LLMD--is it worth it? Cost/benefit of Lyme treatment?

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Spanky
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LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Sun 25 Jul 2010 17:50

Every once in awhile, complaints pop up on Lymenet about the financial toll of Lyme treatment.

And since these people are posting on Lymenet, I would have to assume they we are most certainly talking about "LLMD"s.

Here's an example of this from a recent posting:

http://flash.lymenet.org/ubb/ultimatebb ... 110#000014
My credit card debt is over $50K because of this dumb illness. Oh, and I have student loans and a mortgage and all the other regular bills.
$50,000? No s**t? Really?

In another thread, I noticed where someone had said that they had been "fired" as a patient for wanting to do orals rather than an iv, and that the intial consult was $1000.

So...is it worth this? What does this do for you?

Reason I ask is because I have never seen an "LLMD"...have worked with my internist, and have, as a consequence, only paid my deductibles and co-pays...even for the most cost-intensive phase...when we were going through all the diagnostic work-ups. Insurance covered. I was never placed on an iv. Orals only.

And now...I see the doc once a year. My average monthly cost is about $5.00. $60 a year. My co-pay for thyroid meds. Has been for years. Most I ever paid was $1000 in one year. I have $0.00 Lyme-related longterm or short term debt.

And the big question to me is: 'am I any worse off' ?...is my health status any worse, or substantially worse, than those that have been encouraged to put themselves in the poor house? When I was first diagnosed, I was told that I absolutely HAD to haul my behind to an "LLMD"...or face death or longterm disability.

Well, now, I seem to be just fine. And I was really, really bad. About as bad as you can get, I would think. As I have said, heart, neuro, eyes, you name it...had trouble just walking and speaking. Even the palps and tachycardia which I thought I was going to be stuck with forever, seem to have dissipated. (123/71, pulse 73...as of yesterday). Ta-da.

From reading there...here...elsewhere...I tend to doubt it. That is, By comparison, it doesn't seem as though my "Lyme journey" is substantially different than those that went the full LLMD route...(except, of course, I still have my money). And it seems, sometimes, to take about ten years for full recovery.

So what if all this "LLMD" stuff really doesn't do a damn thing for you?

My suspicion, my theory...is that people who have invested $50,000 in anything...tend to become true believers. They are "invested". And they encourage others to do the same.

And "activists" who insist that people MUST have an "LLMD" or DIE...well, they have "bought into" it, too, haven't they? How could they possibly come to grips with the realization that they have advised countless patients to throw away their life's savings?

And the "LLMD"? Well, he/she would have to admit that they have been recommending what is basically worthless treatment. And beyond the moral, ethical considerations...there could be legal repurcussions, I would have to imagine. (Some of them may offer treatments that are worse than useless).


So, from a psychological standpoint...I guess it is interesting to me to realize, keep in mind, that the patient advocates and members of "LLMD", Inc., may have a distinct and powerful motive for denying, themselves.

Martian
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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Martian » Sun 25 Jul 2010 19:23

My antibiotic treatments (all oral): 6 weeks doxycycline, following by 6 weeks amoxicillin. Some time later: 18 months clarithromycin + hydroxychloroquine. In total it cost me just a few hundred Euro.

What is making the treatments of certain "llmds" so expensive? Is it the IV route? Why not stick to orals?

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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Sun 25 Jul 2010 19:42

"Martian":

What is making the treatments of certain "llmds" so expensive? Is it the IV route? Why not stick to orals?
As to the iv issue...I have no idea...and I have been asking this question of proponents of longterm iv therapy for years, now. (Part of the reason that these people are turning paupers, though, is probably due to the LLMD refusal to accept insurance. This means that the patient has to bear the associated costs directly, out-of-pocket).

Anyone?

My understanding is that an iv is medically sound practice, justified, only where there is evidence of heart, neuro, complications, and the theory is that you want to get the antibiotics in there quickly and efficiently in order to protect against the possibility of permanent injury.

From the "LLMD" and "LLMD" patient perspective, it seems to me as though the rationale is simply an uncritical, "more is better".

"Let's do something, even if it's wrong"-type mentality.

And I guess that's understandable, from what I experienced. The symptoms of "PLS" or "chronic Lyme" are very real and quite debillitating. So, the patient wants to see the medical community "do something" to help...

