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

For everything that is related to Lyme and/or Lymeland, but doesn't fit in the other forums. Speak your mind, connect, ask help, etc.
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Spanky
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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Thu 29 Jul 2010 16:32

"Cobwebby":

TEN YEARS to feel better! :o Holy Crab-Now I'm really glad that I went to an LLMD.
Why?

Seriously. What did it do for you? I don't know. You mean you got better faster? I thought you were saying that you still have problems? Are you saying that an "LLMD" can make you better, faster?

I stopped antibiotics years ago. Why? Because I had the distinct impression that they were not doing any good. I wasn't getting any better. I could tell, for awhile, that they were helping. The tremors stopped, for one thing. But after awhile, seems as though I just plateaued...got in a rut. Didn't go forward or backwards.

Yes. Ten years. Actually, though, twelve. I was bitten in '98. I was diagnosed in August, 2000. So, ten years since diagnosis.

But from what I've seen online, from people who have returned to normal, that's not all that unusual...seems to me. There seems to be this ten year window I have noticed.
What I mean by failed is- my PCP treated me according to the IDSA guidelines-yet I continued to get worse, the Bb continued to disseminate .
Okay...how, exactly, do you know that "Bb continued to disseminate"? You mean that your symptoms continued?
As one body system after another deteriorated-none of the mainstream specialists I was referred to was willing to address the issue of Lyme Disease with anything more than a shrug.

Well...here's why I am so interested in the perceptions questions...

Lyme patients are told that the cause of the illness is Bb.

And so, they get treatment for Bb...and their symptoms continue.

And so, they figure (perhaps logically) that the Bb must also be continuing to exist.

See, I am wondering if the simple mindset, expectation that if you kill the organism...then you should be better, is what is driving a lot of the controversy.

That's not necessarily true.

The continuing symptoms may have nothing whatever to do with a continuing presence of the Bb...but the body's continued reaction to the initial presence of Bb. So, the IDSA may have killed off the Bb...but you're still experiencing symptoms...which the IDSA admits as being entirely possible.

And if that is true, then throwing massive loads of antibiotics at it is a complete waste...and may even represent a danger to the patient...beyond the financial one.
The cost and benefit of my treatment by an LLMD were priceless.
That's my perception and I'm sticking to it. :D
Okay...?

We can stop here, then, I think...
Last edited by Spanky on Thu 29 Jul 2010 16:41, edited 1 time in total.

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

Post by Spanky » Thu 29 Jul 2010 16:39

"Carina":

3: Active Chronic Lyme that ABX work on
4: Active Chronic Lyme that ABX don't work very well on (maybe due to co-infections or perhaps due to that some borrelia types are resistant to Doxy or other ABX)

The problem, though, there, seems to me, is that you can't show a continuing antibody response in cases of "chronic Lyme" that have been studied.

So, in order to prove the existence of continuing Bb...you have to somehow account for the lack of a conventional antibody response, I would think.

Maybe the "cystic" form accounts for this?

But right now...as I understand it, that is not generally accepted as being true. The cystic form is not shown to have any clinical signifigance.

So, treating people as if it were, in fact, proven...well, that's either experimentation, or just guessing.

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

Post by X-member » Thu 29 Jul 2010 16:57

Hi Spanky!

I have a microscope, and I can see both the spirochetes, granules and the cysts. I can see the cysts transform into spirochetes again!

Don't trust what IDSA claim!

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

Post by Spanky » Thu 29 Jul 2010 17:18

"Carina": Hi Spanky!
Hi, Carina.
I have a microscope, and I can see both the spirochetes, granules and the cysts. I can see the cysts transform into spirochetes again!
I don't and cannot seem them.

But I think that in order for the cystic form to be accepted...and its clinical role in Lyme disease...you need studies that show that.

And we don't currently have those.

But regardless, I think you probably also need to show continued antibody response...or...explain why it is lacking. If they are transforming into spirochetes again...why isn't there a traditional antibody response?
Don't trust what IDSA claim!
Okay. Taken under advisement. Duly noted.

But I would say, don't necessarily arbitrarily dismiss what they say, either.

Try to evaluate all points based upon available evidence...and not mere belief.

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

Post by X-member » Thu 29 Jul 2010 17:42

There are good studies on cystform! Brorson, Miklossy (I hope I remember the last name right).

I don't know everything about antibiodies, but a very important thing, is to use the right "ground" in the test.

