arm, you can only weight lift with your feet/legs. Use 5 pound dumbbells for each arm. This exersize is very much a part of treatment. When the cathetar comes out (the nurse pulls it out--takes 3 seconds) you can use the machines for your arms as well, and you can now use a warm pool for dance-stretching (on your own.) It feels good. Hurray! By the way, some Medicare Advantage plans offer free gym and pool through Defined Fitness. It's called the SilverSneakers program. (Yes, even for those not seniors, but disabled.)It's a national program.
You asked if Rocephen really works. Oh yes! Everyone is different. After about three months you usually see substantial improvement. That is, if you aren't in herxheimer! My herx's lasted 6+ weeks and overlapped. Now after a year and using LA bicillin they last a week to 12 days. Herx's are a good thing because something is being killed off.
Schedule herx's ahead of time so you know when to expect them (about every 28 days or so.) You can then report that to your doc. ("Hmmm, this patient really knows their stuff.")
It's really important to keep a daily diary to show your doctor. You might get some 11" x 14" paper and type your signs and symptoms, with a column for every day of the month. Took me three sheets, horizontally, for one months worth of daily diary checking. Always show your doc. You can also keep track of what the nurse does on it (temperature, blood pressure, etc.) And keep track of your herx's.
I am 56 years old and I use weightlifting machines!
That was a beautiful first post*)!)! *!)*)!*)!*)!*)!*)!*)!*!*)!*)!*)!*)!*)!*)!*)!!
Yup, tube socks work great. Someone was making pretty picc line covers here if I remember right, too... can't remember who though!! Welcome again, 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
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daise
Unregistered
posted
Thanks Sarah (California Lyme,)
I mostly hang-out at www.Lymeblog.com and am writing a column for it. I am very aware that not everyone is as lucky as me.
posted
You all are truly fabulous.........no words can express.....
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I had a PICC line and pumped in Ceftriaxone for a month. It was a little bit of a pain but really worth it. I improved quite a bit. Only issue for me was that my liver started sludging (extremely high liver enzyme counts) and I started experiencing what I think were gallbladder attacks (oh my, these were HORRIBLE).
PICC line is not like a normal IV. Mine ran up my arm to my chest. It really wasn't that bad going in so don't worry about that. The thought of it is much worse than the actual procedure itself....it is quick!
Needless to say, I'm back on orals and my liver enzymes are back in check. Just be sure you are having your liver panels checked on a weekly basis while on IV.
Posts: 561 | From mass | Registered: Jul 2007
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The thought from my arm to my chest gave me the heebie jeebies!!!!!! I swear I just shook from my head to my toe and I dont even have to PEE!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
CJ-I guess we are going to be Rocephin buddies here. I am getting a PICC line placed tomorrow. Good luck to you and I hope it goes well and you see improvement.
Thanks everyone for your responses and sharing your experiences.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
quote:Originally posted by CaliforniaLyme: PORTS are safest. Hickman port, but can't infuse yourself!!! At least easily anyway-
If I had to get a line again, I would probably get a Groshong again but maybe a HIckamn because with a Hickman port- you can SWIM!!!!
You can have full body immersion in water!!! (Right guys? That's what I've heard!) With a Groshong you can shower but you still have to be careful- a Hickman port is also very very safe- but VERY hard or impossible to infuse yourself from what I've heard.
Just wanted to clarify a few things about ports. Hickman and Groshong refer to the brand of line, not necessarily the type of line. If I'm remembering correctly, groshongs don't need to be flushed with saline, just heparin, and there are groshongs that go in the chest and ones that go in the arm.
Ports are a different kind of line altogether that is surgically implanted under the skin and the actual port is attached to an internal catheter that goes through the vein to the heart. Then the port is accessed with a special needle that stays in place for up to a week at a time. While the needle is in place it has a dressing over it like other lines have and you can't get it wet. But when you deaccess (take the needle out) you can get it wet so you can swim, shower, etc.
It isn't any more difficult to infuse with a port than with other lines, it's the accessing (putting the needle in) that can be hard to do yourself. Most people just rely on a nurse to come once (or sometimes more often) a week to change the needle and you can easily learn to take the needle out so you can have some time with it deaccessed before it gets accessed again to take a good shower, etc.
But you can learn to access it yourself. I learned to access my port myself about a month and a half after having it put in because I was going on vacation and needed to be able to do it all myself. It was difficult at first but I got the hang of it fast and after a few more months of getting nursing visits I started doing it all on my own and have ever since (and I've had my port for more than 3 years now).
Here are a few links with info on different IV lines:
posted
Iv Rocephin works for alot of people. I personally did not herx from it which was nice for a change. When I was on rocephin my mind was also much clearer which was good. I was only on it for 6 weeks though because I developed systemic yeast even thouh I take probiotics religously.
I did have problems with my PICC lines and had to get 2 of them pulled because I developed a red oozing rash around the insertion sites. The PICC line itself was easy to conceal and infusing is no biggie.
Good luck, Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I've been on IV rocephin 4 times and it didn't work for me, either. It seems to drive the borrelia into cyst form, at least in my case.
The first time I did rocephin I could actually feel the spirochetes migrate and hide in my joints. Ever after that I've had joint pains when before I didn't have that symptom.
I also had a rocephin shot in the upper part of my back side 3 years ago and, again, I felt a migration of spirochetes from my lower back and hip up to my diaphragm. I have been plagued by diaphragm spasms ever since.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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