posted
I restarted this thread since it was gettin too long.
I am in my third week of IV. To summarize, Kat and Karen are getting flack from insurance and may have to have their lines pulled %$%$#.
They are looking into bicillin as the next step...also generic rocephin....
I am herxing, getting agitated and crabby, my bones hurt, I have a headache and I am nauseated .... I definately feel like I am getting better (isn't this weird).
Did I say that I am nauseated!
love you guys! Hang in... Kim
-------------------- We are spiritual beings on a human journey...
posted
Posted from JEFFM from the other really long rocephin IV post....
19 days on rocephin and biaxin (yum that taste of aluminum foil in your mouth . . . )
I feel good. Started to get achey the last few days.
See my post on IV administration. This has been a harrowing journey -- having to figure it all out myself and basically do it all myself. I could not have done this three months ago.
The rocephin is getting in my daugther. Thats the good news. But it makes her crazy, with major herx's.
Someone on here said the generic rocephin was still $200 a day. Baloney. I am getting 90 days, 2 grams powder vial, for $1300.
Lets keep this thread going, or start another if this is too long.
-------------------- Jeff
-------------------------------------------------------------------------------- Posts: 267 | From: CA | Registered: Mar 2006 | IP: Logged
-------------------- We are spiritual beings on a human journey...
posted
Hey guys..Well all the rumors about rocephin and gallblatter-turns out they are true-after three weeks on rocephin I started have tremendous pain, couldn't breathe, and ended up in the ER-after being told I had gas-I just about lost it-told the nurse I wanted to sign my papers and leave-she paged the doc-and he did an ultra sound on my abedamon-
turns out I have a gallstone and need to have my gallblatter removed! 22 and I already have had my appendix, toncils, and soon no gallblatter.
I was switched from rocephin to clafron-and I will now have to infuse 3 times a day for 1 1/2 hours.
Do ne of you ever feel out of it-I feel like I was doing so well-then I found out i had a gallstone and I don't know if the numbness in my arm is from it or the pain in my jaw? I have numbness in my arms and feet often but this feel different-like paralysis almost..
Today I was so out of it! I couldn't make sentences. I called my home health care to order stuff and I couldn't even speak-I wanted to cry, but i laughed-and I was so embarassed because I had to have them keep help remind me what the question they were answering to was-i felt so dumb!
Is this the medicine? I was fine with Rocephin but this stuff really screws with me!
(
Hope everyone else is doing better!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
| IP: Logged |
posted
So sorry for this turn of events, I worry I will be joining the gallbladder free group soon.
I wonder why you have to stop rocephin...if they do remove the gb/then why cant you keep takin it?
Remind me if you were on actigall? I wish there was somthing I could do right now to prevent this ...
Jeff, good luck with the mixing...let us know if this is a good way to go. Some may have to pay out of pocket and will need to learn how to do this.
Day 22, I am still in herx land--headache/jaw pain/between shoulderblades/ severe nausea/ joints killin me.
I am so proud of myself for being able to function so well..hubby is out of town and I have been able to drive surly teenagers to bus stops at 6:30 in the morning!
I am in pain but truely able to function. This is good news and what makes me think that I am getting better.
Kat and Kar...let us know what is happening as you fight your insurance battles.
Hugs, Kim
-------------------- We are spiritual beings on a human journey...
posted
I am on Day 24, and I've been feeling pretty good this week. I haven't really had much pain for the past few days. I still have very stiff fingers (can't make a fist or hold a pen, but I can type) and some "silly" complaints - heartburn, hair loss and slight itching while infusing.
My doctor expected me to start to feel better during the treatment because of how quickly I responded to the oral abx. My case is a bit weird since I test positive for Myositis but he thinks I actually have Lyme Myositis. (For insurance purposes we are calling it Inflammatory Myopathy.)
As for the insurance issue...the doctor's office is filing an appeal based on the obvious improvement in my bloodwork since starting the IV.
My husband's boss told him to call HR and tell them about my year long battle to find treatment and that the insurance company doesn't want to pay. Apparently the HR department can insist they pay for this. Not sure if it will work, but worth a try. Many people at work know about my situation since dh has had to take time to get me to appts...plus they saw me at the company picnic in a wheelchair!
I'm not going to have the PICC line pulled - we'll figure something out to pay for the drugs. I'm just hoping my body continues to tolerate it for another 5 weeks! The itching has me concerned 'cause I know that's an allergic reaction. I'm now taking Allegra to combat the itching.
