PICC lines and IV Rocephin

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Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/8/2009 1:57 PM (GMT -6)   
Can youguys tell me your experiences?
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 7/8/2009 2:21 PM (GMT -6)   
I did 90 days IV Rocephin. Getting the picc line was amazingly easier than I thought it would be. They numb the area and thats really the only prick I felt. The IV's made me Herx hard it was a hard time on me and my family. I became allergic to the Rochephin a couple weeks in, but they continued to give it to me and I took alot of allergy medicine that knocked me out.
 
But when it was all over I continued on orals and I got 99% better. I had a MRI a few months later and almost all the Lesions in my brain had disappeared. MY MS Dr was shocked.  I stayed on orals for a few years had a baby after the pregnancey dumb little me stopped antibiotic  now its back with a vengence.
 
I am really hoping I can get Ivs again I think it was the only way to get my Nuero Lyme. If you can get them I would take them. It really helped me. Make sure you have a supportive environment to help out.
 
Good Luck!
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/8/2009 2:36 PM (GMT -6)   
Jen,

All I can tell you is that it's not bad at all.

I experienced so much unnecessary anxiety over getting a picc and now don't even think about it unless I need to take a shower or do the infusion. Just the thought of having it in my arm and doing the infusions myself was more than I could handle. I never experienced anxiety before and this just pushed me right over the edge even though many on here tried to calm my fears. LOL Trust me when I say that compared to what you have already been through the picc will be a piece of cake.

I took a valium one hour before the procedure and it worked like a charm. To be honest I've had blood drawn in the past that hurt more than having the picc inserted. I literally felt like a little pinch.

As overwhelming as it all seems, it really is easy to deal with. As long as you have someone to change the bandage once a week and make sure it's kept clean and dry you shouldn't have any problems.

Also, make sure you get the Brown Mid-Arm Protector. I purchased two so I have a spare and it works great. Do not get the Dry Pro protector even though many recommend it. I showered the day after the picc was inserted using the Dry Pro and started to bleed. Of course, this totally freaked me out beyond belief and my nurse told me the nursing service has quite a few patients that this has happened to due to the Dry Pro. I know it works for many but why chance it. Get the one from Brown Medical.

I don't think anyone has ever been or could be more nervous about getting the picc than I was. I did have a problem with the first one and needed to have it pulled and another one inserted. Again, it really was no big deal and the second time around was so much easier because I knew the drill.

I'm sorry for the long drawn out post but wanted to let you know that although I totally understand if you are nervous, it will be much easier than you think.

If you have any questions or want to talk, let me know. You'll be fine.

Valerie

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/8/2009 2:40 PM (GMT -6)   
Jen, I got so carried away with the actual picc experience I forgot to tell you that after three months of IV Rocephin my body and joint pain have improved greatly and a recent SPECT can shows significant improvement. Of course I'm on orals too but Rocephin is the "big guns", as my doc says. lol I'm still experiencing severe cognitive issues and have a long way to go but at least I know it's working and I'm headed in the right direction. You really have been through so much and I hope this works for you. Good luck.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/8/2009 4:01 PM (GMT -6)   
After being on orals for a year at the time I went on IV for 4 months. I also showed allergic reaction to the meds but took high doses of benedril after each time and the reaction gradually went away (hives and redness). I wanted to push on because It was my last hope at that time. While on it I had some herxes but they wen't bad. I believe it really knocked the bacteria load down big-time. Just be sure to take your probiotics 1 1/2 hrs. after each infusion.

Haveing the PICC line put in was not terrible except that they had to do it in both arms before they decided where the best vein was. I had it under my right upper arm. I did not feel better until I was off the PICC. Unfortunately at that time I had a doctor who didn't put me on oral after I had the line pulled and in a few months all the symptoms came back.

It has been 1 and 1/2 years since I had the line pulled. My present LLMD would like me to go back on it but insurance won't pay and I already paid for 2 of the 4 months I had already. I am now on orals and that is keeping almost all symptoms at bay. It doesn't take lomg for the symptoms come back after I stop orals.

