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

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

Post by Spanky » Wed 28 Jul 2010 0:03

"Martian
This sure looks like taking your own single experience and "projecting" it at others.
Yes.

Exactly.

That's the whole point, as I believe I have said several times, now.

What this thread was intended to speak to is how we think about the disease and how we think about "curing" it...and how our own perceptions may alter the outcomes for good or bad.

And what I am saying...(a simple point)...is that our perceptions of the disease itself stem from our OWN experience with it...what we recognize in others' accounts as being authentic or ringing true is what we recognize as being similar to our own experience.

What I did NOT go on to say is that others' experiences may be different...as that I thought that was understood.

It was just an aside...I meant that when I read people saying that...I don't understand how that could be as it seems to me that Lyme disease is so much more sudden and severe...which is understandable isn't it? Trying to explain my own perception of the disease, and what I would think is an obvious point: we all see the things from the filter of our own experience.

No insult or inference was intended, okay? I am pretty sure that I know what I meant.

I also said this...did you notice this, please?
Not saying that it's not possible...just saying that it doesn't fit with what I, myself, experienced.
Nevermind...
Last edited by Spanky on Wed 28 Jul 2010 1:01, edited 1 time in total.

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

Post by Cobwebby » Wed 28 Jul 2010 0:06

You know what I think, Spanky?
I think you should count your blessings that treatment didn't put you in the hole .
You are one lucky Bad Bad Man ;)

edited by Cobwebby to add another "Bad" :lol:
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Wed 28 Jul 2010 0:16

"Cobwebby":

I think if I had stayed with mainstream doctors they would have me being treated for Alzheimers now.
Okay?

And that's what? A guess? A hunch? a suspicion? A belief?

What would you call that? You see my point? What's the basis for that?

All I am saying is that I seem to be fine. Without any of that whole LLMD stuff. And yes, that is subjective, entirely. Maybe tomorrow I will suddenly relapse or die or something.

But the point of the thread, as it was titled, was to compare the relative merits of "LLMD" verus non-LLMD...and especially COST.

Simply, does the expense of the LLMD produce better results?

I don't know... I am ONLY asking the QUESTION. I am saying, hey, look at my case...at least think about it...

But, obviously, I personally tend to doubt it...whether the LLMD route produces such dramatically better results that it is worth the cost.
Last edited by Spanky on Wed 28 Jul 2010 0:55, edited 3 times in total.

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

Post by Spanky » Wed 28 Jul 2010 0:36

"Cobwebby":
You know what I think, Spanky?
I think you should count your blessings that treatment didn't put you in the hole .
You mean "in a hole" financially speaking...or healthwise...or both?

Well, my decisions as a patient might have had something to do with that, too. There was, actually, at the time, someone out in the western 'burbs here who slapped an iv in people right and left, or so I heard. I went so far as to get her application forms and decided that her act wasn't for me. A lot of it has to do with personal philosophy, I think. I realize some people are, well, let's say, more open to experimentation than I? If you can't show me a study of how this works...and test results that I need it...then I won't do it.

I want as few meds as possible.

But remember the LDF?

I spoke with someone there early on, who was very kind to me and gave me some good advice, I think. But if you remember Karen Forschner's book, it even suggests working with your GP, as opposed to the whole "LLMD" thing.

The LDA, has, I guess, out-organized them. That don't make the LDA right, though. Just better political operatives.

In any event, yeah, I had good health insurance coverage at the time. Lost it, though.
You are one lucky Bad Bad Man ;)

edited by Cobwebby to add another "Bad" :lol:
:lol: You know it! Guilty on all counts...lucky...and very bad.*

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

*This may be why I never had any problems with urinary/kidney stuff. Probably completely pickled the suckers a long time ago by constantly soaking them in alcohol. :D

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

Post by Cobwebby » Wed 28 Jul 2010 2:26

You mean "in a hole" financially speaking...or healthwise...or both?

I mean in THE same hole financially as LD patients who had to pay out of pocket.

Actually , if your GP treated you successfully for Lyme Disease , doesn't that make him a Lyme Literate Medical Doctor, too? Was he an LLMD who took insurance.? Did he treat according to the IDSA guidelines?

