The ILADS website

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
tosho
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Re: The ILADS website

Post by tosho » Sun 27 Nov 2011 19:42

I find this part of the discussion interesting.
Henry, what about this study? Could you comment? There is an intracellular infection mentioned. Thanks.

http://www.ncbi.nlm.nih.gov/pubmed/21033577

Bagge
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Re: The ILADS website

Post by Bagge » Sun 27 Nov 2011 19:56

Carina wrote:Spanky wrote:
This guy proceeds to want to dispute and argue the diagnosis. But the interesting thing to me...still...was that he seemed to want to attack it on the basis that it was ME who was saying I had Lyme...and not the three doctors who consulted on the diagnosis. The impression I got, was one of tangible hostitlity to the diagnosis...and unfortunately, that winds up on my back, you see... so you do have to wonder where they get an attitude like that...
Exactly!

And this was what Hendry also did with my diagnose.

If Henry, disagree with my physician, he should not discuss it or argue with me, and try to diagnose ME with something else.

And, since I already know that my physician has given me the correct diagnosis (I actually DO suffer from chronic Lyme), the only thing I ask for, is good info for physicians! Info that a physician can not find in IDSA:s guidelines!
Pardon me for getting a bit off-topic here, but Carina, you are posting online for advice and opinions of others. It seems when you do not get the answer that you want to hear, you are attacking the sender. I do not see Henry as exhibiting "tangible hostility", seriously.

Honestly, given the way Henry writes I would conclude that he is not the average Lyme patient. He has been very kind to start posting here and has very patiently explained several important items.

Regardless of how ill anyone is, when people use the emotional equivalent of a baseball bat in approaching (online or elsewhere) those that are trying to help, then they shouldn't expect much resolution.

X-member
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Re: The ILADS website

Post by X-member » Sun 27 Nov 2011 20:07

Ok Bagge, you are right!

But if someone say "don't do this" and don't understand that there is people that actually could die, if they follow the advice, I react!

Henry
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Re: The ILADS website

Post by Henry » Sun 27 Nov 2011 20:16

Tosho: Fibroblasts are neoplastic cells that have phagocytic properties; they are not normal cells. Since this was an in vitro study in which one could add Borrelia at a multiplicity of infection beyond what one would expect in vivo, I am not surprised at the results obtained. The findings that I cited were from in vivo studies in which infected non-human primates (monkeys) were used. In other studies, an attempt was made to infect the central nervous systems (CNS) of monkeys using large numbers of Borrelia. This was not possible to do unless the monkeys were immunosuppressed beforehand, i.e., given high doses of steroids. In so doing, large numbers of Borrelia then could be detected in the CNS. However, all were found to be extracellular and produced no obvious pathological damage to nerve tissue; none were intracellular. Of great interest was the fact that when the immunosuppressive drug was withdrawn, the numbers of Borrellia detected rapidly decline; the decline was coincident with a rapid increase in serum IgM antibody vs Borrelia. No antibiotic was given in these studies. Here, it was obvious that the natural host immune response plays a major role in eliminating the infection. Interesting results, don't you think? This work was done by Pachner and co-workers, and has been published, all except the last observation that was presented at a meeting, although it may have been published by this time.

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Re: The ILADS website

Post by X-member » Sun 27 Nov 2011 20:34

Bagge wrote:
Honestly, given the way Henry writes I would conclude that he is not the average Lyme patient.
Have Henry told us that he suffer from Lyme anywhere in this forum?

And if he do, why do he tell us not to trust ILADS. I understand his arguments, based on what HE think (or what HE claim) is right, but does this help anyone?

In my eyes this only create confusion!

Henry
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Re: The ILADS website

Post by Henry » Sun 27 Nov 2011 20:48

I am a trained microbiologist who has directed a rather large basic and clinical research program on Lyme disease. So, I am quite familiar with the controversy, the literature, and the scientific issues. One does not have to be a patient with Lyme disease to understand the science; that should not disqualify me from speaking out. I know MANY people who have been greatly harmed by LLMDs; they have told me their sad stories and are most grateful after finally getting the proper medical care that they deserved. It is in their behalf that I am speaking out. I have no personal interest in the matter -- or any thing else to gain.

