posted
I went for my first visit to a Dr. E in Jackson, NJ and was curious what everyone else experience with her was like?
The reason I ask is I just got my CD57 results back and they don't look good.
When I was in her office she said if you have any questions or concerns at all please call.
Well, I had questions about the test and all I wanted was 2 minutes of her time or a nurses time to explain to me what these results mean.
Her answer was schedule an appointment and come on in and we will discuss.
Here is what bothers me about that.
1. I am an hour away from this doctor, which mind you was the closest one to me, so I have to take a day off from work to go there. As a courtesy when you send someone results that they don't know how to read wouldn't you think you would spend at least a minute or two explaining to the patient what it all means?
2. So I scheduled my follow up appointment and I asked can you give me an idea of what it costs since it's all out of pocket and the person on the phone was like well it could be anywhere from 200-350 dollars.....well what is it?
3. I asked what tests where going to be performed and they could not answer that.
I am beginning to wonder if this is just a way to fleece patients for more money?
Now don't get me wrong when I was actually in the office she couldn't be nicer.
However when you tell a patient that they can call at anytime with questions or concerns and you can't even spend 2 minutes on the phone with that person that concerns me.
And if the doctor is too busy then at least have one of your nurses try and answer your questions or at the very least write them down and get answers for the patient.
I don't know about you but I've been to quite a few doctors in my time and to just send blood results in the mail over the weekend and not even have the courtesy to give the patient an explanation without a visit seems un-ethical to me.
The thing that sucks most of all is I have very few options.
This doctor came highly recommended and she is the closest to where I live.
So I am kind of stuck unless I want to drive even further.
So if someone could give me some opinions on Doctor E from Jackson, NJ I would really appreciate it.
What can I expect for long term care from this doctor?
Am I being crazy for wanting to get a few questions answered over the phone?
Or do they know that your caught between a rock and hard place so they just take advantage of you?
Suggestions, opinions....
Thank you.
[ 29. July 2008, 06:38 AM: Message edited by: LarryB ]
Posts: 29 | From New Jersey | Registered: Jun 2008
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posted
So am I worrying for nothing? That could be.
My CD57 came back with a number of 30. From what I understand it's supposed to be between 60-180.
The other thing that concerns me is I feel relatively good. That I am happy for but I am concerned that if I don't get treated right away with aggressive treatment that I may start to develop some severe problems.
My doctor who shall remain nameless "Doctor E in Jackson, NJ" has Lyme disease and from what I understand has had it for 20 years.
So I know she understands. Maybe I am just getting paranoid.
I've just never had a doctor send you results in the mail and then not give you the common courtesy of explaining what all of it means.
I was wondering if anyone else had dealings with this doctor and if this is normal and that I am not just freaking out over nothing.
Thanks for your support.
Posts: 29 | From New Jersey | Registered: Jun 2008
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posted
Hello, we do not see Dr. E (too far for me) but I will share our experience with you.
We have 4 in this family with lyme and co.
Our bloodwork or other test results are always mailed to us (promptly I might add). I have never, in over 20 yrs of being ill, had a dr's office do this automatically w/o me calling and asking until I was treated by an LLMD.
Only if it is an emergency situation, or if treatment should change b/c of the test result do I talk to our dr.
I make notes and we discuss all of this at the next appointment.
My guess as to why there is a cost range for your follow up appt might depend on how long you need to talk to her. Also blood draws in the office will always have an additional charge.
I can hear the concern in your message. I know how frightening it can be. It is great that you feel well. Good for you! You have caught this early, hang in there.
By the way, if you want to really feel "taken advantage" of picture this:
Not feeling well, in fact you can no longer think, hear, talk (slurred speach), walk a straight line. You have not been able to sleep for over 2 yrs. You are in so much pain you want to die. Your very expensive, highly regarded neurologist says to you that what you are experiencing is "all in you head".
