I had been seeing Dr. S in Pennsylvannia because different support groups had told me he was an LLMD. He does know how to diagnose lyme very well, but he does not treat it according to ILADS protocols and nearly all of his patients relapse, even his nurses that work for him. He just had me on one oral antibiotic for an extended period of time and now it seems like the strain I've got has built up resistance to it.
Posted by Lymetoo (Member # 743) on :
Is this Dr Sc or Dr Sw??
I'm very sorry to hear this, but I will make a note of it as soon as I found out which one you're referring to.
Do you need more names?
Posted by pryorka (Member # 13649) on :
This is Dr. Sw I found a doctor in Michigan I'm trying out. I'm in southern Indiana so he's just as far as Dr. Sw was.
Posted by Lymetoo (Member # 743) on :
Be sure to get plenty of feedback on the new dr.
Posted by TS96 (Member # 14048) on :
pryorka, I hope everything goes well for you in Michigan and you continue to heal.
I am so confused now.... Dr. Sw was recommended as a very good llmd. Now we've got at least three people saying he is not following Ilads protocols and doing his own thing... that's fine if it works but I'm hearing people not getting better and many relapsing.
I've cancelled one apt. with one Dr. P last month now I may cancel my apt with Dr. Sw??????
This is not fun Posted by daisylynn (Member # 4895) on :
Could someone please email me and tell me the Dr.'s full name because I've been seeing a doctor (dr.Sw) in PA for 7 years and I'm not any worse but not any better. Thanks!!
Posted by bettyg (Member # 6147) on :
is dr. s in hermitage, pa??
i've been told what an excellent llmd they are! Posted by TS96 (Member # 14048) on :
Daisy, I sent you a pm.
Posted by lymegirl (Member # 14460) on :
I've been working with Dr. Sw since 2005. He is an awesome doctor. He is the only doctor I've worked with that develops a customized plan for his patients. I consider myself 99% recovered from Lyme . I no longer live in Pa but I still fly to see Dr. Sw. His staff is wonderful. Can't say enough good things about Dr. Sw. Please feel free to visit my website to learn more about my story.
Posted by pryorka (Member # 13649) on :
I read your story lymegirl. I'm confused.. it sounds like you're still taking antibiotics? And you still have lyme. So many of us that have been seeing him end up in your position because he won't treat it according to what doctors have shown works. ILADS has specific treatment guidelines that he won't follow and I know when I asked him why he's treating the way he does, he can't explain it, and gets angry.
Posted by lymegirl (Member # 14460) on :
I'm not sure one ever gets rid of Lyme 100%. I have my life back and I feel great. What Dr. Sw is doing for me is working. Taking low doses of antibiotics for maintenance doesn't bother me.
Posted by mbroderick (Member # 5220) on :
I also had an issue. He treated me for almost a year with no results whatsoever. As soon as I saw a different LLMD and was treated aggressively for Bartonella, I started responding right away!
I'm now symptom-free...
Posted by katia (Member # 11269) on :
My husband and I both saw him for one year. All I can say is unfortunately it was a complete waste of time. If I can prevent anyone from suffering through what we've gone through, it's worth me telling you not to bother to see this particular ""llmd". Posted by hshbmom (Member # 9478) on :
How bad off were you guys when you first went to him?
Did he test you for coinfections or treat you for coinfections based on symptoms or test results?
Did he use a cyst buster?
What laboratories did he use?
I take 2 children to him.
Posted by mbroderick (Member # 5220) on :
We were all pretty sick but still functioning (and think we've had Lyme etc. etc. for at least 10 years). No co-infection tests were done initially and we were never treated. Later a Bartonella test was done that came back negative. Again, no treatment. It was the Bart treatment (from a different LLMD) that eventually got us well again!
Everything went through Bowen Labs.
