I have been on IV Rocephin for eight weeks now after suffering a relapse.
2 grams twice daily and I do not feel any better.
I was taken off oral antibiotics back in Jan. '08 after 2 1/2 years of orals.
I was so much better by then, although I have never been able to get rid of my achy knees and the neurological damage done to my right leg.
Eight months after stopping orals, I had a major relapse.
This time with crushing fatique and severe headaches that never seem to stop.
My LLMD in NYC put me back on orals, ceftin/azithromycin.
Six months later there was no change and I now am so sick I could not make the trip to NYC and had to find a more local doc.
What's more, I am on short term disability from work and have just filed for SSD.
I am so much sicker since the relapse then when I first was sick.
My Tampa doc thinks I should have felt improvement by the 6th week.
He believes I may be cephalosporin resistant having been on oral Ceftin/Omnicef for 3 years.
He may switch me to Vancomycin.
I was wondering if anyone else has had a similar experience with a relapse and IV Rocephin not helping and if anyone has experience with Vancomycin.
Thanking you in advance for your comments.
Posted by pepperspeck (Member # 18837) on :
I was on vancomycin (plus orals) for about a year and a half. It took some major detox to feel improved, which lasted about 3 years. Now in the midst of a relapse that needs to be stopped.
Cognitive issues are still gone, for the most part.
I was on rocephine (plus orals) for a year prior to the switch to vancomycin.
I have not heard much from others that have been on vanco, so interested in other responses.
Posted by bettyg (Member # 6147) on :
TB,
sorry i don't have any medicine advise.
you mentioned you just filed for SSDI, disability insurance work benefits.
did you use our combined SSDI VALUABLE INFO IN "SUPPORT" posted by MINOUCAT?? i sure hope so that you got included the necessary medical, supportive RFC, residual function capacity, form done by all yoru SUPPORTIVE DRS.
did you do this on your own or a lawyer assisting you?
we just want to make sure you have submitted enough STRONG, SUPPORTIVE STUFF to win 1st step, 1st time or it will take you 2.5 years to get an admin law judge hearing!!
best wishes both ways to you ...
Posted by Tallahasseeborrelia (Member # 13828) on :
Betty:
I do not yet have an attorney.
I went to apply at SSDI with a letter from my primary care doc, who has been working with my LLMD's since 2005.
All I had was the letter and my birth certificate.
I know how difficult it is to get SSDI, but 2.5 years would be disastrous for me.
Every lawyer I spoke to before I was ready to file, said that I could expect to be turned down the first time.
I am not financially able to wait 2.5 years.
Any suggestions at this point?
Posted by Tallahasseeborrelia (Member # 13828) on :
Betty:
All I had when I applied at SSDI was a letter from my primary care doc and my birth certificate.
I do not yet have an attorney.
2.5 years would be disastrous for me.
I am prepared to be denied the first time, but not two and three times.