posted
I just called two different LLMD's in the PA area. One of them (Dr. C) put me on a waiting list. The other one (DR. B in West Chester PA) can take me next week. Was it a blessing that I got an early appointment or is he not the best LLMD in this area? Please let me know.
Posts: 13 | From Pennsylvania | Registered: Aug 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Unfortunately these are the only patient reports I have. Two different people.
[05-23-08] "Dr. B is a true believer in lyme and co-infections and that it takes more than 2 weeks of abx to kill most cases. He did take insurance when I saw him (2004-2006) but I believe he was forced to stop taking it. He seemed knowledgeable, smart and compassionate but at the time appeared to be going through his own personal problems. He also has lyme and co-infections and they appeared to be flaring while I saw him. During one visit he was dozing off during my consultation! He had treated me for several years with oral abx and when we both concluded it was time to try IV abx he inserted the PICC line right then and there in his office. Unfortunately his personal issues came to a head (prescription anti-anxiety narcotics that came out in a toxicology report after a car accident) and he was forced to close his office temporarily during my IV therapy. He meant to rotate several IV medicines for my treatment but because of his own issues he was unable to prescribe. I was forced to deal with his nursing staff. He was(is) super aggressive with abx ala Dr. J (who's protocols he was following). He was "ok" about returning phone calls. He rarely responded to my e-mail. Average He did not believe in supplements and herbs when I last saw him. The office staff was respectful. The waiting time was the worst. Waited for 4 plus hours on one visit. There was one instance I wasn't told that my appt. was canceled until I had already made my 45 minute commute. Office management was a joke. Nurses and staff constantly changing. Apparently he was very hard on the nursing staff. In Summary. Dr. B is a conundrum. I think he is super knowledgeable about lyme and co-infections and seems to be one of the few that will treat it super aggressively with abx. The personal issues that he suffered during my course of treatment with him clearly impacted my outcome. Plus his poorly run office led to a horrible customer experience. In the end if you can get his attention and focus he would not be a bad option for someone to see.
[08-07-08]Patient Report: "I drove 2 hours yesterday to see Dr. B. in West Chester - I had a 9am appointment. When I showed up, he was actually there (wow! amazing!), only his office staff seemed to not be able to locate me in their books. They spent a good 10 minutes asking me if I was sure I had an appointment, and eventually they did find me in their computer - someone had neglected to transfer me to their appointment book. Anyway, they told me I would be his second patient, due to the fact that their 8am was a 'no show'. I found this odd because I was told that I would be his second patient when I had scheduled, which would mean since their 8am did not show, I should have been their first patient and been seen right away. They explained that they had consequently booked two 9am's, and lucky me, their other 9am showed up a few minutes earlier than me. They did happen to call me back first anyway, however, but as his secretary was situating me in his office, she explained that he was no longer taking Medicare and that I would have to pay cash up front - $600 for the first visit and $250 for subsequent visits. Talk about a herxheimer reaction.
Obviously I don't have this kind of money, and it is even more far fetched to think I'd be carrying this kind of money around with me with no notice whatsoever. I asked why I was not notified of this before my appointment, before having driven 2 hours and wasting over a half a tank of gas. "Oh, we did try to notify you," lifting up my chart, "We have a letter right here that we were going to send out to you. Do you want to see it?" Needless to say, somehow I did not see the logic in telepathically being able to view a letter that had never been sent to my home, and I left, did not see Dr. B., and I no longer have an LLMD - again. For all I know, maybe he even just decided to not take Medicare that morning, because he was tired of hearing me moan for some degree of respect from him and his office staff. This doctor has dickered with me since the first day I had seen him though. He shows up 'whenever', never sees any of his patients on time (4 or even 12 hours later is not unusual at all, a noon appointment being seen at midnight is not out of the question either), falls asleep during his appointments with me, dropping my chart, fails to answer emails when he even instructs a patient to email him his/her progress so he can increase a medication, and I find it odd that the very first time I see him that he is only taking cash-up-front patients he actually shows up on time. This would indicate to me that, because he was not making enough when he was only seeing his insurance patients, he did not bother to show up on time - he did not care. Sorry, but I really need to hear that this doctor has been removed from the "LLMD" list. I don't really care if there are so few of them already - this doctor has left me out in the rain with nowhere to go too many times, and I truly think he, too, needs to be left out in the rain for once and learn what it is like to have nowhere to go with Lyme. I actually had stopped seeing him 2 years ago (when I was first diagnosed) after hearing that he had left people stranded with picc lines in their arms, and no saline to flush them out, let alone antibiotics. The only reason I went back to him was because of the situation with Dr. F."
