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

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

Post by Yvonne » Mon 26 Jul 2010 6:57

Martian wrote: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?

I haven 't need to pay for my ABX (all oral)

The German internist who wanted to give me three weeks IV treatment ( I didn't do it), I asked what the cost would be.

That would be around 1000 Euro. My insurance would pay it.
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

Martian
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Re: Review on Gregory Bach

Post by Martian » Mon 26 Jul 2010 15:16

Lymeindunkirk wrote:
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.
Oh yeah, of course all these "llmds" from Lyme, inc. use Igenex to do extensive testings, the lab that is part of Lyme, inc. Funny how all those folks claim not to have any conflicts of interest.


Lymeindunkirk wrote:
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.
On the same thread you can find positive comments from ALSLYME, also a patient of Bach:
Posted by ALSLYME (Member # 6721) on 11 June, 2005 10:30 AM :

How great is that! With Dr. B's number of years' experience and so many patients that he has helped, what better person to receive grant $$!!
Sadly, ALSLYME died on 10 June, 2006.


The following was posted on sci.med.diseases.lyme by Sewer Rat:

Source: http://groups.google.com/group/sci.med. ... 5e1a843748
Date: Sat, 17 Mar 2007 17:16:48 +0100
From: Sewer Rat
Newsgroups: sci.med.diseases.lyme
Subject: We've lost another LymeNet member... [ALSLYME]

I remember this poster, ALSLYME, but only read today that he passed away
last year. He was given the diagnosis of ALS, but then went to Bach, who
diagnosed him with Lyme and treated him with longterm antibiotics.


http://flash.lymenet.org/scripts/ultima ... p=1#000003
ALSLYME wrote:
"My llmd told me to expect to go through a really bad time, that i will
feel like i'm going backwards and getting worse, but he says "it gets
worse before it gets better"."

http://flash.lymenet.org/scripts/ultima ... p=1#000008
ALSLYME wrote:
"I see a Dr. B and I realize I've gotten worse in some ways during
treatment, but I also know that if I never saw him, when I did, I
wouldn't be here today, or at best on a feeding tube and trache."

http://flash.lymenet.org/scripts/ultima ... p=1#000005
ALSLYME wrote:
"I believe there are 2 Dr. B's! One of them saved my life, literally,
and he's not in NY!"


=======================================
This is topic We've lost another LymeNet member... in forum Medical
Questions at LymeNet Flash.


To visit this topic, use this URL:
http://flash.lymenet.org/scripts/ultima ... 1;t=045364
Posted by Tincup (Member # 5829) on 01 July, 2006 01:32 AM :

Our good friend and LymeNet member... ALS/Lyme, recently lost his battle
with Lyme disease.
Looks like this was one of the several ALS patients who were given false hope by telling them they actually have treatable Lyme disease. I guess the likes of Bach don't do refunds when they fail...

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Spanky
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Re: Review on Gregory Bach

Post by Spanky » Mon 26 Jul 2010 16:38

"Martian":
Looks like this was one of the several ALS patients who were given false hope by telling them they actually have treatable Lyme disease. I guess the likes of Bach don't do refunds when they fail...
Yeah, when some of them start talking about defending "OUR" doctors...I wonder, exactly, who they're talking about? Friends of the Pat, the Wonk, Tincup, LDA and CALDA, I think...

(MY doctor is not an "LLMD". Just a regular MD who has made an extra effort to learn more about Lyme disease in order to better care for me, for which I am truly grateful. Hopefully, the knowledge he has gained in the process may now help him recognize the disease in its early stages in other patients).

But just to highlight the problems all these intertwining relationships create...Bach was accused of some very serious and specific allegations that were posted online.

Bach was allegedly firing terminally ill ALS patients with the help of an attorney. Bach was alleged to have treated these patients with iv antibiotics, and when they worsened, had the attorney write them a letter discharging them as patients.

So, one poster asked Phyllis Mervine, of CALDA, as a patient representative, if this wasn't a situation that should be investigated on behalf of Lyme patients...

