Does anyone know Dr Steven Phillips in CT? - Lyme Disease Message Board

lymegirl · 01-01-2006, 07:50 AM

Hi All

I mentioned in an earlier post that this week when I saw my LLMD she said I was a difficult case as I have not had any significant improvement on the different combos of abx we've tried in the past 7 months. I've actually gotten worse. I think there are things that have happened in the last several months that have contributed to weakening my body and letting this bug run rampant. When starting new drugs afew times I saw significant improvement for about a week and then reverted back. This has happened afew times.

Anyway I don't take offense at what my LLMD said, as it is something I already knew (difficult case not responding) and I really like her and appreciate her honesty. She is a highly recommended LLMD. She didn't indicate she was giving up or anything but I suggested maybe I should talk to Dr Phillips as I have seen his name associated with research on MS and Lyme. She was open to that.

I made an appointment with him for first avail in Feb. I know he is well known in the lyme community, but was wondering if anyone has personal experience with him. It is expensive to see him and he is a distance from me.

Any feedback would be appreciated.
Kim

ncgirl88 · 01-01-2006, 08:21 AM

I saw him speak at a conference - He is a smart man and is doing a lot of research. I think you would be in great hands from my first impression.

He looks to be 40ish, and has a kind way about him with a little bit of dry wit added in.

I would see him.

Good luck with your continued treatment. Have you been tested or treated for coinfections? It is really important and could be the key to your getting well. Babesia is really hard to test for even through tick borne testing labs because there are still so many unidentified strains they suspect.

Happy New Year! You will get well - don't give up...

ticker · 01-01-2006, 08:29 AM

Hi lymegirl. Dr. Phillips is an excellent Lyme doctor. You may want to ask his office to notify you of any cancellations so you may get an earlier appointment.

Just curious, have you been tested for the co-infections recently?

lymegirl · 01-01-2006, 09:26 AM

Thanks Ticker & ncgirl

Ticker I was tested for mycoplasma in may 05 - negative with MDL labs
and last month tested for Bartonella with MDL which was also negative.
In Feb 05 I was tested for erhlicosis(spelling?) with LabCorp which was negative. This was before I saw my LLMD and I know LabCorp is not as accurate as other labs. My LLMD says I don't have symptoms of that to warrant retesting or testing for the other coinfections.

I am now trying the diflucan protocol 50 days diflucan then 20 abx and repeat. After 2 days of diflucan I saw significant improvement which lasted for a week then reverted back. Started this 12/2 so will see how it goes.

ncgirl88 · 01-01-2006, 11:48 AM

Hi Lymegirl -

I would definitely get tested for Babesia...this coinfection seems to be one of the worst which gets in the way of lyme treatment if not treated first. It is just a hypothesis of mine from talking to other lyme patients.

I was tested for Bartonella, Ehrlichia (hme and hge), and Babesia - also lyme through Quest - lyme twice through Labcorp - all negative...

through IgeneX positive for lyme, babesia, and ehrlichia (hme & hge were positive) - wasn't tested for bartonella through IgeneX. So don't trust Labcorp and Quest.

My treatment I believe substantiates that IgeneX was right....I herxed hard on all my treatments and have gotten so much better then I was.

Keep on keeping on...

NCgirl88