posted
How discouraging.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- VERY, very wrong on so many levels.
It's unbelievable that such an article can appear in a major news magazine. Had this even been a school term paper, it would have received a failing grade for lack of research and adequate sources.
Sadly, lives will be lost due to this. Those with chronic lyme are now so much more open to verbal abuse from their family members and doctors - and I can't imagine how devastating this could be for someone new to all this who does not even know to look at ILADS website for real research.
To me, it sounds like Fallon is getting closer and closer to the IDSA with each new interview. Wish they had interviewed some ILADS experts and looked at neurolyme research findings.
This article has stellar examples of crafty put-downs. They must be really proud of themselves. I understand that evil can exist. But I thought that stupidity was an just a lack of availability to education. But stupidity - along with condescending attitude and patient abuse - are set like concrete in this article. And, yet it's also a stealth bomb.
Discouraged to the max. The absolute max. Criminal behavior by the IDSA, via a news outlet. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I left my two cents on the reply section. Just another example of media bias.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
It is upsetting, some of the things they say in the article....
....but I gotta say, if these were my worst problems:
"He says he's finally feeling more confident that he's fine, but he still wonders about the odd ache here, or the forgotten word there, or a spell of afternoon fatigue."
...I wouldn't be worried about Lyme, at the age of 65. Most of us here are seriously ill, so you can't really compare someone who has a random spell of afternoon fatigue to us.
So in a way, I am fine with that example...if his body is handling the Lyme exposure okay (and I realize this article is contending it is not Lyme exposure), I don't think he should be treated.
I think that if we, the Lyme community, freak out about every little ache and pain someone has, and say they need long term antibiotic treatment, that does our whole cause a disservice.
Because everything is not Lyme.
If this man was as sick as us, then I would really be offended, because in that case, why not treat, when you are that sick and you need help?
I'm leaving whether or not he has Lyme out of my opinion, and just saying, I don't think people should be worrying about the minor aches and pains of daily living....and I don't think that is a fair comparison to what we go through, so I am not offended that doctors said clinically, he doesn't seem to have Lyme.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
The last time that Newsweek published an article about Lyme, many people wrote to them.
They did publish letters the next week, but apparently they were impressed by the intelligent and thoughtful comments, because two weeks later, they printed three more letters.
I wish that author had taken the time to read Cure Unknown by Pamela Weintraub.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's not enough to post comments. It's time to meet face to face with the editors of magazines that do such an irresponsible job of reporting. I would love for ILADS, Pam Weintraub and Andy Wilson - and others who replied to the article such as Phyllis M from CALDS - to meet with the editors in chief and the owners.
Ah, but take a look at who their advertisers and share holders are first. My guess is there is a conflict of interest.
Also, these comments only make it to their web page. Our families who pick up a Newsweek at the store, won't see these comments to correct the mistakes or put balance to this.
I will say, though, there are some EXCELLENT Comments. I could not come close to being concise and intelligent enough to reply, though, so I'm glad others could do so.
Phyllis M, with CALDA is a bright and shining force - glad she replied. -
[ 08-25-2010, 02:14 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Well, we are the ignored minority. It is easy to dismiss us.
I wish him the right strain and immune system to get chronic Lyme, but of course that never seems to happen. We are like 1 in 100, maybe 1 in 1000.
Posts: 743 | From New York | Registered: Apr 2009
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posted
I wish I had the financial resources, someone like Bill Gates, to be the standard bearer for this movement and really get things done.
It is not comforting to know I might be tortured for a lifetime, only for them to figure this out after my demise.
People 50 years from now saying oh those poor people, will not be to my benefit.
Posts: 743 | From New York | Registered: Apr 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Here are the responses I left in that thread.
I have broken my posting into "two" comments.
There is an abundance of evidence demonstrating Borrelia can persist within specific body tissues and cells in-spite of adequate antibiotic therapy. There is also abundant evidence that borrelia burgdorferi has evolved in a manner similar to other bacteria that evade the immune system as well as morph into different forms other than the conventional spirochettal form. L-forms, and cystic borrellia have been identified in a number of studies. When these "forms" are exposed to the typical antibiotics -- such as Penicillin family antibiotics or Doxycycline, they are unaffected. When the antibiotic is removed from the environment, the bacterium will alter its form once more morphing back into a spiral form, while allows it to be mobile.
