seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I just got an e-mail from my allergist and he recommended this place to determine once and for all if I have Lyme. He said they are the best in the USA. He recommended i stop all Abx until they confirm Lyme.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
My doctor has sent lab work of mine to Stony Brook, I recognize the name. I did come up positive for quite a few bands on their Western Blot.
I don't hear of many other people on this site doing their testing through Stony Brook.....who knows why, but I am thinking they are better than Lab Corp at least?
I know of ILADS doctors who use them, so it can't be too bad. Might as well.
If it comes back negative though, I would recommend retesting at another time, maybe even when you take a break from drugs and are feeling different (either better or worse......blots are funny like that).
My tests from Stony Brook came back positive when I was on Amoxicillin though, and I had been on it for quite some time. I was IgM positive through them, and technically IgG negative.
I would try the tests under all different kinds of scenarios (on abx, off abx, good week, bad week, etc) if insurance covers it.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Why do you advise against them TC?
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
When I was trying to find out what was wrong with me I ended up in stonybrook hospital for a week. I had heard that they were really good and all that. I only had lyme for about 3 weeks when I went here. They told me I had cluster headaches.
They have not a clue on how to diagnose or treat lyme in my opinion, or in my llmd's opinion. All they kept on telling me was that it was not lyme. they had a team of neurologists trying to figure out what was wrong with me. They kept on asking me if I did drugs. I would say no and they would keep on asking.
Test results came back no drug use, but i tested positive for lyme. They told me it was an old infection. I told them I never had lyme before or was ever sick.
So then they told me I had cluster headaches and sent me on my way even though I couldn't walk. Right as I was about to leave one of the neurologists whispered to me that I should persue treatment for lyme if the headaches don't go away,but don't tell the other doc's he said to.
For a hospital that is known for tick disease, my experience was horrible. I highly suggest not going through them for anything.
Posts: 33 | From New York | Registered: Jun 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Sending labwork to them or going there in person?
If going there is an option, why not instead go to an LLMD?
LLMDs are amazing diagnosticians and if it's not Lyme they will find the source.
The difference is that they are versed enough in the intricacies of TBDs not to miss it if it is indeed Lyme or co-infections.
So you get the best of both worlds, with an LLMD.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My doc was recommending going there in person due to their extensive experience with Lyme he said it's more common in that area of NY than MI and they could definitely tell me if I have it.
I see a MI LLMD that proclaims I have Lyme/Babesia. Unfortunatly, The LLMD has got a bad reputation with all conventional docs. As soon as I mention the name, they all roll their eyes. lol. I don't give that much thought though honestly because I roll my eyes at their lack of diagnostic abilities. lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
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Member # 15759
posted
Why does it matter what the other docs think? If you are going to travel all the way to NY, I would just see an LLMD there. While you are out there, might as well get a SPECT done at Columbia if your insurance covers it.....they are "LL" when it comes to reading SPECTS.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Also, Seek, John Halperin, one of the IDSA guideline panel, hails from Stonybrook (he's now doing neuroscience in NJ). Before I was aware that he was a Lyme specialist, I went to him in NJ for an MS investigation. That was negative - I was very symptomatic at the time - but the concept of Lyme was never even mentioned by him -
My tests were through Stonybrook originally (neg results). Through IGenex I've had many positive bands, altho still not in the right 'combo' for a complete CDC positive. I had an amazing positive response to abx, after being ill for almost two years & going downhill fast. So, I'm satisfied I do have LD. So, I'd say IGenex was better testing than Stonybrook in my case, anyway.
I do know a lot of the Columbia neurology & ID people, etc think Stonybrook is best, and when I went to the MS Institute in Manhattan, that's also where they sent my bloodwork (but Lyme results again negative!). So I think it does have a good rep among docs - probably mostly because it was one of the first places/areas to specialize in Lyme. What that's actually worth, I don't know.
