I have an appointment at a University Hospital/Neurosciences Clinic (in Colorado) this week, and I just thought I'd post this question: would a neurologist at a place like this be well-informed on Lyme Disease? I would think so. (the form I have to fill out asks if I have had a tick bite!) I don't know, I'm trying to rule-out MS (or rule-in MS), and basically find out what's wrong with me.
Posted by seibertneurolyme (Member # 6416) on :
Logically, in a perfect world the answer would be yes. In the real world the answer is a resounding NO.
The 1st 13 of 14 neurologists hubby saw thought his tremors were due to anxiety/depression. He also has 4 or 5 white matter lesions on MRI's. Parkinsonian tremors progressed to myoclonus and seizure-like episodes.
He has Lyme, Babesia and Bartonella.
He saw neuros at University of Virginia, Mt Sinai Hospital in New York City, Kansas University and Indiana University among others. The only neuro who knew anything about Lyme was an LLMD neurologist.
If you do a search there are many people here who were originally misdiagnosed with MS.
University neuros can order tests, but they most likely will not order the right tests to diagnose Lyme and tickborne diseases.
This is not medical advice, but my opinion based on experiences with hubby.
Good luck.
Bea Seibert
Posted by lou (Member # 81) on :
I'm thinking the question about tickbite has to do with Colorado tick fever, not lyme, etc. So while they might know enough to consider one tick disease, this may not extend to others.
In general, university hospitals and neurologists have a poor track record on lyme. It is absolutely contrary to what you would expect, but that has been the most common experience among people with lyme and the coinfections.
If you are going there anyway, they will do some testing that might help a real lyme doctor determine what is going on. In short, the test results might be helpful, but don't count on them diagnosing it correctly. They will more than likely use only the ELISA antibody test, which has a lot of false negatives, especially at the late stage. Using only this test and believing absolutely in the results is one way you sort out the docs from the ducks in the lyme world.
I am not saying you have lyme disease, but if you do, this is what will probably happen at the university hospital.
Posted by Michelle M (Member # 7200) on :
You need an LLMD.
Doctors at university hospitals do NOT keep up with advances in lyme disease. They still cling to the antiquated beliefs that land people in trouble to begin with, i.e., "10 days antibiotics and you'll be fine..." -- , or "you may have 'post lyme syndrome' but there is no such thing as ongoing infection."
As Bea and Lou point out, they will be clueless about tests. If you actually make it beyond an ELISA (on which about half of all chronic lymies are negative, by the way--not that THEY'LL know that), they'll use a crappy lab to do your western blot. At this crappy lab, the important bands won't even be reported - you know, the bands MOST SPECIFIC to lyme disease. I guarantee you they will NOT use IGeneX and will scoff at the idea, despite its being the best lab in the country.
So, while you may get one helluva workup there, you will have no idea whether you have Lyme.
Find an LLMD by posting in "seeking a doctor." He will not just blindly tell you that you have lyme, either -- if necessary, he will recommend whatever testing he feels is needed to rule out other diseases if they are a concern in light of your symptoms and history. Those might include MRI, heart testing if you've cardiac symptoms, etc.
Good luck in your quest for health!
Michelle
Posted by Foggy (Member # 1584) on :
Other than Columbia in NYC, most academic hospitals follow CDC & IDSA guidlines which are not LL.
Folks this is yet another reminder why we need a dedicated Lyme & vector born illness research center at an academic hospital. Having the Columbia ctr fully funded is a must.
Posted by luke339 (Member # 8580) on :
I was at Columbia Pres in Dec. Complaining of stiff neckm burning pain, muscle twitching, eye problem, throat problem and many other symptoms and they did not even test me for Lyme even after saying i am from East Lyme CT. They thought more along the lines that i had a stroke of something (at age 30 come on).
Turns out I have Lyme and Erichliosis and who knows what else. Even your beloved Columbia did not screen me for Lyme and they have a Lyme Facility there. Medical Science moves too slow to help people today. If you have even seen the movie "Lorenzo's Oil" Then you will know what I mean.
Hopefully someones father will come and rescue us Lymies.
Posted by Foggy (Member # 1584) on :
Luke, if you care to make a difference, I'd be sure to tell them about it. No one is perfect but you'd expect better. If this were me, and I've given $ to the center, I'd be irked too and would direct my lament to the source.
Yes, I've seen Lorenzo's Oil. Perhaps you should investigate the origins of the Center. Are you aware that it was founded by a grass-roots campaign on behalf of a few concerned parents? Parents who went through the same frustrating diagnostic nightmare many of us went through. Parents who put their $ where their mouth is cause medical science moves too slowly.
That being said, I'd rather have a "beloved" center in an academic hospital that ain't perfect, than no center at all.
Posted by lou (Member # 81) on :
This is a big hospital. Because some people there know about lyme is not a guarantee that everyone does.
There are variations among the staffs of all hospitals as to their competence in every field, I would guess.
If you were not seen by the Lyme center at Columbia, then I don't think your experience is a reflection on them. One would hope that when the center is fully funded, they will have more of an educational impact on that institution as well as others. I don't understand why it has taken so long to get a relatively small amount of money. We know that some very rich people have had this disease, why haven't they stepped forward to help?
Posted by luke339 (Member # 8580) on :
I am not hating on that hospital I am just saying even at the best hospitals in this country they are not completely on point even in a high Lyme Disease area. Upstate NY has a ton of Lyme Infections per year.
Besides that the hospital was great, treating me very well there although learned nothing about why i was sick when i left.
Posted by concerned mother (Member # 8128) on :
We had a real bad experience at a University hospital here! They are suppose to be top notch in everything! That was a joke! They told me that there are a lot of people who think they have lyme and then the doctor snickered when I said I'm going to get my son tested. I have wanted to go back and stick the positive test paper in their face!
Posted by hurtingramma (Member # 7770) on :
My LLMD used to be head of the physical medicine/rehab dept of Dartmouth-Hitchcock - and he quit! He sends his patients to another local hospital for testing. Most of the neuros and rheumys there do not believe in Lyme.
Posted by Foggy (Member # 1584) on :