A Different Approach?

[LymeEnigma]

The Lyme Wars have been going on for a good twenty-five years now, and while some change has been brought about by the Lyme activist community, one still has to wonder what different tactics might make for an even more effective approach. Most of us are well aware of the rift that exists between the IDSA and ILADS and how it affects us, but how many of us have taken the time to consider what more we might do to end this ridiculous fighting?

I propose that we do take a different approach, in that we try to find a way to work with the IDSA on the issues at hand. Hear me out on this. Most of us agree that there are serious problems with their current guidelines and they are too stubborn, greedy, egotistical, or whatever to admit right now to the many life-ruining flaws in it. These people aren't going anywhere, however, and we won't get anywhere until we find some way to appeal to the IDSA and convince them somehow that changes do, indeed, need to be made. I suggest that we do this not by protesting or flooding them with calls and nasty letters, but by approaching the issue on their level: learn the science, compare notes on the subtle changes we all experience throughout each month ... do what we can to connect the dots, push for more research, and study and discuss the information we each happen to come across.

Anyone interested in joining my little think tank?

[hakutsuru]

Much has been made about the horrendous flaws in the IDSA guidelines. I believe that many in the Lyme community have over-exaggerated the extent of these flaws. However, these few minor flaws lead to sometimes devastating consequences for some Lyme patients. Nonetheless, they are minor, they would require little to repair, and such repair would go a long way in improving the treatment of Lyme sufferers. The issues with the IDSA are more of bad attitude rather than unsound science. Conversely, I believe that many in the LLMD community use unsound science or even pseudoscience to justify their treatment protocols. This is negligent (sometimes to the point of criminality) and only further confounds the problems encountered by Lyme patients.

Furthermore, I believe that mainstream doctors allow themselves to become crippled by dogmatic assumptions about Lyme that have no basis in the IDSA guidelines themselves. Likewise, the Lyme community itself is crippled by dogmatic assumptions about the disease, the medical establishment, and the cottage industry that has sprung up catering to the despairingly ill. By demonizing the IDSA guidelines--which are not without fault in this matter--the Lyme community misses a far more elusive and dangerous enemy entirely. It is this hidden enemy that allows to the imperfect IDSA guidelines to remain uncorrected, prevents doctors from appropriately diagnosing and treating, and encourages the parasitization of the Lyme community. This evildoer has yet to be identified or even named. It isn’t person or group but an attitude that infects this whole miserable mess. I hope that this board will chase the enemy out into the open so we can thrash it good. It’s tough to defeat an attitude but I am up to the challenge. I’m certain many of you are as well.

[LymeEnigma]

So, I did some Web surfing yesterday, and I found a letter ILADS recently published; it was written by Dr. Stricker and sent to a number of government officials. I'll admit, I've given into a lot of the mud-slinging that has been made against Dr. Stricker, but I found this letter to be quite impressive. You can find the entire text here: www.ilads.org/press_09_07.html.

One particular set of statements caught my attention even more than the rest:

A major problem is that Dr. Masur and IDSA refuse to acknowledge the existence of chronic Lyme disease, stating that there is "no convincing published data" to support the existence of this serious chronic illness. IDSA has repeated this mantra despite evidence from more than 19,000 peer-reviewed scientific articles that chronic Lyme disease does in fact exist. The problem is that IDSA does not accept this evidence and buries its head in the sand every time the evidence is brought up. In fact, IDSA refused to meet with ILADS to discuss our concerns before the IDSA guidelines were adopted. It is certainly hard to convince an organization that doesn’t want to listen to the opposite argument.

I guess this is going to be a little more complicated than simply gathering up the appropriate science....

[hakutsuru]

A major problem is that Dr. Masur and IDSA refuse to acknowledge the existence of chronic Lyme disease, stating that there is "no convincing published data" to support the existence of this serious chronic illness. IDSA has repeated this mantra despite evidence from more than 19,000 peer-reviewed scientific articles that chronic Lyme disease does in fact exist. The problem is that IDSA does not accept this evidence and buries its head in the sand every time the evidence is brought up. In fact, IDSA refused to meet with ILADS to discuss our concerns before the IDSA guidelines were adopted. It is certainly hard to convince an organization that doesn’t want to listen to the opposite argument.

I would like to know more about these 19,000 articles.

