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 » IVIG treatment--How helpful has it been for you or someone you know?

 - UBBFriend: Email this page to someone!    
Author Topic: IVIG treatment--How helpful has it been for you or someone you know?
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm am going to see a LL neurologist (either Dr. K or Dr. W in CT) for evaluation for IVIG treatment. I have fairly intense autonomic issues---orthostatic hypotension or POTS, among other things.

I also have neuropathy.

For those who have received IVIG treatment, or those who know someone who has, how helpful has it been? Has it been worth it?

I need to decide by tomorrow, Thursday whether to keep my appt with Dr. K. Thank you.

Posts: 3676 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
ping
Frequent Contributor (1K+ posts)
Member # 6974

Icon 1 posted      Profile for ping     Send New Private Message       Edit/Delete Post   Reply With Quote 
Rumigirl,

The results from people I know are half good and half no difference or not so good.

I've never done IVIG, never wanted to do it.

--------------------
ping
"We are more than containers for Lyme"

Posts: 1302 | From Back in TX again | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Rumigirl,

I went to one of the New York City neuroborelliosis support group meetings once in late 2007 -- about 1/2 the patients there were patients of Dr Y -- the other IV IgG guru. In talking to those patients -- about half had at least some improvement with IV IgG.

Not sure there is any way to predict who will improve with this treatment -- but in my opinion neither Dr K or Dr Y have sufficient knowledge of coinfections. That could be why some of the patients don't improve.

Dr W had some training with the Dr B -- in discussions with that office I get the impression that he will diagnose and treat clinically for both lyme and coinfections. If hubby needs a neuro again he is the doc I would take him to. I was not aware that he used IV IgG -- but that is not something we have really pursued for hubby -- just seems like the more lyme literate neuros focus on that. Dr W is also very expensive for new patient appointments, but he does supposedly take some insurance. Waiting list of 4 - 6 weeks for new patients.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830

Icon 1 posted      Profile for lymebytes   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I recommend doing a search here on IVIG. Chances are 50/50 it will help.

--------------------
www.truthaboutlymedisease.com

Posts: 2003 | From endemic area | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you.

up for more replies.

Posts: 3676 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
up.
Posts: 3676 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521

Icon 1 posted      Profile for Tracy9         Edit/Delete Post   Reply With Quote 
I see Dr. W and he is my LLD. I've been his pt for a couple of years now. He treats everything and is very up to date on supplements too.

He is incredibly thorough, and sends you for a gazillion tests. He is very expensive, $950 for initial appt, but takes Medicare, United Health Care, and I believe Aetna but no BCBS plans. Expect a long wait in his office, he runs behind, sometimes hours. Just plan for it.

He is brilliant, and the office staff is extremely receptive. I am on IVIG right now through him. He is also a pain management doctor and a back specialist.

We just started an IVIG group on www.lymefriends.org and have some great discussions going there! Come join us.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

Icon 1 posted      Profile for METALLlC BLUE     Send New Private Message       Edit/Delete Post   Reply With Quote 
Mixed reports based on what I've been hearing.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you, Tracy, MB, and everyone else. It's hard, because we have no way of knowing whether IVIG will help or make us worse, or no effect. But that's the same with all tx for us!
Posts: 3676 | From around | Registered: Mar 2008  |  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.