What to expect with IV Rocephin?!

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lymewifeaunt&sister
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/26/2009 2:27 PM (GMT -6)   
 
My husband is under the care of an LLMD, all other antibiotics have not yeilded great progress, the next step is IV Rocephin.
 
I am very aware of the risks, my sister had a picc and developed a life threatening allergic reaction after 18 days, she had the line pulled. (feeling better though after 18= years).
 
My husband is 34 years old, and is a heavy equipment machine operator. (back-hoe) The dr. said he could have the line put in above the elbow to increase mobility. He also beleives he will be able to work while being treated.
 
I saw how sick and week my sister was, but her case was unique. Any one out there care to tell their story?
 
How long were you on it? Were you taking the gallbladder meds? Should we have his gallbladder scanned prior to the line?
Were you sick? Is it realistic to think he could work?
How often did you have the dressings changed, vitals taken, and bloodwork?
 
Any help would be very much appreciated. Sorry to meet under these circumstances. Thank you!
 
"Why did God make ticks Mama?", my 4 year old asked.
"I don't know honey, but mommy will be sure to ask God that question when I get to heaven."..."Me too Mama."

Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/26/2009 3:52 PM (GMT -6)   

Hello. 

I began IV Rocephin 2/25/09.  PICC line has been fine up until a couple of weeks ago; I can infuse/flush, but nurse cannot draw from it so she is going to put me on Caflow and take the blood the old fashioned way, which I prefer anyway.  I am also on 400 mg Doxy (oral) daily.  When I began treatment in February, my CD57 level was 16.  I don't know what it is now; I will find out late June, right around the time when my grandson is due to be born.

I can say that it is helping, albeit slowly.  Although I know the reality - I'll probably never be the same again.  My mom has been chronic since 1996.  But I do have good days - it seems to be pretty cyclical in nature though - around the 25th of the month I have a really bad week - especially neurologically (rage, brain fog) which is why this may not be very well written and I apologize in advance.

I work, but I am an admin.  My BIL, who has Lyme, had a PICC line put in, but due to his line of work (tree expert), they had to end up putting in a Hickman (sp?).  I remember my doctor asking me if I had a "sweaty job" in which case a PICC might not be right for me.  You just have to be so careful not to get the area wet and it can get infected easily as you well know.  I think mine has been decent so far (and I hope remains so for the 6-12 months she's keeping me on the IV) because I'm so immobile.  I'm just starting to feel like doing anything - especially on my work days because the totally wipe me out and my job is not difficult or laborious at all.

I am not on gallbladder meds; LLMD told me side effects worse than gallbladder surgery and so far (where's some wood?) no problems at all.  The Doxy makes me nauseous if I don't eat, but so far, my bloodwork has also come back spic n span.

Dressing changes once a week, along with vitals and labs, which consist of CBC, CMP.  When I herx, my blood pressure goes nuts, so now I am on Cozaar.  Also on Atenelol for tachycardia and Xanax for anxiety, all Lyme induced.  

I hope I answered all of your questions.  If not, write back - I'm totally brain dead now.

Hugs,

Lala


lymewifeaunt&sister
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/26/2009 8:05 PM (GMT -6)   
Thank you for your response. Even in your state, you took the time for me and my family. It means so much.
 
We do not have any details as to how this is all going to go down...it seems it is all about insurance first and then we will see. Please be careful of your gallbladder. Surgery is still surgery, and if you are not well it does not make it any easier. I pray for you everynight, as we pray for all of those affected by this disease....Thank you.

Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/27/2009 8:13 AM (GMT -6)   
Thank you for your kind words. Oh not to worry - I will definitely keep an eye out for symptoms of gallbladder issues. Oh, and you are right about the surgery - my mom had her gallbladder out and she was pretty sick at the time (didn't lose gallbladder from Rocephin, just went bad) and it took her 2 months to recover from it where most recover from laproscopic surgery in a week or two.

Insurance is indeed like Russian Roulette - you never know from one month to the next what they will do - I have been very fortunate. Coverage for Orals is never an issue, but IV is $3000 a month, and I pay 20% of that until I pay $7000 out of pocket (total medical), then they cover at 100% - by then it will be the end of the year and it starts over. But I know I need this and I am seeing improvement.

I forgot to mention that I also take fish oil and CO-Q10 - just to boost my wrecked immune system a little bit. I read about natural treatments and colon cleanses and right now I am just too overwhelmed to deal with any more than what I am doing now.

