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

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

Post by X-member » Sat 7 Aug 2010 18:54

I give you some Swedish info from the "Background information" in our Swedish recommendations for Lyme (written by a physician from Åland):

http://www.borrelia-tbe.se/media/borrel ... d_webb.pdf

I used Google translate with the translation (page 34):
Persistent symptoms longer than six months after a typically
adequate treatment, which can not be attributed to infection-related
injuries occur in 5-15% of patients (7).
The reasons for the continuing symptoms are not fully understood.
It can be persistent infection, a completely different disease
familiar or unfamiliar, irreparable damage or processes dependent
of autoimmunity or persistent cytokine production,
which together with the individual characteristics of the host or
the Lyme spirochete leads to the symptoms continued. Symptom persistens
has also been termed "post-Lyme syndrome" and
"Chronic Lyme borreliosis," expressions that should not be used.
And I agree with this!

We still don't have all the answers!

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

Post by Spanky » Sat 7 Aug 2010 19:12

"Carina":
I can not tell you what you suffer from! I have to believe in what you tell us.
I can't tell anyone else, either. That's the thing about Lyme. It's very difficult to say positively, one way or the other. All the blood tests show is possible exposure. But my doctors, to this day, think it was Lyme. From what I have been able to learn, I think they are most likely correct. In fact, I think if you examine all the events in my case in detail, it really gets difficult to argue otherwise.
But, lets say some other person with chronic Lyme (that have had Lyme 2 years before any treatment) have 10 months of "pretreatment", and then have the same "IDSA-treatment" that you have had, the might (I only say might) experience the same thing as you did.
I am really NOT trying to suggest that my experiences should be interpreted as broadly representative...of anything, or anyone, at all. All I was trying to speak to is how we think about the issues.

What I am saying...and ONLY saying...is that people who go online are told that they MUST have an "LLMD". I am just responding to THAT.

I didn't have an LLMD and seem to have gotten better, anyway. And I am not broke. I am not sure what "pretreatment" is. I don't understand the term. I had 14-21 days doxycycline followed by the Donta clarithromyacin and plaquenil thing for about ten months.

There used to be a poster here, and on other forums, who would routinely say that she got better after months of iv therapy. And I am just saying that I got better, too. Just without any iv therapy. And the expense.

So...take that for what it's worth...and honestly, in my own opinion, it isn't worth much. I think some are still missing the point.

But, if they didn't suffer from the "American" type of Lyme (BBss), and instead, suffer the most common borrelia type in chronic Lyme in Europe (B Afzelii), and they maybe have had it for more then 2 years before any treatment, they maybe don't have the same "success" as you had.
Yes. I have read that the Amercian form of Bbss is supposedly nastier. Whether this is true or not, I don't really know. But I think there are definite problems making comparisons between European and American cases, yes. I wouldn't try that.
And, I don't think that "waiting för 10 years after treatment, to recover" is any success, at all.
Okay...? Success is probably in the eye of the beholder, also. A relative term. And I am certainly not recommending this to anyone, as I have said, now, several times.

It's probably somewhat better than dying, though...
What do you think happend during those 10 months of pretreament? Did your immune defence maybe improve a lot? Do you have a good immune defence now?
What is meant by "pretreatment"?
I don't understand.

If you are talking about the time I was on the Donta thing...so far as I can remember, nothing happened that stands out. As I say, all I remember is that Biaxin tastes bad.
What did you suffer from during the ten years of "late recovery"? Some "auto immune" conditon?
I don't know. That's the BIG question.

Part of it was probably undiagnosed hypothyroidism. And yes, in my case, this is an autoimmune condition. Probably triggered by the initial infection. Thyroid therapy has really helped me. Recognizing the problem and getting appropriate treatment allowed me to be able to start exercising again. Very dramatic improvement. My voice returned almost immediately when the thyroid stuff started.

But if people's mindesets are closed, locked, into believing that the problem is persistent infection? Then, perhaps, they won't look for the cause of what their continuing distress really is? "Chronic Lyme" or PLS, could be different for different people? If what we are talking about are the after effects of infection?

What I think that I can safely say is that the biggest improvements in my case, (after the cessation of the shaking tremors), did NOT come from antibiotics.

See, the tremors DID, very noticeably, improve with antibiotics. They're gone. Completely.

So whatever I had, did seem, initially, to respond to antibiotics.

But as I have said, before, after awhile, I noticed no addtional improvement.

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

Post by X-member » Sat 7 Aug 2010 19:23

Spanky you wrote:
Yes. I have read that the Amercian form of Bbss is supposedly nastier. Whether this is true or not, I don't really know. But I think there are definite problems making comparisons between European and American cases, yes. I wouldn't try that.
Maybe it is: "The nastier, the easier to cure??"

I don't know, but if you compare the 3 most common Lyme types, you find that the most common cause of neuroborreliosis in Europe, B Garinii, is the Lyme type that is most sensitive to penicilline G (I don't know if they have tested other ABX), Borrelia Burgdorferi sensu stricto is 10 times harder to cure with penicilline G, and B Afzelii is 100 times harder to cure.