Here's her response:
Phyllis Mervine:

Last I heard, I don't need anyone's permission to do what I want to do
with my life. I don't "pretend" to act as anything and I define my own
"job." I don't get paid for what I do and I take advice from people I
trust. Unfortunately you have not earned a place in that privileged
group.

I am not investigating any allegations, however if this topic
interests you, I suggest you investigate and report your findings in
an unbiased manner. I agree with you that people on all forums tend to
attack the messenger and jump to conclusions without sufficient
evidence. A case in point: what evidence do you have of the validity
of the charges against Bach, that warrants repetition on the internet?
Have you seen certified copies of the alleged termination letter
provided by a credible source? Do you know facts about the interaction
between any aggrieved patient and Bach? (Doctors are entitled to
terminate their relationship with patients. ALS is usually a terminal
diagnosis so is fraught with emotion. I am personally acquainted with
a family member of one of Bach's patients who died of ALS, as most
patients with ALS do.)

I am not interested in trying to defend the indefensible - if there is
any crime or wrongdoing, let it be known and prosecuted. But here all
I see is smoke and no fire. I have a very busy life and have to focus
on what I can reasonably expect to accomplish that I think will do
some good. However I encourage you to investigate these charges and
let us know what you discover.

Phyllis Mervine
CALDA

Bach was, I believe, at the time, a member of ILADS, and Pat Smith was a board member of ILADS, as was (or is) Lorraine Johnson. (And of course the poster didn't have evidence of the validity of the charges. That's what he/she was asking the ALLEGED patient representative to look into).

I guess Lyme "activists" get offended if you ask them to help you. They are too 'busy' doing wonderful things, I guess...and want us all to think only "good thoughts" about "our" doctors.

But, I have to say...I don't know, of course, if any of these things said about Bach are true or not...but certainly the mere nature of the allegations sure makes Dr. Jones in Connecticut look good by comparison, don't you think?

Martian
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Re: Review on Gregory Bach

Post by Martian » Mon 26 Jul 2010 17:17

Spanky wrote:But, I have to say...I don't know, of course, if any of these things said about Bach are true or not...but certainly the mere nature of the allegations sure makes Dr. Jones in Connecticut look good by comparison, don't you think?
Two remarks about this:

1. all those bad reports on various sites about Bach are consistent.
2. he is the only "llmd" of which I have seen such extreme reports.

To show that you certainly don't hear such negative reports on all "llmds", e.g. compare the reports on Bach with those of Sam Donta: http://www.ratemds.com/doctor-ratings/3 ... TH-MA.html

All this makes it likely that the reports are valid. Combine this with other data that doesn't make Bach look trustworthly, like his website and the 3.5 million dollar treatment center, the dubious unpublished study on sexual transmission of Borrelia, and I say: with so much smoke, is it likely that there is fire!


P.S.:

NOTE: of course NEVER trust raving positive reviews on James Schaller, with his alleged track record of posting positive reviews on himself and his books, while posting negative reviews on his competitors!

Reviews on Schaller: http://www.ratemds.com/doctor-ratings/1 ... ES-FL.html

Gee, now I come to think about it... could Schaller be behind all the negative reviews on Bach?! :?

Update:

Striking about the reviews on Schaller: until 2009 there were just 2 reviews, then suddenly there appears this third review:
4/20/09

25 Books 27 Journal Articles. Available 24/7. He treats the worst of the worst. Including emotionally sick and hateful people. He uses no physician extenders and is funny and kind. He is an exceptional listener unless you try to make him do 2 hours of advanced medicine in 45 minutes. He has no non-surgical peer in the state. He has published a functional; cancer cure. He is willing to treat nasty vicious people that others do not want to touch. His evaluations make Mayo look like the dark ages. He saved our lives. A few whine with hate--obviously not well emotionally. All were either abusive or could not afford a self-funded full-time researcher. We were seen for free. One of hundreds of secret kindnesses no one knows about. His team as gems and all respond very fast. If you give them your emails, you might get a note from Dr. Schaller or the MBA office manager in 10 minutes. He reads and works massive hours while other physicians run mills. He gave our family 5 hours for free!
A Schallerish post if you ask me. It doesn't "feel" like a genuine patient report to me. Anyway, then on 23 May 2009 there suddenly appear 5 new raving extremely positive reviews! How odd is that! And between 18 to 29 January 2010 there appeared 10 new reviews. That's also kind of suspicious. Also, the substance of the reviews is suspicious; there is the well known narcissistic stuff, for example this:
The talents that God has bestowed upon Dr. Schaller (superior intelligence, passion, conviction, determination, generosity, etc.) have been well invested. I know that God looks down on His Work, Dr. Schaller, and smiles
ROFL!! :lol:
Last edited by Martian on Mon 26 Jul 2010 23:49, edited 1 time in total.