The PICC line was not much of a problem as long as you keep it clean and dry. One can get used to it quickly.
Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/8/2009 8:52 PM (GMT -6)   
Scorpio...dare I ask why you had to have your picc pulled? Infection?

I'm so afraid of this!
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/8/2009 9:01 PM (GMT -6)   
Jen,

How have you been feeling lately?
2003: Symptoms started;Anxiety,Panic Attacks,Heightened Senses
2007: Diagnosed with Lyme. Didn't start treatment.
2008: Symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1500mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements

**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/8/2009 9:05 PM (GMT -6)   
Like S H I * !!!

I just got done with 'that time of the month' today...so I hope it's going to get better, but my Flagyl pulse started today too! I can't get a break! I'm starting birth control again to see if that helps with the hormonal stuff...

Today I had REALLY bad shakiness that I haven't had in a very long time - well, probably a little less than a month ago it was this bad. I had to take 1/4 of a Valium twice today and it really helped.

I wish I had a clear herx or something...or I wish I knew for sure it was Lyme so I knew it would get better. Right now I'm just going with the flow as best I can. Thanks for asking!
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


jessMi
Regular Member


Date Joined Jun 2007
Total Posts : 108
   Posted 7/8/2009 9:18 PM (GMT -6)   
I would look more into the birth control pills! I took them for 5 years and they totally messed up my hormones when I stopped taking them cause your body gets used to the synthetic form everyday and forgets how to produce them naturally. My LLMD also told me that the suppress the immune system and further confuse the body since you dont produce your own natural hormones and thats not good for us lymies! Just thought I would share that with you, though our bodies all react differently to medications!
 
Jess

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/8/2009 9:32 PM (GMT -6)   
Hey Jen, No it was not an infection or anything serious. I just continued to have discomfort which I'm told is unusual and unlikely so don't worry. The site itself was and still is perfectly fine but it sort of felt like the vein or nerves were irritated which was very annoying. After a few weeks I decided I couldn't deal with it and wait any longer and had it pulled and another one inserted in the other arm and it's been fine. If I remember correctly, which I often don't do (LOL), Gracie's Mom's daughter had something very similar happen to her but it eventually calmed down.

Every once in a while a tiny portion of the skin under the bandage will become a little irritated but it usually clears up on it's own by the next bandage changed. Of course even this freaked me out in the beginning because I was so afraid of anything going wrong with the picc.

When I think about it now, it makes no sense. I experienced more anxiety over the picc than the bacteria eating away at my brain. lol

It really is fine and I don't worry about it at all anymore. You also will be fine and I hope my story alleviates some of your worry. It makes no sense that the both of us should experience so much anxiety over it. I did enough worrying for the both of us. LOL

Also want to suggest that you request to have it inserted in your upper arm. For some reason the nurse who inserted the first one placed it in my mid-arm and it's so much better in the upper arm.

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/8/2009 10:06 PM (GMT -6)   
Thanks, Scorpio!

And Jess...the pills I'm on are a really low dose, so I'm going to try them, but if I feel worse at all, I'll stop. I had no trouble when I was on them before, and I don't plan on going off of them to have kids - since I don't think I'll ever be well enough to get pregnant! :(
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/9/2009 2:31 AM (GMT -6)   
Jen,

Well, I guess we will feel like crap together then, LOL. I've haven't been too good myself but I still plug along somehow.

My menstrual cycle was really bad too. I take the Depo Shot to stop it. I was considering giving my body a break and getting off but then I had a really bad cycle in May and it reminded me how bad off I was. The doctor thinks the pre-filled shot had a glitch and that'd why I started. I had used a vile for over a year.

Anyway, Lyme Disease can get really bad around your cycle. It all makes sense to me know and explains why I felt so bad. That was when I would go into rages too so it feels good to be level headed again.
2003: Symptoms started;Anxiety,Panic Attacks,Heightened Senses
2007: Diagnosed with Lyme. Didn't start treatment.
2008: Symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1500mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements

**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum

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