posted
"Yikes, always knew Chronic Lyme disease was complete woo. It's called an anxiety disorder, get your meds. Even acute Lyme disease is looking to be a bit far fetched, now I am far from an expert but it seems a little bit out of a sci fi novel for a tick to harbor some strange virus, who proved this and what experimental data did they have? What were the experiments that prove that some tick borned virus is the cause of a human disease in the first place?"
I love it when silly people say silly things.
Posts: 34 | From Pennsylvania | Registered: Dec 2010
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quote:Originally posted by tiredlymie: "Yikes, always knew Chronic Lyme disease was complete woo. It's called an anxiety disorder, get your meds. Even acute Lyme disease is looking to be a bit far fetched, now I am far from an expert but it seems a little bit out of a sci fi novel for a tick to harbor some strange virus, who proved this and what experimental data did they have? What were the experiments that prove that some tick borned virus is the cause of a human disease in the first place?"
I love it when silly people say silly things.
Read up on Operation Paper Clip Tiredlymie, don't waste our time with your negative input, and pray you didn't get a co-infection!!
-------------------- NWOODS WI/ bit May08 diagnosed Jul08 Lyme March 09 symptoms return Ehrlichiosis pos.no Lyme? Feb 11 CD57=26 Mycoplasma 343 Babesia 55.2 HHV6 5.8 WB CDC POSITIVE 31++ 39+ 41++ 58++ 66+ 83+ WB IGG POSITIVE 31++ 34 IND 39 IND 41++ 58++ Posts: 55 | From the Lyme Mine | Registered: Dec 2010
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posted
Derek...I'm sorry if you misread what I said! I was quoting somebody from that blog who said that, and then saying they didn't know what they were talking about. ^^;;
Posts: 34 | From Pennsylvania | Registered: Dec 2010
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Camp Other
Unregistered
posted
Hi, I'm new to Lymenet, and I just wanted to say that this article in the Chicago Tribune inspired me to write my own 5 part critique and analysis of "Chronic Lyme: a dubious diagnosis".
I try to view part of it as if I were a reader looking at the issue for the first time and doing some research along the way, but found it difficult as someone who has already been dealing with the issue of Lyme for years.
Over time, I'm afraid that not enough of the public is going to bother to dig deeper on this issue because the journalists didn't encourage them to think. The journalists are just going to rely on pushing emotional buttons by portraying patients as victims and playing to the lowest common denominator by using ad hominem attacks and using experts from only one side of the story to help build their straw man.
What made this article worse than others is that it was widely distributed and generated many spin-off articles with similar sentiments - articles which are still opinion-based and very short on reporting the state of the science.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I made a simple post of short duration entirely dismantling their arguments. Not one person read it and refuted my statements.
Only a psychopath or self-interest driven agenda could lead one to deny these facts. Lazyness and a curious infatuation with armchair analysis without actually analyzing could be driving this behavior as well.
Regardless, the evidence stands, while all but the sane fail to acknowledge it's significance.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
What a bunch of smarmy, self-satisfied pseudo-scientists! The lack of compassion for the suffering of people willing to subject themselves to months or years of antibiotics is unbelievable.
Of course there should be more science, but don't expect us to sit back and do nothing in the meantime.
My hat's off to John S. for his persistent responses.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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quote:Originally posted by 4Seasons: What a bunch of smarmy, self-satisfied pseudo-scientists!
Exactly, I gave up after I found myself going in circles and having my words twisted.
Posts: 743 | From New York | Registered: Apr 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I've been in this long enough to know that counter debate is usually unnecessary. Just leaving the facts, and letting others make up their own minds is in my best interest. Can't debate against a cynic, only a skeptic. A cynic is someone who already has made their mind up and nothing is going to change it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Then they never address this is the article. Makes for a good comeback.
The LA Times has a good feature called "Blowback" where they will print an op-ed piece against an article. Hopefully, someone will write one that gets published.
If you Google "Los Angeles Times Blowback" it will take you to the site.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Someone had something interesting to say here:
"Metallic Blue-[Mike Parent]-How can we expect respect and credibility when you are posting your OWN "paper" that I cannot find in any peer reviewed respected journal?
