posted
THAT IS OUTRAGEOUS!!!!! Why do I never get used to reading these lies?? I still get so upset when I read this stuff. Some poor, sick, undiagnosed Lyme patient is going to buy into this sh*%.
I've gotta go read something happy!! It is good, however, to see what's out there.
Posts: 246 | From south florida | Registered: Mar 2010
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quote:Originally posted by stillwater: This site is run by Steere and the Worm...
I think it's good that this was posted.
People need to be aware of the propaganda being put out by these *****...
- Very true...!! It's GOOD that you posted it, steve!
I was heading out the door when I saw that and just had to say SOMETHING!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I'm always amazed at how WRONG they are. Sure..90% of us get the EM rash. sigh.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yeah, I happened upon this site the other day. What a disgrace...I'm ashamed that this place set up shop in CT.
They've referenced research by Wormser and his cronies too.
Everyone should send this site a sharp but respectful email.
Kudos to Steve for pointing out this crock of nonsense...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
To put it nicely...
This is where scum floats off to when it croaks.
I like how they have recommended articles for people's viewing pleasure and the best they can come up with is the Forbes trash and other 4th rate garbage.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
This sums up my feelings.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Just because these guys (wormser, steere, et. al.) put themselves up on pedistals and flash their credentials, I don't believe anything they say...because "even rectal thermometers have many degrees"...
[the quote is from a doctor who presented at a conference my Mom went to a few years ago]
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I know this site is crap, and they probably won't respond, but I sent a "respectful criticism" letter to the site anyway. It bounced back as undeliverable. I tried again, emailing the director this time. So far it hasn't come back. We'll see.
The research they are referencing, besides being incorrect, is over 10 years old in some cases. Unfortunately, they are one of the first sites that come up on a google search, so they are getting a lot of traffic probably from people who are newly diagnosed. That sucks.
Also, I found it interesting that the site is a .com rather than a .org. If they are a 501C, why aren't they an .org?
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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posted
Odd, the only website I've ever seen without a "Contact Us" link.
Posts: 147 | From youngstown | Registered: Oct 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Of course they are going to say crap like that. The kickbacks must be awesome. POS
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It is very important that all lyme patients know the difference in the LDF and the LDA.
Some new to lyme may not know this. I called the LDF early on and was dumbfounded by what a phone volunteer there told me (they had a volunteer line years ago) -
I was told by the LDF: "Chronic lyme does not exist, it's just not possible. You must be dealing with something else. You'll probably feel better when you get more involved with life".
So, this thread helps when someone new to lyme stumbles upon the LDF site - or when their doctor, friend or family member says "See, the LDF say lyme is no big deal."
My father trusted the LDF and their experts, the IDSA, and decided that THEY were correct, not me. He was an attorney and it seemed standard to go to the IDSA for information.
After his death, it was clear that he would have been in the financial situation to help me. But he thought I was a malingerer because of what he read from the LDF / IDSA.
The humiliation of that is not about money or (possible) missed chances for treatment but that he did not know me well enough to trust me or think the head on my shoulders was wise enough to do proper research.
Our relationship suffered greatly because he could not trust me after reading from LDF / IDSA materials. THAT was the real sadness.
For those new to all this, the proper organization, based in truth about tick borne infections and respect for those affected:
posted
Need some advice here. This is the response I got back regarding a letter I sent to the ALDF Director. I need someone who knows more than I do to tell me what they think:
Dear XX,
Since the FAQ section has not been revised since 2003, I will ask someone to review that material to determine if any revisions and/or additions are needed. In the mean time, I will try to answer some of your questions.
Bands representing OspA (p31) and OspB (p34)are indeed specific for Borrelia; however, these proteins are synthesized only when Borrelia are grown: (a) on artificial laboratory media; or, (b) in the midgut of ticks. These proteins are not produced -- or produced in only extremely small quantities during human infection. The reason antibodies against these proteins are not used in CDC and FDA-approved diagnsotic tests is that antibodies against other cell-surface antigens, which comprised the CDC criteria for evaluating diagnostic tests, are produced in greater abundance. One should consider a test that was positive for antibodies vs p31 and p34, but not 5 of any of the other 10 bands considered by the CDC for a positive IgG Western blot, to be falsely positive. Such results just don't make sense.