Karen
[ 14. September 2006, 11:09 AM: Message edited by: KP ]
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
So glad you will stay the course...hope the itching is managable.
Sounds like your other symptoms are managable. My goal is to be functional. That is to be able to just get out of bed and work and paint and make dinner.
If I can do all that and manage my pain then I am grateful.
So far so good... Kim
-------------------- We are spiritual beings on a human journey...
posted
So, the minute somebody has a gallstone, they go ahead and remove the Gallbladder? Isn't there anything else they can do, on top of taking you off the rocephin?
Posts: 589 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It's a good idea to be on Actigall while on IV rocephin. Also to have monthly gall bladder ultrasounds.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
By doing the monthly ultrasounds, can they tell if gallstones are forming before it becomes a necessity to remove the GB?
Are gallstones the same as the gallbladder sludge that takes place while on rocephin... or is it a precursor to the stones?
I am so sorry that so many people have had to have their gallbladders removed while trying to make the Lyme better. That just really sucks!
Now i am getting worried bc I start rocephin next wednesday and my doc said nothing about the actigall. I guess that can be hard on the liver, but at least you can monitor the liver enzymes and stop when it starts to get too challenged?
So many damned if you dos and if you don'ts with this disease.
Posts: 589 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
posted
Hi, can I join the club? I'm only on day 2 of Rocephin! Got my Groshong catheter in yesterday and had training today.
My doc said nothing to me about gallbladder problems. I will be seeing his partner for my follow-up on Monday and will talk with him.
BTW, I buy ceftriaxone (generic Rocephin) for $112.50 for my first month's supply. Of course that will double when they increase my dose next month, but STILL! Much less that I expected!
I'm only on 125mg per day to start, so I'm keeping my fingers painfully crossed that I won't herx too bad. I'm curious what dose everyone is on?
Kalina
Posts: 18 | From Texas | Registered: Aug 2006
| IP: Logged |
posted
Here's the deal, before I was diagnoised I vommitted everything I ate for 8 monthes straight and another year but not nearly as often after i started lyme treamtent.
they think the gallstone has been there for atleast a year and is unrelated to rocephin-but who really knows
I was on atigall 2 pills a day-and antifungal and all that good stuff-but it doesn't matter if you already have a stone-
I wanted to do an alternative therapy cleanse but my doctor who is pretty open to alternative therapies said that in my case she would NOT reccommend that due to damage being created in other organs if something goes wrong.
They don't want to just remove the stone because once ur body starts making stones-it doesn't stop-therefore i would need repeated surgeries..and well that's just silly. I am left with removal of my gallblatter unless someone here has a brillant idea?
I have had 3 attacks since my ER visit a week ago and I don't think I can handle another attack. It's just too painful. Way worse than kidney stones. I am hoping I can do the surgery next thursday-we'll see-
-Linds
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
| IP: Logged |
posted
as for ur itching? do you have hives? i was broken out in hives for 8 monthes and i had shingles and mono (that i didn't even know) and my doc put me on valtrex and my hive went away within 24 hours..we have NO idea why but it works..i tested neg for all STD's and aids and everything but i did have shingles when i was 18 (now 22)and mono we're not sure and I swear by valtrex-random but it works to stop the itch and make the hives go away!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
| IP: Logged |
posted
Hi Kalina, welcome aboard...we have no restrictions as to who chimes in...all kind people are welcome here...keep us posted on your happenings w/IV and other stuff too.
So My ID doc says he has had hundreds of people on rocephin and only 2 gall bladders removed...thought risk to liver outweighted benefits of actigall...
Oh well,
I am trying to eat low fats, less dairy and lots of good non stone forming things-if I get pain in my abdomen, I know what to do.
I pray
I am nauseated pretty much all the time now and feel pain enough to keep the advil flowing. Day 23--hoping this will be the very last herx I ever have and can live a lyme free life forever once the IV is over. (I can dream.)
Kath and Kar--what's up? How are you feeling? Smiles, how is the claforan working? Still hurting and dumb? (Hope not.) I guess it means it is working...
Jeff How is your daughter holding up? How is the home made ceftriaxone going?
Hugs to all today! Kim
-------------------- We are spiritual beings on a human journey...
Those of you with gallbladder problems. I had mine removed last year. Mine was full of stones.
