Bullying Borrelia

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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Muscle Car55
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Re: Bullying Borrelia

Post by Muscle Car55 » Sun 27 Jan 2013 16:11

Claudia wrote: I really appreciate that Henry has posted on this forum and has engaged in conversation with me and tried to answer some of my direct questions, and the questions of others. I think he has managed to be relatively polite despite some antagonism directed towards him, too. This is an open internet forum. There is certainly a lot of medical and political controversy surrounding Lyme disease, so differing views are to be expected in an uncensored forum, right? I would much rather read the thoughts and opinions here, no matter how much I might not like or agree with them, from somebody who has an educational and professional background in the topics discussed on LNE, even if I don't know what everyone's "story" is. Henry has previously stated why he has been on this forum, and again, I have appreciated it.
I'm very sorry if I came off aggressive. But dealing with the medical first hand, and going through what we go through, just trying to get my point across. I feel the Internet is the last left uncensorship we have. We all know how the topic isn't talked about on the television at all.

And I totally get the atmosphere of the forum.

I threw out there what I thought, without being too harsh, I guess I was a bit. I'm just trying to understand the way he thinks. All I'm asking is why he's so concerned with the topic and why he's on the forums?

I'm not trying to get him booted or anything of such.
Claudia wrote: I think he has managed to be relatively polite
If you say so.


Well aware of how hard it can be to manage a phpbb/vbulletin forum, have done it in the past many times. I will tone it down sorry...

TicksSuck
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Re: Bullying Borrelia

Post by TicksSuck » Sun 27 Jan 2013 18:25

Claudia wrote:Henry has previously stated why he has been on this forum, and again, I have appreciated it.
Hi Claudia,

Is this it, or is there more covering that subject that I have missed? http://www.lymeneteurope.org/forum/view ... ere#p26083

I was wondering too about the reasons some participate in this forum. I appreciate their participation nonetheless. In the case of Henry, he seems to bring some valid arguments, some "expert" opinions, and leave a lot of questions unanswered when he doesn't like where conversations are going.

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Muscle Car55
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Re: Bullying Borrelia

Post by Muscle Car55 » Sun 27 Jan 2013 18:41

hv808ct wrote:
This is what scientists complain about when confronted online by people with ‘Google PhDs’ and ‘Master’s degrees in Wikipedia’. More precisely, this is what Kruger and Dunning discovered in their 1999 study of students’ perceptions of their own abilities, and published as: “Unskilled and Unaware of it: how difficulties in recognizing one’s own incompetence lead to inflated self-assessments.”

Just because something is accessible does not mean it is comprehensible or accurate. The Internet contains a huge amount of “information”. But much of that information is in the form of rumor, myth, fantasy, conspiracy theory, lie, propaganda, insult, misinformation, disinformation, factual error, deception, and omission; all of it placed online by amateurs, activists, pundits, kooks, propagandists, conspiracy nuts, vandals, kids, crooks, con artists, cranks, and Wikipedia contributors masquerading as credentialed experts. It’s a morass of digital white noise, parts of which can only be navigated by persons with some degree of prior knowledge about a particular subject.

I suspect that Lorima—like many other “intelligent lay people”—assumes he/she actually is entitled to an opinion about various complex scientific, medical or technical subjects. Politicians and preachers do it all the time. Sorry, you’re not. You’re not entitled to opinions about the Higg’s boson, Mars rovers, the epidemiology of tick-borne viruses in North America, climate change, primate evolution or anything else. That’s for real experts who took the time and effort to become experts. You don’t get to dispute facts unless you are capable of generating alternative interpretations or additional facts, and that requires going through all of the trouble of actually learning, studying, experimenting, collaborating, etc.
hv808ct,

Everything you wrote is true to a point. There's a lot of misinformation and disinformation out there on the Internet, lot of it is garbage.

But when you tell me that Lorima can't dispute facts unless you are an expert is wrong!

I went through 10+ doctors, I wrote down all my symptoms for them. Not one of them mentioned or hinted to lyme, all had PHDs.

Over the months being infected I did my own research online leading to candida and parasites time and time again. I knew the candida topic is quite embellished along with parasites. But this research led me to finding symptoms related to Lyme disease, it wasn't until I match my symptoms up canlyme.com Then saw ID disease doctor.

Are you still with me? Well when I told the ID doctor I think I have Lyme. She said it's very rare and I doubt you have it. She did the lyme test anyways, it came back negative. But then did parvovirus test came back positive. She said that's what's causing arthritis in my hands and ankles, within a few months it will just pass. Well after her assessment something I thought doesn't fit right, I did my own research on the Internet and "understood" how the lyme ELIZA test isn't accurate and how the bacteria can lower the immune system for older viruses in your body such as Parvo.

I confronted the ID doctor about it, even broke it down for her in "layman's terms" for a PHD certified infectious disease doctor, she said the lyme tests are not inaccurate and then I just have parvo. I immediately told her going to get a second opinion.

She should know that parvo isn't common for adult like me and that something is lowering my immune system for the virus to surface. It's honestly not that hard to understand, I explained it to her, yet she just didn't want to listen.

So my point is hv808ct, if I hadn't made my decision for myself that she was wrong and decided to get a second opinion through a LLMD with a much better test, I would be in a heap of trouble right now!!!!!

This is all due to the internet information that you claim a person not an expert in a field can handle.

I mean no doubt, for the most part the expert in whatever field is probably going to be right 80% of the time compared to average joe. But when you say "You’re not entitled to opinions about the Higg’s boson, Mars rovers, the epidemiology of tick-borne viruses in North America, climate change, primate evolution or anything else."