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I have an opinion. I've found, after taking patient reports for a long time, that it's not wise to simply accept the patient reports as the final word when only one, two, three or even 5 are present. Anything above 5, I've noticed starts to indicate a statistical trend. I have received glaringly negative reports for one particular doctor -- 4 in a row, and then suddenly the next 14 were exceedingly positive.
So, always research the physician carefully yourself, reading up on things he or she has written, newspapers they've been in, conferences, as well as -- of course....gathering more patient reports.
Anyone was experiences on Dr. B can send me reports. I encourage all types, whether negative, positive or anything in between. Your honest subjective experience is what I find helps patients most.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Wow! I am glad I asked. What about Dr. C in Cochranville? However, she has not appointments at all. I was put on a waiting list. I have an appointment with my GP today at 2:00p.m. If he puts me in antibiotics and after the course of the antibiotics I feel better, should I not see an LLMD? Or should I see them anyway just in case?
Posts: 13 | From Pennsylvania | Registered: Aug 2008
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posted
I love Dr C and think she is just as good as any of the NY LLMDs.
She has trained directly under Dr B and Dr J and my treatment plan parallels if not exceeds anything any of the other "big" LLMDs are doing based on what I can tell from this forum
She is a speaker at the ILADs conference this fall in SF
Yes, she is expensive
She is available by cell 24/7 and always gets back to you immediately
I'm actually offended you have referred to her as "nuts" on this forum, esp in the context of her having Lyme as well
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm looking for reports on Dr. C. I've heard nothing but positive things up until today. I have no patient reports directly recorded however, and I'm looking for some. PM me if you feel like telling me your experiences with Dr. C.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
There isnt one LLMD that dosent have someone dislike them. Or there isnt one LLMD that people love.
Everybody is different as long as he/she will treat you continuly and treat you as if you have coinfections then thats a good llmd.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
sorry you were offended by implying she is "nuts".
i know more than a few people who see her and she actually gets mad and literally yells at them when they are not getting well. does that sound like a level headed compassionate dr to you?
she might have trained under dr b, c, a , j , q , & e but IMO i would not want to see a dr like that.
i am glad she saved your life, my first llmd saved mine also, but unfortunately is not the most well suited to treat me now.
nonetheless, as tree said and i agree, all llmds have positive AND negative feedback on them and no two people are treated alike.
cheers
derek
ps- isnt this thread about dr B anyway?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
wow. i typed a response and then LN gave out. sweet.
well ill try to reply albeit it short.
we are all entitled to our own opinions. yes, you are right.
if you are getting well w dr C, stick w it. you should be elated. enough said on that note.
on another, i have been thru the PA llmd gambit (dr f, dr s, dr b, and then to ny (dr c) and now dr H) so ive kinda become well versed at llmds, how they treat, and what the typical patient response it.
i did not imply she was nuts, i said she was. you said i implied it in your previous post. i guess i use the term nuts a little too loosely, but what do you call a dr who yells at her patients when they are not getting well. level headed and of sound mind? come on.
im not posting here to get into pi$$ing matches with anyone, just trying to help.
if i offended you by my statements of this dr, i apologize. again, if youre getting well, then thats great and stay the course.
my point is that if someone is going to spend the time and money on a dr like dr c, why not see a dr in NY, Ct, NJ, etc etc that has a good success rate and skip the ones who do not?
hope this helps to clear up our little misunderstanding.
wishing you continues success w your treatment as well as everyone else.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I'm just confused why you would write something like that without ever actually having seen her
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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i know more than a few people who see her and she actually gets mad and literally yells at them when they are not getting well. does that sound like a level headed compassionate dr to you?
quote:
Wow!!! ALL these people got yelled at for NOT getting better?? Could it be because they were NON-COMPLIANT(??) and THAT was the reason they got "yelled at" ??????????? It's hard to say if you've not been the one there.
My whole family of 4 has seen her for FOUR LONG YEARS and none of us EVER, EVER got yelled at.
She WINS hands down in my opinion. Like Larkspur said...."calls to her cell are returned promptly". I remember not wanting to call her while she was in CT w/ Dr. J mentoring, and when I finally mustered up the courage to call, she was very very concerned and told me what I needed to do with my g.p. until she got back and I could see her again. From then on, I never worried about calling her with any of our bizarre problems!!!
She is one of THE MOST compassionate people, who happens to be a doctor, that I have ever met in my 48 years on this orb. She NEVER gives up on her patients....and gosh she should have given up on us, we are complex cases.....3 out of 4 of us seem to be anyway.
I am so sorry you had to go through all of those LLMD's in PA. Guess I got lucky when someone here recommended her. I've never experienced the negatives that others report. There are 2 Dr. B's and 2 Dr. S's ....so I am wondering which of those you saw.