Have you been able to pass his name along to other Lyme Patients who need treatment?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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

Post by Spanky » Wed 28 Jul 2010 3:14

"Cobwebby":

I mean in THE same hole financially as LD patients who had to pay out of pocket.
I really didn't have much choice at the time. It was just the best I could arrange. I probably would have gone the LLMD thing if I could have. I just couldn't. I vaguely remember talking to Liegner's office. Thinking about flying out there. It wasn't possible. You know, I remember this feeling that, well, what if you don't do it...and that was what you needed? You feel like if you don't do everything possible...you're gonna die or something...
Actually , if your GP treated you successfully for Lyme Disease , doesn't that make him a Lyme Literate Medical Doctor, too?
:lol:

I will have to ask him. Something tells me...uh...no. Not a tag he would probably much appreciate. Those guys may be more conservative than lawyers, even.

I know he has gone to the books on Lyme on my account. And that is, well, I respect and appreciate that. They make their bucks on volume, to some extent, and taking the time to do research on just one patient?...that cuts into that. I was also under his care for the two years when I was undiagnosed, though, too...but I don't blame him or anyone else for that...or that it could have been easily prevented if they had just given me doxy when they took the tick off. It didn't happen, that's all...and around here, at that time...they probably should not have suspected, either. I understand that.

Was he an LLMD who took insurance.? Did he treat according to the IDSA guidelines?
All of my medical adventures took place within an integrated hospital network that is big in this area. Very, very mainstream and well-respected. My doc is affiliated with that chain. Yes, he treated according to IDSA Guidelines. Yes, insurance paid.
Have you been able to pass his name along to other Lyme Patients who need treatment?
No, I like him. He's a good guy... but unlucky. He has me as a patient. He doesn't need any more of that. No one deserves that. My guess is that he would be perfectly happy if he never, ever sees another case of Lyme. But I give him huge credit for having the professional courage and integrity to "call it". Make the initial diagnosis.

But in all seriousness, I think that he now has some appreciation, having seen me go through all of this, of how severe "PLS" can actually be...and I take some satisfaction in that. He knows how serious it can be.

And that, may, down the road, help someone else.

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

Post by Spanky » Wed 28 Jul 2010 14:38

"Spanky":

But if you remember Karen Forschner's book, it even suggests working with your GP, as opposed to the whole "LLMD" thing.
From "Everything You Need to Know About Lyme Disease", Karen V. Forschner, (1997) @ p.74:
"No single medical specialist has the ideal training to handle a case of Lyme disease, but I recommend that you seek medical care from your family physician, internist or pediatrician. These experts are trained to take care of the whole body, and they are generally the individuals who know you and your full medical history best. Sometimes,your physician may recommend a consultation with a medical expert more familiar with Lyme disease, such as another internist, rheumatologist, or an infectious disease specialist".
I am not citing that to say that it is right or wrong...but only to remind some that the whole "LLMD" thing wasn't always the rule of all Lymeland...that the culture (or cult) of Lymenet seems to have now managed to make it.

Personally, I regard the term "LLMD" as a creature, creation, solely of Lymenet and the LDA. It has no meaning, relevance, outside of Lymenet, in my opinion. It is an absolutely meaningless term.

What I am wondering, is if maybe what I didn't do...what advice I didn't follow...what meds I didn't take...wasn't, ultimately more important than what I did do? Maybe less is more?

(And by the way...I also recall being advised to go to Columbia and get a scan done, too).

http://www.lymeneteurope.org/forum/view ... f=7&t=3135

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

Post by Cobwebby » Wed 28 Jul 2010 16:28

Would love to see a discussion of this on Lyme Disease network. I think you would find that quite a few fall in between the extremes of the poster you cited and your experience. 50,000 to 1,000.

This is not a black or white issue- there are many many shades of grey-mine being one of them, Mins being one of them, don't know if the call to LLMDs is as pronounced in Europe.

I did the best I could at the time in making my decisions. I went to an LLMD until I decided I had had enough- of the financial drain, and load of antibiotics I was taking.