Best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
There are NO tests, I repeat, NO tests for this that are 100% reliable. DO NOT put your life in the hands of a few tests! If you read and understand the science behind why, you will know there are no good reliable tests. get to a good LLMD.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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quote:Originally posted by richedie: There are NO tests, I repeat, NO tests for this that are 100% reliable. DO NOT put your life in the hands of a few tests! If you read and understand the science behind why, you will know there are no good reliable tests. get to a good LLMD.
right on, my last tests were at Stonybrook.....positive for Babs, negative for Bart, negative for Lyme...test results are always variable....my doc is president of ILADS.....
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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adamm
Unregistered
posted
NO WAY JOSE! The folks at Stonybrook are some of the prime movers in the Lyme coverup. Please educate yourself--a forum search will turn up quite a few horror stories about that place.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
When you say LLMD, think ILADS.
Lyme Literate medical doctor can mean many things. IDSA Infectious diseae MD's can call themselves "lyme literate."
ILADS doctor means they follow the ILADS protocol, to date the only pharmaceutically based program that works.
If it's not ILADS, then it's IDSA, short term single antibiotic, and a cover up of the larger issue.
I don't know how accurate the Stony Brook lab is, but it doesn't sound to me like the doctors follow an ILADS protocol. Does it to you?
For Labs IGenX has a good record of sensitivity and accuracy.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
What a joke!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I should clarify that my LLMD uses them (and Igenex, and many other labs) for testing. He didn't send me there to get treatment....he just sent my blood there.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I was asked why I said not to go to Stoney Babbling Brook.
You will see some of the reasons above from those with experience. All negative.
Hoosier said.. "I should clarify that my LLMD uses them (and Igenex, and many other labs) for testing. He didn't send me there to get treatment....he just sent my blood there."
Yes, Hoosiers is right. Some LLMD's still use their labs... and reports years ago said they had decent tests... so I don't have a problem with blood going there if it has to.
But I've never heard a good report from a patient who went there for Lyme.. only horror reports. Many many.
In my opinion, they are in the same barrel as...
Hold the Mayo...
Robert Wood you can call me Johnson but don't call it Lyme School in NJ...
Univ of it must be a spider bite Pennsylvania,
The Worm's hide out in NY,
Mass we know nothin' but we'' kick you just the same General....
And my least favorite... Ho Ho anything but Lyme Hopkins.
(I'm sure I am missing a few but it's early and my brain hasn't fully made it to HORROR mode yet.)
Sometimes, well-meaning doctors advise patients to go somewhere due to the "name" in general and actually don't know of their Lyme, well, shall we say, "flaws".
Example- You don't know how many patients there are locally for example who are told to go to Ho Ho Hopkins for Lyme (BIG mistake). If the docs here knew what they were doing.. they would know Ho Ho Hopkins doesn't even see Lyme patients in their ID clinic anymore. Something about a lawsuit if I recall?
Anyhow... Run, don't walk to the nearest exit if you find yourself in Stoney Babbling Brook for Lyme.
The above is only MY opinion. I am not a doctor and this is NOT medical advise.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
A nutter important point...
Once some place BIG (for their britches) .. like the ones on the list above... say you don't have Lyme...
No one (regular doctor) in their right mind will say differently... even if they know you really do.
They can't afford to go up against the BIG bad boys.. so they just follow the so-called leader (the safe route).
This is a BIG problem too because what insurance company then will volunteer to pay for your treatment when the BIG bad boys say it ain't Lyme. 100 more docs can say it is... tests can be positive, etc.. and they still won't pay. They have their ace in the hole and they use that to justify NOT treating you.
This makes it hard on even LLMD's to treat you... and is one of the reasons many LLMD's can't take insurance.
So getting a No-Lyme diagnosis from there is bad in many ways. Getting a Lyme diagnosis there is also bad.. as they won't treat till you get better.. only by the "arbitrary" cut-off point Dattwyler made up over coffee and doughnuts one day while watching a slide slow.
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