[hakutsuru]

If you are interested in finding out more about these 19,000 articles: www.lymeenigma.proboards104.com/index.cgi?board=
treatment&action=display&thread=1189896167

(edited to prevent scrolling)

[LymeEnigma]

Okay, so maybe we still do have a chance, should we actually stick to the science....

[LymeEnigma]

See the thread, "My Proposal":
www.lymeenigma.proboards104.com/index.cgi?board=
activism&action=display&thread=1190160039

[cave76]

I'm just starting to wade through what I've missed so far, so excuse me if I bring up something already covered.

****I guess this is going to be a little more complicated than simply gathering up the appropriate science...****

I'm going to say (with humor) that that's the understatement of the year. LOL

About Stricker. He's my llmd. I've been with him since when he first started seeing Lyme patients. A close friend of mine 'discovered' 'encouraged him' although he was already on his way, voted one of the top docs in S.F. before that.

He's an immunologist and a hematologist ---- and has a fine mind---- which I appreciate a lot. Please a witty sense of humor.

I'm not going to tout his way of treating as being the best. And I don't put him on a pedestal. He's pure ILADS in his way of treating which means, to me that follows their guidelines fairly strictly.

However I've always found him willing to discuss treatment with the patient. Even me! (But that's another story!)

[cave76]

Is there a way to edit (my typos)? And delete any post that is non-essential, as this one will be as soon as I get an answer. <g>

[cave76]

Study: Antibiotics helped 'chronic Lyme disease'

BY DELTHIA RICKS | [e-mail]

www.newsday.com/services/newspaper/printedition/thursday/
health/ny-hslyme115408570oct11,0,5197805.story

October 11, 2007

Some patients who had persistent memory lapses and other problems years after therapy for Lyme disease improved after antibiotic retreatment in a new study that continues the debate over the existence of "chronic Lyme disease."

The latest study, posted online yesterday by the journal Neurology, found that 37 patients treated intravenously with the antimicrobial known as ceftriaxone showed some improvement. The research was led by Dr. Brian Fallon of Columbia University's newly established Lyme and Tick-borne Disease Research Center. However, the study was lambasted in an editorial in the same journal, rekindling a raucous debate that has spilled from the scientific community into the public spotlight.

Fallon, who had interviewed more than 3,000 patients for the research, wound up studying only 37, and concluded retreatment may help people with long-term cognitive impairment. The study period covered six months of therapy.

The handful of participants were the only ones who met criteria set by the Centers for Disease Control and Prevention. Fallon's research also had a control group, which received a placebo.



Participants had reported long-term pain and problems with cognitive function. None had evidence of live Borrelia burgdorferi bacteria, which can be transmitted by the bite of the black-legged deer tick.



"They may have been unable to recall what they just read while reading a book; they might have problems with the speed of their thinking," Fallon said yesterday.



Beyond cognitive problems, some patients also complained of shooting pains, tingling sensations and cranial nerve palsy.

But Dr. John Halperin of New Jersey's Atlantic Neuroscience Institute wrote in the editorial that it's time to look beyond antibiotics. "Given the risk of considerable adverse events from prolonged antibiotic treatment," he wrote, "it is time to look elsewhere for an effective management strategy."



Halperin said Lyme disease has "an articulate, populist constituency ardently advocating for enhanced recognition." Their organizations support prolonged antibiotic treatment.

Fallon's center at Columbia was established with funding from two advocacy groups: Time for Lyme and the Lyme Disease Association.

He said neither group provided money for the study. His findings replicate results from prior placebo-controlled trials of post-Lyme disease symptoms. Fallon said he does not believe live bacteria persist in patients and cause their symptoms, but that certain antibiotics have properties beyond killing bacteria and act on neurotransmitters in the brain. As a result of that role, chronic Lyme symptoms are controlled.

But Dr. Richard Horowitz, president-elect of the International Lyme and Associated Diseases Society, said he treats patients with prolonged antibiotic therapy because he has laboratory tests that show the bacteria persist in patients.



The public row revolves around whether chronic Lyme disease is real.

Doctors from Yale, Harvard, the CDC, the Infectious Diseases Society of America and New York Medical College say the diagnosis is questionable and that antibiotic therapy that persists for months, even years, is dangerous. The society discouraged prolonged antibiotic use last year, and a special society task force issued new treatment and diagnostic guidelines.

Richard Blumenthal, attorney general for the state of Connecticut, is investigating the society. He said the guidelines might prevent some patients from receiving treatments they need.

