Anyone been to one of these meetings? Do they believe in chronic Lyme or is their philosophy more "post-Lyme" ?
Looks like 12/8/07 may be thier 1st meeting?
The doc who is the moderator is the Chief of Neuromuscular Disorders at NYU.
Bea Seibert
Posted by pingpong (Member # 13706) on :
up
Posted by CaliforniaLyme (Member # 7136) on :
Up up UP!*)!!
Posted by ldfighter (Member # 9405) on :
I've heard good things, but don't know personally. Anyone?
Posted by bettyg (Member # 6147) on :
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.
Posted by shazdancer (Member # 1436) on :
The moderator of that group presented at the recent ILADS conference.
Posted by oxygenbabe (Member # 5831) on :
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.
Posted by heiwalove (Member # 6467) on :
interesting. i'm gonna try to go.
Posted by canbravelyme (Member # 9785) on :
Medical Paper concluding that IVIG is a viable treatment option for Lyme disease:
That site has been updated- the co-moderator of that meeting is DOctor B himself!!!
So I would say they are ILADS supporters*)!
Posted by seibertneurolyme (Member # 6416) on :
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
Posted by bettyg (Member # 6147) on :
steve and bea
sending thoughts and prayers for you all! unbelieveable story; hang in there!
Posted by Michelle M (Member # 7200) on :
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
Posted by Vermont_Lymie (Member # 9780) on :
Sorry to hear that Bea. I am pm'ing you with a doctor's name, who would do a better job.
Posted by kelmo (Member # 8797) on :
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.
Posted by Monica922 (Member # 13496) on :
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.
Posted by CaliforniaLyme (Member # 7136) on :
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-
Posted by TerryK (Member # 8552) on :
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.
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steve and bea