I think you're wrong there, mainly because other elements could involve such as money and greed persuay "experts" in a field. Anyone has a right to question politicians, doctors, for these reasons. And this is one of the reasons these experts get caught, by average joes...

Not enough for you? Frontline did a special on Wall Street bankers. Not one banker has gone to jail after the economic crisis. Lanny Breuer said there is no foul play and greed is not against the law. After the documentary Lanny Breuer stepped down from office. Just a coincidence? Or is it because some average joe exposed the corruption that some expert from the FBI couldn't supposedly solve.
http://www.pbs.org/wgbh/pages/frontline/untouchables/

By the way these bankers were all so-called experts in their field!!!!

If someone hadn't questioned Hitler, an expert in his patriotic field, where would this world be now.

Questioning people of hierarchy has to be done hv808ct.

But not going to deny there's a lot of people trying to act like doctor. It's got to be annoying as hell for doctors, having people come in daily telling them what they read on the Internet. But hey that's what they get paid good money for and that's the the new technology age we live in, deal with it!!!

I got my degree in criminal justice and that's the field I work in, it's just filled with people mocking you, fighting you, harassing you etc... And yet we don't get paid shit!!! All these doctors are whining because they have to deal with patients now that question them because of the Internet, cry me a river! Improve your communication skills!!! Something I noticed some of these doctors don't have.

Most doctors are right about a lot of things, but the reason this topic is being brought up because doctors have failed miserably with Lyme and that's why we're talking about this "expert topic" plain and simple!!!!! There's no ifs ands or buts!!!!

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inmacdonald
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Re: Bullying Borrelia

Post by inmacdonald » Sun 27 Jan 2013 19:06

So let us return to "bullying" Which is where this thread all began........

There is bullying by unfounded [undocumented ] assertions
There is bullying by selective { filtration] - "cherry picking" of published literature.
There is bullying by impugning the character of the individual participants who offer posts on this forum.
There is Bullying by failure to read the primary sources in full text form and then exhorting broad brush
generalizations which do not fit with the original facts from the full text.
There is bullying by a nihilistic rejection of peer reviewed publications, based on the publishing house
which put the manuscript into Print or electronic form.
There is bullying by blanket denial of new concepts ( ie biofilms) - even before the manuscripts were
dually peer reviewed published [ Note: The Biofilm Thread which I initiated on this forum was the Number
one most read thread on this forum for year 2012)
There is bullying by "name dropping", such as referring to Dr Allen C. Steere MD as "Allen", with the intent
to convey to the reader that all written before and after the name dropping event,
conveys extra intellectual power to the correspondent by virtue of his/her "first name" relationship
with a published author.
There is bullying by verbal assaults on the presumed lack of advanced university degrees of
other correspondents- most recently the presumption that Lorima lacked a Doctoral level degree
and lifetime laboratory experience.
And ,my favorite, the "there is no such thing as" gambit This we have seen frequently on this forum
with contrary affirmative evidence produced to in fact prove " such a thing actally does exist"
This we have seen with:
Re: Bullying Borrelia
by tosho » January 22nd, 2013, 3:21 pm

inmacdonald wrote:
Recall that the German Borreliosis Society, an academic society of German physicians with
a membership diagnosing One Million New Cases of Lyme Borreliosis in the German State, [calendar year 2012]


One million new cases in Germany in one year? This is a completely unreliable information.
Which was followed by : [ in the original German with web links and maps also provided]

Link: http://www.lymeneteurope.org/forum/view ... =6&8t=4477..

--------------------
Germany  One Million.jpg
German One Million National LB MAp- english translation
Germany One Million.jpg (155.29 KiB) Viewed 1545 times
-------------------
German liinks one Million.jpg
German language links to One Million German LB cases paid for by insurance companies in 2012
German liinks one Million.jpg (22.97 KiB) Viewed 1545 times

________________________

Pseudonyms in place of authentic names might also be contrustrued as a form of bullying,
What do the members of this forum think about the intellectual veracity of the use of Code names?
Best to all
Alan B.MacDonald,MD
Jan27,2012

Bagge
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Re: Bullying Borrelia

Post by Bagge » Sun 27 Jan 2013 19:14

Muscle Car55 wrote:
Henry wrote:There is ample evidence that extended antibiotic therapy is not beneficial for the treatment of PTLDS and may even be unsafe. For those who disagree. the time is long overdue for them to present convincing peer-reviewed data in that regard from the published results of placebo-controlled studies, and/or present convincing evidence that the alternative treatments suggested in your tract indeed offer significant benefit. So far, all we have is biased testimony -- no scientific data. Furthermore, the clinical relevance of cysts forms and biofilms has NEVER been demonstrated or proved to be of ANY significance. They are just products of the imagination........... and often laboratory artifacts......
Henry wrote:without additional supporting data-- is a "leap of faith" and not reasonable.
Henry, I come across people like you in so many walks of life. Your thinking process, if you can't measure it does not exist. That way of thinking has really hurt humanity. I recently saw a biography on Einstein. At the time Einstein came up with the theory of relativity, there was no way to prove it. It was all up in his head, but yet they were German scientists that denounced him and bashed him for his theories.

And I'm sorry to say, I've seen the same thing with Dr. MacDonald and many other LLMDs.

You linked article saying that science is under attack. Suggesting that it's the IDSA we should have sympathy for.

Let me tell you something, I live in Michigan I went to 5+ major hospitals and not one of them tested for Lyme disease or even hinted to it. And when I finally got a doctor that suggests that this might be a tape on pathogen, test came up negative.