I had the surgery as an out patient. It was not bad at all, and I feel much better in that department.
I have decided to stay the course and pay for rocephin out of pocket. I haved stared the appeals process with my insurance company.
I had a horrible night last night. I could not walk, difficulty breathing, felt like I guess would be an asthma attack, weak all over, and could not swallow. My vision also got dark.
I feel lousy today. I am about day 30 on iv. I suppose I am herxing again.
posted
To answer the itching question...no, I don't have hives. If I did I think I would stop the IV myself!! I just have slight itching...kind of like when you're sitting outside on a humid night and feel "buggy". I can scratch the itch and it goes away but then another spot itches.
It's really not bad, but I know it's something to pay attention to - just in case! The doc put me on Allegra and the itching is definitely less though not gone...not sure if I need to be on the Allegra longer. It's only Day 3 of Allegra!
For those of you who have lost gallbladders due to Rocephin...how long were you on it? My doc only wants me on for 56 days and then pull the line.
I am starting to feel pretty good although walking long distances is still an issue for me. I haven't had to take Advil for a few days!!!!!! And I've been taking 4 to 6 Advil a day since January! If I don't need it, I try to give my poor liver a break.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
I know the kind of itching you are talking about Karen. I think that some meds just trigger that even if there is no real allergy. I think it is some of our Lyme neuro sx acting up sometimes. But obviously we have to be very careful about it being a potential allergy.
I wonder - for the gallbladder issues - would fats like EFAs (omega 3, evening primrose, etc). be a problem for the GB? These things are a lifesaver for many of us, but do we have to go off of them while on Rocephin?
Posts: 589 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
posted
We got our rocephin yesterday. Hooray. Now I've got to figure out how to mix the darn stuff. The bottles are different than the first we used. Oh well. Patience.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
posted
Anyone here with a Groshong central catheter?
There is air visible in my line. Just a tiny bit last night, but when I looked at it this morning before I infused, there was more.
I tried calling the nurse at my doctor's office before I realized that it was Saturday -- duh.
So I thought I would simply pull the air out before flushing with saline, but more air kept slipping in until I drew blood up to the syringe. This time it stayed put with no air so I got a new saline syringe and flushed it.
Everything went OK after that, but now six hours later, there are a few more tiny air bubbles.
How are they getting in there? Do you suppose I have a defective catheter? This is kinda freaking me out.
Kalina
Posts: 18 | From Texas | Registered: Aug 2006
| IP: Logged |
posted
I had air in my line too. We called the infusion comp and they said the entire line would have to be full for it to do anything at all.
Your infusion company should be available to you 24/7. Regardless of the time I would call them if you have questions, and if you are really concerned about anything they should send someone out.
As far as gallbladders go. I did iv rocephin 5 years ago and just lost my gallbladder one year ago. Not to be gross but first thing you will notice is bm's will be very light coloured. My llmd told me to watch out for this.
Last year I had alot of abdominal swelling, you would have thought I drank a case of beer the way I was burping. Also upper back pain, and naseau is common.
I am hanging in there. Today I was more active. I am not setting the world on fire but I am up and around. I am still not driving. I am my own captive audience, and it's getting old. I dream of the day I will act my age and not my grandmother's. She's 97, and healthier than I am. Oh well at least I have good genes in the longevity department.
Everybody hang in there. We'll get through this. I emailed that petition to my friends and family the other night. I guess every little bit helps.
Does anyone feel like their thoughts are all over the place. I feel like I have ADD to the 10th power. Man it's frustrating.
posted
Thanks, Kat! I was told by the nurse at my doctor's office that SOME air was OK, but I wound up with a lot of air in my line. It's good to know how much is NOT OK.
I guess I don't have an infusion company. The line was installed at a hospital arranged by my doctor, and then I had to go back to the doctor's office for training the next day.
I know what you mean about the "ADD"! I feel like my brain is exploding in a thousand pieces, thinking a thousand different thoughts.
Hope this gets better.
Kalina
Posts: 18 | From Texas | Registered: Aug 2006
| IP: Logged |
posted
Hi guys, I am depressed today. So tired and sick of being sick...
Kat, glad you are up and about today, Kal, I have some bubbles too but havent had any ill effects of this yet.
My crotch hurts,hips, groin area and down legs to feet. My chest is tight and my jaws hurt. just want to roll over.
