I am considering another round of IV therapy, this time with Claforan. Tried Rocephin last year....it was great, but the symptoms are returning.
My llmd reports good success with this abx but I am not finding many reports here either way. LLMD says to expect a punch in the first month followed by much better days.
After searching, I tried to pm a fellow lymenetter or two but didn't/havn't rec'd any responses yet. Maybe they are better and moved on! Most posts say its very expensive but lack any clear indication whether it was worth it for them.
Please share your thoughts/stories, good and bad.
Posted by just don (Member # 1129) on :
Clafran is the safened form of Rochephin,,,so they are basicly the same. Easier on the gall bladder tho.
I took a short course of Clafran,just when I felt it turning the corner the insurance company cut me off,,,sooo, it was worse than nothing ,,,for me!!
I probably wont get ANOTHER chance at getting to the corner to turn either, ,,,no insurance and out of pocket wont happen unless I buy that magic scrap of paper at the lottery store!! FAT chance!!!
Try it,,,you may do well on it,,,follow up with others tho or a combo, alone you never know whats right till it doesnt matter any more!!being--just don--
Posted by DallasGal30 (Member # 9861) on :
HI, I have been taking IM injections of Claforan for two weeks now. I never really herxed from it though. It is making my bladder feel terrible (my biggest Lyme symptom is IC in the bladder). Doc told me to discontinue today. I was excited because I was treated with IM injections of Rocephin while in hospital and my bladder symptoms had disappeared for 24 hours. And, as you know, Claforan is similar to Rocephin.
Were you taking Rocephin via PICC line? You can PM me if you would like.
I'm getting very frustrated with my treatments. Some will seem to work for a while, then stop working. Very aggravating.
Am I supposed to herx to know that the abx are working?
Anything you can tell me about Rocephin treatment will help me a great deal. Thanks!
Posted by WildCondor (Member # 434) on :
sent you a PM ...
Posted by YorktownNL (Member # 7657) on :
Thank you thank you thank you. It seems not many Clarofan users though out there.
My rocephin treatement was six months IV, three months at 2 grams per day and three months at 4 grams a day ending last October. I used oral biaxin or zith the whole time on IV. I recommend the extended treatement if you are fortunate enough to have the coverage....it was easy to tolerate, much easier than orals. And the PICC line wasn't as scary as it seems.
On Rocephin I went from absolute lathargy to running a few miles a few times a week. I was re-enthused at work and my old self with our kids. It was heavenly to feel so normal.
I've stayed on orals since and treated WA-1 (sero postive through Labcorp) with Mepron for four months....that was rough.
I skipped out of the doctor's office last October. Crawled (I exagerate) in a few weeks ago. The rocephin did not clear all symptoms, but the follow up treatment hasn't either and I slowly got worse.
I was feeling so bad on Mepron I was ready to start talking about arrangements and stuff with my wife. Our will is in order but you know there are things to prepare for. But,
My doc identified a significant Carnittine Deficiency and with three weeks of supplements behind me I am feeling pretty good, am able to work out again and think semi straight.
My face is still so droopy though, and I am hoping the carnitine will help these muscles re-strengthen. I used to think I was sort of intelligent...or I could hold my own but I've lost that and I am hoping the IV (if I do it)will help get some back. Likely need to add flagyl sometime too.
My doc wants me to chelate metals and I found a doctor to help with that but I am weary. I do have a mouthful of metal. Also have hypercoagulation problems that I am controlling with aspirin therapy and supplements. I think chelation will help with this also.
Don't get me wrong, the Mepron depression and yuck aside, I am overall so very much better now, especially compared to two years ago when this whole mess started.
Thanks, Mike
Posted by lymeladyinNY (Member # 10235) on :
I took IV claforan in December, 2005. It didn't make me feel better, and after 3 weeks I ended up with a high fever and felt terrible.
After I took my last dose I was screaming in pain - it felt like my legs were being broken from the inside out. I became delirious with fever.
I was sent by ambulance to the ER where they discovered I had a neutropenic fever - my white blood cell count was down to almost nothing.
I had to spend 3 days in the hospital over Christmas and everyone wore masks around me. I felt like my life was over I was so sick.
When they took me down for x-rays I fainted in my wheelchair - the only time I've ever fainted in my life.
Later I found out that one of the possible side effects of claforan is reduced white blood cell count.
So, for this lymie, claforan was a DISASTER!
Posted by mckale58224 (Member # 8757) on :
Sorry I am not really giving answer to original question, just kinda asking about the same thing. Haven't been on this site for a while but whenever I get stymied, seems you all always have been there, done that.
Without a gall bladder, daughter's Rocephin experience has been smooth. She has been on Rocephin for 3 months without much improvement in the myofacial pain, (helped cn symptoms)just got switched to Claforan and insurance won't approve.
Have to pay for it out of pocket and can't find a good source. Want to continue despite scary stories because she will begin chelation and want to give this a chance after that. Anybody show lots of improvement after chelation?
If results were good, would do it, the debt would be worth it, but need to find a good source. Any comments?
Posted by stymielymie (Member # 10044) on :
claforan's ok iv may want to try vantin by mouth first. it is a 4th gen cephalosporin and works as well as clarforan iv.
my llmd is also a specialist in exotic diseases and knows many drugs even llmds don't know about
docdave
Posted by YorktownNL (Member # 7657) on :
I had read about Vantin and will discuss with my llmd next month...before I go the PICC route. The vantin is exciting as I've done well on cephalosporins.
I've been holding my own for a little while and don't want to mix things up until summer is over. So I'll stay the course awhile longer with Spectrocef and zith.