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Re: The ILADS website

Post by X-member » Sun 27 Nov 2011 21:02

Henry, you are of course allowed to make your point, and you can be right in some cases.

I give you a study:

"Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease"

http://www.grin.com/en/e-book/166179/pr ... me-disease
Mean duration of symptoms was 9.5 years (range 1 - 40 years). The treatment was adapted to the individual case according to clinical response. Long term antibiotic therapy was initiated and patients were treated continuously for at least 6 months, in some cases several years of intermittent therapy was administered. About 38,8% of the patients experienced full remission of symptoms while about 56,7% reported a significant improvement, 5,6% of patients were deemed refractory to therapy.
If I understand this correct, 5,6 % (of those with PCR-confirmed, uncured Lyme) have no effect at all from treatment.

And, if someone have paid a "LLMD" a lot of money for "nothing" I understand that they are disappointed.

But, is this something that a "LLMD" (or ILADS) can be held responsible for?
Last edited by X-member on Sun 27 Nov 2011 21:27, edited 1 time in total.

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Post by X-member » Sun 27 Nov 2011 21:25

Henry, you wrote:
I know MANY people who have been greatly harmed by LLMDs
Is there any documentation on this?

It don't have to be "peer-reviewed"!

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Spanky
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Re: The ILADS website

Post by Spanky » Sun 27 Nov 2011 21:29

Bagge wrote:
He has been very kind to start posting here and has very patiently explained several important items.
I agree completely...and hope he continues, as long as he can stand it. ;)

And I hope that my reply was understood simply as my sort of "feedback" on what it's like to go through the Lyme diagnosis gauntlet as a patient. I was trying to give a small idea of what the emotional experience is like...why some feel so desperate...and turn to the LLMDs...simply because they are all that's out there.

I am learning a great deal from reading what Henry has to say, think it's great that he cares enough and takes the time to respond.

But maybe Henry can learn a little something along the way, by listening to us, too, maybe...hopefully?

Henry wrote:
So, I am quite familiar with the controversy, the literature, and the scientific issues. One does not have to be a patient with Lyme disease to understand the science; that should not disqualify me from speaking out.


Absolutely. And very glad to hear from you.

But please realize that a lot of these people are abused by both sides of this controversy.

I am, myself, I suppose, a case of Lyme that never should have been. I certainly shouldn't have been allowed to become late-stage. As I mentioned, the tick was removed from me by a physician...in a hospital...and I was under the care of physicians from that same hospital (very well-respected, all good doctors) all through my "Lyme journey". Nonetheless, no one even thought about that tick as a possible explanation for two full years.

And you do NOT want to know how bad you can get, undiagnosed and untreated for two years.

Henry
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Re: The ILADS website

Post by Henry » Sun 27 Nov 2011 21:31

Carina: You must understand that what the PCR test measures is only the presence of fragments of Borrelia DNA. It is not proof of active infection. Fragments of Borrelia DNA can persist in the tissues for years and has been detected in museum specimens, hundreds-- if not thousands-- of years old. Also, those who use PCR for diagnostic testing use a facility that is dedicated solely to the diagnosis of Borreliosis, This is necessary because although PCR is an elegant and sensitive procedure, it is subject to error due to contamination by extremely small amounts of extraneous bacterial DNA. Therefore, culture is the "gold standard" to confirm active infection and one must be skeptical of PCR results. If there is infection, obviously one should be PCR positive; however, PCR positivity does not necessarily mean active infection. The situation is a simple as that, which is why PCR tests are not used routinely for diagnosis.

Many had difficulty interpreting the results of Strobinger's published canine studies in which his infected dogs remained PCR positive for a long period of time after what should have been adequate antibiotic therapy. Some considered his findings to be proof of the need for extended antibiotic therapy to cure Lyme disease. However, none of his PCR positive dogs were culture positive. Most likely, he was detecting Borrelia DNA from dogs whose infection had been cured by antibiotic therapy.

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