When you finally find a LLMD and get the correct dx, you have been sick for most of your life. Now not only are you really sick, but you find out that you may have given this infection to all 3 of your children.
Yes, I know what it feels like to be taken advantage of as a patient. But it was not by a LLMD.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Well that certainly puts things in perspective.
I guess I am just frustrated by this whole disease and the way that it is handled.
Are you feeling any relief at all?
How about your children?
All of this mis-information, sneaking around not mentioning LLMDs for fear of exposure to some board that could close them down, PC's who send you on your merry way after 3 weeks of antibiotics, and stories like yours are just leaving me exasperated by the hole thing.
I am just so ****ed at the lack of concern over this illness.
Thank you for your reply.
Posts: 29 | From New Jersey | Registered: Jun 2008
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posted
Larry, I know the frustration - believe me.
It is certainly not fair the way we are treated.
It is also not fair how our drs are treated.
Most people who are not in this up to their necks just can't comprehend what it is like to have this "controversal disease".
If it helps any, I have never heard anything negative about the llmd you are seeing.
I know someone personally who has been her patient for some time, and she comes highly regarded.
Even with early dx, this is not a quick fix. So hang in there. There is hope, and you have someone vry qualified to treat you.
In the meantime, read as much as you can so that when the appt comes up you have a list of questions for your doc.
Have you visited the Lyme Disease Associaton website? (www.lymediseaseassociation.org)
or www.ILADS.org (International Lyme and Associated Disease Society)
a new book by Pam Weintraub "Cure Unknown: inside the Lyme Epidemic"
Best wishes and good luck.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Larry, My suggestion would be to mail this list of problems to the Dr directly.
Put personal on the front and it should bypass the front office and go directly to the Drs desk.
Explain what your concerns are. This is one way to possibly change the Drs outlook on these things.
I understand your frustration completely!--but I do know this Dr is excellent in treating LD and company all around.
Another suggestion is to go to the Success Story thread at the top of the General Support Forum here and read about the success others have had treating this disease.
We come HERE for explanations. WAY better than waiting around for a nurse to call. And yes, the LLMD's are extremely busy since the ducks won't treat us.
A low CD57 doesn't mean you're dying anytime soon...just that you're likely chronic.
Some VERY ill Lyme patients have counts of 200, some 30, some 10, some 150.... So in my book it doesn't mean squat.
Just keep reading and keep learning. You'll learn what is important enough to call the dr about.
At the same time these are peoples lives and a lot of people, like myself are very scared and concerned at times.
I've been to many doctors in my day for various things and I never had a doctor tell me to call if I had any questions and then when I do call with a quick question or two tell me that you simply don't have the time and that if you want your questions answered you must schedule an appointment.
I've called doctors on weekends, off hours, etc to ask various questions and not one of them told me if you want to discuss anything that you have to come in and PAY me for a visit.
I understand they are people with their own lives.
At the very least allow me to ask your receptionist or nurse the questions if you are WAY to busy and let them get back to me later with answers.
But to be rude to a patient who is shelling out their own money out of pocket and driving over an hour for a visit at the very least be slightly sympathetic and understanding.
Good service goes a long way. And treating your patients who are suffering and confused with a little compassion and understanding is not too much to ask.
I would never do that to someone.
I work for a very large company that runs 24 X 7 and I get calls in the middle of the night weekends while on vacation, etc.
If I ever told someone that called me to leave me alone and wait till I am in the office speak with me I would be fired.
Don't get me wrong when I was in her office she was very nice and spent time with me and did not rush me out the door.
However, tell your support staff to be a little but more professional and considerate towards people.
Professionalism and courtesy towards the people that are paying your bills, and out of pocket I might add, goes a long way and is not too much to ask for.
Posts: 29 | From New Jersey | Registered: Jun 2008
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When you do go in on your next visit explain to her your frustration and concerns....
I have not seen her personaly..but have not heard anything bad about her either...
.....years ago I had gone to her husband who was a very good LLMD....