"We are not taking sides as to whether long-term antibiotics should be provided to victims of Lyme disease. We are questioning whether members of that panel received benefits or fees or other kinds of compensation," Blumenthal said.

Dr. Raymond Dattwyler, who for years studied Lyme disease at Stony Brook University Medical Center, said there "is no such thing as chronic Lyme disease." He is now at New York Medical College in Valhalla where Dr. Gary Wormser, who headed the panel that set new Lyme disease guidelines, studies the infection. Wormser also said he doubts patients become chronically infected.

"It will take years to reach a solution on this. ... If there is a breakthrough, all of this argument might go away," Wormser said yesterday, adding "but there is still a Flat Earth Society, so it's not likely that everyone would be convinced."

Copyright © 2007, Newsday Inc.

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[LymeEnigma]

Wow ... a lot of opinions in that article; I can't wait for some of the statistical analysis and such on the study are presented.

[LymeEnigma]

There are variables within our control and variables that are out of our control. Our actions regarding both speak loudly of our community as a whole ... which, unfortunately, happens to have a reputation for hysterics and dramatic responses to most assumed adversaries. I've written legislators, I even singlehandedly had May declared Lyme Awareness Month here in Nevada for 2007 ... but I've read some of the other letters that have been contributed to those "Calls to Action," letters to Oprah, etc. and I can see why so many lawmakers are so apt to ignore any and all things "Lyme."

The Lyme community's attitude and image needs an overhaul.

1. ILADS:

They need to require full (and legitimate) referencing for all of their publications, to legitimize their stance, their practices, and their names.

They need to regulate diagnostic and treatment guidelines, so that those using questionable diagnostic criteria or treatment protocols do not blemish the names of others in their group.

They need to adhere as strictly as possible to the scientific method, not rashly jumping to conclusions (i.e. Stricker panel) or pulling facts from their rears when the puzzle doesn't quite fit right or the science is still not clear.

ILADS needs to clean house, have a long round table on how they're going to use real science to take their goal to the next level, and then set up a system to ensure their practitioners follow whatever plan of action they choose to take.

2. Patients:

We all, as a group, need to calm down, take a step back, and take in the entire picture from an Gestalt approach. A huge problem exists online. Anyone who has gone to Lymenet or HealingWell knows very well what I am talking about. Lyme hysteria does exist, and it does nothing but offer fuel to all of those jerks in the IDSA who want nothing more than to peg us all as hypochondriac whackadoos. The press has a field day whenever we make a stir, because usually the attempts are so emotion-driven that all things intelligent end up falling by the wayside.

These "Calls to Action" put forth by certain organizations to flood legislators with heartfelt letters of strife and death whenever any tiny hick-town newspaper writes an opinion that opposes ILADS, for example: We need to learn to choose our battles, and we need to plan them wisely. What we need more than protests and hate mail is more organized efforts to fund more third-party research on the issues that mean the most to us: proper diagnosis and adequate treatment.

We cannot assume either side has any more truth than the other, because in doing so we blind ourselves not only to truths that might exist on the opposing side, but also to the falsehoods that may be perpetuated by the very people with which we have decided to ally ourselves. When we offer leniency toward those who we would otherwise deem shady, simply because they have a good bedside manner and are willing to plug IVs in our arms for as long as we want, we tell the medical community that we don't care about the truth -- but, rather, simply getting unlimited meds, no matter what the impact, personal or societal, wrong or right. When we try to make our opinions known, then, there are few left who are willing to take a chance on our integrity, as we have chosen our allies too indiscriminately.

We need to change the mainstream's attitude about the IDSA's guidelines. Unfortunately, the IDSA not going anywhere, so we need to find a way to ... politely convince them that another huge redraft is in order. The only way we are going to see any change in the way the rest of the medical community views their faulty guidelines is by backing more real, legitimate science, science too clear and undeniable that even the IDSA must concede. I'm sure that, with all of the money Lymies have had to donate to (for example) Dr. Jones, the LDA, etcetera, someone could come up with a way of ensuring places like Columbia University and others like it in Europe continue to have the funding they need to keep adding more pieces to the puzzle.

Because that's what this is ... not a black and white, yes-or-no, wrong or right answer to be sought, but an enormous puzzle of which science has but begun to fit together the pieces.

See the thread that spurred this new post at www.lymeneteurope.org/forum/viewtopic.php?f=7&t=268&st=0&sk=t&sd=a