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Spanky
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Re: Review on Gregory Bach

Post by Spanky » Mon 26 Jul 2010 17:44

"Spanky": But, I have to say...I don't know, of course, if any of these things said about Bach are true or not...but certainly the mere nature of the allegations sure makes Dr. Jones in Connecticut look good by comparison, don't you think?

Martian:

Two remarks about this:

1. all those bad reports on various sites about Bach are consistent.
2. he is the only "llmd" of which I have seen such extreme reports.
I think that there certainly is enough there to warrant investigation, followup. And why hasn't the State of Pennsylvania simply taken him to task for treating ALS patients with iv antibiotics? And he apparently has insisted that Lyme was causing ALS (at least, in the past).

I suppose this is somewhat puzzling for non-US onlookers...but it is puzzling for US residents, also.

Under our Federal system, this type of professional regulation is a matter of jurisidiction of the individual state governments. So you can get some fairly aggressive policing in Connecticut, yet what appears to be dangerously lax enforcement in Pennsylvania. (I dunno. Maybe it has something to do with the people he likes to have his picture taken with).

But in the larger view, think about the efforts to pass legislation to "protect" our "LLMD"s?

(I remember this classic bit from one Lymenet poster about how Bach was seeing patients in the middle of the night, and became insistent that someone put him in touch with the Vatican, as he, and he alone, I guess, could cure John Paul II from the effects of his diagnosed Parkinson's. Whether it is a true or accurate story...hell, I sure don't know. But as the "newsies", reporters, like to say, "whatta story"...and something I like to remember when people talk about Lyme legislation efforts).

How about something to protect us from OUR "LLMD"s?

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

Post by Cobwebby » Tue 27 Jul 2010 0:46

I had excellent insurance while being treated for Lyme.( I had a positive test- no question that I had Lyme -all the classic symptoms)

But my PCP was an A-hole with a very condesending attitude. He was only willing to treat according to IDSA guidelines. Any health problems I had beyond my three weeks of Ceftin were referred to specialists- gastroenterologist, urologist, dermatologist, opthamologist, neurologist- they all treated me for symptoms consistent with Lyme Disease-but would not acknowledge Persistent Lyme. I. E- I had IBS, IC, ataxia, seizures,fatigue. None of which require antibiotics.Insurance paid for all the specialists,too, and the MRIs and cat scans, yada yada.

Finally he gave me a referrel for a psychiatrist. Insurance paid for him, too.

But I didn't get any better- and when I finally found myself in the office of an LLMD I cried with relief- and given the right treatment I improved. My LLMD did not take insurance. I was told that this was so they could treat the way they felt necessary without insurance company dictating what they could and could not do. I signed a release for long term treatment. In this case- insurance paid for all my medicines but not my office visits.

Our financial ruin came about because I was let go-and placed on Long Term disability. My husband had also had major surgery for epilepsy-right temporal lobectomy-that's right - he had a fist size portion of his brain removed. :o

We also lived in a hundred year old money pit of a house-which we had to sell with just enough money left over to buy a trailer.

All that being said. I sometimes wonder if I needed 24 months of constant everyday high dose antibiotics (including IV).
What abruptly ended my treatment for Lyme was the fact my Disability was cut off-so there was no longer any funds available for out of pocket expenses. I have a feeling if I had not run out of money- I would still be in treatment with an LLMD!