What I like about her is that she is always, always studying about various aspects or the complications of coinfections, viruses, and accompanying conditions that make treatment a challenge. She is in touch with doctors every where, and is open to many, many different types of treatment. Plus her staff is AWESOME!!! They should all run offices like hers.
O.K. off my soapbox......i just wanted to lend my 2 cents to what Larkspur said. MetallicBlue if you need more info. you can PM me !!!!
G'night,
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I have no real info on Dr.B. Have heard much good and bad but know he wants to help everyone and has volunteered at a local lyme summit and was wonderful. I think he has been very helpful to some very complicated cases.
As for Dr C. First I must try to remember to stay calm. This is very disturbing to me. She is our Angel, and has saved my daughter's life. Other Drs could either not get thru to her or gave up on her because it was such a complicated case with all of the psych issues along with uncontrolled diabetes.
When you look for a Dr and go to one do you pick one that is always on time and always agrees with you and can give you 2 weeks of pills and pats you on the head and tells you that you will be fine?
In a perfect world, without tick borne diseases and psych issues and other life threatening diseases, perhaps this would be what one would want. But we are at WAR. We need a General that can get into the trenches and search everywhere for new strategies and new weapons.
Dr C has been forced to step out of the box, both she and a family member are victims. She researches everything out there and has either trained under the early experts or is in contact with other emerging great Lyme, and neuro toxin minds. She leaves no stone unturned, and if it takes longer to treat a patient, she will do it.
She knows many patients come from all over the country to see a Dr and may need extended time. We have never waited over an hour and it is rare. But on the other side of this coin, there have been times when my daughter was going thru some great difficulties and she spent way over an hour with us. She even worked thru her lunch one day to help solve an issue.
Has she ever yelled at my daughter, yes. WAS IT WARRANTED? YES. My daughter has so many psych issues and could easily p off the Pope on a good day. She can be violent, antagonistic, non-compliant, repulsive, inappropriate, combative, and at other times, just not there, by choice. She will not make eye contact or communicate.
The DR would ask questions and get no answers or a groan. Then perhaps an expletitive. So on a couple of occasions, there has been a mutual yelling contest. WAS it essential to be able to get thru to my daughter, you bet. It worked, the Dr was able to break thru the brick wall and then could get down to solving the problems.
The Dr has never raised her voice at any other times. She is one of the most compassionate and caring drs that I have ever had the experience to know. She also has the ability to stare at you and see if you are on the same page with her. Any other Dr, including some Lyme literate ones could not make a good boil on her backside.
Her staff has also been great, but have probably asked the dr how she can continue to work with my daughter. That she should drop her, because she has been so God awful to the Dr and in the office. BUT the DR has persevered and stuck to it. No one would want to work with my daughter on most days.
Dr C knows we would no longer have a daughter without her help. I don't even think I could persevere if I was not the parent. It has been very hard to continue to struggle with a violent, psychiatric and suicidal child that hates all of us. BUT Dr C has never given up on us and NO ONE WANTS A CURE MORE THAN SHE DOES.!!!!!
Again I state, She is our Angel! Perhaps we should spend our energies explaining the ID's instead of our warriers. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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tickbattler
Unregistered
posted
Wow - Thank you both Lymemomtooo and PinchotGail for your comments about Dr. C. I have asked for comments on her in the past and never heard much, although my husband heard her speak and thought she was very good.
My husband was on the waitlist for her for months and then ended up going to see Dr. R in NYC instead. However, sometimes I wish we had waited for Dr. C!
One factor, for us, however, was that it sounded like she charged $800 for every family member's first visit. Since all 5 of us have it, that was just too much for us. Is that what you experienced or did she give any type of discount if several family members were affected?
My boys see Dr. J in CT and he as kind enough to only charge $800 one time even though he saw both of them.
As for Dr. B, I do think he can be useful and knows something about lyme/coinfections, but he now charges $600 for the first visit and for that money, I would choose Dr. C instead.
My husband saw Dr. B a couple of times and then just got so frustrated with the dirty and disorganized office, he moved on. The long waits were really annoying too.
However, Dr. B diagnosed his bart before he had a positive test and also had him do a spect scan which showed hypoperfusion. I think he knows what tests to do and does treat fairly aggressively.
I was on the wait list to see him before I decided to do Dr. Zhang's protocol and was quite annoyed when he called my house at 10:30 at night, waking us up to tell us about an opening the following morning.
I just think that is very, very strange (and rude) to call someone that late when you don't know them. I know he needed to tell us about an opening, but I'm sure his patient didn't wait until 10:30 at night to cancel on him! The night before, he called at 9:30 pm about a different cancellation. We are in bed early b/c we have small children and often are up at night dealing with their lyme issues.
Well, that's it from me. Please do let me know about Dr. C's pricing for families, as our neighbor is looking for an LLMD for her husband and son and I did mention Dr. C.
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