...even if it's wrong, I guess.

But the problem, though, is that some of these meds can have side-effects, consequences, also.

But what I wonder about is the psychological outlook...how the patient's own perceptions of the nature of the illness may impact on their personal outcome.

What you believe...how you think about the illness and relative chances of success, may be very important.

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Yvonne
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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Yvonne » Sun 25 Jul 2010 21:06

Spanky wrote :
Every once in awhile, complaints pop up on Lymenet about the financial toll of Lyme treatment.

And since these people are posting on Lymenet, I would have to assume they we are most certainly talking about "LLMD"s.

Here's an example of this from a recent posting:

http://flash.lymenet.org/ubb/ultimatebb ... 110#000014

My credit card debt is over $50K because of this dumb illness. Oh, and I have student loans and a mortgage and all the other regular bills.

$50,000? No s**t? Really?

Image Image


That isn't normal anymore !!!
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Sun 25 Jul 2010 22:27

"Yvonne":

That isn't normal anymore !!!
Well, I am certainly the wrong person to ask...but this thread is coming from Lymenet within the past few days.

So? Is it generally representative of "LLMD" patient costs in the US or not? Anyone who has been around for the past few years has, no doubt, seen similar statements over at Lymenet.

Heath insurance in the US is provided, usually, through private companies, insurers.

If an "LLMD" doesn't accept reimbursement of costs through health insurance providers, then the patient has to pay directly.

minitails2
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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by minitails2 » Mon 26 Jul 2010 1:52

I guess all "LLMD"s aren't created equal. Mine used to take insurance and stopped but I still haven't broken the bank.

Martian and Spanky, thanks for the testimonials. I've only taken oral abx as well and recently stopped them. I feel much, much better. :D

Martian
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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Martian » Mon 26 Jul 2010 2:43

You can find interesting doctor reviews on RateMDs.com: http://www.ratemds.com/


Take for example Steven Phillips, MD, who is an ILADS Director. The following reviews about him might provide some insights into how Lyme, inc. is gathering its money.

Source: http://www.ratemds.com/doctor-ratings/1 ... ON-CT.html
3/31/09

Dr. Phillips believes only in long term antibiotic treatment. My daughter's stomach was ruined with those antibiotics. After taking so much money ($625.00 - first visit, $ 300.00 next 5 visits), his office never called to find out how my daughter was feeling. - and he positions himself as a Lyme researcher! We still have his last prescribed medications( unopened). Now my daughter under holistic doctor's care and feeling much better.
2/26/08

Doctor seems very knowledgeable about Lyme, but there are many drawbacks. He does NOT accept insurance. Will ONLY prescribe Lyme prescriptions for a 30 day supply, so it's more costly that way. Stops meds at the end of every 30 days. Keeps you returning nearly EVERY month @ $300/visit (remember, no insurance). Did a phone consult and it wasn't even covered by insurance! Doctor doesn't speak in terms that patient can easily understand--he's VERY confusing and hard to follow. Patient Beware, don't be fooled--you CAN find an Infectious Disease doctor who DOES treat chronic Lyme AND does accept insurance. Use sites like this one to locate a reliable one.

I am sure one can find similar reviews about other "llmds".

Martian
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Review on Gregory Bach

Post by Martian » Mon 26 Jul 2010 3:15

Bach is always one of the first potential scam "llmds" who come to my mind. So here goes...

Note that Bach has also been on the board of the ILADS! (and that Tincup praises him, and advertised and rattled the tin cup for his 3.5 million dollar treatment center!)


Reviews on Dr. Gregory Bach, COLMAR, PA.

Source: http://www.ratemds.com/doctor-ratings/4 ... AR-PA.html


I've collected the WTF reviews, although they don't really shock me any more, as I have been reading many similar reviews about Bach over the years, including on Lymenet.org, but those got censored.