I do think my time with an LLMD was worth it, but I'm glad it's over.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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

Post by Spanky » Tue 27 Jul 2010 6:37

"Cobwebby":

I do think my time with an LLMD was worth it, but I'm glad it's over.
I think that people who are ill and scared and suffering are very vulnerable. Looking back on when I was finally diagnosed and became slowly aware of what had been happening...how far behind I now was...I was very anxious to try to make up the lost time...very dependent on the advice of those who were more experienced...those that had gone before. They told me I absolutely had to see an "LLMD".

Now...I think that you can certainly say that you got better while under the care of an "LLMD"...but can you really, safely say that the care of the "LLMD" was the cause of your getting better? I'm not at all sure that you can. No one individual can. All they can say is that I got better and here is what I did.

But what we are talking about now, here, really isn't that same, exact question.

The more direct question that we are talking about is whether you can get better WITHOUT an "LLMD".

And the answer, there...is...yes. I am living proof of that. And that sort of hauls all the other 'advice' into question, doesn't it? And I can answer that one, very definitely. Yes. It can be done. And like I say, for far, far less expense than what some of these reports indicate people are paying. (Or being outright gouged for. Depends on your perspective).

I can't say what the cause of my getting better was, either...but I KNOW it was NOT from being treated by an "LLMD".

I am very sorry to hear how very difficult things have been for you. I think this is part of why some of us get so...angry and frustrated with the lack of focus and misdirection of the self-proclaimed "leadership".

Instead of playing "footsie" under the table with the "LLMD"s who, by all conservative estimates, are grossing several million per year...why aren't they trying to help patients deal with some of these issues? For godssakes...they even have the nerve to ask the patients who paid these guys' hideously inflated bills in the first place to turn around and then bail them out.

Why aren't they focused on research instead of politics and indulging their imaginary antitrust adventure/fantasies? Why aren't they just simply trying to help patients instead of cozying up to doctors all the damn time?

What do you think could have been done with just the $1,000,000 spent on Jones' endless soap opera defense? What about all the people who just some of those resources could have helped? Just to help pay their bills...even temporarily. The focus just isn't on the patient.

I guess that I sort of understand that there is some sort of half-witted, half-assed assumption, guess, value judgment, that access to these magical, mystical "LLMD"s is necessary if patients are to get better.

But the importance of what I am saying here...is that you can get better without them. And not windup broke. You don't need them.

So...if that's the underlying political judgment, assumption, that the leadership is basing their...whatever it is that they do...upon...

...it ain't right.

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

There were some things that happened to me, too, Cobby, that I would rather not dwell on in the past few years...and not all directly Lyme-related, either. A lot of "stuff" hit the fan. My Dad said that I was "being tested". Tested? For what, exactly? I guess he meant well...but that sort of homespun, cracker barrel, folk wisdom sort of p***es me off, to tell you the truth. Too simplistic. By half. 'Bad stuff happens to good people, sometimes'. 'What don't kill you...makes you stronger', etc, etc...(I don't mean me, that I am a good person...I am a bad, BAD man). :lol:

Well, we are survivors, though...ain't we? Can't take that away from us, huh? ;)

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

Post by Cobwebby » Tue 27 Jul 2010 16:36

Spanky "I can't say what the cause of my getting better was, either...but I KNOW it was NOT from being treated by an "LLMD"."

But were you still treated with multiple high dose antibiotics? What was your treatment protocol?

When I was out on disability I was doing some volunteer work (just to keep my sense of worth up) and a woman in the office talked about her husband having Lyme Disease, but he had found a sympathetic regular doctor covered by insurance if I was interested. I was interested-but too scared to switch at that point.

A year later , after I was back at work with symptoms under control, I saw this woman and inquired about her husband. Her face darkened and she said they had just made an emergency run to the ER. He was no better and suffering . At that point I was grateful that I had gone to an LLMD.

Meanwhile- totally off topic-but maybe not- I experienced a freudian slip when signing in here.
Some of the letters on my keypad are worn off- can't see them. And I kept signing in as Sobwebby. :?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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

Post by Spanky » Tue 27 Jul 2010 17:22

"Cobwebby":

But were you still treated with multiple high dose antibiotics? What was your treatment protocol?
21 days of 100 mg x 2 doxycyline, of course...(it's like the "ante" in a poker game)...then, very similar to Martian...the 'Doc Sam I Am Plan'...Donta's deal...for about ten months. (And the beauty of that, as Martian noted, Donta is different than the other "LLMD"s as he backs up his treatment with a published paper, clinical study...and I also would add my two cents worth of praise for Dr. Sam).

