posted
Has anyone found a LL Neurologist in NY, NJ, Conn.,or anywhere in that area?
Posts: 46 | From woodstock, NY | Registered: Nov 2012
| IP: Logged |
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I would like to know of a good LL neurologist in New England or NY as well.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
Dr Y, the supposed LLMD neurologist at NYU, is doing some research on lyme. However, he is extrememly expensive and knows next to nothing about the coinfections. Also specializes in IVIG which not everyone qualifies for and only helps about 50 % of lyme patients.
The Columbia University 2nd opinion lyme program has a pretty good lady neurologist, but the drawback there is that they don't really treat -- only diagnose, plus do not think they are very up to date on coinfections either. They refused to see hubby a couple of years ago -- said he was too sick for them to help.
My personal opinion would be to get a brain SPECT scan done at Columbia but find the best LLMD you can for treatment and forget about a neurologist except to rule out other illnesses. Not much many of them can do to actually help.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Thanks, Bea. PM sent.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Hi Bea, It looks like your mailbox is full. I will try to write here with just doc's initials...
Thanks so much. It is so nice of you to stay involved with lymenet trying to help us all.
I have already had a spect scan done at RI Hospital, which showed some abnormalities consistent with lyme (hypoperfusion). I also had 3 brain MRI's with one lesion that remained the same in the year prior to beginning treatment. I'm almost afraid to see what it would look like now...
Just trying to figure out if lyme and co. are responsible for deafness in one ear and fearful that it could cause same in my good ear. I am well except for bad tinnitus, buzzing sensations in my head and internal tremors that nobody can see. I know that there is either lingering infection or perhaps parasites, heavy metals causing remaining symptoms...
There was a neurologist shown in a segment on the Boston ILADS conference with LLMD, Dr. G from CA. The neurologist is Dr. A in NYC. Dr. G said he saved a patients's life (he was a CEO who had been hunting and soon declined rapidly) by recognizing that he indeed had a case of advanced lyme, when other MD's were ready to place him in a nursing home. I was curious if anyone else had ever been treated by this neurologist. I think he is in his 70's. I was very impressed by what I saw.
I guess all a neurologist could do is confirm that my lingering symptoms are lyme related. I went to a lyme literate ENT in NJ hoping he could shed some light. He ruled out a couple of serious conditions but that was it.
I just don't want to go completely deaf. Perhaps going to that neurologist at Columbia for a second opinion might be something that could help me. I am scheduled to visit a holistic dentist next week, who is familiar with Dr. K's protocols. Maybe he will be able to shed some light on things for me...
Thanks again. I think of you and your husband often.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
I posted a thread with your name on it in medical. Has some info on hearing loss you might not know about.
The neuro -- Dr P in Florida -- is one hubby saw for his Parkinson's like lyme presentation. Back in 2001 the doc was not really lyme literate. He was a neurosurgeon before going into practice for himself as a neurologist who specializes in brain nutrition. Even though he is into ACAM medicine he pretty much only does things that are AMA approved.
He does have a hyperbaric practice as well as the neurology practice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
I agree with Bea that you should be evaluated and treated by a LLMD (Lyme-literate doctor).
Posts: 8981 | From Illinois | Registered: May 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!
Printer-friendly view of this topic