7/20/06

Dr. Bach does have very long waiting periods but that is nothing compared to the rest of my griefs. He is known among many other local doctors as a scam artist. He uses a lab called Bowen in Florida that is not even approved to do labwork on humans. I can't say too much or he will sue me. Don't be fooled by this very clever "doctor". I was charged nearly $5000 for just one initial appointment. If you have any questions or comments about Bach please email me at Conrad_3013@hotmail.com. I like to hear from other patients.
10/17/06

doctor is a scam-morgellons patients beware. he is not a doctor who care as advertised. be prepared to drive a long ride for a big disappointmment. it's not a clinic of doctors to help you. it is a small house not a clincic like they tell you, it's a crime that they acn charge 2,000 plus for an initial visit and not do anything for you, they say it's abuliding of doctors from all specialties, and a lab, and a pharmacy, and it;s none of that. i went there for hope for a cure or help and understanding form someone in the medical community finally and all i got was scammed.my appt was susposed to be 5 hrs, after 2 hrs of waiting i tired to get some info but the one way glass to the nurse was locked and when he did come to the window and i asked when i was going to be seen. the very rude man told me he couldn't answer any of my?'s and i had to leave then when i said what are you talking about he yelled ge the fu-- out. pls help me. out of room of words here

8/14/07

Most upsetting, worst office visit experience of my life!!! Waited 5 hours on a Friday evening to be seen. At 11:00 pm, receptionist/dr.'s wife saw that I was struggling to walk to the exam room, told Bach I must be faking as she had seen me do some light yoga stretches earlier. Bach then refused to see me--wouldn't let me explain that my fatigue causes neurological weakness in my legs, making it nearly impossible to walk. I was incredibly confused and upset--crying from his lack of professionalism and lack of compassion. He/she also wouldn't listen to my boyfriend as he tried to explain. He later called my previous lyme doctor and told her I was faking my symptoms (without even examining me!!) Other people waiting in the office said that 4 - 5 hour waits were normal. Also, they messed up our first attempt at an appointment--we drove 3 hours there just to find they were closed. His wife was very abrasive and condemning. Don't go to him--there are several better lyme docs in the area.
8/16/07

Dr. Bach made us wait for up to 6 hours for scheduled visits, and gave us false information about the relationship between ALS and Lyme disease. He basically believes that ALS doesn't exist, and all cases of it are untreated Lyme. He is taking advantage of ALS patients by letting them believe that Lyme treatment will cure them, when in most cases, it won't.
12/4/07

99 percent of his patients have been found to have lyme. Question him and you will find yourself with a threatining letter. Truly this man needs to be investigated by real doctors. Profit appears to be the motivating factor.
1/1/08

I saw Dr Bach a few times in late 2000. Everything was poor except the fact that he properly diagnosed my Lyme Disease. After complaining about how shoddy the office was run, I was "kicked out". I switched to a doctor closer to home who could manage his appointments on time and who continued with the antibiotic treatments. I am now very good, I think all Lyme is gone.
4/9/08

I saw Dr. Bach for over 4 years (1998-2001). Trouble was that there was NO one else educated in the area of Lyme disease, and I was seriously dying from it. I feel very sad that I stayed with him for so long. His office is horrible and his wife who answers the phone, is even worse. My average wait time (I HAD to go at least once a month per their rules) was at least 4 hours, and that was for an appointment I had always made a month in advance. Never, never any apologies, just rudeness. And let me tell you, I am the nicest person you will ever meet. I have since moved away from PA, and far away from all those terrible ticks. But even after being on antibitics (IV and orals) I am still dealing with many of the chronic symptoms. I HIGHLY suggest, if you have insurance, visiting the Tick Borne Disease Center of SE PA -Dr. Leonard Schuchman in Chadds Ford, PA (intersection of 202 and Route 1). This office accepts insurance and were able to get me on the IV antibiotics I needed. God bless.
5/24/08

This man is a nut case. He diagnosed me with lyme without any blood work. Gave me a shot of bicillin when I told him I was allergic. I had to wait 5+ hours each time in his waiting room one time with a family of 8 children eating dinner on the floor. I went into a severe herx initially (couldn't swallow) and his office was closed with no emergency contact. The message said for emergency's go to your local er. Cute how would I explain the antibiotics I was on. He does not allow for spouses to come with you into the exam room. I was so brain fogged I needed my husband there. This man told me I should be in a hospital if I was that fogged. He cleary does not understand lyme fog. He also accused me of trying to get disability. I have no idea where that came from. I left in tears. Don't waste your time nor money on this one. Other llmd's won't even work with him. The man does not deserve the right to be called a dr.
8/11/08