So, which one of the types are "the nastiest"?

And, why do IDSA use Swedish neuroborreliosis studies in their Guidelines? Those studies are, what i think, only ment to be used for early, and rather easy-to-cure B Garinii-neuroborreliosis.

They can not use those studies for the american type of neuroborreliosis.

And so on!

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

Post by Spanky » Sat 7 Aug 2010 19:32

I think that the point I was trying to make has been fairly widely misunderstood...it was simply to point out another pervasive Lymeland fallacy...that you MUST have an LLMD to get better.

Here. Look at the thing set up under rules of logical analysis:

Premise #1: All Lyme patients must have an LLMD in order to get better.

Premise#2: Spanky is a Lyme patient. Spanky did NOT have an LLMD. Spanky got better.
----------

Conclusion: Premise #1 is false.


That's it. That's all. That's the ONLY point.

NOT to do say, "okay, kids...try this one at home"...

(Well, and the $$$$ involved, too)...

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

Post by X-member » Sat 7 Aug 2010 19:42

Spanky, you wrote:
(Well, and the $$$$ involved, too)...
That why we don't need IDSA to tell all the experts in the world (and the insurance companies in USA) what to do.

It is better if we have good physicians (and other experts) that find out the correct facts (and how to do this), and do the right thing in every single case, instead.

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

Post by X-member » Sat 7 Aug 2010 19:47

Spanky, you wrote:
Premise #1: All Lyme patients must have an LLMD in order to get better.
That is not correct!

It should be: "All Lyme patients with chronic (= of long duration) Lyme probably need a more skilled physician, to maybe (with the treatment options that we have today) become better"

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

Post by Cobwebby » Sat 7 Aug 2010 19:51

What came across in your posts was:

Premise #1: Spanky is a Lyme patient. Spanky did NOT have an LLMD. Spanky got better.

Premise #2: All Lyme patients can get better without an LLMD.

Conclusion- If Spanky can do it , anyone can. :bonk:


Spanky wrote:I think that the point I was trying to make has been fairly widely misunderstood...it was simply to point out another pervasive Lymeland fallacy...that you MUST have an LLMD to get better.

Here. Look at the thing set up under rules of logical analysis:

Premise #1: All Lyme patients must have an LLMD in order to get better.

Premise#2: Spanky is a Lyme patient. Spanky did NOT have an LLMD. Spanky got better.
----------

Conclusion: Premise #1 is false.


That's it. That's all. That's the ONLY point.

NOT to do say, "okay, kids...try this one at home"...

(Well, and the $$$$ involved, too)...
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 » Sat 7 Aug 2010 20:04

"Carina":
That why we don't need IDSA to tell all the experts in the world (and the insurance companies in USA) what to do.
So far as I know, contrary to what is often said about this online, the IDSA really doesn't "tell all the experts in the world and the insurance companies in USA what to do".

They are, though, entitled to express an opinion on the subject.

It is up to others, though, whether they choose to agree or disagree with that opinion. What seems to be a problem for ILADS and some of its supporters is the prestige, acceptance, that the IDSA has...and the lack of respect, in turn, for the opinions of ILADS within the medical community as a whole. (And that's just not something that can be addressed, properly by antitrust litigation).

The IDSA Guidelines contain footnotes to studies conducted on whether antibiotics help people with PLS or "chronic Lyme".

The current state of scientific knowledge is that continued antibiotic therapy does not seem to provide additional benefit. Under those circumstances, the insurance companies are simply not going to pay. Nor should they. They are not in business to subsidize or pay for things that don't work...just because someone has read online that they MUST have this or that.

Now, it is, then, the burden of those who dispute those conclusions to come forward and produce their own persuasive evidence to the contrary.
It is better if we have good physicians (and other experts) that find out the correct facts (and how to do this), and do the right thing in every single case, instead.
I think that every patient's needs should be dealt with according to the needs of that individual patient. But based upon experience and knowledge...not guesswork, hunches and experimentation...and what we want to believe.

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

Post by Spanky » Sat 7 Aug 2010 20:05

"Cobwebby":What came across in your posts was:

Premise #1: Spanky is a Lyme patient. Spanky did NOT have an LLMD. Spanky got better.

Premise #2: All Lyme patients can get better without an LLMD.

Conclusion- If Spanky can do it , anyone can. :bonk:
Did I say that? Can you show me where?

Or is that the way you interpreted it?

Here, this is from earlier in the thread:
Spanky:

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".
Last edited by Spanky on Sat 7 Aug 2010 20:20, edited 1 time in total.

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

Post by X-member » Sat 7 Aug 2010 20:16

IDSA don't have any studies done on chronic active (=of long duration) Lyme, where they have used a good combination treatment, that have lasted long enough.

The most important thing with Lyme, is how long you have had it before treatment (it is less important where in the body it is situated), and which combination treatment it is that work best in that specific case.

And it is rather stupid to only use one type av ABX, since Lyme can change into both cystform and CWD/L-form.

And, is is very important to do studies on cases from the real world, and those cases could have immune deficiencies (primary or secondary), co-infections, reactivated infections, and so on.

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