The medical system is making these mistakes time and time again, and you're linking to an article suggesting "their science" is under attack. Ummm, we're the ones under attack!

The truth is the medical system has failed with the disease in so many ways. Yet you're supporting them and suggesting that there is no way chronic Lyme could exist.
Henry wrote:Do people with cancer have greater knowledge of its cause and treatment than those who don't, but who study the disease and the evidence-based research connected with it?
I got a heavy-dose of amoxicillin for a month from my family doctor before I even knew what my problem was. He knew I was sick because I've been healthy all my life. This was before before I even had any really bad symptoms, all I had was headaches, runny nose and changes in vision. The month of amoxy didnt knock it out, like your article said it would.

10 months later when I developed arthritic symptoms I knew I had a serious problem on my hands and eventually got a diagnosis from a out of the network osteopath that sent my bloodwork Igenex.

Problem with you and many others is you're not going to believe anyone until you've experienced it firsthand.

You keep on saying there's no proof to show whether or not chronic Lyme exist. Well that statement can be twisted around against you as well, how can you say it doesn't when there's no foolproof 100% test that accurately measure active borellia in the body. Where is your evidence chronic lyme doesn't exist, IDSA has stated time and time again their test aren't 100% fool proof!!!

I definitely agree that the immune system causes a lot of symptoms of Lyme patients. But to say that there's absolutely no active infection somewhere in your body still setting the immune system off?????

I mean who knows what your story is and why you're on this forum to begin with, maybe you had Lyme disease you cured it really quick with month of antibiotics. So that's the way you think. And like David Letterman suggests, everyone else is a Lymenut.

Either way, don't you have something else to do, then ridicule people on this board time and time again that chronic Lyme disease doesn't exist.

I think anyone has the right if they want to use long-term antibiotics, just like anyone has a right to risk smoking or drinking. Those two drugs kill more than antibiotics I guarantee it. So there's something for you to do!!! Truthfully why do you even care, right? Why do you even care? Why are you on here?

Truthfully I know your type and I know there's no one on this earth probably could change your mind. I'm here to tell you that I think chronic Lyme could be autoimmune. See I try to look from both sides, not just one-sided point of view.

But from my own experience, a month of Amoxy didn't knock out my first stage of Lyme. I'm not going to risk not taking long-term antibiotics and put all my eggs in one easter basket saying that it's all autoimmune.

Time and time again I hear stories from people like Mandy Hughes from documentary under our skin, who gave IDSA doctors 10 years to treat their disease. The turnout wasn't good for them I'm not risking that. And guess what, supposedly she just gave a interview this past year saying that she's clear of all her Lyme symptoms after a year of IV antibiotics. I guess within that year, all her autoimmune symptoms just cleared up miraculously huh?

And I laugh at these stupid intricate arguments on whether or not there was 1 million or 700k people that had Lyme disease in Germany. Whether it was 700k or 1 million, what does it matter? The point is people are getting sick and the disease is getting worse. I love the people that just want to debunk everything that has to do this with disease.

The statistics are so far off within the US, now that I can see something arguing about. And yet I don't see people that debunk chronic Lyme, challenging those statistics!!!!

I quoted your entire comment because you deleted a quite telling one in the past. Do you still think your local pharmacies are conspiring and mixing up your medications, and intentionally giving you incorrect information about medications? What came of all that? Why did you delete those comments?

Claudia's response posted above is perhaps a bit more politically correct, but here's mine anyway.
Problem with you and many others is you're not going to believe anyone until you've experienced it firsthand.
You are either misunderstanding everything Henry and others before him have ever so patiently explained, or you are indeed turning up your nose to science. Scientists and physicians don't need to experience everything first hand, although granted, it would perhaps give some a bit more compassion towards the suffering of others. This would especially apply to rare diseases that are not easily diagnosed or those with symptoms not readily visible, the 'hidden illnesses'. It would also possibly give them more tolerance against patient-activists that do stupid human tricks - things like publicly accuse them of committing federal offenses without any apparent evidence.

Now, what does (not) need to happen is certain 'LLMDs' need to muster up enough support from people who either don't know better or refuse to learn, and then pit them against scientists and physicians who disagree with their opinions as to diagnostic and treatment protocols. If ILADS and those doctors under who allege they are being unfairly persecuted by the medical boards want to stay in business, they need to keep the masses dumbed down about the patient injustices they've committed. That's fairly easy. They can do that. It's always easier to get someone who is suffering from one thing or another and provoke them with misleading propaganda in order to stir hate, fear, controversy and doubt. On a lesser level, most people master this approach in kindergarten - "Your mommy is a .... and your daddy said ....., so I'm gonna .... you..... Na, na, na na, na!"

MuscleCar55 wrote:
Henry wrote:Do people with cancer have greater knowledge of its cause and treatment than those who don't, but who study the disease and the evidence-based research connected with it?
I got a heavy-dose of amoxicillin for a month from my family doctor before I even knew what my problem was. He knew I was sick because I've been healthy all my life. This was before before I even had any really bad symptoms, all I had was headaches, runny nose and changes in vision. The month of amoxy didnt knock it out, like your article said it would.
So to the people criticizing people like Henry and others, and that includes you Dr. Alan McDonald, think about the following questions.

An ILADS doctor of the past, or perhaps still a member, claims that wearing rainbow colored fingernail polish will boost your immune system or something about building T-cells or whatever. The reference is documented elsewhere on this forum. Try looking it up for yourself this time. Do you think it's appropriate, or even standard of care in the treatment of an infectious disease, for a licensed medical doctor practicing medicine in the United States (Washington state in case the FBI, medical boards or news outlets are reading this) to be telling patients that their choice of nail polish will have any significant effect upon their immune system? Yes, indeed, one can only hope that physician will come under 'persecution' from his respective medical board, and soon.