The truth is being obscured by "facts" that do not tell the real story. I have a list of all the studies done on "persistence" of borrelia in-spite of adequate antibiotics, and I have taken the time to "bold" the conclusions and various other aspects that clearly indicate a deviation from the point of view given by a number of physicians in this article.
It takes all of 5 minutes to read this list of well over 100 studies. The truth is. The infection can and does persist in people and that people do often improve with antibiotic therapy, however if they've been undiagnosed and untreated for a long period of time, it often takes longer to see progress in symptom reduction that the "double blind placebo controlled" trials have allowed for. Most of the NIH studies were under 3 months.
Patients with Chronic Lyme who have been untreated often do not see improvement until 4-6 months, and even still, the improvements are modest initially and require an ongoing "gradual" uphill climb back towards health.
The more time borrelia burdorferi has had to disseminate into various ligaments, bones, collagen, muscles, and other tissues, the higher the bacterial load both in "reachable" tissues as well as "unreachable" tissues. That is to say: Antibiotics can not access many of the areas that borrelia burgdorferi disseminates to unless the bacterium itself leaves the safe haven of a Fibroblast skin cell, or synovial tissue cells.
Am I being clear here? An infection is easier to kill when it hasn't "spread" into areas of the human body where the antibiotics are unable to reach. Different antibiotics have different penetrating capacities. None have the ability to reach all the places that borrelia can access.
Therefore, we have studies demonstrating abundant persistence. We have NIH funded studies that do not treat patients long enough to confirm whether the treatment really is effective or not. It is unwise to claim that long term antibiotic therapy doesn't work when you've only performed a study for 3 months, when the vast majority of the patients in the study have had the infection for many years and require at least 4-6 months before clinical improvements are seen. IV antibiotics may demonstrate symptomatic treatment sooner, but if that treatment is only given for 3 months and then discontinued, then it will be equally ineffective and the symptoms will return. Coincidentally, that's exactly what happened in Dr. Brian Fallon's study. Some symptoms improved, but then returned upon discontinuing therapy. Had therapy continued, the outcome would have likely confirmed what I've said here.
Recently I made a new post too
I'll gladly present the condensed evidence (abstracts) of persistent borrelia burgdorferi infection. All references are included. If you wish to confirm the sources of each article then you may visit pubmed.gov
There is more than enough information to justify at least a neutral position in respect to whether Lyme Disease persists in Human beings in-spite of the IDSA's recommendations. Due to this uncertainty one can not conclusively deny that persistence in human beings may be more problematic than assumed. If you do deny it completely, then you are probably a dogmatic, incompetent, hack who hasn't the least regard for scientific principles, and humane ethical conduct. If you aren't an incompetent hack, then at the very least you have some agenda which is anti-patient oriented, and thus unethical, and most likely illegal.
There is no other possibility. So which one is it? The science is unsettled, as is so obvious by the immense controversy among physicians and scientists. The scientific studies available contradict each other to a large degree. Even Dr. Willy Burgdorfer, the individual who discovered the bacterium, has concluded that borrelia burgdorferi is much more complicated than originally thought. He agrees, among many others, that Persistent infection does take place and may be the source of suffering in patients who have been treated "adequately" based on IDSA guidelines.
The IDSA guideline authors would have been well served had they listened to Dr. Samuel Donta in 1999 and 2000, when he recommended the Infectious Disease Of America's Guideline panel members included a sub-section in the IDSA's Lyme Disease Guidelines regarding the possibility that borrelia burgdorferi may persist in some cases, and thus require ongoing -- perhaps even open ended -- treatment based on objective, patient report and or other clinical observations.
Unfortunately, since the panel members did not agree with Dr. Donta, they conveniently "forgot" to invite and inform him of the conclusion and final details of their original guidelines. Not only did they not include him in finalizing the guidelines language, they did *not* include a subsection regarding the possibility of persistent infection.
It is my opinion that News Week reevaluate the issue. You may e-mail me at [email protected] for the evidence.
-------------------- 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
very nicely done Metallic Blue
Posts: 857 | From northern california | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, I'm very thankful for those who can write well to add their wisdom there.
Unless these letters are printed, VERY few people will see them at the web site. They need to retract that article. Unbelievable that, after the last one - with letters also pointing out errors - that they did it AGAIN. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I wrote the author directly on his personal website. Here is what I wrote:
Hello Russ, I've read your article in Newsweek and I commented on the article on the Newsweek website. I would really appreciate if you would consider my commentary as constructive criticism and a challenge to re-evaluate the research and complexity of Lyme Disease and other associated illnesses that can be co-transmitted with it. It is crucial that I communicate to you the significant damage that can take place as a consequence of an article like that which you've authored. It is not my intention to be condescending or offensive when I say that, and so I hope you will consider the dire pain and suffering of people who suffer from the fall-out of this illness and the incorrect information being disseminated.