If you are feeling pretty good and you were happy with the way you were treated by her in the office then ....maybe...you might want to stick with her for now..... ...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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I know Dr E. She is very good, charges reasonably, never rushes you and takes alot of time with patients. The down side is sometimes the wait time is long, she will not get on the phone, and sometimes an office person can be unhelpful/short. I caulk all 3 downs to how busy the office is and even so to get an appt does not take months like some other llmds.
I think they try to be as accommodating as possible considering their patient load.
Posts: 262 | From nj | Registered: Dec 2007
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I have heard a lot of good about Dr. E. That being said, if you are unhappy I recommend you get another opinion or change doctors. There are a number of good NJ LLMD's out there. Go with your gut.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I am one of Dr. E's patients that has gotten well. I credit Dr. E with saving my life. There are many here, and many more that no longer hang around this board.
I'm sorry you feel frustrated, but you shouldn't berate a doctor for their support staff's behavior. if someone was rude to you, by all means let the dr know.
If you had a question, all you had to do was tell the nurse/office staff your question, leave your number, and they will get back to you. They truly do. As a solo practioner, I can understand why Dr E won't come to the phone. No one would ever get seen if all calls were personally attended to.
As others have said, I have never had a Dr's office mail me a copy of my test results.
I can tell you if there was anything of immediate concern, there would have been a note of instruction to you or a note to come back in to the office.
The CD57 is a diagnostic test that helps in the diagnosis of Lyme. There are 2 figures on your results - the CD57 count, and the ABS basis. There's a really great explanation of it today posted by FUZZY SLIPPERS - http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=070009
If it makes you feel better, I've never gotten higher than a 2/22. Even when I was feeling really good, and had been off antibiotics for a year, 1/19. Yet others here would have much higher counts and felt like crap. So, go figure. It's helpful in diagnosis, but the cat's still out on the interpretation of the count.
I've taken my tests to outside dr's for their interpretation and it was pretty much the same.
I'm well, not symptomatic, and have been off antibiotics 4 years now. I still go in for followup and labs every 3 mos. I continue to detox, watch my diet, exercise and always sleep 8 hours or more.
I can't recall being charged more than $110 for just a followup visit (and that includes a $10 charge for a blood draw). It's been my experience that typical followup visits are $80-$100, but it all depends on how much time you spend with the Dr. IVs, injections and such could tack on more. Your accusations of gouging are seriously unfounded and am hoping it's just Lyme affecting your perceptions of reality.
However, it's a free world, so if you're not happy, there are more LLMD's here in NJ. Less patients means more time for others.
And food for thought - if you do decide to stay, I suggest scheduling yourself for the 9am appt, assuring you don't have to wait forever in the waiting room. I know I personally threw their schedule in the garbage last Thursday, as I was the 9am and didn't leave until 9:45. And then the day just gets further behind from there...
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
She could have called back after hours.
My other doctors always call when they are finished for the day, or a PA will call at least to address concerns.
I believe a CD 57 is a gauge on how your immune system is responding to lyme, not how much better your do/do not feel.
Mine is 45, and I feel much better compared to 4 months ago. So, its basically for determining whether you should/should not continue abx.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Even tho i have moved to CO, my mom still sees her once a month...
She is probably one of the most wonderful people I have ever had in my life - and she is stretched WAY too thin.
I know that she always does the best that she can...and that we all always have to sit tight. She will come through for you in the end. My mom discusses me every time she goes - and she has been more than willing to set up a consult with my present dr (which i have to drive 5 hours to see now - and dangerous roads in the winter)... Have patience...and keep educating yourself - the more educated you are the easier it is for her to help you.... Good Luck
Christine
-------------------- We each have a right to be healthy, and no one has the right to jeopardize that! Take Charge of your health - and your life you are the only one who will! I know what I am & I know what I am not I know what I HAVE & I know what I HAVE not Posts: 33 | From co | Registered: Aug 2008
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