LymeNet Flash: Lyme Relapse is absolute torture

LymeNet on Facebook

LymeNet on Twitter

Follow @LymeDiseaseNet

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

»	LymeNet Flash » Questions and Discussion » Medical Questions » Lyme Relapse is absolute torture

UBBFriend: Email this page to someone!

Author

Topic: Lyme Relapse is absolute torture

Tallahasseeborrelia
Member
Member # 13828

posted

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.

Posts: 27 | From Tallahassee, FL | Registered: Nov 2007 | IP: Logged |

pepperspeck
LymeNet Contributor
Member # 18837

posted

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.

--------------------
I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!

Member red (Member # 1886)
Registered: 26 November, 2001
70 posts

Posts: 164 | From NJ | Registered: Jan 2009 | IP: Logged |

bettyg
Unregistered

posted

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 ...

IP: Logged |

Tallahasseeborrelia
Member
Member # 13828

posted

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?

Posts: 27 | From Tallahassee, FL | Registered: Nov 2007 | IP: Logged |

Tallahasseeborrelia
Member
Member # 13828

posted

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.

Any advice at this point?

Posts: 27 | From Tallahassee, FL | Registered: Nov 2007 | IP: Logged |

Printer-friendly view of this topic

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, NJ 08534 USA
http://www.lymenet.org/