(I think I did some other stuff for a little while afterwards, very short-term... I think, I forget). Long time ago now. All orals.

So, yeah, I did far more than what the IDSA Guidelines suggest. Depends on what you mean by "high dose", though...and I still say that the Guidelines do NOT prohibit that practice in individual cases. No one is going to bust my guy's chops for that. Diagnosis was delayed in my situation by several years. And this was documented. And I was a freakin' mess...(I am sometimes just amazed at these people who claim they have had this thing for twenty or thirty years...what do they think this is, that we are talking about)?

But all orals and through a regular MD. Whether the additional Dr. Sam stuff did me any additional good or not...I dunno. I have my doubts about that, really. (Still have the taste of that Biaxin c**p in my mouth). :D

But after awhile, you just realize that nothing new is happening. You're not going forward anymore. There was a feeling I had...a very weird feeling, that I associated with the "active' phase...sort of "vibrating"...and I had a very painful and swollen right testicle, too...

And that is when I asked to be tested for thyroid antibodies. I took myself off the abx. And the thyroid...that seems to have just made a huge difference. I even had a very hoarse voice...sounded like Don Corleone...and bam...as soon as the thyroid stuff hit...voice back to normal. And after the dosage was properly adjusted, my leg weakness resolved and I could exercise again. And that is just so important.

So...the lesson I got from that...was that it is entirely possible that what I thought were symptoms of "chronic Lyme" was actually an autoimmune reaction. Did the Lyme cause it? Well, who knows? But we are pretty damn sure I had Lyme. And I didn't have the thyroid trouble before.

And...if the patient is going to absolutely INSIST that they are suffering from a continuing, relapsing infection and completely close their minds to other possibilities...then they will, perhaps, never get the proper treatment...and be stuck in wellness limbo forever...while draining financially.

I am NOT suggesting that all cases of PLS or "chronic Lyme" are due to Lyme-induced hypothyroidism.

But what I am suggesting...is that Lyme patients keep an OPEN MIND as to all possibilities.

I am pretty much symptom free these days. All I take is the thyroid stuff. Looking back on it...it seems as though there are these "flares", hiccups, if you will.

And they do, over time, both gradually diminish in frequency and severity.

What drives them, though...ah, that is the question...
------------------------------------------------------------------------

PS. And I still have my gall bladder, too.

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

Post by Cobwebby » Tue 27 Jul 2010 18:21

Before I forget- I still have my gallbladder, too-gallstones and all with a few kidney stones lurking around but asymptomatic-only shows on ultra sound or CT or what ever they do .

By High Dose- I mean when the pharmacist comments that he has NEVER seen a dose written for that much, nowhere is it listed in his pharmacology reference, and insurance requires a consult with the LLMD before paying.

At my last visit with LLMD she said we never really know if the Bb is gone. I'm pretending that it really is. Meanwhile I deal with other issues-

thyroid. I was hypo before treatment, but the diagnosis was upgraded to Hashimotos while in treatment.Followed by endocrinologist.effectively medicated

heart, followed by cardiologist for arrthymias, medicated, but refuse some procedure called ablation(?).

arthritis, followed by orthopedic doc-who maintains that everyone over a certain age has it-some more than others

IC, followed by urologist, medicated, no citric acid in diet

IBS, followed by gastroenterologist( real jackass)- but at this point I have figured out that it is more of a gluten problem,no meds, simply diet.

seizure disorder, followed by neurologist, taking meds, diagnosed just before starting treatment for LD, don't think I was really having seizures-but I like the mood stabalizing effects of meds.

What is gone gone gone- for which I am most thankful is what I call the Alzheimer Effect of Lyme Disease.
The scariest aspect for me. I do not think that issue would have been addressed effectively if not for an LLMD. That alone is priceless. :woohoo:
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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