ADD! I think I don't even have and A. just DD...
This weekend the dog went blind--he bangs into everything and I have to watch him like a hawk, he walked into rose bush and now has eye abx three times a day..
To come in the house, he scratches at the outside of the fireplace.
It's a real circus around here taking care of me and him and two teenagers and hubby.
Then there is Iraq.
At least I can look at the dog and be happy cause it could be worse for me...at least I can see!
Then I took a walk this morning and some guy saw my IV and told me a awful story about a friend who is still sick after three years and never getting better. That was fun.
Now I will struggle to bring my angry daughter to the gym, go to my sons baseball game, hide my IV so nobody tells me another horror story, and put the cone collar on the dog and baracade him in the laudry room.
Glad we all have each other.
-------------------- We are spiritual beings on a human journey...
I so understand your depression...and hearing other people tell horror stories (duh! keep the horror to yourself and only tell the good things!!), however, I am laughing so hard at what you wrote and how you wrote it!!
First, the "DD" instead of "ADD" made me laugh out loud! Last week I asked my husband where he put the brown things that grow in the ground. I couldn't remember the word "potato."
Then I pictured your poor blind dog with the cone collar. I know it's not funny but it is (if that makes sense). My aunt's dog had cataracts and used to bounce off the furniture and walls like a pinball machine. (It didn't hurt the dog - just looked funny to us.)
Then you have teenagers which is stressful enough on a good day! I do hope you find something to make you laugh today like you made me laugh!
"A cheerful heart is good medicine..." Proverbs 17:22 And that's one medicine we can enjoy in large quantity without any terrible side effects!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
I have no motivation. However I am going to take a shower and try to look normal.
Pain in my legs this morning but now it's past. I feel dizzy and just can't seem to get a deep breath.
I could sit and stare at the walls all day today, but I won't let myself. It's just to nice outside.
Posts: 175 | From Pa | Registered: Aug 2006
| IP: Logged |
posted
Hi Katcon, I'm from Pa too.....near Morgantown/Reading area. Where are you?
I do feel better overall on IV rocephin.....I never do well with orals for some reason. It's my second time around and insurance woes made me get off too early last time.
I was in constant pain all of the time with really bad brain/neuro/memory problems before the IV. And mucho depression and fatigue. I actually felt, at one point, that dying wouldn't be that bad...sad, I know.
The continous IV has helped a lot......I think I am about 50% better on it than before. When I first started, I noted I was a 10 on almost every one of the 70 or so symptoms of lyme.
Now I'm about a 5.....so I should not complain. My doc is wonderful. She's a GP, but trusts me to keep me on lyme protocols that I share with her.
I think the biggest issues for me right now is that I'm gaining weight continuously and I have back and leg/foot pain that went away before.
I realize there are cycles and must be experiencing this.....it's just so hard sometimes. I want to be who I used to be.
But I am more of myself than I was before I started IV. I am not as desperate as I was or depressed or despondent.
Just keep at it. I will too. ))))
Posts: 867 | From PA | Registered: Jan 2006
| IP: Logged |
posted
Yes Katcon, I feel the rocephin makes me edgy, restless, almost too much nervous energy.
Nevertheless, after 20 days of it my brain is functioning like it used to. No more brain fog. No more memory problems. Well, I still have to see -- maybe I will see this winter if I audition for a play and see if I can learn my lines. It has been 3 years almost.
Update on mixing: I tried it and failed. I am biting the bullet, borrowing some money, and having it mixed professionally. They will connect 100 cc saline bags with something called a vial mate. I will arrange it tomorrow morning, and maybe we will be able to start tx again in a few days.
I must have walked two or three miles today. No problem. Wow. For those of you who don't know, I was wheelchair bound this time last year. Walking was too painful and exhausting.
By the way, I don't think the rocephin has done it all. I was on abx over a year before starting. Ketek and ceftin caused the worst herx. And I treated babesia i hope successfully because that mepron was a b****.
Does anyone else feel rather fragile / "open" / vulnerable while on the rocephin? I seem to feel this way, altho god knows, it could be the lyme and/or all the other life problems that have arisen out of being so catastrophically ill.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
posted
Just got back from the doctor...my CPK has dropped yet again and I am so excited. I just might beat this disease! My level before treatment was 2700...and it is now 892! Just getting good news makes me feel like I can walk better!