Too many have taken the opportunity here and on the other articles/ blogs that cloned from the Tribune article, to market and post links that promote their business endeavors;so, where is our credibility??Perhaps if 'we' embraced the obligation and responsibility for not accepting or turning a blind eye to the predatory and unethical behaviors within and among our group ( patients, Drs and marketers) then we can regain some measure of credibility thru accountability! Instead we shoot the messengers--why??
Arkiehinny--these "negative" stories unfortunately write themselves and "we" have become our own worst enemies when we turn a blind eye to the unethical activities among us.
There may be 'reasons', but there is no excuse IMO for the too many "cashing in" while others of us are DYING of this insidious disease! and again that includes labs, Drs, patients, so called "authors",salesmen of "cures", "crafters" etc.
In my over 20 years of being a trained patient advocate I have seen things go from bad to much worse and no longer want to even admit that I too have this Disease. "Oh, youre one of THEM" is what I hear too often and frankly I can no longer blame them!!"
What do you think about this people?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I think they're on to something, personally.
When we're already fighting for recognition of this disease and members of the IDSA are ignoring the issue of persistence and are themselves publicly condemning the use of long term antibiotic treatment , the doctors who treat Chronic Lyme Disease have to be above scrutiny. So good at what they all do that they are beyond reproach.
This is kinda like the battle that feminists approached in the 1970s, I think - women had to be able to do a job many times better than men in order to prove they were equally qualified. I know it was a long time ago, but history often repeats itself and there are parallels. I see that in this situation, and see it in the case of the Australian doctors who were told they were quite mad for treating ulcers with antibiotics when just about everyone in the medical community thought stress caused ulcers. It took them *10 whole years* before people began to look at them seriously. The battle we're having here has been going on for much longer - should it have been? Why did it take them 10 years - when 10 for most suffering patients is, frankly, already too long? They weren't up against half the political BS we have been and it was still a long time.
I think that if you have a strong core of committed scientists and good research and doctors who rely on that research to form their treatment plans, then that's building more credibility than having a wide variety of different practitioners (both certified and not certified with widely varying qualifications and experience) with different treatments and businesses hawking them (both proven and unproven) that from the scientific and medical communities' perspective, both the condition being treated and those treating it and selling products to treat it are met with more disdain. These people aren't viewed as their peers or professional equivalents, and some of them are viewed in even a worse light than that - even if a portion of them are quite credible, professional, qualified, and so on.
And I'm sorry, I didn't write it, it was in the Tribune - but if it were true what they printed, charging $15,000 a MONTH for Lyme and coinfection treatment is insane. The public thinks it is insane. My primary care physician thinks it is criminal. And I feel sorry for anyone who desperately needs treatment thinking that's what they have to pay.
Doctors who charge that kind of money *are* going to be closely scrutinized, and is that wrong? I don't think so. And paying more money does *not* necessarily mean one gets better treatment. Given the state of our health care system, we can already see on a larger scale that isn't true. =(
My LLMD charges far less than that, and tries to get patients the best deal on treatment possible based on their ability to pay and what insurance - if any - will cover. My LLMD sounds more ethical and is working to be beyond reproach - why don't they *all* do so? Until then, the media is going to continue to look for the bad apples and write about them.
I think if we want more advocates and believers from the larger medical community and general public, then more people who are either not LLMDs (who have an obvious stake in the proceedings, for good or ill) and who are not patients but believe patients need treatment based on scientific research are going to be the people to get on our side.
I wrote about this in my blog late last night - why not talk to Dr. D and Dr. V and Dr. B (I'm trying to not break any rules here, but this is hard - these last two are *not* LLMDs and academic researchers who happen to have doctoral degrees) and get *them* to advocate for more research and change? They believe in persistence, and two of them were IDSA members themselves and one was NIH. Or the people who actually did the research everyone has been so readily citing? The allies are the people who have already seen it with their own eyes. And they have more credibility than I - and many others - will ever have, because they are professionals in their field and I am not.
posted
It would be nice Camp Other, but the realities of the situation have made it into what it is.