These observations re: OspA provided the rationale for the OspA-based LYMErx vaccine in which immunization of humans results in the production of antibody vs OspA. When infected ticks take a blood meal containing antibodies vs OspA, Borrelia are killed in the midgut of ticks and thus prevented from migrating to the salivary glands where they then can gain access to humans and initiate an infection. Thus, LYMErx is a transmission-blocking vaccine and not a conventional vaccine (e.g., like a flu shot) that prevents active infection. If antibodies vs OspA and OspB had diagnostic value, such a vaccine would never have been developed and even considerd for use in humans.
The CDC does not claim that the results of conventional tests for the diagnosis of Lyme disease are inaccurate. Rather, they note that the results obtained depend greatly on when specimens are tested during the course of infection. Little or no antibody is produced during the first 2-3 weeks of infection; consequently, the frequency of seropositivity is low at that time and that is why serological testing is not recommended in patients with an EM lesion that occurs about that time. It has been reported that only 29% of patients with EM have acute-phase samples with positive IgM or IgG antibody responses to B. burgdorferi, whereas 64% have convalescent-phase samples with positive responses, 3-4 weeks later (Clin Infect Dis.47: 188-195, 2008). The sensitivity of 2-tiered testing (ELISA and Western blot) for patients with disseminated or persistent Lyme disease increases to 100% after 3-4 weeks. Similar results were obtained by other investigators using the relatively new VlsE C6 peptide ELISA. Thus, when properly used and the results interpreted by criteria established by the CDC, conventional FDA-approved diagnostic tests for Lyme disease are reliable and perform well for all manifestations of Lyme disease, except EM, which should -- for reasons cited above-- be diagnosed based on visual inspection. Only validated and standardized tests should be used for the diagnosis of Lyme disease; a listing of such test (there are a total of 42) may be found on the ALDF website.
Most of your question having to do with treatment can be answered by checking the IDSA guidelines for the diagnosis and treatment of Lyme disease. These guidelines are posted on the ALDF website and were not available until 2006.
Although some physicians advocate treating with antibiotics until symptoms disappear, there is a publication(Ann. Intern. Med. 107; 725-731) showing that, in patients with persistent arthritis and in the absence of any further antibiotic treatment, the symptoms of arthritis gradually subside with time and are gone by 9 years after antibiotic therapy. Although that happens for patients with persistent arthritic symptoms, it also appears to be the case for those with persistent neurological symptoms as well. Thus, although a short course of antibiotic therapy will cure infection, the symptoms due to tissue damage take time to heal.
Sincerely,
Phillip J. Baker, Ph.D. Executive Director American Lyme Disease Foundation
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't read the whole letter but jumped to the end, summing it up,
Quote: "Thus, although a short course of antibiotic therapy will cure infection, the symptoms due to tissue damage take time to heal." (end quote).
Yes, tissue damage can take time to heal - or it may NEVER heal unless the infection is addressed. And, even with treatment, there is a chance of permanent damage.
Also, how in the world is nine years out of someones' life acceptable for pain?
I strong disagree with them. And there are many medical citations to prove them wrong.
The WONK person at www.lymedisease.org has so many good articles to address that letter. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Mostly I've been trying to figure out why he thinks OspA and OspB are not good markers. I found at least one study that showed that they persist in 10% of people with chronic Lyme.
I get that OspA changes as the spirochetes leave the tick's gut, but if I wasn't vaccinated with Lymerix, then how would OspA get into me? Ugh.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It is not based in fact. That is just deceit to:
1) further ruin the test for those with chronic persistent lyme and
2) cover their tails about the vaccine having given MANY people lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My original MD pulled me to the side and showed me this site on his laptop to comfort me that 21 days of Doxycycline would knock this petty little infection out of my system.
Posts: 147 | From youngstown | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yep, amazing that the LDF never heard of how doxy can put the spirochetes into cyst from within 20 minutes - and doxy does not work on the cyst form of borrelia. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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