LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




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.

LymeNet Flash Discussion
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 Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Want to BACK out of IV decision.....Should I???

 - UBBFriend: Email this page to someone!    
Author Topic: Want to BACK out of IV decision.....Should I???
jenn
LymeNet Contributor
Member # 21687

Icon 1 posted      Profile for jenn     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm scheduled to get picc line Friday and get first dose of Rocephin for the next 28 days (insurance will only do 28),

I've been treating for the past year and a half with orals and have been happy with my RESPONSE to treatment. However....

After a full year of treatment...I thought I was symptom free and decided to stop. Symtptoms returned with a vengence less than 2 months after!

Starting up again on Orals and responded rather Quickly...Crushing Fatigue, Irritiability, Sore muscles and joints slowly disappeared within 4 months of Oral Abx.

Last apt. llmd suggested we start IV...But reading and researching, IV doesn't always work for everyone. And 28 days is a drop in the bucket for IV treating Lyme.

If I'm making progress with Orals (OK...slowly) Very few symptoms, but FLARE especially around my PMS CYcle..... I'm second guessing my decision to start IV.

My health is compromised with auto-immune disease. Although I'm a healthy Type1 diabetic and have Hashimoto Thyroid... All tightly controlled . I was informed that it's harder to Treat Lyme.

Very Confused??

Advise needed! What would you do??

Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
LSG Scott
LymeNet Contributor
Member # 21624

Icon 1 posted      Profile for LSG Scott     Send New Private Message       Edit/Delete Post   Reply With Quote 
it may get you right back to good health

just make sure you take actigall with the IV Roceph to protect your gall-bladder and make sure you take a cyst buster to not relapse this time

I say go for it you can handle 28 days and your lucky to get it.

--------------------
LSG Scott

Posts: 506 | From Boston, Cape Cod, Mass | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
I did IVs for 6 1/2 months. It helped, but I relapsed 3 weeks after stopping.

Since you've had a good response with orals, perhaps stick with them (less risky and less expensive). When you are symptom free again, perhaps don't quit cold turkey but pulse the antibiotics....

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
annier1071
LymeNet Contributor
Member # 28977

Icon 1 posted      Profile for annier1071     Send New Private Message       Edit/Delete Post   Reply With Quote 
I agree with timaca....why would u take IV for only 28 days when oral is owrking for you????

I was offered IV for 28 at the start but then the llmd asked if I could pay for the second two months....no way...so he said it would fine on oral abx.

ALthough I am not seeing a good respons except now I have pain on top of neuro issues in 4 months (only 3 on a single oral and now the 4th on two), I managed to get rid of my brain zaps!!
I am still having vertigo and some cognitive though.
I am not sure 4 months is long enough to determine, although my neuro says its TOO MUCH ughh!

I cannot decide for you, but I just dont see the reasoning after so long. You probably should go off the oral slowly this time instead..

What auto immune disease? I have thyroid too and it is controlled now..is that considered auto immune. I also have CFS

--------------------
Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin.

Posts: 788 | From New york..queens | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm with timaca too. I've been here 10+ years and have seen tons of people relapse after being on Rocephin. Some were WORSE off than when they started. One month won't do much.

--IF I did it, I'd be sure to take Actigall and flagyl....

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95439 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've only been reading here about 6 years and yes people do relapse but I've seen plenty that have had remarkable improvement with IV.

Perhaps you can ask your LLMD for IM Ceftriaxone or bicillin before going the IV route? Many ppl have great success with those. IM ceftriaxone helped me a lot.

Personally, I'd have a very frank discussion with my LLMD about my concerns and if he still wants to go IV, I'd do it.

Over the years, I've read quite a few articles and seen presentations by LLMD's who state emphatically that some ppl need IV.

Terry
I'm not a doctor

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
But Terry. Not everyone uses IV Rocephin. It's not the only thing available by IV.

I'm not against IV but I would not personally choose Rocephin if I was going that route.

I think if patients will be sure to get flagyl in there somewhere and take orals afterward, they can escape a relapse.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95439 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
jenn
LymeNet Contributor
Member # 21687

Icon 1 posted      Profile for jenn     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all for your advise and support!! [group hug]

I have decided to stay on Oral med's since I'm doing well without any complications and able to keep up with my young kids and all the demands a Wife and Mother have...so GOD bless for that!!

I will however, save my "1" shot IV treatment covered by insurance if all else fails...and save some extra $$ needed to prolong IV treatment after the 28 days covered if needed!!

Seriously, I can not thank you ALL enough for your support, advise and knowledge that you've given me!! Love you ALL....and couldn't do this without you!!
[kiss]
Jenn

Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
tutu - I agree. I didn't mention any particular med for IV but I did mention ceftriaxone and bicillin IM. IM is often covered long term by insurance and does cover almost as well as IV I think.

jenn - I can understand why you would like to avoid IV. IM might really be useful for you.

Wishing you the best,
Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359

Icon 1 posted      Profile for Lymeorsomething     Send New Private Message       Edit/Delete Post   Reply With Quote 
Also have to watch for blood clots with IV, especially in individuals with Factor V Leiden clotting mutation as well as other genetic conditions...

--------------------
"Whatever can go wrong will go wrong."

Posts: 2062 | From CT | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
sickntired19
LymeNet Contributor
Member # 21949

Icon 1 posted      Profile for sickntired19     Send New Private Message       Edit/Delete Post   Reply With Quote 
I guess seeing that you would only get 28 days and that you ARE seeing improvement on the orals, I would stick with them!

Also, it sounds like you maybe stopped the abx very soon after becoming symptom free, and that is not good. That is what allows you to relapse. You need to stay on abx for 2-3 months after becoming symptom free to be sure that you got the bugs the best!

I hope that you continue to get better!!

Posts: 265 | From Oregon | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561

Icon 1 posted      Profile for lyme in Putnam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Relapsed after a few mos off rocephin. Lost my gallbladder too. Orals might cut it for you. They have before. Good luck.

--------------------
He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


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


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.