The ship of idealism often sinks against the rocks of reality.
Hopefully a horde of these people you speak of eventually materialize or there is an amazing breakthrough that proves Chronic Lyme without a doubt, which just may happen one day. I see glimmerings of hope in the future, but not in the near future.
Undeniable proof of the disease and a real cure is what is needed to purge us of the charlatans and those who give little assistance for much gain. Otherwise there is always someone wanting to make a quick buck off the desperate.
Posts: 743 | From New York | Registered: Apr 2009
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Camp Other
Unregistered
posted
John S,
You sound kinda cynical about this. I'm not necessarily being idealistic. Has anyone spoken to the one doctor and two academic researchers I mentioned who believe in Borrelial persistance and asked for their help? Asked who else *they* know who believes in persistence who would be willing to talk to the media about their research and somehow put it into lay person's terms?
Maybe it's already happened that people have contacted these researchers and asked and I don't know about it, but if so, I'd like to hear about what happened because I've heard nothing.
It's possible those who disclose their views on persistence don't even have to openly support ILADS or the patient community in order to do so - they can be representing themselves and their research. All they have to do is support the model of persistence and get more publicity for their work in order to counterbalance the media blitz we've been seeing lately.
Awareness is already on the table. A lot of it is misinformed. More information in the public from the people studying the actual bacteria would go a long way to at least make people doubt what they' ve heard - if not reject it entirely.
I don't know if Chronic Lyme can be cured. And after reading Dr. L's research, I wonder if some genotypes of Lyme are easily cured and others are not. It's now known there are a few relapsing genotypes and not just hermsii everyone is familiar with, and just that info alone changes the playing field.
Frankly, if I could just improve my quality of life on an ongoing basis so my health was stable and I was consistently more functional, I could accept a maintenance treatment that worked until a cure was found... sort of like a diabetic has insulin but there really is no cure yet. The trick here is to at least ensure everyone has access to the equivalent of insulin.
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posted
Oh I'm all for changing the situation. And it would be great for some more experts to come forward and state that they think persistence is a possibility and hopefully they would be heard. But I don't think you are going to beat down the current mindset overnight. I posted my persistence links in my posts on the Tribune blogs, they were ignored.
You say, "the doctors who treat Chronic Lyme Disease have to be above scrutiny."
This is all nice and good, but by whose opinion is someone doing something not up to par. Are all those who are undertreating not up to par? If you got rid of those, we wouldn't have many left. How many great doctors are flocking to the field? A few saints, but not many. And then if you do censure some of the bad ones, even if we achieved unity in the community, you wouldn't stop the desperate from seeking them out when they are the only doctor within 200 miles who can treat someone.
I applaud your idealism. Hopefully it works. If you can weld the fractious Lyme community together, when nothing else has, focus it, and police the few caregivers that have survived the persecutions, that we still luckily have, to a better standard that would be good. Lead on.
I'm not saying your ideas are wrong, I'm saying at this time they may not be easy to implement.
But hopefully they make some breakthroughs in the science soon. That is what will really make a difference.
Posts: 743 | From New York | Registered: Apr 2009
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posted
Right now your voice is just another shrieking in the maelstrom.
Keep shrieking. Over time enough people may listen.
Maybe you will be the Martin Luther King of Lyme and I am not being cynical.
This whole thing is mess of gigantic proportions. I wish I could multiply you by 10,000 to help fix it.
Posts: 743 | From New York | Registered: Apr 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I think people that are new to the situation are often idealistic John. It's not a bad thing, in-fact it can be refreshing as long as you ignore all the retreading trails. Motivated younger individuals will do a lot of retreading, but they may strike a new concept that I miss.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Idealists sometimes change the world Metallic Blue.
Posts: 743 | From New York | Registered: Apr 2009
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Camp Other
Unregistered
posted
Metallic Blue,
If you were thinking of me in your response, I'm not new to the situation. I've had Lyme for several years now, plus Babesia. I think I just started out on my path differently from others in that I got bit, got really sick, and found an LLMD fairly quickly after a bite.