The human side of Lyme Disease is a tragic discussion: Those we love abandon us, our doctors define us as hypochondriacs, and our families and children often lose everything. All the while, we face an uncertain future alone, feeling helpless, and feeling ashamed because we're told we're not really experiencing what we really are. Facts and information are presented by a group of physicians which do not reflect what is actually happening. We, as well as Lyme Disease, are more than the sum of their insensitive comments and dogmatic views, and we have the evidence to prove it.
We are lawyers, doctors, office workers, teachers, students, and we are suffering with an infectious disease that defies the current paradigm of modern medicine. Please evaluate the evidence yourself. I'm pleading on behalf of other patients, because I believe someone needs to.
Russ, I would not have written you if I didn't think you may be receptive to considering what I'm saying. I'm asking you to go further on this topic and save some lives and help reduce suffering.
You can find my commentary under the name Michael Parent.
Sincerely, Michael Parent
-------------------- 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.
This is another Newsweek article by the same author, about people who suffer from "cluster headaches."
Interestingly, he is much more compassionate toward the plight of sufferers here, interviews some, describes how they go undiagnosed for years, and tells the poignant story of how they find themselves resorting to illegal drugs (LSD and psilocybin) for effective relief. He points out that these carry automatic jail time for possession and are not available by prescription, unlike cocaine.
He cites sources and quotes a doctor who has been researching other drugs with similarities to LSD to see whether they work or not.
If he had written this Lyme article in the same vein, it could have been a good one. For whatever reason he wrote the Lyme article as he did, it doesn't seem to be because he lacks the knowledge of proper journalism techniques. Maybe he just chose not to use them.
I also have to ask, how many of those misdiagnosed and untreated sufferers of relapsing and remitting, neurologically triggered headaches, persisting for years, actually have tick-borne disease as the cause of their symptoms?
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I sent his this e-mail,which he proably won't read:
I read your article on Lyme in Newsweek online.
I contracted Lyme 2 years ago. Had the bullseye, a positive test and antibiotics.
When I finished the first 2 weeks of antibiotics and still felt ill, they told me to go home and not to worry about it.
Things became worse and worse and I found it hard to get treatment.
When I finally was able to get large doses of antibiotics, some symptoms disappeared and some abated. As soon as I stop, they get worse and come back. I can only surmise that it is a living bacteria that can somehow survive antibiotics.
Have you looked into the work of Dr. Ben Luft at Stonybrook University? He found that different strains of Lyme have different virulences and some don't invade the nervous system.
Lyme affects everyone differently, whether this is due to the strain or a person's immune system, or a combination of them both, I don't know, but it does. Typhoid Mary was a carrier, but didn't become ill. The plague didn't kill everyone. For whatever reason, not everyone gets Chronic Lyme.
By your story being one-sided, you did a disservice to me and all the other Chronic Lyme sufferers out there. Hell is already hard enough to bear without someone ignorantly throwing more pitchforks around.
Why don't you go talk to Dr. Sam Donta, who was on the first IDSA guidelines board.
Posts: 743 | From New York | Registered: Apr 2009
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posted
It was actually 3 weeks before they told me to go home and ignore it. Lymebrain.
The other day, for the life of me, I couldn't remember what an ostrich was.
Posts: 743 | From New York | Registered: Apr 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I already summarized the material by writing it as i had on the website. If he's not interested enough to step back and read it there, then he'll be too lazy or overwhelmed to read it in a lengthy e-mail.
I can't make the horse drink but I did lead him to water.
-------------------- 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
The parting shot: ``"The more you read about it,'' [Dr. Eugene Shapiro, director of education at the Yale Center for Clinical Investigation and professor of pediatrics, epidemiology, and public health and investigative medicine at the Yale School of Medicine] says, ``the easier it is to fool yourself into thinking you have every symptom.''
The best treatment for that condition, says Shapiro, is a surgical one: an ``Internet-ectomy.''"
What a flippin slap in the face... <grrr>
-------------------- "Yes, I'll have a Cosmopolitan... but please, hold the Lyme." Posts: 17 | From Maryland | Registered: Jun 2010
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