How about you Camp Other**? Do you paint your fingernails, or leave them natural? Would you suggest that low-income patients spend their money toward physician's fees and medical 'products', such as nail polish and similar treatments? The physician was featured in Under Our Skin, surely he must be good if he was in a "documentary" sanctioned by ILADS and their many Lyme disease associations, including the group out of Columbia Hospital. Muscle Car do we need to fund the NIH for a study on whether nail polish colors effect the immune system? What about Applied Kinesology? Some of the practitioners on the LDA's list practice it. Am I mistaken, or has science sufficiently evidenced that AK, thought-control and fingernail polish are effective medical treatments? All those who oppose these ideas surely must be uncaring, cruel and anti-science - not! Rather I suggest they are the respectable few with enough guts to stand up in defense of medicine, in defense of science.

Read the posts by Henry and the journal articles by others. All they want is some real evidence that is not presented by a bunch of quacks and activists. Many of whom seem to have difficulty distinguishing truth from fiction.

Grow up ILADS. Take some responsibility for your actions and your members. Try, as hard as it may be to act like ethical, honest medical professionals.

Would someone explain to me why a physician investigated and charged with taking kickbacks from a home infusion company and intentionally misdiagnosing patients with Lyme disease in order to receive such kickbacks is on the Lyme Disease Association list of referral practitioners? I thought they were supposed to be a patient advocacy and support organization. Who is really protecting who here?

How much chelation should one person receive? Where is the science on that MuscleCar55? Should you, like you assert to Henry, have to volunteer to receive a few good bleach enemas in order to know they are dangerous? By such assertions, only people who have had any particular disease are sufficiently qualified to to diagnose it, regardless of their education and experience. What rubbish! Must all oncologists be cancer survivors in order to be a competent physician? It is by misleading patients into believing such illogic that activists and 'LLMDs' manipulate the ill and less informed, but it sure makes those docs seem like they are fighting for the cause. Good PR - bad healthcare.

Camp Other, you seem to not appreciate my questioning why doctors who have raped their patients are being seemingly protected by the Lyme activists, seemingly covered in attempts to thwart investigations and charges. It's been discussed before, so why bother discussing it again, you implied. True, but WHY are such physicians who are indeed being currently investigated for such horrific crimes still on the Lyme Disease Association's list of referral practitioners. Who is protecting who? Don't even try to tell me that they aren't aware of the situation.

What about the unfortunate woman from California who almost died due to port infection? Her ILADS doctor wasn't even a doctor. How's that for science?

Keep them dumb and confused, ILADS. That's the way to win this, not through science. Did I miss seeing the Jumbotron ad this year? A million dollars in advertising would have gone a long way towards a good drug trial on Maybelline nail polish and the impact of karmic trauma on the treatment of infectious diseases.

This is sarcasm, an unfortunate fact of life in Lymeland. How much injustice and radical patient exploitation do you think people like Henry and others can bear to listen to until they get so angry that they have to resort to trying to teach science to people who protect predators and others who think you can train your DNA. If you feel it is not appropriate to be outraged against such patient exploitation and anti-science, then I would question your motives much more than Henry's and others like him. Here's another. Anti-science indeed!
I'm here to tell you that I think chronic Lyme could be autoimmune.
Do tell? You think that Lyme disease, which is defined as an infection with Bb, is not really an infection, but rather an autoimmune disease? How does inserting the word "chronic" change the whole concept of a disease process from being an active bacterial infection to an autoimmune disease? Interesting. How about this approach. The people who have been diagnosing, treating, endangering, and exploiting thousands of patients for chronic infections don't know what they are doing and now everyone is beginning to notice. Heaven's to Betsy, could Wormser, Halperin, and the CDC have been right?
And I laugh at these stupid intricate arguments on whether or not there was 1 million or 700k people that had Lyme disease in Germany.
Those not so useless numbers and facts, they always get in the way of a good medical and science debate. :roll:

**No! It is not enough for scientists or physicians to only focus on diagnosing and treating infectious diseases or any other illness. Ethical physicians who dare to take on leadership roles in healthcare must also speak out in attempts to protect their patients against unsafe, unproven, and predatory medical practices. It's all part of healthcare. Bravo to those few brave ones!
.

Claudia
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Location: Connecticut, USA

Re: Bullying Borrelia

Post by Claudia » Sun 27 Jan 2013 19:38

TicksSuck wrote:
Claudia wrote:Henry has previously stated why he has been on this forum, and again, I have appreciated it.
Hi Claudia,

Is this it, or is there more covering that subject that I have missed? http://www.lymeneteurope.org/forum/view ... ere#p26083

I was wondering too about the reasons some participate in this forum. I appreciate their participation nonetheless. In the case of Henry, he seems to bring some valid arguments, some "expert" opinions, and leave a lot of questions unanswered when he doesn't like where conversations are going.
This post:
Henry wrote: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.

http://www.lymeneteurope.org/forum/view ... 8&start=60
I have also noted that Henry leaves certain questions unanswered. His choice, of course, but we are left to speculate why that is.