And, I think that antibiodies change during the disease, and then the tests made for early Lyme don't detect the antibodies for late Lyme.

There is also immuno deficiences (like mine) that could explain why your body don't "produce any, or only small amount of antibiodies.

And, I think that CWD/L-form don't "tease" the immune defence to produce antibiodies.


I have asked a skilled person at a big hospital in Sweden about this, and he say, that it is impossible (at least today) to make one single test that find all persons with Lyme.

Brorson say: That a bad test maybe only detect 20% of the cases, while a good test maybe detect 80% of the cases!

Don't trust what IDSA claim!

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

Post by X-member » Thu 29 Jul 2010 18:07

I have to add:

If your body have made antibodies in the beginning of the disease, those antibodies are probably gone in a few years.

Antibodies don't "last forever"!

So, if you have had the disease for ten or more years (like me), you can't expect that a test made to (only) detect antibodies for early Lyme, still will find the same antibodies after 10 years.

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

Post by Spanky » Thu 29 Jul 2010 18:08

"Carina":
There are good studies on cystform! Brorson, Miklossy (I hope I remember the last name right).
Yes, thanks. And I have been previously aware of the Brorsons work and even previously discussed its implications with my doctors. Seen the pictures, too.

And I think there are even studies that have shown the presence of the cystic form in human tissue. And one that I have mentioned here, where the form was induced in the lab, in tonsillar tissue.

But what signifigance does it have? What does it mean in terms of the clinical course of Lyme disease?

Right now, as I understand it, no one can really say with certainty.
I don't know everything about antibiodies, but a very important thing, is to use the right "ground" in the test.

And, I think that antibiodies change during the disease, and then the tests made for early Lyme don't detect the antibodies for late Lyme.
Well, what I am thinking of, there, in mentioning that, are studies done on claimed cases of "chronic Lyme"...cases similar to mine, I guess, where symptoms continued after treatment.

And these, as I understand it, tend to indicate a lack of continuing active antibody response. And if the organism is still alive and active...you should get one...or...there is some other, currently not understood explanation. (My understanding is that antibody responses may be "remembered" for some length of time, but will eventually fade).

I am talking about what it is going to take, eventually, to get the scientific/medical community as a consensus opinion, to accept the concept of 'chronic Lyme'.

I really don't think that you have that, right now. You don't have the "smoking gun" convincing evidence that you need...and so, what you get is a seemingly endless repetition of the same tired arguments.

And that's all they are: arguments.
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Re: LLMD--is it worth it? Cost/benefit of Lyme treatment?

Post by Spanky » Thu 29 Jul 2010 18:13

"Carina":

I
have to add:

If your body have made antibodies in the beginning of the disease, those antibodies are probably gone in a few years.

Antibodies don't "last forever"!

So, if you have had the disease for ten or more years (like me), you can't expect that a test made to (only) detect antibodies for early Lyme, still will find the same antibodies after 10 years.

Yes. (And I just posted the same thought in reply).

I was tested several times during the "active' phase. Three times. And three times the screens were positive. The blots? Depends on how you interpret them...but never completely positive by CDC surveillance standards. (Missed by one).

Years later, I was tested again...nothing. No trace whatever. Completely negative.

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

Post by X-member » Thu 29 Jul 2010 18:15

Spanky, you wrote:
"I am talking about what it is going to take, eventually, to get the scientific/medical community as a consensus opinion, to accept the concept of 'chronic Lyme'."
Maybe they (we) have to use methods for "direct detetion" of the bacteria, like microscope or PCR/DNA?

It is not difficult to find and recognise the bacteria in the blood (using a darkfield microscope):

http://www.youtube.com/watch?v=AiwRTu9zg5k

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

Post by Spanky » Thu 29 Jul 2010 18:24

"
Carina":

Maybe they (we) have to use methods for "direct detetion" of the bacteria, like microscope or PCR/DNA?

It is not difficult to find and recognise the bacteria in the blood (using a darkfield microscope):
Not something I feel comfortable talking about. I have no idea.

I am just saying that what is currently lacking is evidence that the scientific/medical community as a whole is willing to accept. And that's kind of up to them what the nature of that evidence is...I'm not part of that community (at all)...so I really don't have an opinion on that.

But even if some organisms, Bb, do survive conventional treatment, I think that you would still have to show how these organisms can then drive symptoms...and not just assume that they do.

And if the spirochetes go into an active, motile state that's causing disease...then they should be producing an IgM antibody response, right?

And see, they don't seem to be...so...?

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