posted
I have an appt with Dr S (near Philly, not near Pittsburg) tomorrow. They had a cancellation and managed to squeeze me in.
I've read some not-so-great things about him on other message boards. Does anyone have anything positive to say about this doc?
I don't have a dx at this point (because my docs won't test me for Lyme) and am looking for someone... anyone... who can figure out what's going on.
Feel free to PM me. Thanks!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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I don't have personal expierience, but I have a Lyme friend who went to him for 2+ years while treating Lyme and HME---she didn't have a very severe case, but she is doing much better and is back at work and school
I don't know the extent of your case, symptoms, how long you've been infected...etc...so it's so hard to say, I think finding an LLMD that is a good "fit" for your is very important, so are first impressions---so you'll definitely be able to tell if he's right or not after an appt. or two.
I believe he takes insurance, which is another GREAT thing, most don't. And I know for a fact that he knows all of the correct bloodwork to run, and how to make a correct diagnosis, what to look for..etc.
Best of Luck!
-------------------- "The greatest revenge is to accomplish what others say you cannot" Posts: 3 | From New York | Registered: Dec 2007
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Jessica, Thank you! I'm trying to go in with no expectations. That way, I'll either be pleasantly surprised or at least won't be disappointed.
Honestly, I'm looking forward to getting a differential dx done. "Something's" been going on for quite some time now and my drs haven't been able to nail it down.
Not going start ranting here. Nope. Not gonna do it. *suppressing urge*
Anyway, thanks again!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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If you are talking about Dr. S in C.F....he's been very helpful for me. It's a long drive down there for me (from Lancaster), but so far I'm pleased with his attention to me. On the initial visit he spent upwards of 15 minutes talking with me (which is about 13 minutes more than I normally get from a dr. visit) and he drew blood to run a variety of tests including Western Blot and PRC. All my serology came back negative, but he was willing to start me on doxycycline given my numerous symptoms and the inability to get a diagnosis from my other doctor visits (several months of testing for everything under the sun). Lyme seems to be the remaining dx given my numerous, profound neurological problems. I'm an outdoor athlete...frequent tent climbing and camping trips...so I have massive exposure.
Bottomline: my experience with Dr. S. has been good so far. He does take blue cross insurance, so I need only pay a $15 co-pay so far. We'll see where this ends up in a few months--I'm seeing some improvement, but I think I'll need several months of doxy to beat lyme (I suspect I've had it for a year or two).
[ 28. December 2007, 07:29 PM: Message edited by: wxrock ]
Posts: 40 | From Lancaster PA | Registered: Aug 2007
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wxrock, Yup, that's the guy. Not exactly huge on bedside manner, is he?
Wasn't thrilled about his "you're getting older, this stuff happens" comment or attitude.
Then again, I don't care if he's an ax murderer as long as he can find out what's going on.
It does worry me that he treats within the parameters of what insurance companies will pay for.
Half of what he said today (my first appt with him) revolved around insurance this and insurance that.
Have you found this affecting your treatment at all?
He didn't mention anything about doing a western blot.
All he said was that they'd be doing DNA testing for lyme and co-infections.
Did he talk to you about WB or did you ask for it? Do you think its standard, along with PCR?
My problem with congnative function doesn't help with understanding things either.
Honestly, I think I was so overwhelmed, I wasn't absorbing a whole lot.
Would have been nice if he'd run the cognative testing first and then tailored the conversation to my level of understanding.
"Dumb it down, doc!"
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Meg, Its completely the opposite problem. He's only doing what insurance will pay for.
And he didn't discuss treatment at all. He said to wait for the results and we'd talk then.
I have an appt on Jan 18th to get my results. Maybe things will appear different during the 2nd appt?
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Yes, he did the same with me--test before doing anything. That said, all my serology came back negative and he was willing to start me on antibiotics. This is something my GP would not do! Yes, he did mention about treating first within the parameters of what insurance would pay for--give that a chance before expanding to action outside of what insurance will cover. We have talked about the possible need for IV treatment (which my insurance will not pay for without positive serology), but I've agreed that we should give the doxy a try first...before we escalate things.
Posts: 40 | From Lancaster PA | Registered: Aug 2007
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Same story here. I have a 2 hour drive there and by the time I got there I was so tired and irritated that my response to his appt. was despair.
I don't know how much was the appt. or my perception of it cause of my mood. I didn't test cdc positive but enough indications to
get doxy for a month and maybe retest. I'm in doxy limbo. Every limbo boy and girl all around the limbo world... c'mon sing with me!!
How low can you go??? Posts: 111 | From Pa | Registered: Oct 2007
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tailz
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posted
I saw Dr. S. in CF. He says he'll do what your insurance company will allow, but how do you define that when he won't call them?
And how will things ever change if doctors won't call insurances for each and every Lyme patient, regardless of the likelihood of a denial???
I was emaciated and a cool shade of green when I walked through his door (per other patients). I was having severe GI symptoms and my brain was bursting through my skull - and though I'm not a doctor, this was pretty evident by the HELL I'd raise with him, his nurses, and anybody else who strummed any of my neurons the wrong way while I was there.
He was willing to start me on IV Rocephin, but he had me driving 2.5 hours there and 4 hours home, nearly crashing my car multiple times daily - running red lights when the opposing traffic got a green left turn signal - making left turns right under NO LEFT TURN signs - diarrhea at McD's - diarrhea at Wendy's - diarrhea everywhere.
He refused to call my insurance and try to get me home infusions (no money in it for him), and I'm sorry, but I called my insurance, and their response was to get my doctor to contact them.
Without hearing them deny it, my anger remains with this doctor until he proves otherwise.
My impression of him though is that he likes to keep the CDC and IDSA happy and won't risk his livelihood for yours. I could say more, but I won't.
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I can honestly say I'm not gushing over with praise for Dr S.
If today's appt was any kind of example, I'm not gonna be happy with him, based on his personality and attitude alone, let alone treatment.
I broke down in tears in his office and he just sat there. No offer of a tissue, nor nuthin.
He also said I couldn't possibly be iron, B12 and/or folate deficient as it would show me as being anemic on my CBC.
I've never shown as anemic, even when my ferritin was at 7!
I smoke and smoking raises the RBC, hemoglobin and hematocrit levels. That's why I don't show as anemic. I know this. Why doesn't he?
He took blood to retest those levels, I suspect largely to rub it in my nose during the next appt.
Part of me is looking forward to that meeting. *evil grin*
I've decided to go to the appt on Jan 18th, largely to see what the Lyme&co test results are. After that, who knows?
Maybe by then, I'll have a better idea of what's going on and will be having a "good" mental day.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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tailz
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posted
I had to ask for a tissue after I was done crying, too.
The only time I got him to show any emotion was when I told him that I wished he gets Lyme.
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