And instead of seeking support groups right away, I toughed out what I was going through in the belief that by catching it early on, it would last at most months - not years - and that I could get back to my life plans I had before this mess began.
I was lucky in that I already had support from friends and family early on who saw what happened. A few people have not understood that I am STILL SICK. There is nothing I can do about them, other than point them to the studies of persistence I (and from my impression you're pretty familiar with) know about. Some people have shifted on that, and some are still confused because Lyme doesn't follow a disease progression they're familiar with.
It's only after continuing to be sick for a while - and inconsistently so (I was able to work full time for nearly two years in the middle of my five years of illness since the bite) - that I knew Something Was Unusual About This Condition.
After a few rounds of periods of remission and periods of disability, I began watching more of the politics of Lyme unfold online in regards to the IDSA guidelines review, reading Cure Unknown, and going to local support groups in person. I began doing more of my own research, too.
Being on some of these online forums is fairly new for me, so I'm still learning about them and what different points of view people have. Most of my online support and sharing up to this point has been on mailing lists.
I guess I just shared my Lyme story, without putting it under the typical heading. But I just wanted to share a bit of my background so you'd know where I'm coming from.
John S,
I don't know that I'm idealistic, as I've said before. I have my pretty cynical moments as you do, though you seem to be more cynical than I am.
What I'm writing about is trying to brainstorm different avenues of approach for how to get lots of people to recognize the problem of Chronic Lyme and consider that it could be possible - and that there are researchers and doctors who have already proven persistence who just need more exposure for their ideas.
What I want to know is what *hasn't* been tried before in terms of getting the needs of the Lyme patient recognized and addressed. I'm familiar with the bills in different states. I'm familiar with Lyme walks. I'm familiar with Ashley's PSAs (which I thought looked pretty good) and the green letter campaign and zillion other things that have been done.
I'm not sure I've heard much about going to those who have done the research proving persistence, though. And I think addressing the issue of persistence and getting support for that idea from credible quarters in the media would go further than my posting a list of citations on persistence to the poor excuses of journalism that masquerade as articles that have been circulating lately. Because even if I have been a researcher myself, it's in a different field, and my two cents as a patient have FAR less weight than a researcher who did the actual leg work.
By researchers I mean someone like Dr. V who wrote to the IDSA guidelines panel - V actually worked with a lot of the people that the Lyme patient community disdain and are angry with - and V spoke out against the IDSA. And then Dr. B, another well-known researcher who was interviewed who discovered the Bb bacteria and said he believed in persistence. These guys and whoever their friends are who believe in persistence could at least be getting the word out in the media that persistence can happen.
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-noun 1. a person who cherishes or pursues high or noble principles, purposes, goals, etc. 2. a visionary or impractical person. 3. a person who represents things as they might or should be rather than as they are. 4. a writer or artist who treats subjects imaginatively. 5. a person who accepts the doctrines of idealism.
I think Number three sums you up, maybe a few of the others too.
Anyway, I think your ideas on contacting researchers to speak out would be good. If you can get them to, you just have to have someone listen.
You seem to be brimmming with ideas and energy. You write well and most of them can be contacted by e-mail, so go for it. Just please don't pester them.
I have spoken to a microbiologist who said it is a possibility. I asked him to look into Lyme. I leave it up to him whether he wants to say or do anything.
Posts: 743 | From New York | Registered: Apr 2009
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posted
cyn�ic /ˈsɪnɪk/ [sin-ik] -noun 1. a person who believes that only selfishness motivates human actions and who disbelieves in or minimizes selfless acts or disinterested points of view. 2. ( initial capital letter ) one of a sect of Greek philosophers, 4th century b.c., who advocated the doctrines that virtue is the only good, that the essence of virtue is self-control, and that surrender to any external influence is beneath human dignity. 3. a person who shows or expresses a bitterly or sneeringly cynical attitude.
I don't think that's me. More of a skeptic.
Posts: 743 | From New York | Registered: Apr 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I understand where you're coming from now. Thank you for filling me in with your background.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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