[ 12. February 2008, 08:10 PM: Message edited by: mbroderick ]
Posted by katia (Member # 11269) on :
I was in bad shape when I first saw Dr. S, my husband was about the same. I always have tested positive, my husband tests neg. We were functioning, with an enormous amount of fatigue and pain. I've been ill with lyme for at least 16 yrs., as for my husband, we think he hasn't been actively ill for as long. No "cyst buster", I'm not familiar with that, although, he did test us for bart. and babs., (I requested that we be tested) no tx was given. It is important to treat the co-infections, just like mbroderick said, only then can you get well. I wish you the best, if you need more info., many lymies here can help guide you to the right llmd, especially because you are looking for someone to treat your children. If you like, you can PM me, there are excellent resources available.
Posted by Stacyb (Member # 13084) on :
Hi
I too saw Dr Sw. in Pa and he is not up on his game. I know a few folks I have taked with personally who say the same. I think he is so popular b/c he has been doing this for so long as is one of the few LLMD's that takes insurance. And he is one of the few near the Ohio border. I feel the same as all the posters that this LLMD is not following guidelines and treating properly.
Posted by MADDOG (Member # 18) on :
Hi,any doc. who will TRY!!! Is so much better than a doc. who blows you off and wont TRY!!
A doc. who is willing to treat lyme is rare indeed.
Some doc may be better somewere but no doc is no doc.at all.
And this is a Doc. indeed.
MADDOG
Posted by motownlyme (Member # 11485) on :
I too see Dr. Sw and am having serious doubts about his treatment. At my last appointment I flat out asked if he was treating using Dr. B's guidelines.
He said no. He disagrees with some of what he recommends. It's been over a year for me and I'm not any better.
I had bartonella come up on a blood smear and I asked what was the best thing to treat it and he said there isn't any one thing to treat it. He said we'll do 200 mg of doxy and see if that does it.
That doesn't jive with what I see others getting for bartonella.
Posted by katia (Member # 11269) on :
Yes, motown, that's sounds right, best thing to do is find a LLMD that treats you according to your individual needs. (co-infections included) Of course, easier said than done Posted by mbroderick (Member # 5220) on :
I don't know anyone who got rid of Bartonella with just Doxycycline... I agree with AliG - that amount of Doxy isn't enough to treat Lyme. Bartonella requires very specific drugs (and there are several). Remember, there are many, many strains of Bartonella and all don't respond the same way.
Re: treating aggressively. My doctor in York treated my whole family aggressively with abx and participates with insurance. Dr. S. was aggressive with Lyme but didn't address co-infections.
[ 01. May 2008, 06:44 PM: Message edited by: mbroderick ]
Posted by AliG (Member # 9734) on :
quote:Originally posted by Stacyb:
one of the few LLMD's that takes insurance.
Could that explain the problem? Insurance will tie him up in red tape if he treats anything aggressively.
200mg Doxy didn't even have an effect on my Lyme, much less anything else. It took 300mg to produce a Herx reaction and I'm fairly petite. Posted by ritarhoads (Member # 14923) on :
I have seen that with a patient who consulted with me. AFter the same abx for one year, Dr S pronounced the man cured even though his symptoms were still active.
Posted by ritarhoads (Member # 14923) on :
In lyme, initial treatment for lyme is great. It the person get well, great. If not getting better or plateau-ing, really need to look for and treat the co-infections. There are several and I keep finding more in my practice.
For those who dont know me, I have 2 adult kids with chronic lyme. I became so frustrated at the distance I had to travel for good care, that I became educated on lyme and now treat it in my practice, with the great doc from far away as my consultant. He got a PA license so he can legally consult with me. What a gem he is!! By the way, the doc is Dr M from Maryland. I am in PA. And no... I am not desperate for more to do.. not why I posted this.
Posted by bettyg (Member # 6147) on :
rita, thank you for the wonderful intro and comments in general!
WELCOME to the board; glad you found us. WAY TO GO MOM TO BECOME LYME LITERATE FOR YOUR 2 KIDS!!! Posted by motownlyme (Member # 11485) on :
I was told by another llmd that Dr. Sw does not have hospital priv at any hospital. I did not confirm this, but I don't know why he would lie about something that can be checked on.