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Muscle Car55
Posts: 39
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Location: Michigan

Re: Bullying Borrelia

Post by Muscle Car55 » Sun 27 Jan 2013 20:22

Bagge wrote:Do you still think your local pharmacies are conspiring and mixing up your medications, and intentionally giving you incorrect information about medications? What came of all that? Why did you delete those comments?
LOL

Perfect way to discredit me? Make me look like a whack job just as I incited many of you people do to Lyme patients, like the Letterman joke I told. I guess I'm a whack job because I incited that pharmacy can a mixed up prescriptions. That never happens!
http://www.upi.com/Top_News/US/2012/03/ ... 330908595/

I confronted the pharmacy nicely and eventually got to the bottom of it. No one needed to know about it so I deleted the post. Mixups do happen, it's been well documented in the news. I was just concerned for my safety.

Anyways, back to topic at hand
Bagge wrote: Grow up ILADS. Take some responsibility for your actions and your members. Try, as hard as it may be to act like ethical, honest medical professionals.
LOL

Still waiting for the IDSA to take responsibility for their actions that have left me disabled and others. Two years ago I was able to benchpress 310 pounds 3 times, now have a hard time cooking for myself because they haven't updated their standard bloodwork tests, treatment policies, and not informing MDs of endemic areas. If you look at the way they take statistics, it's so poorly done it's laughable. I saw the stats last year, there wasn't one person registered in my area that had Lyme yet I know 7 people in my area, one being another family member.
Bagge wrote: You are either misunderstanding everything Henry and others before him have ever so patiently explained, or you are indeed turning up your nose to science. Scientists and physicians don't need to experience everything first hand, although granted
Sorry you think that way. But I think they need to when there isn't a foolproof test to measure if they're still an active infection in your body. I don't see what's so hard to understand.

And I find it interesting that many of the LLMDs who treat or have treated, either them or a family member has had Lyme.
Bagge wrote: Muscle Car do we need to fund the NIH for a study on whether nail polish colors effect the immune system? How much chelation should one person receive? Where is the science on that MuscleCar55? Should you, like you assert to Henry, have to volunteer to receive a few good bleach enemas in order to know they are dangerous?
The small amount of nut jobs that call themselves LLMDs doesn't even compare to the harm that the IDSA has done not informing MDs of how popular this disease is becoming.

You can bring up all the crazy treatments that you suggested, but honestly none of the 3 LLMDs I've seen ever suggests any crazy sh!t like that. But it's okay to bring it up because it makes us look stupid and you look smart. :)

RitaA
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Re: Bullying Borrelia

Post by RitaA » Sun 27 Jan 2013 20:36

Bagge,

It's only because I have these references handy that I'm posting them here. It's difficult for me to tell whether or not you are questioning the autoimmune theory of PTLDS (aka chronic Lyme) that the CDC, NIAID and others support, so please forgive me if I misunderstood your remarks.

MuscleCar55 wrote:
I'm here to tell you that I think chronic Lyme could be autoimmune.
and you responded with:
Do tell? You think that Lyme disease, which is defined as an infection with Bb, is not really an infection, but rather an autoimmune disease? How does inserting the word "chronic" change the whole concept of a disease process from being an active bacterial infection to an autoimmune disease? Interesting. How about this approach. The people who have been diagnosing, treating, endangering, and exploiting thousands of patients for chronic infections don't know what they are doing and now everyone is beginning to notice. Heaven's to Betsy, could Wormser, Halperin, and the CDC have been right?
http://www.nytimes.com/2001/07/10/healt ... all&src=pm
Certainty and Uncertainty in Treatment of Lyme Disease

By PHILIP J. HILTS
Published: July 10, 2001

[snip]

Dr. Phillip Baker, chief of the Lyme disease program at the National Institute of Allergy and Infectious Diseases, said researchers there were also planning a study to look into whether the constellation of symptoms called chronic Lyme disease might actually be an autoimmune disorder. That study will look to see if the body's defenses attack its own tissues in the same way they attack the bacteria.

Within two or three years, the researchers say, they hope to have some useful, and maybe even decisive, information from this research.

[snip]
http://www.niaid.nih.gov/topics/lymedis ... mmune.aspx
National Institute of Allergy and Infectious Diseases

The Role of Autoimmune Reactivity

The results of recent studies conducted by NIAID and intramural scientists from the National Institute of Neurological Disorders and Stroke indicate that T cells from patients with chronic Lyme disease are reactive not only against Borrelia burgdorferi-specific antigens but also against various host (self) antigens (Nature Med, 5:1375, 1999). Such antigenic mimicry might generate autoimmune inflammatory reactions that could be responsible for arthritic as well as some neurological symptoms associated with chronic Lyme disease. Intramural and extramural scientists are exploring the implications of this finding.

Antibodies against the OspA epitopes of B. burgdorferi also have been shown to cross react with neural tissue (J Peripheral Nervous System. 9:165, 2004; J Neuroimmunol. 159:192, 2005) as well as myocin (J Clin Microbiol. 43:850, 2005). Such antigenic mimicry may have the potential to generate autoimmune inflammatory reactions that could be responsible for the neurological symptoms associated with chronic Lyme disease. Intramural and extramural scientists are evaluating this possibility in greater detail. In this context, it is interesting to note that homologies between proteins of B. burgdorferi and thyroid antigens also have been reported (Thyroid. 14:964, 2004).