I think it is interesting that in my case- the on going deteriortion of my bladder was the first indication to me that things were still not right after PCP stopped treating (according to IDSA guidelines)-so here I am three years later on long term antibiotics for recurrent bladder infections, prescribed by a urologist.
In other words- I think my urologist is treating me for symptoms of persistent lyme disease whether she knows it or not. Doesn't matter to me- insurance covers it as long as the label Lyme Disease is not attached.
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 » Wed 28 Jul 2010 17:08

"Cobwebby":
Doesn't matter to me- insurance covers it as long as the label Lyme Disease is not attached.
Yeah. No joke. Absolutely. And like I said, I give my guy credit for standing up to this muckety-muck ID and diagnosing it...but I wish it didn't have to go into my records. Once that happens...well, you know...

And I tried to see if I could get a private health insurance policy recently, since I feel like I've turned the corner...took them all of two days to reject me. Why? Reasons: 'tachycardia, previous diagnosis of Lyme disease'.

But if you do work through your family doc, there is probably a much better chance that you will be covered.

I would get shipped off to various specialists...and go through this really assinine song-n-dance cross-examination trying to keep the word "Lyme" out of the discussion:
-------------------------------------------------------------------------------------------------------
Doc Specialist: "Okay, Mr. Spanky M. Badman, why are we here today"?

S: Well, I assume you're here because you work here. At least, I hope you do. I am here because Dr.----- told me to come here.

Doc: (Looking irritated) Yeeeesssss...I mean, what is it we are here for?

S: I was hoping that you would know that.

Doc: Why did Dr.-----send you here to talk to me?

S: You would have to ask him. He just told me to come here.

Doc: And what is Dr. ----'s diagnosis?

S: Can't I just ask you what you think?

Doc: I want to hear what Dr.------ thinks.

S: Ugh...(barely audible) Lyme disease. He thinks I may have Lyme disease.
---------------------------------------------------------------------------------------- :lol:

Also...I happened to hear someone has apparently accused me of playing doctor in this thread. (Or so I hear).

No. I am NOT suggesting that ANYONE do as I did. NO, NO, NO.

I was merely trying to use myself as a guinea pig, an example...and ask Q-U-E-S-T-I-O-N-S. And I was saying, that as BAD as I was...I seemed to have made a near full recovery with very conservative, minimal treatment.

And I think that is something worth thinking about.

I don't know the answers. I don't even know if I am asking the right questions.

PLEASE...NOT meant to be taken as personal advice.
Last edited by Spanky on Wed 28 Jul 2010 22:22, edited 2 times in total.

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

Post by Martian » Wed 28 Jul 2010 21:36

Source: http://www.lymeappeal.org/
Appeal Progress

The current appeal is attempting to raise £28000 towards the cost of Lyme Disease and co-infection treatment for Ria Heslop.

This appeal was launched on 01/05/2009 and we have raised £7246.

Details and conditions of this appeal can be found here.

Sincere thanks go out to all those who have so generously donated money and those that have organised and assisted with the fund raising incentive.

Source: http://www.lymeappeal.org/Appeal.aspx
The Appeal

By way of request from her family and friends, this appeal fund has been set up primarily to help raise funds towards Ria’s treatment of Lyme Disease and associated co-infections. It has become necessary for her to become self sufficient in this respect due to the decision made by the NHS North East Essex PCT to withdraw her funding during 2007.

Due to the fact that Ria has become disabled as a result of this terrible disease and, finding herself in a position of being unable to work, she has had no choice but to self fund her interim care in order to keep her physical condition from further deteriorating. She has now reached a point however where this maintenance programme is no longer an option due to the disease progressing neurologically. It is vitally important therefore that she now begins immediate and intensive IV treatment as directed by her Infectious Disease Board Certified Consultant at the Jemsek Specialty Clinic and overseen by her UK Lyme-literate consultant otherwise irreversible damage will undoubtedly follow. Examples of these devastating consequences can be seen in many other Late Stage Lyme Disease patients who have been misdiagnosed, left or simply ignored.

As Ria is not the first patient to find herself placed in this unjustifiable position, and she certainly won’t be the last, it is her explicit wish and request that this funding incentive should eventually be used to help and support the increasing number of other Lyme patients who find themselves in a similar position. Once well enough Ria intends to continue fundraising, increasing awareness and fighting the UK authorities until proper recognition and treatment of this debilitating disease is firmly in place. She says "other patients should not be left to suffer in the same way as me".

Maybe we should start a thread where all Lyme patients are invited to post their bank account number so people who would like to donate money to Lyme patients can simply pick a few from that thread.

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