-------------------- pingpong Posts: 361 | From At the Pingpong Tournament | Registered: Oct 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Up up UP!*)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
I've heard good things, but don't know personally. Anyone?
Posts: 621 | From US | Registered: Jun 2006
| IP: Logged |
bettyg
Unregistered
posted
up for more input! did you bea check with any support groups leaders in that area??
i lost phyllis 50 state address link she set up for each state in yahoo ... you might check that too if you have it from earlier when i sent to you.
IP: Logged |
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
The moderator of that group presented at the recent ILADS conference.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
ArtistDi went to him, she received a $10,000 arts grant from the state to pay for the testing which is expensive. The comprehensive testing allows him to show, I think, CNS and peripheral nerve damage from lyme and then treat with IVIG. I imagine he's using a model of Guillain-Barre etc. He could be doing a lot for lymies ultimately if IVIG gets covered. If I can go to this talk I will try to. Unfortunately that is a Saturday and I usually go to my doc in Long Island but maybe I can switch things around. Also it's on the other side of town from me and virtually impossible to get to without 3 subways, or else a cab which is about $25-30 each way.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
That site has been updated- the co-moderator of that meeting is DOctor B himself!!!
So I would say they are ILADS supporters*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
Would like to meet fellow LymeNetters at this meeting tomorrow. I will be there, but hubby is in Lenox Hill Hospital in Manhattan -- not what we hoped this trip would turn out to be.
Too upset to go into details right now, but I am sure some of you remember those days when you were undiagnosed and untreated.
Hubby was taken off all symptom control meds cold turkey against at least 2 other hospital docs advice. Also stopped antibiotics for Bartonella and denied pain meds for new symptoms of nerve pain and headaches.
Neuro symptoms worst they have been in 6 years. Despite a "complete" workup (obvious oversight of any tickborne testing) hubby is getting the "it's all psychological" diagnosis.
At this point we are even willing to let the psychologist take over as he disagreed with the neurologist who is in charge about stopping Ativan cold turkey.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
bettyg
Unregistered
posted
steve and bea
sending thoughts and prayers for you all! unbelieveable story; hang in there!
IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Oh my goodness, Bea.
I'm so sorry.
Can't imagine what you and Steve are going through.
Hope you can find a gutsy and intelligent doctor somewhere, somehow.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sorry to hear that Bea. I am pm'ing you with a doctor's name, who would do a better job.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I know two people who did IVIG and both had temporary results.
One of them has used IVIG for years, but can only get it once a month now. It makes him feel better for a couple of days, but used to make him feel better for weeks.
The other person did it for a while and felt he picked up more organisms from the globulin.
Just passing along second hand knowledge.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
posted
Hi I did the IVIG for 5 days because my neuropathy was horrific and it did nothing for me. Actually I was planning how my family would live after I had died...thats how much fun I had with it. Now I am on IV Rocephin and zithromax...seems to be doing more..a little. This was my experience. My belief is that ou must target the cause of teh symptoms....in other words KILL the Lyme and Babesia...then the symptoms will go away. The IVIG is supposed to boost your immune system so I do not think it hurts...but it sure did not help.
Posts: 422 | From CT | Registered: Oct 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I know someone who has been in full remisison for 8 years but she does do IV IGG once a month every month!!! She was a Doc S patient who started doing that with him, now she sees someone in Monterey!!! Doc S uses IV IGG with a subset of neuro patients-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry Bea.
I checked out the website and they have good links except they do link to National Institute of Allergy and infectious disease which provides incorrect information and is tied with with IDSA.
I hope things take an upturn for Steve.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
steve and bea 
Printer-friendly view of this topic