In clinical studies conducted by NIAID-supported extramural scientists, case subject patients with post-treatment chronic Lyme disease (PTCLD) were compared to control subjects without such symptoms for the presence of several human leukocyte antigen (HLA) class II (DRB1 and DQB1) genetic markers, some of which are known to be associated with the expression of autoimmune reactivity. The results obtained did not support the involvement of an autoimmune mechanism in PTCLD (J Infect Dis. 192:1010, 2005). However, since not all autoimmune diseases are associated with specific HLA haplotypes, these findings do not necessarily exclude that possibility. Definitive proof clearly would involve demonstrating the presence of significant levels of relevant autoimmune antibodies and/or autoreactive T cells in patients with PTCLD, but not in treated control subjects without such symptoms. A greater frequency of DRB1*0401, which has been reported to be associated with antibiotic-treatment resistant arthritis (Science. 281:703, 1998) was noted in the case subject patients. Although this finding appeared to be nominally significant (p <0.05), its biological significance is ambiguous since none of the case subjects considered had symptoms of inflammatory arthritis.
http://onlinelibrary.wiley.com/doi/10.1 ... 0895.x/pdf
Accepted: 5 November 2003

Clin Microbiol Infect 2004; 10: 598–614

Lyme borreliosis: from infection to autoimmunity

S. K. Singh and H. J. Girschick

Paediatric Rheumatology, Children’s Hospital, University of Wu¨ rzburg, Wu¨ rzburg, Germany

ABSTRACT

Lyme borreliosis in humans is an inflammatory disease affecting multiple organ systems, including the nervous system, cardiovascular system, joints and muscles. The causative agent, the spirochaete Borrelia burgdorferi, is transmitted to the host by a tick bite. The pathogenesis of the disease in its early stages is associated largely with the presence of viable bacteria at the site of inflammation, whereas in the later stages of disease, autoimmune features seem to contribute significantly. In addition, it has been suggested that chronic persistence of B. burgdorferi in affected tissues is of pathogenic relevance. Longterm exposure of the host immune system to spirochaetes and ⁄ or borrelial compounds may induce chronic autoimmune disease. The study of bacterium–host interactions has revealed a variety of proinflammatory and also immunomodulatory–immunosuppressive features caused by the pathogen.

[snip]

[page 606]

Autoimmune features of Lyme disease

One potential explanation for antibiotic-resistant Lyme disease is the generation of autoimmunity directly or indirectly mediated by the pathogen and based on molecular mimicry. Gajdusek [135] has suggested that axonopathy in a variety of neurological diseases might result from antiaxonal antibody production, and anti-axonal IgM antibodies have been demonstrated in the serum of patients with neurological Lyme disease [136]. Genetic linkage studies in adults with Lyme arthritis have demonstrated a link with MHC class II molecules DR2 and DR4 [137]. In addition, these patients develop anti-OspA antibodies correlating with the duration of their arthritis [138], suggesting that OspA may be involved in the autoimmune process. Self-reactive T-cells may maintain local inflammation [139].

[snip]

These studies were supported by the analysis of molecular mimicry in chronic neuroborreliosis. Hemmer et al. [154] demonstrated elegantly that several T-cell clones were responding to Borrelia peptides and endogenous host peptides. So far, these data on autoimmunity have been generated from adult Lyme disease patients. Comparable data on the pathogenesis of Lyme disease in children are pending.

[snip]
http://www.cdc.gov/lyme/postLDS/index.html
Post-Treatment Lyme Disease Syndrome

Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease).

[snip]

Page last reviewed: January 2, 2013
Page last updated: January 2, 2013
Content source: Centers for Disease Control and Prevention
National Center for Emerging and Zoonotic Infectious Diseases (NCEZID)
Division of Vector-Borne Diseases (DVBD)

Camp Other
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Re: Bullying Borrelia

Post by Camp Other » Mon 28 Jan 2013 0:59

I leave to go off and do other things, and come back to all this excitement...
Bagge wrote:
Problem with you and many others is you're not going to believe anyone until you've experienced it firsthand.
You are either misunderstanding everything Henry and others before him have ever so patiently explained, or you are indeed turning up your nose to science. Scientists and physicians don't need to experience everything first hand, although granted, it would perhaps give some a bit more compassion towards the suffering of others. This would especially apply to rare diseases that are not easily diagnosed or those with symptoms not readily visible, the 'hidden illnesses'. It would also possibly give them more tolerance against patient-activists that do stupid human tricks - things like publicly accuse them of committing federal offenses without any apparent evidence.
I think more compassion towards the suffering of others would go a long way, personally. It would help - even if doctors do not agree with their patient's own self-diagnosis or test results come back inconclusive.

Given that we now have evidence that some people get ill with Borrelia miyamotoi and it is harder to diagnose than Lyme disease due to few people getting EM rashes and having tests which are negative for Lyme disease, it is important that doctors believe their patients when they say they got a tick bite and think they might have Lyme disease even if they have no rash. Treating the infection as soon as possible is more important than the patient getting the name of the disease right - the doctor can tell them they call it relapsing fever if they want or just say "Borreliosis".

Re the federal offenses: If any are committed, that's for a court of law to determine. I am still not completely clear on what all the accusations are/were. If you are talking about the anti-trust investigation, I was particularly ill when that was going on and not blogging or looking into all of this Lyme controversy as much yet.
Bagge wrote: Now, what does (not) need to happen is certain 'LLMDs' need to muster up enough support from people who either don't know better or refuse to learn, and then pit them against scientists and physicians who disagree with their opinions as to diagnostic and treatment protocols.
(not)? Why did you phrase it this way?
Bagge wrote: If ILADS and those doctors under who allege they are being unfairly persecuted by the medical boards want to stay in business, they need to keep the masses dumbed down about the patient injustices they've committed. That's fairly easy. They can do that.
Well, there are individual doctors and there is ILADS. I think that some individual LLMDs are pretty good doctors, and I don't see them making weak or unsupported claims - they try to treat patients as best as they can; they look for evidence to support their decisions such as clinical history, serology, symptom presentation; they rule out other conditions.