I went to him several years ago. I really needed IV and he kind of drug me along with orals and shots for awhile and it never hit my brain. I could no longer afford this man, so I found someone to do IV and I made much more improvement. The testing-- I always wondered about. I lost my life savings. I used to be scared when he would come in the room with needles. I mean who was this guy I was letting shoot me with stuff. I was desperate and so sick. Office management is awful. Wife is no asset. She is too rude to work with people. I think he knows Lyme, but he is overcharging his patients terribly,which makes you question his compassion. There is no excuse for the long waits. An hour is understandable--but all night is RIDICULOUS. He is paranoid and if he gets suspicious--he tries to drop you. Insurance companies don't want to cover his treatments; you pay the cash and fight them on your own--and lose. He taught me, diagnosed me, and made me poor. It was a hell time.
9/27/08

I was unhappy with this doctor because I was very ill with lyme disease and heard that he would be able to help me. he does not take insurance therefore it is cash only. When I ran out of maoney, he told me that I would have to find another doctor to help me.
10/3/08

What to say about this doctor. Terribly long wait, painful treatments! He made me wait for 5 hours and then told us he was spying on us!!!!! Do not reccomend him.

So, would you think it's worth it to visit Gregory Bach?

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Spanky
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Re: Review on Gregory Bach

Post by Spanky » Mon 26 Jul 2010 5:42

Martian wrote: So, would you think it's worth it to visit Gregory Bach?

Here is some old stuff on the topics of Bach, the Lyme Center, and costs of "LLMD"s, in general:
Author Topic: Good news... LLMD's new research center is underway
Tincup
Frequent Contributor
Member # 5829


posted 10 June, 2005 01:43 PM
---------------------------------------------------------------------------­-----
Congratulations to Dr. Gregory Bach!
I just heard the new offices Dr. Bach and his family have been working
to get up and running are moving along... A new Research facility for
Lyme Disease!!!



>From what I understand... They have bought the ground and will be


building in Hamburg, PA... which is on Rt 78 between Harrisburg and
Allentown.... I think about about 1 1/2 hours from Gettysburg.

Good news, good news!


------------------
If you get the choice to sit it out or dance...


---------------------------------------------------------------------------­-----


Lymeindunkirk
Frequent Contributor
Member # 7118


posted 11 June, 2005 09:12 AM
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Heard Dr. B had purchased land previously for his research center and
then there was a problem with the land. Its good to hear he was able
to find a new piece of land.
With what Dr. Bach charges though he doesn't need any research money.
He certainly took enough of mine. About $9,000 in just three short
months!


He told me he has 1200 patients. A conservative bill would be $650.00
for one person. He insists each patient visit once a month. You do the
math. He is bringing in over 8 million a year more than likely.


Dr. Bach is knowledgeable but I think some lean towards the fame and
fortune side a bit too much. Not enough true caring about the
patient.


Not all of these doctors deserve to be given research money. Not the
ones that charge so much they have patienst filing for bankruptcy
because of the doctor fees or must go without heat for three months in
the winter because they can't afford to get it fixed (a family I know
with Lyme).


After three months of treatment I found another qualified doctor that
doesn't gauge me for fees and doesn't insist Igenex test me every two
weeks ($900).
Dr. Bach didn't even ask if I could afford it. They just
do it without asking me and charge it to my credit card.


If you have money to spare or don't mind seriously going without go
see Dr. Bach otherwise I think you can use someone else.


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Posts: 363 | From: Dunkirk, MD 20754 | Registered: Mar 2005 | IP:
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I don't know Dr. B, but I can tell you that my doctor in NC charged my
insurance over $50,000 for my IV therapy.
Now, I'm not complaining
because I was treated and he had an excellent staff. I do complain
however that now I am off the pic line, I am receiving 3rd rate
treatment - I'm not cured by any means. Can't get an appointment with
anyone! Also, he is selling a CD that he produced for HIV/AIDS with
fancy publicity/marketing, etc., and builidng a new building. No
wonder he has no time for patients. I have heard from other doctor's
that they think he is brilliant, however, has become more on the side
of being an entrepreneur. They are upset because they count on him to
be their Infectious Disease specialist. His success is going to his
head. However, that's his choice - and that's America. Unfortunatley
for us lymie's there isn't another doctor around the corner to help
us! That's my complaint about my Dr. here in NC!!
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Posts: 62 | From: Cornelius, NC | Registered: Dec 2004 | IP:
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Lymeindunkirk
Frequent Contributor
Member # 7118