Posted by Lymetoo (Member # 743) on :
Motown....Maybe you need to go for Dr #3.
Posted by lou (Member # 81) on :
No one doctor has all the answers, and insurance does tie the hands of a doctor, and make them more likely to have state medical board breathing down their necks.
Some people need to start off with less than aggressive treatment because their germ loads are too high to hit it hard at the beginning.
The outcome of treatment by any doctor is uncertain, because the tickborne diseases are not easy to treat, the tests are lousy for the most part, and the most effective treatment varies in patients, even for the same apparent disease. I say apparent because what we may have is not really entirely figured out. This is work in progress.
Yes, people may relapse. In chronic lyme, it may be that remission, not cure, is the most realistic goal.
However, if you get to the point that a treatment by a particular doctor is no longer what you feel you need, and you have good reasons, then consider going elsewhere, if you can find someone.
Posted by nenets_hubby (Member # 14415) on :
We went to Dr S in PA a few months back for my wife, and had a relatively positive initial reaction (first LLMD), but as time progressed we became a bit more circumspect.
He did do a ton of coinfection tests, a very thorough exam, and had a distinct plan for treatment.
I am starting to believe that the number one factor in treatment of lyme is the body chemistry of the patient.
I am now also starting to think that the second largest factor may simply be the willingness of the doctor to adapt the treatment based on the changing conditions of the disease and/or patient.
My impression of Dr S and his staff were that they were sincere, dedicated, and compassionate, but also fairly fixed in their attack trajectory. It might be insurance issues, just a comfort zone, or something else entirely - no idea. I am not going to dig for rationale.
They were willing to bend a little when the first path did not work (strong herx, actually worked too well - and at a lower dosage than others have listed here), but not a lot. Not enough to make it work for my wife.
Also, they prescribed several drugs/supplements that were contraindicated in medical literature, and were - in my opinion - overly cavalier about the risks of the severe herx, such as loss of the gall bladder (their explanantion: that could happen anyway! ...as if this would be a minor inconvenience).
So, my impression is that if your body chemistry lines up with the protocol they use, and you are lucky enough not to have the cross-medication issues or side effects manifest, you should do fine - there is probably a fairly decent chance this is the case.
If not, you may have to go elsewhere.
So, we changed to a Dr in MO, and saw him today for the first time. His was a very different approach, and it seems to jive with our thoughts on how this is supposed to work. We're cautiously optimistic.
A potentially ideal scenario, except for the 650 miles of road my wife has to deal with in a less than cozy passenger seat
So, my deepest respect goes out to all LLMDs of any capacity, but I can't let that respect cloud my judgment in making sure my wife gets to the goal of being symptom free.
[ 01. May 2008, 10:24 AM: Message edited by: nenets_hubby ]
Posted by truckboss (Member # 15457) on :
hello, i havent been diagnosed yet, still trying to figure out whats going on. are there any other doctors in pennsylvania?i live near pittsburgh, where is this dr. located?
if my insurance covers this can i go right o this dr. or do i have to get referals?
so many questions and too sick to try to figure this all out. i did take a questionare of like 60 symptoms for lyme disease and scored a 49, great,1 test i didnt want to pass.
any help i can get would be greatly appreciated, i've been fighting this this for like 4 yrs and have sleep apnea and it seems alot of symptoms are the same for lyme.
[ 12. May 2008, 08:05 PM: Message edited by: truckboss ]
Posted by bettyg (Member # 6147) on :
fyi,
i sent truckboss a list of PENN. LLMDS!
Posted by Gert (Member # 13584) on :
Hi Truckboss, I see Dr J in Hermitage. I got the referral from here and at Lyme Disease Association.
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It took 300mg to produce a Herx reaction and I'm fairly petite. ![[group hug]](graemlins/grouphug.gif)
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