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Old 06-12-2005, 11:13 AM   #1
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bbird HB User
Best Hospitals for Lyme Treatment

Does anyone know of any particular Hospitals that are active in Lyme research and treatment? I've been undergoing treatment for the past 8 months and i am absolutely no better. I also seem to have some other things going on according to my dr., Dr. Steven Phillips in CT. He is very well thought of. But he did say i was a very difficult case with a lot going on. I am sick of wasting my life waiting to get better. I am barely functioning. I've had it. I think I am going to go to a hospital that is known for Lyme treatment.
My first instinct was Mayo clinic as they have such an integral approach (they look at every aspect of you) - which sounds good as it seems that more is happening that just Lyme.

Any one know of any good hospitals or hear of any good results from an approach like this?????
sTb

 
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Old 06-12-2005, 11:30 AM   #2
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Re: Best Hospitals for Lyme Treatment

I don't know of any. The only one is Dr. Fallon at Columbia but I believe he is basically researching the neuropsychological and neurophysiological impacts of lyme.

I would not recommend the Mayo clinic or John's Hopkins for that matter. I have heard numerous reports that the Mayo clinic is misdiagnosing Lyme as MS, ALS or Parkinsons...

Wish it wasn't so...

 
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Old 06-12-2005, 04:05 PM   #3
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Re: Best Hospitals for Lyme Treatment

BBird: I also go to dr. Phillips and it has taken about 4 years (with some good times in between of a few months) to really get what I consider a promising handle on this disease.

He referred me to Dr. Gerald Weiss in Norwalk, CT where you have to pay about $600 in cash unless your insurance covers for the first 3-4 hour exam....bring along good records....He put me on cholestyrine to clear the dead bug accumulation out of my body and I have to say that so far, I'm encouraged because the terrible years-long ringing in my ears has calmed down (though not completely gone) and my pain is reduced (tho I haven't had lot this past year) and I can almost feel those nasty buggers still living moving from one place to another, especially in my hands...

I would just suggest staying with Dr. Phillips and perhaps picking apart each of your diseases or symptoms and which you're having the most problems with and what's specifically "interfering" with your rehab. It's a long hard road and there's just no easy one-stop shop to diagnose and cure...I'm on my 15th year (to my knowledge) of this disease, but I'm spectacularly better compared to pre-Phillips treatment of the past 4 or so years.
Stick with it, as hard as it is, you will make progress. My brain is not what it used to be (neuron involvement has attacked my whole brain b/o Lyme) but it's getting better in bits and pieces. I have to pick and choose what my limits are everyday and listen to my body....GOOD LUCK~!

Last edited by outinthe_woods; 06-12-2005 at 04:09 PM.

 
Old 06-12-2005, 04:19 PM   #4
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Re: Best Hospitals for Lyme Treatment

Forgot to add that Dr. Weiss trained with Dr. Burrascano....

 
Old 06-12-2005, 04:43 PM   #5
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Re: Best Hospitals for Lyme Treatment

Hi bbird. I do not know of any hospitals that are Lyme knowledgeable, I think it is quite the opposite. I have heard that the Mayo Clinic may be good for other things, but not for tickborne illnesses. Unfortunately, there is a lot of ignorance about these diseases.


We can all understand your frustrations from being so sick. You were sick for quite a while before getting diagnosed right? It can take time to recover and it is normal to feel worse before feeling better. It can also take time to find the best meds for your particular case. Do you have any co-infections?

It is good that are you are seeing a knowledgeable doctor. Hang in there okay?

 
Old 06-12-2005, 05:21 PM   #6
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deejavu HB User
Re: Best Hospitals for Lyme Treatment

Hi bbird,

After suffering from chronic lyme for about 9 years now, I can certainly undertand your frustrations too.

I also wanted to go into a Hospital and even called the Mayo Clinic but I found out they are not lyme-literate which surprised me to no end!! Shame on them!

Many members have posted about Dr. Phillips and from what I have read on this site, he does have a fantastic reputation.

Please hang in there as I know how depressing this disease can be, I have my days when I feel I can't take it anymore but thanks to the support from everyone on this site, I have so much hope that I am going to win this battle!!

Hope you feel better,
Denise

 
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