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 5/27/2009 9:44 PM (GMT -6)   
I had IV 2 1/2 years ago for 90 days. I became mildly allergic to it hives and an itch you could barely handle. They kept me on it and I took so much allergy medicine it made it tolerable.
 
I did work threw that time, no choice. I have a easy job it was still so hard and when I wasn't at work I was in bed.
 
In the end it helped so much I was almost all better. I took Amoxy for ever after that have been healthy for 2 years just had a healthy baby.
 
Decided when I wa done breasfeeding I would stop taking them since I had been good for 2 years. Bad Idea its all back.
 
Good luck to your husband.
 
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


Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/28/2009 7:17 AM (GMT -6)   
I was told by my LLMD that, even after IV is done, I will probably be on doxy or amoxi for the rest of my life - I will probably pulse with it, but she has so many patients who are seemingly well and then go completely off abx and get sick again and it's like starting from ground zero.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/28/2009 11:05 AM (GMT -6)   
I agree with lymekiller, it's definitely worth it. I started IV Rocephin in March and have not had much improvement yet but am still holding out hope. I had a few complications but if I can get my brain function back it will all be worth it in the end. Having the PICC line in and doing the daily infusions is not nearly as bad as I anticipated it to be.

So far I've been lucky enough to have my health insurance cover three months with 2 nursing visits per week for labs and bandage changes. They approved one weekly visit at first but I was experiencing discomfort and sensitivity so now the bandage is changed twice a week. For most, once a week is fine.

When I first started the Rocephin I experienced mild abdomen discomfort and the doctor immediately sent me for an ultrasound and prescribed Actigall. To be honest I think I should have been on the Actigall as soon as I started the IV's. It's probably not necessary for your husband to get an ultrasound unless he experiences any problems but I would suggest taking the Actigall as soon as he starts the IV's to prevent problems.

It's very important that he get weekly labs done and is monitored closely. It's also extremely important that he have his bandage changed every 7 days. If he does not receive approval to have a nurse come to the house, he can probably go to any local doctor or clinic and it will more than likely be covered by his insurance. This is what I was told anyway.

Whether he can work or not all depends on his level of functioning at this point and how the meds will effect him. Many people can work and many others were not able to work before they started the IV's.

I'm also wondering if your husband might be better off with a port instead of a PICC. I think I remember being told that I should not lift anything with the PICC arm above a certain weight (5 lbs. or 10 lbs.?). From what I remember reading, I think having a port inserted is a more difficult and extensive procedure but is much safer in the long run. Also, I have a friend who had a port inserted for chemo and he installs inground pools for a living and seems to be doing fine with it. Considering your husband's line of work, it might be worth asking your doctor about a port instead of PICC.

Also, just want to mention that I use a mid-line protector by Brown Medical for showering and it has worked out fine. It's a good idea to order two so that when it starts to stretch out and/or tear you have another one ready and available. I originally tried Dry Pro the day after the PICC was inserted and it caused bleeding which sort of freaked me out. The nurses told me this happens quite often and they discourage patients from using this type of waterproof protector.

I wish your husband all the best of luck and lots of healing.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/28/2009 11:09 AM (GMT -6)   
Just wanted to mention that I was at risk of having an allergic reaction and the infusion company sent over something with the meds in case this happened. I think it was something like a medi-pen but I don't remember. Before your husband starts he can discuss this with the pharmacist at the infusion company. The pharmacist usually calls to do a phone consult before the meds are delivered. Good luck.

lymewifeaunt&sister
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/30/2009 7:38 PM (GMT -6)   
Thanx for your posts...my sister had a picc in for 18 days, had an almost deadly allergic reaction to what they still aren't sure. maybe the oral zithro, or the rocephin, or maybe the plastic. She was in and out of other diagnoses for 18 + years, had two kids she passed it to inutero (don't beleive you can't). Through all this lyme has just about drowned our whole family. my husband was diagnosed last year when we were thinking, "hey maybe this is the root of all your problems too"...yep.
So beleive me, I proceed with much caution...
go to www.wildcondor.com  there is an amazing story to hear, along with a first hand account of sepsis from a pic line...
..oh yeah, very rare side effect from doxy is that your finger nails start to raise off your skin and they hurt a little...husband had that, but our dr, who is very smart knew it right away...just in case for all you on dox

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 8:50 PM (GMT -6)   
Lymewifeaunt&sister, I am so sorry for all your family has been through and completely understand your hesitation. Good luck.
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