On the other hand, there are a few bad apples in the bunch (both ILADS and not ILADS) who have been involved and they need(ed) to go - or in my opinion, should not have become an LLMD in the first place. I've already written about one such doctor in my blog and also here (the doctor you seem so keen to bring up over and over is someone I wrote extensively about a while ago - thus my desire to move on, plus it was off topic for the thread).

I support doctors who are doing a good job and treating patients well, and who are professional and recognize when there's a need to refer out to other specialists in the patient's best interest. I do not support doctors who are engaged in egregious behavior and not doing their homework. But that's not just an ILADS thing - I support ANY doctor who is doing a good job and treats patients well and do not support doctors who engage in egregious behavior and don't do their homework.

I disagree with your statement that "the masses are being dumbed down about patient injustices". If any doctor has done something egregious, patients know about it - they compare notes; they offer references to see certain doctors and avoid others. They will vote with their feet and go elsewhere.

There are activists who want to avoid calling attention to doctors who have allegations made against them, and I think someone like you asks why that is. I think it's obvious:

First, if they are only allegations, the doctor may be completely innocent and any charges may be unfounded. Should one drag the name of someone else through the mud before they are even proven to be guilty of the charges?

Second, the allegations may only be minor and get dismissed - but you can still damage someone's reputation by spreading discussion about them widely.

Third (and this is number one on an activist's list) if a doctor loses his ability to practice or has to change the way he practices medicine due to some minor charge, they may not be able to treat Lyme disease patients at all (some of the board decisions boiled down to this, depending on where it happened). Patients do not want to lose their doctors.

It really boils down to that last sentence: Patients do not want to lose their doctors.

In my opinion, given this is the case - doctors should do the best job they can and treat patients well; avoid causing harm or at least take risks where the benefits:risk is high. I get upset when I hear about allegations towards an LLMD, and it's even worse when it's something serious and it turns out that those allegations were correct and weren't just about giving someone extra antibiotics but about someone really blowing it (e.g. harassing or raping a patient; injecting them with bismuth and killing them).

These are known issues. Any patient I know knows these individuals exist. But just because they exist doesn't mean there are not good LLMDs out there who are ethical, helpful, and try to keep treatment evidence-based and inexpensive for their patients. There are, and patients will continue to see them.
Bagge wrote: It's always easier to get someone who is suffering from one thing or another and provoke them with misleading propaganda in order to stir hate, fear, controversy and doubt. On a lesser level, most people master this approach in kindergarten - "Your mommy is a .... and your daddy said ....., so I'm gonna .... you..... Na, na, na na, na!"
If your concern is that patients are being stirred up by misleading propaganda in order to stir hate, fear, controversy, and doubt, what do you think is the best way to change that?

Not to put too fine a point on it, but there are people here who call Dr. MacDonald a troglodyte or tell him to go back to his basement in order to insult and mock him. So glad to know they've mastered this approach. But it doesn't strengthen their arguments/position or encourage respect for them in terms of their character.

So why do it? Why resort to ad hominem attacks and insults to make a point? You can disagree with someone else or think their research is flawed - whatever - without having to insult them.
Bagge wrote: An ILADS doctor of the past, or perhaps still a member, claims that wearing rainbow colored fingernail polish will boost your immune system or something about building T-cells or whatever. The reference is documented elsewhere on this forum. Try looking it up for yourself this time. Do you think it's appropriate, or even standard of care in the treatment of an infectious disease, for a licensed medical doctor practicing medicine in the United States (Washington state in case the FBI, medical boards or news outlets are reading this) to be telling patients that their choice of nail polish will have any significant effect upon their immune system? Yes, indeed, one can only hope that physician will come under 'persecution' from his respective medical board, and soon.

How about you Camp Other**? Do you paint your fingernails, or leave them natural? Would you suggest that low-income patients spend their money toward physician's fees and medical 'products', such as nail polish and similar treatments?
Um. No, no nail polish here. I wouldn't wear nail polish under any circumstances I can think of, either. :roll:

And actually, I think wearing and inhaling nail polish can have a bad effect on one's health - particularly if one is allergic to the components in it, has asthma, or for whatever reason is sensitive to chemicals in it. Even the NIH agrees with me:

Nail polish poisoning: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0003277/

You can also develop contact dermatitis from wearing it.

And no, I do NOT support this individual's claim that nail polish boosts T-cell production. He would have to provide evidence - and I haven't seen any.

Just because I said I was agnostic on alternative medicine elsewhere doesn't mean I'm in support of all of it or in support of spending money on products or practices which are tied to weakly supported claims.

If you are not sensitive or allergic to nail polish and wearing it simply cheers you up and you don't mind spending money on it - go for it. Just don't make the claim that it's boosting your T-cells because of it.

About the only argument you can make there in terms of your immune system is that because you're happier your immune system may be better off - but even then, you can also take a walk or sit out in the sun and the effect can be the same; both are shown to elevate mood.
Bagge wrote:
The physician was featured in Under Our Skin, surely he must be good if he was in a "documentary" sanctioned by ILADS and their many Lyme disease associations, including the group out of Columbia Hospital.
I've written in a review of that film that while I thought it was great in sharing the issues patients face and the problems they have with treatment and diagnosis that the film lacked discussion about the science involved in Lyme disease in terms of pathogenesis, serological testing, and related issues.

I didn't really get into the doctors chosen for portrayal in that film. I am somewhat mystified by the choice of that particular doctor in the film.

I don't think everything that physician does is a bad thing. But I do think a number of his practices and claims are questionable, and they should NOT be part of any set of treatment guidelines.
Bagge wrote: Read the posts by Henry and the journal articles by others. All they want is some real evidence that is not presented by a bunch of quacks and activists. Many of whom seem to have difficulty distinguishing truth from fiction.
All I want is evidence that Borrelia infections either do or do not persist in their human host, and that better treatments are being developed for someone like me.