posted 11 June, 2005 06:51 PM
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Alslyme, I knew that there would be someone who wanted to argue with
me on this subject so here goes.
I did choose to stop seeing Dr. B and did so after just three months.
It took me that long to find another qualified doctor. I'm not over
estimating his charges. I know this because I PAID THEM! Perhaps I
should post my bills for you to review. I have had no less than ten
emails from people agreeing with me on this issue. One even emailed to
tell me he is a "crook". Now I don't believe that but his charges are
high.


I feel he is very knowledgable but he seems to have developed an
arrogance that puts off many people. Maybe he just has too many
patients now and needs to train an additional doctor to work with him?
I don't know what it is but it bothered me enough to make me change
doctors. I have to worry about myself and my son not everyone else.


I see a lyme doctor now that is very caring and even called me on a
Sunday when I was feeling particular poor. I can't see Dr. B. doing
that. It took a phone call once a week for thirty days before I could
even get my medical records mailed to me and even now documentation is
missing that I had paid for.


It's sad that there are doctors out there that are taking advantage of
the fact that they have a corner on the market. Some people are lucky
and have insurance that covers some of the charges but almost no one's
insurance remiburses all when the costs are as high as some of these
doctors.


Can you tell me why some doctors charge so much more than others that
offer the same exact treatment?


Is Dr. B charging different people different charges? And why would he
do that?


Everytime I was in Dr. B's office people sat in his waiting room and
complained about how long they had to wait and how much he charged.
Some patients told me that they had gotten better and some said they
hadn't. Intially I kept an open mind and listened to everyone, people
who loved him and people who were angry. I wanted to form my own
opinion.


I myself began the search for a new doctor after just one month. I
truly liked Dr. Bach and it was clear that he has a passion about
finding a cure for Lyme, but I didn't see the same passion towards the
patient. It was an odd mixture that confused me. I wasn't sure if I
should trust my instincts and find a different doctor. I think he is
brilliant but it seemed to be his way or no way.


I did not care for the numerous test that were being done without my
being given a choice and then charged to me without a care in the
world as to whether I could afford it.


My present doctor lets me know what he would like to do and then tells
me how much it will cost before it is done. I am given a choice to say
yes or no.


Never once was I ever given a choice to not have a test done at Dr.
B's office. Igenex testing every two weeks is very expensive. Never
once was I asked if I wanted to purchase supplements. It was put on my
bill and handed to me. When your sick and don't have any where else to
go of course you have to pay it. My husband and others kept telling me
I was nuts by continuing to pay him.


Haven't you read posts from some of his expatients talking about how
they were refused treatment after missing one visit either for weather
or because they couldn't afford treatment? Now that seems unfair!


It also bothered me a great deal that any doctor would expect SICK
people including sleepy children, to wait, sitting in a chair, for
over three hours to see him for ten minutes and then get an unpleasant
shot at midnight. How arrogant.


I hope and pray Dr. B does very well with his research center and even
finds a cure. It will take many great people with a special dedication
to do this.


If I refer anyone to Dr. B, I explain that he is knowledgable and that
he is a great place to start. I also explain the costs they should
expect and the time involved. I try to remain fair.


I wonder however, has anyone ever seen Dr. B and been told they don't
have Lyme? If so, let me know because it would make me feel so much
better.


I'm sorry if you don't agree Alslyme. NO one is perfect and Dr. B
certainly isn't. He is brilliant but that doesn't mean anyone should
follow him blindly.


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Posts: 363 | From: Dunkirk, MD 20754 | Registered: Mar 2005 | IP:
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Spanky
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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Mon 26 Jul 2010 5:51

"minitails2:

I've only taken oral abx as well and recently stopped them. I feel much, much better. :D
Excellent. Good to hear, Mins.

Yeah...I am really talking about "bang for your buck" type stuff, here... whether the fees apparently charged by some of these guys are warranted, if they are then, yielding dramatically better results in their patients?

Whether the money invested by Lyme patients in the "LLMD" approach is really worth it?

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