I'm also hoping that will be enough to convince the insurance company that this is definitely working (since they called it experimental and ineffective!).
Along with the good news comes the bad though. Through all the different tests they have done to rule out other problems, they "accidently" came across a nodule on my thyroid. It is 2cm x 2cm and they want me to schedule a biopsy.
I doubt it is anything worth worrying about (blood work for thyroid is perfect) so I may put it off until the IV is done. How many things can a person have poking from their body anyway?
Hoping you all have a great day!! Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
Just came home from a funeral. A 16 year old friend of my daughters who committed suicide last week.
There were hundreds of people. The boy was a straight A, honor society, varsity swim team, peer minister at his church, happpy family.
Why? He left a five page note that said it was all too much stress, and 9-11 was too hard to deal with.
(No indication that he had lyme disease, but leave it to me to wonder)
So as I sit here in my black skirt that is hanging off my skeleton body, with pain wracking my head and joints and pumps that are killing my tender feet I am also thanking God for my life, my kids and the opportunity to still hope and dream.
Prayers for the Kearney family and for anyone suffering today...
-------------------- We are spiritual beings on a human journey...
Looks like this thread also is getting a little long . . . maybe we should start a third?
I have been 3 days without it, and feel worse this morning. I sent our supply off to the infusion place, and they will be sending it back today so will start again early tonight.
Man, it has been a hassle to get this going. Insurance approves it, disapproves it, said they never approved it ... home health shows up suddenly, disappears suddenly ... now I am getting bills from the pharmacy that supplied two weeks worth to the home health agency . . . $5,000 for two weeks worth of prepared generic rocephin, for the two of us. There is no way I am paying any of this -- insurance, home health and the pharmacy will have to figure it out. Of course, I will be in the middle, with no way to avoid this.
And one other thing while I am venting (LOL). It will cost as much for the supplies and to mix the rocephin, as the rocephin costs!
If the first 20 days was any sign, I would like to be on this stuff for a year . . . LOL. And then my daughter and I can join tothepoorhouse and go directly to the poor house, do not pass go, do not collect $200. My wife is angry because we have to go into debt to do this. Oh well. I just want to get better . . . and I am (fingers crossed)
My LLMD says the gallstones thing with rocephin is blown way out of proportion ... it's rare ... so I am going to be taking curcumin (sp), a natural herb, which dissolves the stones if they start forming (supposedly).
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
posted
I didn't ask my dr about the gallbladder but was told what symptoms to watch out for. If I have any of the symptoms, then they will stop the infusion for a day or two and just hydrate me before resuming treatment.
This makes me think it would be in my best interest to stay hydrated before any of these symptoms show up!! The meds are definitely working. I feel so much better than I did a month ago before I started...so even if I lose a gallbladder, it'll be worth it to get better!!
Off to hydrate....
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
says to take it to treat them (Curcumin is an active ingredient in turmeric).
Very interesting.
What do you guys think about the GB flushes while on Rocephin? I have another thread on that with some links - similar to what we do for herxes. I wonder if my doc will think it is a good idea.
I start rocephin tomorrow... but also happy.
Posts: 589 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
KP - good news about the CPK. I have never had this blood test done.
Jeff - I know what you mean about the fragile stuff. Sometimes I feel like I could just burst into tears, or I get angry very easy. Usually on days when the fatigue is really bad, and I can't cope with all the responibilities of family life. My personality is so different from who I was. It takes me a while to understand things, when having a conversation with someone it is difficult to retain all the info. OK enough of that.
More cheerful info.
Posts: 175 | From Pa | Registered: Aug 2006
| IP: Logged |
posted
Kat, Can you try what KP's doc recommended? Up a few posts in this thread? Maybe back off and hyrdate? How long have you been on it for?
Posts: 589 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Embarrassed]](redface.gif)
(![[confused]](graemlins/confused.gif)
![[Frown]](frown.gif)
![[Eek!]](eek.gif)
I will be seeing his partner for my follow-up on Monday and will talk with him.![[hi]](graemlins/hi.gif)
![[bow]](graemlins/bow.gif)
![[group hug]](graemlins/grouphug.gif)
![[dizzy]](graemlins/dizzy.gif)
![[lol]](graemlins/lol.gif)
And that's one medicine we can enjoy in large quantity without any terrible side effects!!![[Smile]](smile.gif)
Where are you? 
Printer-friendly view of this topic