I basically want the debate settled. It isn't.
Bagge wrote: By such assertions, only people who have had any particular disease are sufficiently qualified to to diagnose it, regardless of their education and experience. What rubbish! Must all oncologists be cancer survivors in order to be a competent physician?
I understand your position, but I will say one thing: Oncologists who are cancer survivors are definitely more likely to show compassion for their patients and intimately know the kind of suffering they are going through. It may not be the same kind of cancer or chemotherapy, but the impact on one's life of receiving that cancer diagnosis and side effects from treatment and worries involved are very much the same.

Same goes for anyone suffering for persisting symptoms related to Lyme disease. Anyone suffering from it would rather be treated by someone who has experienced its profoundly debilitating effects firsthand.
Bagge wrote: Camp Other, you seem to not appreciate my questioning why doctors who have raped their patients are being seemingly protected by the Lyme activists, seemingly covered in attempts to thwart investigations and charges. It's been discussed before, so why bother discussing it again, you implied. True, but WHY are such physicians who are indeed being currently investigated for such horrific crimes still on the Lyme Disease Association's list of referral practitioners. Who is protecting who? Don't even try to tell me that they aren't aware of the situation.
I am aware of it, just as many patients are also aware of it. I think I answered your question here fairly thoroughly earlier in my response here.
Bagge wrote: Keep them dumb and confused, ILADS.
Character assassination. Unfounded allegation. +2
Bagge wrote: That's the way to win this, not through science.
+1

(I have to wonder if I shouldn't use negative integers instead, though, to count these...)
Bagge wrote: Did I miss seeing the Jumbotron ad this year? A million dollars in advertising would have gone a long way towards a good drug trial on Maybelline nail polish and the impact of karmic trauma on the treatment of infectious diseases.
I think it's good to spread awareness about how to prevent tickborne diseases and put that message out in the public. At the same time, if I had a million dollars, I would have used it for research on Lyme disease and NOT on nail polish.

+1 for snark
Bagge wrote: This is sarcasm, an unfortunate fact of life in Lymeland.
Does it have to be? You have a choice to decide how to express yourself - as do I.
Bagge wrote: How much injustice and radical patient exploitation do you think people like Henry and others can bear to listen to until they get so angry that they have to resort to trying to teach science to people who protect predators and others who think you can train your DNA. If you feel it is not appropriate to be outraged against such patient exploitation and anti-science, then I would question your motives much more than Henry's and others like him. Here's another. Anti-science indeed!
I read those blogs, too.

This is the thing, Bagge: I think "training your DNA" and homeopathy don't work, either.

But just because those methods do not work is a completely different topic than whether or not bacteria can persist in a human host.
I'm here to tell you that I think chronic Lyme could be autoimmune.
Bagge wrote: Do tell? You think that Lyme disease, which is defined as an infection with Bb, is not really an infection, but rather an autoimmune disease? How does inserting the word "chronic" change the whole concept of a disease process from being an active bacterial infection to an autoimmune disease? Interesting. How about this approach. The people who have been diagnosing, treating, endangering, and exploiting thousands of patients for chronic infections don't know what they are doing and now everyone is beginning to notice. Heaven's to Betsy, could Wormser, Halperin, and the CDC have been right?
Well, it may be that Huber and co and Barthold are both right. I don't know. That's why more research is needed.

Would the NIH be investing in a xenodiagnosis study on Chronic Lyme disease or would they have invested in the PLEASE study in Europe if the debate about persistence was over?

And what about those antigens/Borrelia in the knee that MacDonald and Bockenstedt have been discussing?

Or Cadavid's B. turicatae serotype study in mice, and whether or not that model could apply to human hosts - at least some percentage of them? Can it apply to other genospecies of Borrelia? I'd like to see these questions answered.
And I laugh at these stupid intricate arguments on whether or not there was 1 million or 700k people that had Lyme disease in Germany.
Bagge wrote: Those not so useless numbers and facts, they always get in the way of a good medical and science debate. :roll:
I think knowing the number of cases is good. But I don't think it's enough? I think one has to know how often Germany does surveillance, where they drag flannel and how often, which bugs they look for (are they looking for B. miyamotoi or not, for example), how many trained entomologists with PhDs they have or even masters-level versus hired undergrads, how much climate change is affecting the numbers and future projections, how much money people are willing to invest in research for tickborne diseases and in treatment, how much insurance companies in Germany affect medical practice and decisions, and so on....

It'd be nice to have the bigger picture to know how decisions are made. Context.
Bagge wrote: **No! It is not enough for scientists or physicians to only focus on diagnosing and treating infectious diseases or any other illness. Ethical physicians who dare to take on leadership roles in healthcare must also speak out in attempts to protect their patients against unsafe, unproven, and predatory medical practices. It's all part of healthcare. Bravo to those few brave ones!
.
How many doctors in general practice call other doctors out on their practices? I'm not asking to deflect from your question (I'm willing to get into it more once my question here is replied to), I'm asking because I'm wondering how often it really happens that doctors point out other doctors and report them for any reason?

And how does one keep that reporting a "clean" process - how does one keep a competitive doctor from making claims against another doctor (refer to items in the news about Russian health care system regarding doctors there)?

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: Bullying Borrelia

Post by Lorima » Mon 28 Jan 2013 2:38

Why does anybody think that insulting and yelling at people is persuasive?
"I have to understand the world, you see."
Richard Feynman

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